About the Blog

 

The Alzheimer’s Association created this blog to provide insights from the frontlines of Alzheimer research, to allow caregivers and those with Alzheimer’s to share their story, and to keep the Alzheimer community up-to-date on efforts to increase awareness and federal funding of research.

Our hope, is that alz.org|blog provides a place for all of those affected by Alzheimer’s — whether a person with the disease, a caregiver, a researcher, a doctor or an advocate — to continue the conversation.  We encourage you to share your voice.

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our vision is a world without Alzheimer’s.

  238 Responses to “About the Blog”

  1. I use Exelon patches. They have made all the difference. I have no trouble tolerating them and my husband says I am much better since I have been using them. I have to add, however, that I accidentally med a lady when accompanying my husband to his doctor appointment, who told me when we fell into conversation that she used arricept and it works well for her. She also happened to tell me that there is an alzheimmer's support group who meet in my area. I am planning to attend one of their sessions. I wish for any alzheimers suffers who read this comment to know that I share your feelings and I hope you find a medication which works well for you, as well as a well informed doctor and that you have a kind and loving caregiver such as I have. You are in my prayers.

  2. My Mother had been living with my sister who moved her to Mississippi, away from friends and family. Three years later I brought her home for a visit at Christmas. I was very surprised at the amount of decline in my mother. I told my sister, I would not bring her back, she was staying with me (my sister had been telling mom she was stupid and crazy). I found a doctor who specialized in Gereatrics (sp) and mom was diagnosed with Moderate Alzheimers. She was put on the Exelong patch first which worked great. She had been at approx. 60% cognitivily. With the patch she went to 80% and I was able to enjoy my mother for awhile. She too is sensitive to the adheasive (red circles), so we had to switch her to Arricept and Nemenda.

  3. I am glad to hear that your Mother is responding positively to the medications. There is another avenue you can try with her to maintain (if not slightly improve) her current level of function. Our brain follows the same principle as any other muscle – if you don't use it you loose it. Try playing simple word games with your Mom each day – you can play along with a TV game show, by a DVD game like Family Feud, or make up your own. The goal is to have fun but also stimulate her brain to pull out language skills. Be sure there are no right or wrong answers (in other words don't necessarily play by the rules). She will play along if she feels successful. You will need to determine where she is with language skills so that you don't insult her intelligence. Good luck with your new role and your mother is blessed to have a daughter that is willing to learn what is wrong and try to care for her accordingly.

  4. I have been unable to find comment, professional or personal on the subject of transference of affection from the spouse/caregiver to the paid caregiver. Although I understand this is not an unusual event in dementia, and I have worked hard at accepting and adapting, I still have times when I crash due to the rejection.

  5. Any comparisons made between family members living in US and other countries?

  6. My mother , age 84 ,moderately severe stage, was on Arricept and then taken off that and put on Namenda. She was doing fairly well , walking and talking and then went into the hospital and they gave her Moraphine for pain for a blocked bowel. If I could only turn the clock back, I wound have said NO, absolutely NO morephine. She digressed immediately and can no longer walk or barely talk. I am trying to decide if I should just take her off the Namenda. It is so expensive and doesn't seem to be of any value at this point. I heard the Etalon patch was only good in the early stages. Any other reccommendations? Missing Mom….

  7. My mother was diagnosed with Alzhiemer's about four years ago, was put on Namenda and Aricept but eventually neither were doing any good. I was caring for her in my home up until February of this year (2011) until she was unsafe alone, ended up in the hospital and then in a health care facility. The facility was more than happy to take her in knowing her diagnosis. It was taking Mom a few weeks adjusting, being more confussed, etc when one day she was evidently found sitting on the window sill with one leg out the window. She was not on any medication at this time. The nursing staff called me to inform me of this, to which I was very surprised. The next day I was called to have a meeting with the director of nursing and the social worker at the facility. The social worker told me over the telephone that my mother was no longer able to stay in the facility, that she needed to be in a psych ward and locked down unit, she proceeded to tell me this several times. I was shocked and angry with this woman to say the least.

  8. My mother DOES NOT belong in a phych ward, she has Alzhiemer's and the facility knew this when they took her in. The social worker told me that the doctor was going to put her on an anti- psychotic medication to which I agreed might help take the edge off. One week later Mom had a little incident with her roommate where she called her a few choice words ( mom has not memory of any of these incidents.) The doctor increased her medication and to date (almost 6 weeks ) now she has not had an incident but they facility is still trying to push her out. I have been trying to get Mom into another facility which is highly recommended although not as nice but the present facilitly gave her such a bad recommendation (social worker) they won't take her either.

  9. We are currently waiting for Mass Health to accept her (that takes an act of congress), and I'm not wondering if this has something to do with this treatment . What irritates me is that the social worker is lacking skills in dealing with patients, I have done some reasearch in speaking with other family members at the facility and 99% of them have had similar dealings with this social worker, the social workers mother is also a patient at this facility. My mother is 82 years old and has worked all her life in this country, it's a crying shame that can't get the care that she needs, and that Mass Health keeps giving us the run around and holding it up by continuously asking for more information,

  10. To everyone that has a loved one with Alziethmer's and Dementia . . . .
    1. Cherish everyday that you have with that person.
    2. Show them every moment that you love them and are there for them.
    3. Pay close attention, because they are communicating in a different way. But they are still loving you, comforting you, teaching you, and making you laugh.
    4. You are NOW their voice!!!!
    5. They understand what you are saying, they just can't respond the way you want.
    6. Love them! Love them! LOVE THEM!

  11. My mother had Alzheimer's disease. From diagnosis, in June of 2006 to her death, on January 29th, 2010, it was 3 and 1/2 years, that my mother suffered from Alzheimer's disease. She was prescribed Aricept. It helped in the beginning, but she went from mild to moderate to severe in a very short span of time. In addition to my mother having had Alzheimer's disease, I have an uncle(my only surviving uncle-my mother's brother) and an aunt(my mother's last living sister), who have Alzheimer's disease and the mother of a friend of mine passed away, not too recently, from Alzheimer's disease. My friend's mother had the disease , from diagnosis to death, 20 years.

  12. For the past twenty years, I have worked to provide the best vision possible to my patients. We are taught that the eyes are the windows to our souls. However, over the last two years both my parents have been victim to AD. It was very early on that I realized what the brain is unable to comprehend the eyes do not see. Consequently, it is through our souls that we must learn to communicate with our loved ones suffering with AD since they can not always see.

  13. My sister takes care of my 85 yr old mother who has mixed symptoms of moderate and severe. My mother is in a loop delusion that someone has taken "her baby from her" (this would be her 2 yr old great grandchild). My mother wants to call the police, get a lawyer,etc. This delusion has gone on for weeks and nothing my sister says or does makes any difference. My sister is wearing down rapidly and has given up trying to distract, calm, redirect, or rationalize. Has anyone ever experienced this, and what can my sister do?

  14. My husband was diagnosed at age 60. I was 50 and our daughter was 19. At first I was so angry and in denial now three years later I find that I get so frustrated trying to explain things over and over and I get so scared to think that ALL the responsibilities are now falling to me. The finances, upkeep of our home, raising our daughter, I feel so overwhelmed at times I think I'm going to have a break down. I'm told that I will have to get a full time job to help support our family and prepare for the upcoming medical expenses, but how can I work full time and take care of him? I'm so overwhelmed at times, I want to run away. He was on Namenda for a couple weeks and it made him very agressive and hyper. I was relieved that the doctor took him off of it.

  15. Very interesting and thanks for the information. I think this information is very useful. I want to share with you this information: PRESIDENT OBAMA SUPPORTS ALZHEIMERS. On January 4, 2011 President Obama signed the National Alzheimer’s Project Act (NAPA) into law. NAPA creates for the first time a coordinated national strategy to confront one of America’s most feared and costly diseases, a disease that will only plague more baby boomers as focus government efforts and ensure that appropriate resources are maximized and leveraged to find better treatments, a means of prevention, and ample care and supportive services for the millions of families with the challenges of this disease every day.

  16. Musings by Kaye…

    The End of Heroes?

    September…what a beautiful time of year as it ushers in the start of fall. The sky get bluer, the clouds more white and fluffier, the air has that clean crispness it. Even the grass has that certain crunch to it as you step upon the greenish blades heralding the change of seasons.

    Did you know, September also is Alzheimer's month. That's right – Alzheimer's month. Alzheimer's a word that strikes heart wrenching, knot in the stomach type of fear. A death sentence type of fear because that's exactly what it is. A death sentence…no appeal, no retrial. Yep, you hear the words from the doc in the white coat. "…I'm sorry to tell you this, but you have Alzheimer's."

    You sit there numb at first, until you finally are able to croak out the words, "Are you sure." your thinking, no hoping, a mistake has been made. But that bubble is burst as doc utters the words, "no, there's no mistake, the tests are conclusive. I'm so sorry. I wish I could have better news."

    Then good old doc, the one who took care of all the aches and pains of the past. The one who discovered your cancer, your pnenoeminia, your chronic asthma and yes, brought you thru it all, restoring you to good health stamped in red – CURED!

    But not this time. You could sense it, you could hear it, you could see it etched in the lines of his face…hopelessness, as he thrusts pieces of paper into your hand with that scribble doc writing called prescriptions.

    Suddenly it's over, done, finished the first step of many all leading to…

  17. That my friend is the start of Alzheimer's. Over 35,000,000 people have and are living with this dementia. Alzheimer's disease is the only cause of death among the top ten in America without a way to prevent, cure or even slow it's progression, according to the Alzheimer's Association.

    As the numbness starts to wear off and reality sets in you start to feel a number of varied emotions…denial, then anger almost a rage like feeling of abandonment. Why, why me God? "Damm it, God, how could you? I trusted you God. I worked hard to obey your will my life. I put my life in your hands. Why did you let this happen?"

    Silence, only your hollow words…you feelings, rattling around inside your head – your brain, soon, in a few years to be turned to mush.

    It starts slowly, you don't even notice it. But others do and the word spreads. "Did you hear about what happened to…."

    Soon, way to soon, you also recognize the subtle changes taking place. You gobble your pills hoping that maybe, just maybe those rainbow colored pills that cost hundreds of dollars will turn it all around. Like a bad dream, you will wake up…everything is ok.

    But it's not. The reality is, your on a death march – right to the grave.

    You start to lose memory, what day is it, time? Name, people, places…everyday things so common before to recall. But not now, each day more and more of you memory starts to fade. Yet you still can recall in in great detail the distant past in great clarity. But that too shall pass.

    Then there is the one that wanders. Who suddenly gets up and wanders aimlessly. First around the house, but then out the door. No notice, nothing said. Family members are beside themselves seeking help,direction from different agencies, only to find that the progress of horrific illness will get only worse as Alzheimer's tentacles reach out further enveloping others drawing them in, placing all kinds fear, doubt, as well as guilt as they watch helplessly their love one slowly, every so slowly die before their eyes.

    Physically, what happens, your body starts to stop function. Slowly at first,ever so slowly, yet ever so deadly. Balance, picking up things…a fork, a knife, even a spoon. Trying to get that morsel of food into a mouth whose muscles start to become atrophied. Bowels that begin to lose muscle control…going,going gone. Now you find yourself virtually paralyzed totally depend and embarrassed on others. Their called caregivers. Your Spouse, son, daughter, grandchild, brother or sister. Working 7/24 trying to nurse you…to comfort you, to clean up after your bowels soiled your bed linen. Again and again. It gets old in a hurry and it hurts – deeply.

    As a caregiver your life is no longer yours. Everything revolves around the dying love one. Day and night, night and day. All becomes a blur. Tired…yes oh so tired. The life of a caregiver done behind the closed doors. Love, obligation, then even hate…hoping that maybe, just maybe death will come quickly. But it doesn't. And the beat goes on….

    Caregivers, they are like you wanting to help the love one. But they desperately need help. A couple of hours off, time to get hair done. Time to just get AWAY! To relax.

    Think about that. You could, yes you could. If not you, perhaps you and a friend. Give that caregiver some well deserved rest. You seen the TV ads, caregivers in action.

    "The End of Alzheimer's Starts with me. And You." (Alzheimer's Association.) September is the month which is set aside to honor the unsung heroes across our land and around the world that care who walks the walk with their love one, trying to make the journey just maybe a little more bearable…hopefully.

    September – Alzheimer's month. The purple month. On September 21 awareness is going to be raised as Alzheimer's Action Day. Won't you help, please? Learn about this deadly disease. Join a local caregiver's group. Unite and led a hand. Take some time to turn off the rat race road and exit to lend a hand. Wear purple. Go USA you can do it, a little time, perhaps a donation to the Alzheimer's Chapter near you. Raise awareness…it can't hurt.

    Thank you.
    From the grateful heart of a pastor, who now is looking down the lonesome road of Alzheimer's. "God is good ALL the time."

  18. My mom has alzheimers and in the past week has seen my dad, her caregiver, as a stranger and has accused him of wanting to hurt her. When she is around friends and other family members she is ok with him, but as soon as my parents are alone he becomes a stranger to her. Has anyone else dealt with this and any helpful hints?

  19. Hi everyone. I just came on your web-site. I have been looking for a web-site like this for some time now. I am actually the patient who believes he has Alzeihmer's Disease as my symptoms are very similar to those I've read on ther NET. I am quite worried and saw a neurologist who I will not go back to. He ordered an MRI and an EEG and in a follow-up 5 minute session told me I was normal. Told me I was just going through the normal aging process and prescribed some meds which I decided not to even pick up due to the severe side effects which could cause further damage to my Coronary Artery Disease. I have apt with another Doctor for 2nd opinion. Will let you know. Herbert Philbrick 11-15-11

  20. My father-in-law was recently diagnosed with dementia. He scored a 22 on a MMSE examination last week. This week he will be going for an MRI and further testing by a neurologist.

    At this point both my father-in-law and mother-in-law are in denial that Dad has a problem. Dad is saying we are all "crazy" and Mom keeps saying "Oh, Dad is back to normal, he is fine". Last week my husband had a conversation with his Dad that Dad could not follow at all. My sister-in-law was visiting and Dad forget she was there visiting after he got up to change a thermostat and he walked away. How would you handle their denial of this?

    Dad thinks he is just getting an MRI due to his neck pain, he has severe arthritis in his neck.

  21. My wife has early onset of Alzheimer's Disease (somewhere between stages 4 and 5) and I now do all the food preparation. Coconut has been mention as a possible "help" in the treatment to reduce the impact of dementia. The following was in response to an e-mail sent to my wife's nephew who has an education in cooking….."Coconut oil has one of the lower flash or smoke points so you have to make sure that you keep an eye on it – don't walk away. As a result I would season the veggies in the oil first and salt and pepper.

  22. For the reasons that you are using the coconut oil I would also saute snow peas, sprouts (Mung Bean spouts like in chineese food), and throw in some pumkin seeds or peanuts and sun dried tomatoes. All of these veggies are hi in zonc and zinc really helps with memory. After that list, other veggies that are good to saute are Crimini Mushroons, Kale, Asparagus, and Broccoli. They also have a hi contect of zinc. Then any this else that you enjoy.

    The important part is that you don't over cook them you want the colors vibrant and the veggie still nice and crunchy. Plan to serve right away. Should not take long you are really just heating them up and cooking for a little bit. "

  23. Hey! I simply would like to give a huge thumbs up for the good info you may have right here on this post. I will likely be coming again to your blog for more soon.

  24. Elaine I don’t know if it will help or not, I just know that I take one half metformin a day to help keep my daeietbs undercontrol and that does work well for me with my diet,( I do know some people take as many as 3 whole metformin a day to help them, and they also forget things) but I must say I do forget things especially when I put something away so I know where to find it then when I go to find it I have forgotten where I put it. not all the time but sometimes . Alzheimer’s I know is a very bad disease to get, I have a friend whos husband got it and he would wander away and she would have to go look for him, in fact he got so bad she had to put him in a home which is not an easy thing to do to a love one. It sure would be nice if they could find something to help with this disease.

  25. A heart-warming story about a boy and his grandma, who had Alzheimer's. It's from the front page of the Huffington Post's Mother Day page: http://www.huffingtonpost.com/kip-patrick/forgett

  26. I spoke at the Board of Directors meeting for the California Southland chapter of the Alzheimer's Association about my mom and the inaugural Blondes vs. Brunettes game in LA. It would be super cool to get this posted somehow if it seems fitting! 🙂 http://alexmagiera.blogspot.com/2012/05/blonde-ha

  27. first time here… don't know how it works… sweaty after working and sweating in the yard (in hot Kauai, HI)… i want to be part of this ( i do have Early Onset AZH)… it would be good to do it with people that feel like i do… but i am pretty new at blogging… sending good vibes to all the patients and caregivers that follow this site… lilian

  28. what happens if someone misses their meds for an entire month? Arisat

  29. My husband Bob is in clinical final stage of Dementia/Alzheimer's. Two months ago I had to face the reality that I could no longer care for him by myself at home. I placed him in a nursing home and he has started to adjust pretty well there. I cry all the way home from visiting him almost every day. I can't wrap my head around the fact that this is his last and final home here on earth. I cannot get rid of the guilt when I laugh or have a good time or go out to dinner etc. I feel like a widow already and like a third wheel with others. I have noticed that some friends and even some family have distant themselves from me. Some won't go and visit with Bob because he doesn't know them. I don't want to hear from them at the end how sorry they are. One of them is his youngest son. I feel sorry for him when the end is here.

  30. I am new to this. My husband as diagnosed with early onset alzheimer's in November, 2010. He is now at moderately severe moving into severe stage. He has not known me as his wife since December 2010, but I am someone he trusts and am comfortable.

  31. My mother was diagnosed end of 2010 with dementia. She is now in a facility that accepts memory issues. She has shown significant decline within one year. Facility has not provided any significant stimulation After a few months she now has insomnia. No issues prior. She expresses concern who is going to help her when I leave and when am I coming back to see her. I feel she has been neglected. Doctor has no integrity and has lied to me and will not allow me or other family members to participate in care plan. I am now looking for a new home for Mom. Board and Care have been suggested but I am concerned they are not fully equipped or trained to provide care. Any suggestions relating to Board and Care?
    SNF and Asst Living are too expensive.

  32. I just found this website I am hoping to help researchers with earlier diagnostic measures since we have a family history of alzheimers and dementias. Now new studies and researches are connecting persons with add/adhd with persons who develop alzheimers later in life. Myself and my child have adhd and I hope we can be of assistance to the alzheimers community with early detection and treatment development. I have made the first step in contacting the clinical trial locator team.

  33. I have Alzheimer's and I have this disease. I am only 58 years-old. My is body is in good and I don't know if I can keep my job soon.

  34. my mom she is eighty seven, I had no choice but to put my mom in a nursing home in the dimentia floor,she was a liability to herself , her hemoglobin is critical,and her white cells are low,she is loose blood and her body is not producing new blood cells, my mom do not eat for almost six weeks and she is taking minimal amounts of fluids, she continues to sleep most of the day and she is getting weaker day by day, hospice is giving her murphine, I hate to see her suffering ,I have FMLA for my mom, I do everything for her in the nursing home,I love my mom .

  35. Could anyone out there help me with an indelicate matter? My Mother is 89 and was diagnosed with Alzheimer's seven years ago. She refuses to allow me into the bathroom so I can help her wipe herself after using the toilet. She does a poor job of doing it herself and causes quite a mess and extra baths for herself.

    She becomes extremely angry if I come in to help so I just hover outside saying I'm there if she needs me. Any suggestions that have worked would be appreciated.

  36. My mother has had altheimers for about twelve years. She has always been such a sweet lady. Everyone has loved having her around because she doesn't have a mean or unkind bone in her body. In the last three weeks she has gone farther andd farther downhill. On Monday the home called me becaues she had been having some trouble. They say she has been refusing to do anything asked of her. She has hit aides, spit medicine out in the face of the nurses, screamed no and that she wants her mother! (she is 90 years old) This is so uncharacteristic. I drove the six hours to see her and see what I could do to help and of course I was not able to get any farther with her than anyone else. She had been acting like she had a problem with her back, so I arranged to have the dr. schedule a back x-ray. I took her to the hosp for the x-ray and she refused. Started flailing her arms around, saying not to touch her. Asked over and over what are you trying to do to me. She is also nearly deaf, so you must get right up in her ear and talk loudly. She seemed so frightened. After leaving the hosp without the x-ray I took her to the dr. She was very cooperative with him and allowed her blood pressure to be taken and her heart and lungs listened to. We decided to put her at the nursing home area of the residence she has been at instead of the altheimers area. Upon calling to see how things had gone, they told me she was not doing well. The adivan didn't sedate her and they could not get any tests done. She won't eat and continues yelling. Now they are talking morphine just to get her sedated enough to get a urine sample, blood work, and x-ray. What a HORRIBLE experience for everyone–especially her! I don't know what to do now. She seems to be almost completely gone. How do you handle this stage? Emotionally, I am about done in.

  37. How can you go on with your day when you see your mother getting worse with this awful disease. I can not go a day with out crying, my mother is my best friend.

  38. My wife is now into her third year with alz and appears to be somewhere in the 5/6 stages. Recently she has become much more aggressive in here actions towards me and I am now wondering if these actions can develop into being harmful. I realize that she is not responsible for her actions while in the stages of now being herself and I have not read anything about this topic of just how aggressive a person with alz can demonstrate.

  39. Thank you for creating this blog to share our stories. My Mom was diagnosed at the same time my first daughter was born, it’s been a journey. My girls have been with me and their Nana every step of the way, and our love is unconditional. That is why we work hard fundraising and raising awareness. Please watch and share this video of my nine year old singing the song that she wrote for her Nana. It brings life to the disease, from the perspective of a child in a wonderful way.

  40. My mother was recently diagnosed with dementia, she also has additional problems that make the problem more difficult.
    She has the will to do things for herself but will not if i ask her to do it.She will for the techs that come to the house,but will
    stop coming soon i am slowing watching retreat into her mind,i am afraid she will stop eating and using her hands if she
    does not exercise and use the muscles she has.She is 90 years old has carpal tunnel syndrome,cervical stenosis,arthritis
    all which has been diagnosed as chronic.Doctors have medicated her into into stuper ,she is O.K now and healthier than
    most 50 year old,except what ails her now.I am running out ideas and can no longer rely on doctors,healthcare agencies
    as they too taxed and do not care.Help and suggestions.

    l

  41. Lorraine:
    I am 58 year-old and have Alzheimer's. It's horrible. And the medicines they give us makes it worse!

    Maybe it was all those shots the doctors gave us in the 50's. ? My children didn't have that many shots.

  42. Wow reading everyone's stories breaks my heart and I know I'm not alone!! My husband a and I live a half mile from my mom but in June she went knocking on the neighbors door at 5 am and woke them up!! And she walks out and of course is all confused!! So I'm staying with her I'm back and forth to my house trying to take care of her and her condo and my husband and my house and job! Everyday my mom wants out I want to go home she saids all the time! And she thinks she owns another house somewhere on the first floor. And she's up every night 2-3 am nothing keeps her sleeping at night until she's up for a couple of days then she passes out because she's so tired.tv doesn't interest her unless its Lawrence Welk! Lol:) well it depends sometimes history channel. When I put pandora on she loves the music it definitely helps music because ill be like remember this song and start singing the words and then she jumps in so it gets her going. People stealing her clothes all the time. She will read the local paper a alittle bit and talk on the phone alittle bit.I have a dr that comes to the house which is great!! She has bad knees and its hard for her to walk. But doesn't want to shower, brush her hair change her clothes nothing!! That's what aggravates me!!! I'm working on help to keep her in her home but its been hard and I'm trying that's the best I can do right!! I probably should bring her to my house but I don't want her waking up people in the middle of the night!! Stuck on what to do!!!

  43. What's to say? We have a miserable thing that is in our genes.
    We didn't do something we did to ours; we had it all in us all of our lives, and here it is.
    My grandmother had it, many of my uncles, too.
    Now it's my time.

  44. My mother died 4 years ago from Alzheimer's. To this day I feel guilty because we had to put her in a nursing home until her death. In my mind I know that was the only thing that could be done for her, but in my heart I still feel so guilty. My mother's mother was cared for at home until we could no longer safely care of her and she had to go to a nursing home. She had Alzheimer's as well.

  45. Hello, im new to this site my dad was diagnoised when he was 65 we took care of him at home he died April 5 2012 in his own room with us around him, very sad now we found out within the last year that his sister and brother are in mid to late stage of this horrible decease, im 52 i worry that i might get it i take vitamins and excise try to stay fit any input out there for me
    Thanks, ray

  46. I am experiencing a problem with your rss nourish . Don’t know why I am not bright to subscribe to it. Is there anyone getting equivalent rss problem? Anyone who knows kindly act in response. Thanks

  47. My mother also had Alzheimers and got a bit aggressive at times…I don't know of anything specific that can be done about it, every case is different unfortunately.

  48. My mother and aunt both had alzheimers.I, lost both of them .I, am involved with the orange county chapter of alzheimers assoication.I, will be a voice behind the scenes and will support this cause. Because many of us who have been through this have a long way to go. My prayers go to those who have to deal with this.Best advice get involved with an alzheimers meeting group as they have resources avabile. God bless thosewho deal with this daily.

  49. Having experienced Alzheimer's first hand with my mother (primary caregiver for yrs), aunt and both maternal grandparents, I would LOVE to write some blogs for this website. Can you advise how I might go about submitting? Thanks!

  50. The only living grandparent that I have had since I was a 6th grader doesn't even know who I am. I am 25 years old now and I still remember the first time she didn't recognize me. I was 19 and home from college for Christmas break. Me and Nanny were sitting right beside each others on the couch. My mom asked her to hand a present to Kelly(me) and she turned to me and asked who Kelly was. She had dementia and early onset Alzheimer's at the time so I was used to her being confused and asking me questions that she already knew the answer to, but to not know who her granddaughter was? Heartbreaking isn't a big enough word. I left the room and cried. I still cry. I am crying as I am writing this. Nanny is living in a home and has been since I was a senior in high school. She cannot walk or form sentences anymore. Just lays there and looks around and mumbles random words. I go in as often as I can. I feed her and talk to her. I know in my heart she can still hear me. She hears all about my life, grad school and running and boys, and I know she is proud of me even though she cannot express it in words anymore. When I hold her hand I can feel her love for me and I know she can feel mine. Dementia and Alzheimer's stole my grandmother from me. It's time to stop them from doing the same to others. I am here to share my voice and my story. I will stand and be strong, not only for myself and my family, but also for my sweet Nanny.

  51. I have posted and began working on a project called "Remember My Photo"

  52. My husband is 81 and has alz. I am 61. I don't know what stage you call it, but he almost all the time doesn't want to believe what I tell him. Like, this is his house, we both live here, the house wasn't moved here, I'm not going anywhere, I'm the only person who lives with him, I'm his wife. He says he thinks he needs to see a doctor, because he knows something is wrong. He can't or won't do his word puzzles anymore, he only looks at the front page of the paper. He got hit by a ford pickup truck in Nov. and has been worse ever since. He had a supposed URI a couple of weeks ago and that really sent him into a tail spin. They saw blood in his urine but culture had no growth of bacteria. He keeps going in waves of a little better days and then worse days. I'm having more and more difficulty getting him to go out in the car, so that we can do our shopping, etc. Since we just changed health coverage, we are starting all over with a doctor and neurologist. He is on Namenda but I think he needs something for his agitation he has at times. But how do take med for agitation if the agitation isn't there all the time?

  53. I am a member of the Degree of Pocahontas, the women's auxiliary to the Improved Order of Redmen. We have been raising money nationally for several years now. I am currently a State chief for Maine, and part of my duties this year is to raise money for Alzheimer's. Because Maine is such a large state and all facilities that specialize in Alzheimer's & Dementia are in the lower half of the state, I wanted to help out locally as well as nationally. I held my first fundraiser at the end of November and in just 3 weeks, raised $310.00. This has been split evenly ($155.00 each) between the national Alzheimer's fund and a local care facility, Woodland's Memory Care of Maine.
    Our organization has been touched by Alzheimer's many times over, and here in Maine, one of our sisters has just gone into assisted living. I hope this donation, though small, makes a difference in someone's life.

  54. I have been the full time care giver to my wife who has dementia. We have been togeather 35 years. It seems to my best recolection it started when she had pulmonary embolisms, bloodclots in her lungs. She has had a real bad back pain for a real long time. Dec.2013 finally had lumbar surgury for stenosis L-1-L-5. I believe the blood clots were due to being unable to walk enough for proper blood flow. She has been on pain meds from motrin to methadone as well as morophine for atleast 7 years. After the finding of the blood clots, we were going to visit a relative it was Sunday. She wanted to stop a the bank. She asked for me to wait……………she disapeared. Looked all over town. Saw a stranger leading her across street to a policeman. That was the beginning. Since then she had taken off a few times, I was in shower, or hanging laundry. We live in the country, large parcels of land. Luckly the neighbors would bring her home.
    Sorry for rambeling, does anyone believe there is a connection with long term narcotic use with pain possibly cause dementia?

  55. My wife has dementia, I bekieve it started when she was diagnosed with pulmonary embolisms. She had been dealing with back problems and taking pain meds for that for years. I first noticed it when she sat in the living room and didn't know where she was. She took off a couple times, luckly the neighbors brought called me. Her back pain went from needing motrin to morophine and dilaudid. She had bad spinal stenosis which we recently had surgury this past December.
    I was wondering if there is a connection with long term pain and narcotic use and dementia?

  56. I am a Chrisian and my Mother was diagnosed with Alzheimers, but still drives can send me money at western union, knows dl and ss# can still draw a clock and tell time, never had a brain scan done, but can't do bills anymore, hates mail,can't concentrate to read much, but I think maybe it's just dementia . She is on Exalon Patch which actually made her much better and I have heard that the Exalon patch is very dangerous and will hurt her more is that true?

  57. Mindful and Spiritual Living with Alzheimer's Blog: http://www.alzreflection.blog.com. 4/18/2014 blog entry: "Clarity of Thought"

  58. I am a 59 year old female diagnosed with ECI. It's. Even a year since my diagnosis. I am starting to experience some minor driving symptoms. I've talked to me children. They are not on board with this…..although over this past weekend we had a very open conversation. I'm letting it sink in before I bring up the driving issue again. I am in shock that I would be experiencing
    These con era so early. Since this has happened I have been on a roller coaster of emotions, the docs have put me on an anti anxiety med. not sure when this will take effect.
    I'm alone. I'm lonely. And worse yet I don't think the few friends I have divulged my condition to actually believe me.
    I have recently become an advocate for my local chapter. In hopes this is the answer to fulfilling my days!

  59. I'm new to this blog and reading the comments has given me some insight. My husband is 75 and has Alz. Looking back over his behavior of the last five years he probably had early onset, but I wasn't able to connect all the symptoms until last year when his cognition began to fail. Aricept helped him quite a bit for the first 9 months, but recently he began having more bad days than good (excessive confusion, sleeplessness, hallucinations) which culminated in a very ugly morning where he went outside at 5:30 a.m. and was furious to "discover" there was a broken light in our back yard. (There is no broken light in our back yard.) He's always been hot tempered but usually it blew over quickly. On this morning, he ranted violently threatening to burn our house down, threatening to kill the person who broke the light (and he claimed he knew who it was). He came just short of threatening my actual life. After this episode his doctor prescribed a low dose of Seroquel to be taken at bed time. He's been on it for two weeks now and there is marked improvement. So far, much less confusion, far fewer hallucinations and sleeping better at night. He's not really a wandering risk because he has such bad knees I know he wouldn't get further than about a block anyway. (I used to beg him to get knee surgery. Now maybe it's better that he didn't.) I work a full time job so I'm not home during the day. We have a caregiver come one day a week to provide some companionship, basically. I want to keep him a home as long as possible. It's a struggle and I pray everyday for God's strength & wisdom in meeting this challenge. My Mom had Alz and was in assisted living until she passed away. Even though it was a wonderful place, it still wasn't home. He thinks of himself as the main care giver for our dog. We love our dog so it's an important job. At least while he's home my husband has some autonomy, some choices. Small, though they may be, they matter.

  60. My wife and I retired early to care for my mother, diagnosed with Alzheimer's, in Mesa, AZ. We closed up our house in Denver and spent a year in a rental home caring for her. We finally placed her in facility. While caring for her, I noticed subtle changes in my wife, confusion, slight memory loss and never wanting to venture out on her own. I consulted my Doctor, who agreed to talk to her and make any needed referrals. Just last week, I received the dreaded confirmation, she has Alzheimer's. Next week we both visit the Doctor and talk to her about it. Until then, I spend my nights walking the floor trying to figure out how to help her with the news. She's only 61 and as I say "The new face of Alzheimer's". I'm glad I found this blog and hope others give suggestions and tell their experiences.

  61. My husband was diagnosed at 59 with dementia. Everyday I see a difference. I have a question. He has started have incontinence at night. Does this mean the dementia is progressing? Thank Nancy

  62. My name is Margaret. My mother Mary was diagnosed with Alzheimer's Disease in 2011. As a family, we started noticing changes about seven or eight years ago, but her situation became urgent in 2011. She was getting lost driving, forgetting her keys, had trouble managing her finances, along with other memory and judgement issues. She moved to and Independent Retirement Community in 2011, Assisted Living in 2013, and most recently a Skilled Nursing Home, as she has some other medical issues.
    I am a team leader for "The Longest Day". I am dedicated to fighting this disease to enhance my mother's quality of life, as well as others diagnosed with AD, and to prevent and cure this insidious disease for future generations.

  63. On March 25,2014 god needed my Papa more. He suffered from Vascular Dementia from a stoke he had 3 years ago. March 3rd he had a surgery to remove the fluid around his brain. 4 days later he went back to Bad Axe Mi for Physical therapy were he ended up having a minor heart attack. He was suppose to be air lifted to Saginaw Mi but the wind was to bad… He had a major heart attack on the way to the hospital ad died twice on the way. I got the call that morning at 6am from my Grandma with the news. I rushed to the hospital to see my grandfather on a ventilator. The image I never thought I would see. After a week of being on the ventilator they wanted to see if he would respond. I lived the closest to the hospital so I was there from 7am till 11pm every night. They turned down his sedation and I asked him to squeeze my hand, he did. After many tests were done we were pulled into the Crisis Room to go over our next step. He would be damned if he had to live with a tube in his throat on top of the Dementia. So the decision was made, for him to go in comfort. He was awake and we all gathered around the room as they pulled the tube out. Was the longest 15 minutes of my life. The first thing he said was to my grandma "Ma I want to go home!" He was later moved to the hospice floor. Me being a caregiver for Alzheimer's, Dementia and Memory impaired had just been hit with the reality of why I do what I do for a living. To help him through his journey and for him to go in peace. My Grandma was to have him sent back to the nursing home that he hated so much to live his remaining days. She slept on it and the next thing you know I am in the back of the Ambulance with him riding back to his actual home. Grandma wanted him to be where he wanted to be and that was at home with her in his living room. The words "I want to go home" never left his mouth again. He was home and I was his caregiver. I cleaned, changed him, did his vitals every 2 hours and turned him every two house and gave meds for comfort. I didn't sleep much! And if I did fall a sleep he would start yelling for my Grandma. Thank god for my mom other wise I wouldn't of slept the first night. Then my Aunts came the second night were we did 4 hours on and 4 hours off. I would have to jump up touch his arm and comfort him so she wouldn't wake up. The day came and I knew it was going to happen within the hour. How was I able to stay so calm and not let my Grandma, mother, or aunts know I knew? I know putting all my feelings a side was beyond anything I thought I could do. My mom started to catch on to me noticing it happening. I looked at my grandma, mom and aunts and said calmy "Sit with him and let him know its ok." We played Frank Sinatra to relax him. I jumped on the phone and went into another room to let hospice know I was giving more Morphine because his respiration was high and his BP was dropping fast. I gave it to him and the RN showed up to get ready to pronounce him. I sat on the couch behind him and watched him with his wife and 3 daughters surrounding him. They wanted me to get up and stand around him and say a few prayers. I just couldn't bring myself to do it. I knew my job was done and it was my time to let my emotions go. The music stopped in the middle of "As time goes by" they said one Are Father and one Hail Mary… He took 3 breaths and was gone. 3 days after finally coming home he went so peacefully. I may sound weird but his death was beautiful. To watch how loved he was and how I made sure he didn't suffer. It was so fast.
    After all of this I knew my calling in life was to be ready for him when he needed me, and to prepare my family for his journey with Dementia. It still hurts so bad because I didn't grieve like I should of. Writing this just brings tears to my eyes. But I know one thing I will never forget. 7 hours before he died at 12:10pm, my mom was helping me get his 4am meds ready. I leaned over him and said, "You know what papa, your the most handsome Grandpa in the world!" He looked at me and winked. It was the last time I would ever get to see those baby blues.

  64. We are currently taking care of my mother-in-law, Jennie, who has moderate to severe Alzheimer's. We have found a wonderful memory care facility and have her name on a waiting list. Jennie is very mild mannered and pretty agreeable to most anything. When we originally put her name on the list for the memory care center, we thought that she would do better in a single room. However, a double room has opened and we are debating whether or not to accept it. It is difficult to determine if being alone in a room or with a roommate makes an Alzheimer's patient feel safer or not. Does anyone have any experience with this? Will Jennie eventually recognize her roommate or will she wake up every morning and feel like there is a stranger in her room?

  65. Just walked to honor my mom down here in Florida. I walked 15.3 miles from my home to her Assisted Living, it was 93 degrees and humid. I did it all by myself with the support of family and friends who donated to this great cause. I am 61, it was a long walk but I did it! Deb Connor, Cocoa, FL

  66. My grandmother has been diagnosed with Alzheimer's for the past 3 years. Though those days of remission seem to occur from time to time, the beast still presses on. I actually take care of her on a daily basis and the challenge of taking care of a aging loved one is only compounded by her rate of deterioration. I have found that the best medicine in life is laughter and I have chosen to create a Facebook page that is not only dedicated to advertisement/solicitation-free information, but the lighter side of this disease. By lighter side I mean the cute, harmless but humorous events that take place with the people that we all know would never have occurred pre-illness. I am experiencing the pain of watching one of the most loved people in my life slowly fade away before my eyes so please understand this humor is based on respect and admiration. I welcome anyone and everyone who may have a story that they may like to share to join my page "Laughing Tears Social" and contribute, if not benefit, from/to a page based on the love of these undeserving victims. Thank you so much and God Bless! The link to the page is as follows: https://www.facebook.com/laughingtearssocial, or just enter the name on the Facebook search box.

  67. Having quite by accident devised a meditation technique which helped me see an end to a psychosomatic disorder, I felt that I might suggest mindfulness meditation to those who have very recently fallen victim to Alzheimer’s as a form of therapy that may retard the course of the disease. Meditation may well be worthwhile for those who would otherwise spend many hours not knowing what to do with their time spent alone.

  68. Lilly is 4 years old and is walking to raise money for the Alzheimer's Association in honor of her great-grandmother Nanny. Lilly is one of Nanny's 21 great-grandchildren. Nanny may not remember who they are but her life long love of kids if very evident when you see her light up when they walk through the door.

    When asked what the money is for Lilly will tell you that it is for the people who are sick with Alzheimer's. She will tell you that sometimes Nanny forgets her name or that she already gave her hugs and kisses but she knows that Nanny never forgets she loves her. We are so glad that Lilly has been able to spend time with Nanny and learn what a special loving person she is. As Nanny slips away from us, it is heartwarming to know that Lilly is old enough that she will always have a memory of her time with Nanny.

    Lilly has also held multiple lemonade stands this year donating all the money to the Walk to End Alzheimer's.

    Last year Lilly was one of the top money raisers on our walk team which was our team's first year. She would get excited each time we logged on and the status bar deonoting her level of money had been colored in more. At three years old she was going door to door and asking for sponsors on her own. She would say " my name is Lilly and I am doing a chairty walk for Alzheimer's would you like to sponsor me" She raised over $250. This year her goal is a donation from every state. Can you please help us spread the word? She has her map ready to mark off each state as they come in. We are so proud that at such a young age she has such a giving nature. Thanks for your help


    Lilly's video request

    You can keep up to date with her fundraiser here: https://www.facebook.com/events/308839069282890/?…
    http://act.alz.org/site/TR/Walk2014/PA-GreaterPen

  69. We had great success giving my Dad “Raw Brain 360” ..One quarter pill the first 2 mornings then one half pill the 3rd and 4th mornings. Keep giving a whole pill the 5th day and onward and never miss a dose. It is part of a treatment called raw glandular therapy

    .

  70. I moved in with my mom recently after she was diagnosed with dementia. Isee now(after yesterday's episode that I desperatly need alot more information and help. Any suggestions or ideas?

  71. I remember the day we took a picture of my Mother-In-Law on her 90th birthday. I took it with my phone. When I showed it to her, she said who is the lady? I then realized she did not recognize herself any more. It was very sad and I think about it often. She was a different person. It is a terrible disease.

  72. THIS IS THE FIRST AND PROBABLY, LAST BLOG BY ME, BUT JUST TO SAY THIS IS TO HONOR THE MEMORY OF MY WIFE BETTY WHO AFTER 6 YEARS LEFT ME AND OUR LOVING FAMILY MISSING HER GREATLY…WE HAD DISCUSSED THIS PART OF OUR LIFE AND SHE BEAT ME TO IT AND THOSE LAST HOURS WITH HER WERE THE GREATEST OF OUR 48 YEARS TOGETHER…..MY GRATITUDE TO ALL THE CAREGIVERS OUT THERE….AND..THE ALZHEIMER'S ASSOC….THANKS JOHN

  73. My father has Alzheimer's Disease. He was actually diagnosed 2 years before he told anyone and he was given a prescription for Aricept. He only took it for a short time and then he set it aside. In 2010 my step mother passed away and shortly after that my father moved in with me. It was then that I realized something was wrong. March 2 2012 my father had triple bypass surgery and he spent nearly 2 months in the hospital and rehab. I was going through the medication my Dad had and I found the bottle of Aricept with only a few missing from the prescribed dosage. Finding that bottle prompted me to talk to his doctors and they had already thought the same thing. After a series of tests he was once again diagnosed and put on mediation and although the dosage has changed some he is still taking it. I didn't know anything at all about Alzheimer's Disease but I jumped in with both feet. I contacted a professor I had in college and he suggested some books I should read. I have a degree in Social Work but my focus is on Addiction Counseling. I had learned so much and although this disease is progressing in my father, he and I are closer than ever and have a wonderful relationship. I am also disabled and he has gotten to the point where he needs more care than I can provide and he is in a nursing home that is very close to my home. I am very involved with his care. He always smiles and he is truly my inspiration. My parents devoted their lives to taking care of their family. My father who served in the US Navy for 20 years and then worked another 23 years after that…a man who was once so independent and now he is dependent on others. I have told him and others that I consider it an honor to be his daughter and care for him as much as I can. I have created a team and will be walking in my 2nd walk this year. Team Sweet William is named after my father and I plan to carry it on and become even more involved with The Alzheimer's Association in the near future

  74. After reading many post, I feel the same as others. Hello everyone,
    Thought maybe I should share a bit about how this disease has effected my family in ways no one had seen coming. About five years ago, my grandmother was told she had to retire. Since working from the age of twelve when the Great Depression occurred, this was a shock to her. She started to decline with hygiene as the first signs. But as family we felt she was just very forgetful and didn't pay any attention, thinking she was taken care of herself. Keeping in mind that my mother and myself live across the country from her. We live in Utah and she is in Maine.
    As time went on, my mother and I noticed each time we spoke to her on the phone something was different. One day she fell and broke her hip. My grandmother crawled to the phone to call 911. This was four years ago and she a month in rehab. My uncle from Florida was the closet one to get there and see what the situation was. I do actually have one uncle and my sister that live in Maine as well as grandmother. My sister was doing the best she could with working and helping out grandma. My uncle is just another vent post to come soon. They all made the decision, which my mother and I disagreed about was to move her to Florida. We thought it would be in her best interest to move here since I have done care providing for twenty years now. But, nope, she was moved. Not even a year later, things were not going so well. She had one shower in a year?? What were they thinking ?? First thought….some thing is wrong with this picture. My mother and I would call every week for a year to see how she was doing. Nothing was changing…so we set up for a one way ticket with no stops to move her with us…no questions asked. My uncle put her on the plane and I met her at the gate. For the past three years, I have been doing the care providing. Showers all the time, food set up for her each day and a routine of care provided. The very next day after she arrived we took her for a hair cut, which was much needed. Set up a doctors appt for her to get hip check up and found out the start of Alzheimer disease and dementia had set in.This was the toughest news for my mom to handle and still is each day. to see your own mother this way. Just recently in October 2013, she took a turn for the worst. We set up a day program each day and respite for one weekend per month at an assisted living place. (yes…assisted living) While there she fell and attempted to crawl to the restroom. They called and told us they were not sure how long she was on the floor from 2 pm to 6 pm. Okay…if I am not crazy …something is wrong with this twenty four hour watch thing. She was checked and they stated she seemed fine. Her blood pressure had rose and high temperature. But went down soon after. We think she was scared, anxiety and disoriented. So, we thought if she fell again than it was better for her there than at home. She stayed another night. Well, as you might guess…she fell again. This time I picked her up and brought her home. Since that day we brought her home, she has not walked or stood on her own. Hospice was finally started in February of this year. I still have problems with the aids they send or routine schedule. This is a must for her set schedule. The nights are tough because of sun downers. Each night is rough for everyone, especially my grandmother as she attempts to climb out of her hospital bed. Three thirty the other morning was the worst. She had both legs out of the bed under the railing and I had to push the bed down so that my mother could remove her legs without breaking them. Well, that is some of my story, as of current. It just depends on the day. Thank you for the add and I look forward to share more with everyone. As I have read many post…I thinking I may have found a great support group that we need to help in this journey we are taking. Thank you for letting me share.

  75. About 10 years ago we noticed changes in my sister Nancy's behavior. First her walking became slower and more deliberate. She lost her job as a 6th grade teacher. She could no longer do math or handle money. She could not figure out how to put on a coat. Her shirts would be worn inside out or backwards. One day I found paper in the trash that had been ripped to shreds. She had been trying to write her name. She had terrible problems with her vision and depth perception. She reluctantly saw a Neurologist who diagnosed Posterior Cortical Atrophy. He explained it to my sister as "the visual variant of Alzheimer's". My sister was 55 years old.
    She eventually lost her vision and it became very difficult for her to walk. She was blessed to be able to stay at home with a wonderful caregiver Lorraine. They would listen to music, sing and pray together. Eventually Hospice was needed as her condition worsened. Nancy passed away July 9, 2014 with her daughters holding her hands. She was 65 years old and left 3 grandchildren that will never know their Grandmother.
    My heart goes out to all families and caregivers who face this situation every day with grace and dignity.

  76. I miss my mom. Oh, how I want to reach out to her and tell her how much I love her, how sorry I am for not being a better daughter, how I want to ask her questions about her life before me, how I want her to really know her amazing 10 year old granddaughter. . .Mom was diagnosed about 18 years ago. I got off the phone with my father today and for the first time I cried. Not just cried, sobbed. I'm not sure why it has taken so long. Dad and Mom were always a unit ever since they were in 2nd Grade together. Dad has been trying to handle things for so long now, and today, he really needed her. In many ways, she made him better in so many ways. Today, she would have made him better. And, I really felt it. And, I really, really missed her so much. How can she be there and not be there? I really hate this disease.

  77. Though my mom has been gone since late Nov of 2008, I feel guilty for having told her that she had SOME Alzheimer's disease. I read a book which recommended informing the family member in a kind way about their disability, so they would better understand the changes in care she would receive from me, her only caregiver. (Things like not being able to safely use the stove, the washer/dryer, personal care, etc) Now I'm confused and feel I took away her dignity by telling her this awful news…..

    How do I deal with this? (She did not have a CT scan of the head, but had Alzheimer's testing done by a psychiatrist). Honestly, I wish I'd never handled it this way, based on a book I read for caregivers. Please comment.
    Now that I'm older (68) and see offers all over the internet for memory testing, I really wonder even more about it. My feelings about this are that I would not want to know unless it got to the point where I could not take care of myself. I would find it terribly depressing!!! My mother was on Namenda and the only difference I found it made was that it calmed her agitation down some.

    I'm sure that since 2009, the guidelines as to how to deal with Alzheimer's has changed…..

  78. I want to donate to the cause in my Mother's name but I don't see how to do that. I want somehow to have her acknowledged from this gift. Can you help?

  79. Aloha, my mother has the disease, has hallucinations and uses a walker around the house. I am her primary care giver and work 30 hrs weekly. She's on nameda and aricept. We also give her St Johns wort. In the evenings to calm her. She has sundowners and wants to go home to her parents. Aside from her Alheimers and bone on bone knees. She's basically very healthy for a 89 year old woman. She's healthier than I am. I try to keep healthy so I can be there for her/ and hers. House, yard. Etc. but it's hard. i would like to say Mahalo to all of U for blogging and sharing. At least we know we r not alone.

  80. Thanks for sharing your feeling of embarrassment and shame…why do we feel that way. I, as my husband's care person,
    have felt those same emotions. I am finding there is freedom in just letting people know and it is very surprising the
    number of people who have experienced a friend or family member with this disease. That being said, there are still
    too many times when some don't know how to react. Hopefully this will change.

  81. Hello, thank you for having this blog. Last Friday, I lost my 2nd mom after quite a long battle with Alzheimer's. I have to say, I honestly hate this evil disease. In an effort to "put a face" to Alzheimer's, one of my goals for 2015, is to do just that via my own blog. If anyone would like to share their story, please do not hesitate to contact me directly. I would love to tell others' stories with pictures, a favorite prayer or Bible verse, or just a tribute to a loved one – working together we can help spread the word! My mother-in-law battles with dementia every day … I cannot begin to imagine the confusion she has going on. It is tragic. Let's help raise awareness!

  82. I have so many questions. My dad was diagnosed with alzheimers yesterday by a neurologist. Is it possible to develop Alzheimer's suddenly? He was driving home from a well doctor appt 9/4/14 and suddenly started driving erratically. He was pushing buttons and swerving on the road. Some of their friends stopped to help, he did not recognize them. He was speaking incoherently. Several hours later my mom who also is having issues called 911. This is how our journey began. I have been told he had encephalopathy due to low sodium a uti and pneumonia. I have been told he had a stroke, I have been told he developed vascular dementia due to a stroke. The latest diagnosis is alzheimers. Daddy had to relearn to walk, feed himself, use the restroom, bath and all other normal day to day routines. He would have one day every 7 to 10 days where he acted almost normal. He started showing agitated aggressive and having dreams of suicide. He told my mom he was going to stick her with a knife. He accused me of spending all his money. He became so agitated I took him to Geri psych for a week. He is now on an anti psychotic drug and sleeping pill. He is doing so much better. The neurologist yesterday wants to take him off the anti psychotic gradually because he said it is bad on his heart. He already has diabetes and congestive heart failure. I guess I always thought alzheimers came on more gradually instead of in one day. Is this possible?

  83. My husband is 82 stroked at age 77 during a long hip surgery and has gotten progressively worse over the yrs. He was on Exelon patch 9.58 but the physician assigned him to hospice two weeks ago and was taken off the Exelon patch and prescribed trazadone 50 mg at bedtime and lorazepam lmg every 4 hours. I am wondering why he was taken off exelon.
    He also shuffles and falls all the time. Any thoughts on this.

  84. Check out my Blog at janegayer.blogspot.com. The Adventures of Joe and Al and Jane, Tale of Our Life with Alzheimer's,
    Weekly posts with a touch of humor.

  85. Hi
    My mother has been living in my home full time for the past two years. She is 86 and began showing symptoms of Alzheimers at 80 yrs. old. She has declined considerably physically and progressed further into a 5/6 Alz stage. I have requested that United Health Care increase her Medicaid Waiver, Home Health Aide hours. For the past year she has receiving 16 hours a week. More is needed to manage her needs. As yet, we are still waiting. What is my recourse to have the Insurance Company respond to her needs???

  86. Mom mother has late stage alzheimers. She has been in an assisted living home for three years. She has no idea who we are. She can't dress, bath, go to the bathroom on her own. She is on the Exelon Patch. We as a family feel it is time for her to stop taking the patch. Her quality of life is terrible. Are we wrong to take her off the patch?

  87. As a psychologist and former university professor (classes on aging at Chapman and SCU), I had hoped to prevent my mother's Mild Cognitive Impairment from progressing to Alzheimer's disease. My father had just died with vascular dementia, and I wanted to learn everything I could to help my mother. But one of the first things I learned was that I was too late. Her symptoms were already progressing. That was eight years ago. Yet the knowledge I gained has helped me to make critical changes to avoid Alzheimer's symptoms for myself, in spite of my genetic risk. I have learned valuable techniques for prevention (by the individual), planning (by the family), and protection (by society). I would like to post information on this site and will reply to any questions I receive.

  88. I take care of my mother-in-law, 83 , with Alzheimer's dementia. She also has glaucoma and now can see very little at all. None of the physicians she has had (she moved to be with us and then we moved again) have really addressed this issue. They confirmed that her vision problems were cognitive but that's about it. Do others have this problem or do you know of information that would be helpful on this issue?

  89. This all began after a conversation about end of life decisions. My husband, Stuart (age 62), was diagnosed with younger onset Alzheimer's at the age of 60 and is adamant about not wanting anything to prolong his existence once his quality of life is poor. He remembers his father with the disease sitting outside our home in Kansas City in the summer staring into space hour after hour, all the while getting sunburned and dehydrated. He also remembers him in the nursing home, unable to communicate, just waiting to die. He hates the thought of that being his future. I asked him to put in writing what he does and does not want in the way of care to either prolong his life or hasten its end, once he was unable to make those decision on his own. He starts with . . .
    I have early onset of Alzheimer's. As of now, the date is ?? I don't really know. As I look out the winder from my study, it's obviously winter because there's snow on the ground. It is not even close to spring yet. I'm pretty sure it's past Valentine's Day, which is in February, though i don't think it's quite March yet, because if it was i would be watching college basketball's "March Madness": playoffs. So, I guess it's probably somewhere around February 25, 2015. Now I will look at my cell phone to see what the date actually is: Monday, February 16th at 7:47 a.m. Wow, not bad for someone with my condition! Or it could have been just an educated guess.
    What's odd about this disease is that it's so covert. It sneaks up on you. I was officially diagnosed about a year ago. According to my wife, Annette, it was on or about December 2013. I think I have had it for about two years now. I no longer have memories. I only have "memories of memories." Yet, I have a somewhat normal, slightly impaired lifestyle. I enjoy landscaping my yard, which is all rock and tiny pebbles, referred to as "decorative rock". Colorado is a great place to live, especially for me because, in spite of the disease, i can still bike and hike by myself without getting lost (he does not remember the times he has gotten lost, both while jogging and bicycling. He eventually made it home both times, once after calling his daughter to come find him and once after ending up in a small town near us that he recognized). In spite of the Alzheimer's I still have a sense of direction. I am very good at looking at landmarks in relation to where I am and where I need to go. Oddly enough, it's easier for me to be driving around town and get slightly confused. Fortunately, where I live isn't very big, so I have relatively no problem going to gas up the car or going to the grocery store (I no longer let him drive alone as he could very easily become confused on how to get back home).
    Socially, I still have a very good life. I have numerous family members within an hour's drive. I know all their names and occupations (he struggles with names of his nieces and their husbands and really doesn't know quite where they live or what they do). We go to church regularly. I know a dozen or so people by name; more by sight, though this sphere of influence and fellowship is rapidly shrinking. I am naturally outgoing but with the disease, that is changing. I notice that I have fewer and fewer close friends. I stay home a lot, more now because it's simpler and easier, and probably safer. My world is shrinking! And I think there is nothing that can stop it. Yet, I continue to enjoy and cherish what I still have. Family is more important to me than ever before. Hiking has now been replaced with walking around the neighborhood or along the river walk.
    Fortunately, when I was young (17-21) and in the Air Force, I got to see the world, though most of the places were not vacation spots. My brother and I have traveled all over the country, Canada, and Mexico. We hiked dozens of mountain peaks, rafted down numerous rapids, including the Arkansas river. All had was a 2-man raft, a lot of daring, and a lot of fun, and probably not a lot of sense. We were fearless, young, and adventuresome!
    Now, I am old, senile, and watch a lot of basketball on TV. We no longer travel or go on vacations. As I get older and do less and less, Annette is getting younger and more active and adventurous with each passing year. We are growing apart, and that makes me very sad . . .
    (As the reader can see, he quickly begins to write tangentially, starting to reflect on his life rather than planning the future. It's very typical of his conversations now. Mostly they are stories he remembers from his past, sometimes pretty accurately and sometimes not.
    I hope he continues with these memoirs–it helps me and might help others to get a glimpse into the life and disease process of this terrible illness. What was to have been a written summary of his end of life wishes became a story of his past and what he has lost, which is okay. The disease has already stolen so much and the future is hard to think about, but life goes on . . . )

  90. Returning to Love Sharon Edwards RN BSN
    My Husband transitioned in 2006 with Alzheimer's and Parkinson's. I kept him at home and cared for him and blogged about out experience. I have since written a book available on Balboa Press, Amazon and Barnes and Noble. ebook.
    His last words to be were : "Hurry honey I see the Light. I have to go Come Kiss me bye. I love you."

  91. We have a friend who is going through several things, and so I'm not sure it's actually Alzheimers/Dementia. It started about 2-3 yrs ago when she quit smoking. She got COPD, and had bad time with coughing/ gagging the doctor put her on inhalers and various other meds. She was also obsessed with NOT gaining weight she stopped eating very much. Because of the coughing she started sucking on cough drops, and now seems addicted to them. and now consumes 40+ PER DAY! We recently spent several days with her and her husband and noticed she hardly eats anything, (except cough drops) and weighs less than 100lbs. She has trouble walking, and her short term memory is getting bad. but I'm thinking some of that is because she doesn't eat and her husband is having trouble dealing with all this. She now gets panic attacks if she can't see her husband so he can't leave her for long. I want to get him some help too, so if any suggestions would be appreciated.

  92. My wife was diagnbosed with Alzheimer disease after a neuro psychological test, but her MRI and CT scans show an
    unremarkable brain free from plaque or tangles. Her scans are better tham mine.
    So what is going on? Her blood tests are very good. She is 5 feet 8 inches and 122 lbs. She exercises hard.Is Has anybody
    else had this experieence? Kaiser Permaente made the diagnosis.
    David Williams

  93. Hi,

    My mother was diagonosed with dementia 2 and half years ago. The doctor tried Namenda with her, but she got so mean and tired we decided to take her off, including insurance would not cover. As of this January, the doctor prescribed the Namenda Xr. For the first 30 days she was exhausted, having more bowel movements and dehydrated. I thought again this is not for her so I had him lower her from 28 mgs to the 21 mg. My mom will state she thinks she is going crazy, and mood swings are faster including she just at certain times of the day gets emotional. I am worried am I doing the right thing. Her Dr. states if we want to take her off we can, what do I do. I feel she is not sleeping well . Her main issues at this time is, she has short term loss, may get depressed especially with not any sunlight. Tired and Paranoid also thinks at times she has had a certain conversation or someone told her something that did not happen. Can Anyone hep with advise. She also takes exelon, celexa and serquel all in generic form. Thank you , Karen

  94. Hope that some researcher out there is listening.

    My mother-in-law has had 3 surgeries in the past two years. After each surgery for about 24 to 36 hours she is absolutely astonishing in her ability to converse recalling both very old and new memories. This happens to the point that every medical professional who walks into her room is astonished. After 36 hours she is back to dementia/Alzheimer's.

    Has anyone else had this same type of thing happen? If so, there must be something that these incidences all have in common that may hold the key here.

    Everything I was ever taught about the Scientific Method tells me that the human body chemical factory is getting something during this time that we are not giving it the rest of the time. I get this line from her doctor all three times. "This happens sometimes, but we don't know why."

    HELLO!!! So why don't we try to find out?

    I remember the Highlights magazine in the doctor's office. Which one of these things are the same? What is it that changes in the brain during these times of surgery that restores the strength of the electrically charged signal through the synapses releasing the neurotransmitters as normal. It has to be something that crosses the blood brain barrier.

    Have decided to request her medical records for medications given and withheld during surgery and see if there is something about her oxygen level. There has to be something here, because this isn't caused by some wizard casting a spell. Something is the cause and the key for my mother-in-law.

  95. My first post. It was my 65th birthday yesterday and it was a sad one for me. I provide care to my 93 year old mother who phase dementia and I was having a little pity party for myself for a number of reasons. I'm tired. Even though I have care givers 6 hours a day so I can have some respite I'm always tired and stressed because I never seem to get anything done. Used to be bery organized but not anymore. I mourn the loss of the mom I used to have. I'm being a big baby because it hurts me so badly that she didn't have a clue it was my birthday and later today didn't remember I was her daughter. Most of the time she thinks I'm the woman who cleans, cooks, and does her laundry. My other sorrow stems from the fear that this may be the last birthday I spend with her. I know I should have handled today differently. My family all sent gifts well wishes and cake and flowers but I didn't want to celebrate. I just wanted to sleep. Oh well it's a new day. Just needed to vent because I still feel sad and now I need to as Taylor Swift says shake it off.

  96. I really need someone to talk. I am having problems coping with my husband and his Alzheimer's Disease. He is 83 years. old
    .Virginia.

  97. My sister has Alzheimer's. She was diagnosed three years ago but has been dealing with symptoms for at least five years. She just turned 75 and this past fall was moved from her home to a memory care unit. I live two hundred miles from her. Her husband who is 85 is too devastated to visit her. Her daughter in law stops in every week or two. I worry about her and I worry about myself. Every time I forget a last name or have a lapse of remembering something, I freak out. I am almost 65 and am so frightened that I will inherit this disease. How do others cope with those feelings? Also. My father's sister had Alzheimer's , my mother had Parkinson's and I my father had vascular dementia (at that time we thought it was a stroke).

  98. Both of my paternal grandparents suffer(ed) from Alzheimer's or Dementia. My father likely will. My sisters and I potentially could. It was indescribably hard for me to watch these people, who I loved, and who had once been journalists, soldiers, business owners, amateur chefs–and so much more–become mentally unable to pay their bills, to feed their dog…to remember me.

    Writing is my passion (and my job) and this is my story that I plan to share on The Longest Day to raise funds. I am hopeful. Aren't you? http://yourtimebc.org/hope-alzheimers-grand-daugh

  99. Both of my paternal grandparents suffer(ed) from Alzheimer's or Dementia. My father likely will. My sisters and I potentially could. It was indescribably hard for me to watch these people, who I loved, and who had once been journalists, soldiers, business owners, amateur chefs–and so much more–become mentally unable to pay their bills, to feed their dog…to remember me.

  100. My mother has dementia. She is 83 years old. She has been in a care facility for 1 1/2 years. When I first placed her, she wanted to be in the home town where our family had made our home. Burbank Ca. I live in Claremont Ca.the issues for me was mom was declining quickly. And the drive was awful, traffic in the L.A. Area is horrible. I found a nice facility in Claremont Ca. I'm five minutes away, which for me is perfect. My next step is to find a doctor to do a full evaluation of mom. I feel she needs one due to the quick decline that I have observed since Mothers Day 2015. So I m turning to this Blog for several reasons. I need to be able to share what comes up with mom, and have a connection with others that have parents that can understand what I'm going through. I do go to a week support group, but I'm finding that issues and behaviors come up between meetings, and I find I need to voice my concerns. Perhaps this blog is the place. I'm checking it out. So here is one issues that just came up last night. I went to visit mom, it was dinner time and when I arrived. If found that she had refused to eat dinner. I asked mom. If she had ate her dinner, yes. She said. Ok was it good. No I'm not hungry. I'll eat later. I explained that dinner time was now, and I could join her. No I ate dinner. I'm full, she stated. So a few minutes later she said to me. Did you eat dinner? No, I did not mom. She went on to say she did not. I said you need to eat, the kitchen will close, so let's order dinner. No I'm full. So this went on for 10 minutes. So the next plan was to leave the Memory care unit and go to the main dining room. We sat down, and we went to check out the salad bar, she served herself and we split a turkey sandwich. Never did she say that she did not want to eat or said she was full.
    This was a trying time. But I got through it. Sorry for the long winded blog. However it helped to be able to put my feelings in writing. I'm going to have a conversation with the staff concerning this issue with my mom, and follow up with then and perhaps we can avoid this or find a solution if I'm not there at the facility.

  101. My grandmother died at 89 years old on June 5, 2015 after nine years with Alzheimer's, I was 7 or 8 years old when she started with the disease, she started to lose his balance after that she was disabled, moved with her and my grandfather. gradually we noticed as we were losing she, she was in a wheelchair about 7 years then she were unable to eat so the doctor recommend to put a hose in her stomach so she can eat through that , after that she was in bed all the time she cannot move , she doesn't recognize none of her sons and grandchildren, she die sleeping , she don't suffer , I don't meet my grandma that damn disease you her away from us (if are error on the paragraph sorry and from honduras)

  102. my husband has been diagnosed with Alzheimers and I am beginning to sense that I can't leave him alone for too long at a time. He forgets to eat and overal I am sensing him sort of slipping away. Then, there a some glimpses of hope and he seems a bit sparked up. Is this "normal". I am considering leaving for a week to help,out a niece, after surgery, but feel more and more reluctant to plan the week away.

  103. I am new to this whole world. I am wondering if other people have noticed "normal" moments of behavior during the onset of Alzheimers or dementia. We are noticing many of the symptoms but there are moments of clarity. Is this common?

  104. My husband was diagnosed 3 years ago with Alzheimers. He is still driving when he should not be. When speaking to others about my concern they just stare at me and ask do you know what you are asking? Yes, I do, I want to save my husbands life and others as well. His reasoning and judgement are way off. Everyday I see new changes in him. His personality can change quick. We have pretty much isolated ourselves from friends and are home bound most of the time. Some friends they see no change while others say they do, he still can do so much on his own. He has never gotten lost yet but driving skills just not there anymore. I have our Daughter in Law coming to stay with him for 8 days at end of month while I take a trip with my 2 best friends. I am usually with my husband and do not make a habit of leaving him. I am very confident in the care giver I have coming to stay with him. She has known him for 36 years and is family. Our youngest son ask me yesterday if maybe I should cancel my trip? I am so confused now about if I should go or not go. I spend every moment with my husband and just thought it would be nice to get some alone time. I feel selfish and feel I should not go. My husband is encouraging me to go and wants me to go. This trip was planned 6 months ago. Should I go? A care giver in a delema!

  105. I decided to try sharing the short myth that I wrote (for school) about Alzheimer's. It may help some or it may not, I leave how this story is taken to the individuals who will take their time to read it. I won't say it's the best written story, but it's well enough to understand the message I wish to convey through it. My father suffers from Alzheimer's, so I have experience going through this tough battle. I hope you will give my myth a try and enjoy.

    ***************

    Have you ever experienced that feeling of deja vu1? That you’ve met this person before, even though in reality, this is your first meeting. Or been someplace before, when you haven’t. If you answered “yes” to any of those questions, then there is a simple answer to the cause of this sensation. No, it’s not because you’ve been there in your dreams and it’s not because of your past life, but it could’ve been someone else’s. Did I just confuse you? Well that’s good, that was the point to begin with. Each and every one of us is connected in more ways than just our genes.

    As stated before, deja vu isn’t caused because of your dreams or your past life. By this, I mean you are experiencing it because of someone else’s memory. This brings me to my next statement, “connected in more ways than just our genes.” We are all connected in some way through memories. Whether they are our own memories that we’ve created in our lifetime, or by experiencing that weird sensation of deja vu because of some shared memory that’s not originally our own. The world works in mysterious ways and there are many mysteries yet to be solved, but this mystery of bonds and memories can be discovered in a myth from long ago and a brain disease called Alzheimer’s.

    ~

    Long ago, in a far off land, there was a royal family who ruled over a small country. This country had abundant food, water, and other necessary materials to be prosperous and brimming with life. But if you took a closer look, you would notice that something wasn’t quite right. Though it was lively in the village and countryside, the closer to the castle you got, the quieter it seemed. It was as if all the joyful sun and peaceful energy was sucked away in an instant. It was cold, quiet, but worst of all, there was an extreme feeling of loss. Sadness and confusion hung in the air like dark storm clouds, almost as if the skies were ready to weep any second.

    Inside the castle was no better than the outside, in fact, you could argue that it was much worse. You could suffocate on the condensed raw emotions running rampant throughout the castle. What would be the cause of such a vivid difference, you ask? It’s simple, the royal family is cursed. It’s been said they’ve been cursed since the origins of the kingdom. Many rumors have spread that the first king angered the gods for building his castle on holy grounds. Or that he killed a demon who lived in the forest near by. These are only a few of the many rumors that have been spread far and wide among the people, each one more outrageous than the last. But one rumor that is known to be true is that some disease is spread throughout the family tree, one that is incurable. Even the best doctors from all over don’t know what the disease is or what has caused it, which makes it even more challenging to treat it. It’s said that when the family members of the royal family develop the disease they slowly lose their memories and the ability to function on their own. With some of the worst cases, the patient can have a complete personality swap because they’ve forgotten who they once were or have uncontrollable mood swings. But either way, the disease just gets worse and worse as the time goes by. Nothing helps. Nothing stops the progression of this deadly unknown disease. This is how the royal family of a prosperous country gained the title of “the cursed ones.”

    As time goes by, this unknown disease still exists and still spreads. It has taken many lives. From the suicidal who couldn’t take it anymore, to the ones who pass when it’s time, this disease continues to torment the humans throughout time. With nothing to stop it, nothing has changed. That is until, someone finally decided to try to make a change.

    ~

    tbc

  106. We are moving my mother to a memory care unit. Should we stop the Namenda? She has been on it for many years and Medicare doesn't cover it after about 4 -5 mos. of each calendar year. She has spent thousands on the meds in the past 10 or more years. The unit is expensive and I am thinking she is pretty healthy otherwise and will need to be there for many years.

  107. My Mom was diagnosed with Alzheimer's earlier this year. She is now getting to the point where she will not eat what we make for dinner but shortly afterwards she will eat ice cream, chips, pie etc. If I try to make her eat dinner,she will storm out of the room and got to bed, come out an hour later and eat a piece of pie. Does anyone have any suggestions on how to handle this? She is also periodically talking in a foreign language she knew as a small child. Any one else been thru this?

  108. My wifes mother is in a memory care unit for 6 months and my wife dose not like the facility anymore what are the plus and minus if we decide to move her to a different facility

  109. My wife and I are caring for her 87 year old mother. We got frustrated with the post it notes, medication journals and lists and found nothing to keep her organized and safe. We decided to invent something to help. We did. We showed it off at the Portland Alzheimer's Walk on Sunday–we walked and raised money. It was very well received. Maybe it will help you with your family members. See what you think: http://www.kalendarkards.com. Hope we have done some good. It is helping her mother and two other families we are close too and it allows us to work closely with her in planning her day in a non threatening way. My best to you in this journey.

  110. I had a mother who started showing small signs of dementia at 60. She went along with life as normal until 5 years ago and we had to put her in a nursing home. This nursing home was 90 minutes one way from my home but this is where mom grew up and wanted to go. She went in walking, talking and feeding herself. This was the hardest decision I ever made. I made this trip 4 times a week for awhile. Then it was every week. She was in a unit with 12 other alzheimer patients and she was the only one who had visitors. I went to meetings, I read books and I educated myself on this disease. As I looked into her eyes and although she couldn't say my name I knew this was the BEST mom in the world and she taught me everything I know today. She never asked for this disease…. She was still mom. As time went on she needed help feeding herself, she had to be put in a wheelchair but I never stopped talking to her as my mom and I would hold her hand, give her a hug and kiss because she was still Mom…..not a holiday, birthday,wedding anniversary went by without a card that I hung in her room along with a collage of pictures of her life as a child and all the way thru to the day I put her in there. I received that dreaded call she was not breathing good and had a fever so as I started on my 90 minute ride I told God thank you for the wonderful life my mom had and for all the great memories you allowed me to have in my life but thanks for giving me 5 more. I watched my mother for 51 hours struggle and then God took an angel home.I hope if this post helps one person out there dealing with this disease then I accomplished what I set out to do. Remember they are still that mom or dad that you had before this disease took over. Remember they never asked for this and you should love them until the end!! I wish you all the best it's never easy but it's worth every second you have left with them. Take care!

  111. I am pretty sure that my 76 year old mother has Alzheimer's. Her doctor has not officially diagnosed it but she has many of the signs. Two days ago I spent an hour and a half visiting with her and showing her pictures from a vacation I had just returned from and this morning she couldn't remember me being there. She wants to be independent but I worry about how forgetful she has become. She no longer remembers how to prepare food that she has fixed since she was a child and cannot remember how the can opener works. Her doctor has had her on Aricept for about six months but it doesn't seem to make a difference. I am trying to get an appointment with a specialist but have not had much luck. Thank you everyone for your posts. It helps to read what other caregivers are experiencing.

  112. My wife with AD is in a memory care facility. In the past couple of weeks she has developed fixation on a recent picture of one of our two grandsons.They were very close all his life. Se's always adored him and he her. He is now 19 y.o. and in college and lives in another state. I'm concerned that she seems to avoid activities and spends more time in her room where she holds his picture gazing at it and often kissing it saying that's my boy–which she always used to say from the time he was an infant. I don't know if it is good or bad for her. If it is a negative thing I could easily remove the picture and she would quickly forget about it but I wouldn't want to do that if she gets any thing beneficial from the it.

  113. How can I send a submission for a guest blog?

    Blog: What My Mom (& Alzheimer’s) Taught Me https://thebehaviorstation.com/what-my-mom-taught

  114. Confirmation that I was to follow in my father's footsteps jarred me in ways I never imagined. Since hearing the news, "You have early on-set Alzheimer's," I began waking up between 3 and 5a.m. Zero dark thirty is when my eyes fly open and I'm full-on aware. The words that normally tumble off my tongue now flow feverishly by pencil to my yellow-lined pad–as though I am possessed. And, I write poetry. Two years later, I am still waking early writing poetry. It is a way to journal my frustrations, fears, overwhelm and through that process, finally tumbled upon joy and being content while in service helping others. It happened. Thank goodness. Thank goodness!

    My book published, Blue.River.Apple. an exploration of Alzheimer's through poetry depicts how I am learning to live with my diagnosis. A bird's eye view of day-to-day happenings. Perhaps how I'm dealing and how a loved one of yours might be dealing will give an understanding that we must find for the one walking the long good-by and the one caring for them.

    It is through my stepping up, speaking out, and sharing my own very personal thoughts and feelings that will emancipate the stigma attached to the growing numbers of those of us relegated to a diminishing memory. My sharing my story gives me a purpose to those frequent feelings of less than and bolsters a roguish stubborn ruggedness in me for a worthwhile fight–to maintain dignity, honor and respect.

  115. Hello All. My name is Regina and my Mom recently passed. She is at Peace now and I miss her terribly. I have been a member here for some time and this site has truly been informative, supportive and helpful. Alzheimer's is truly one of the hardest and most heartbreaking diseases I have ever experienced, and as her caregiver, I would have never survived without all the support and education. I am glad I had all of you to turn to. It broke my heart each and every day to see my Mom this way. I will continue to pray for all of you and offer my continued guidance and support. I understand your struggles and feel your sadness. You are not alone. Blessings and strength to all of you.

  116. I got the news on September 21st, 2015, "you have mild cognitive impairment…." I suspected there was something wrong with me, but after hearing those words the first thing that came to my mind was my mom who died of Alzheimer's. . My mom drank a lot (and I mean a lot), but we all just thought it was part of the booze or getting old.. I AM NOT OLD,,I am 61. My Grandmother also had what was called at that time "hardening of the arteries," and I remember when I was young when my mom would tell me to get on my bike to help find grandma "because she is lost again." I am a retired 34 year Police Officer, Sergeant, Lieutenant, and even a Police Chief until I had the Mayor arrested (one of my highlights). This was not suppose to happen to me. Both my wife and I are still In shock, but I am doing everything I can to stay in that early onset part of the disease. I have lost 20 pounds, have only a beer or two night, started running again (up to 6 miles), eating better, and taking medicine that everyone knows will probably not help. I am trying to get into research studies and to do this you have to hound people to keep thinking of you because even though there is a shortage of volunteers, once you are not qualified for one study, "because you are not far enough in the progression of the disease," you have to remind them that you are still willing and able to try again. I hear there are some interesting trials going on and I hope and pray….just like many of us who are going through this, along with their love ones and friends, that a solution will come soon. if not for me, you, or others that you know, I hope it is soon for those that I/we will leave behind.

  117. Our mother, Judith Clarke, has often said she has no idea where my sister and I
    received our “caretaker” genes. As an Oncology RN of 24+ years, I give care to some of the sickest patients. Their stories can be heartbreaking, but
    they can also be full of hope and promise. My younger sister, Leslie, has her Doctorate in Special Education. She is a specialist in Autism Spectrum disorders. Her
    career started with teaching the profoundly mentally challenged.
    Now our Mom, she is amazing in her own right.
    She is an accomplished writer and editor, excellently suited to artistic design, a wonderful gardener and cook, and excels at making people feel warm
    and welcome. However, she is not the first to rush to aide, gets faint at the site of blood and squirms and
    squeals at the mere mention of my nursing stories. Mom is not a patient woman. She shakes her head in amazement at Leslie’s
    accomplishments, whom encompasses the profound responsibilities of education with the compassion and laughter of the happiest sort.

    Flash forward. As her husband, our father, became increasingly difficult and surly, it was my sister who stepped in and administered a special test that indicated our dad scored high on the Asperger’s Autism spectrum. As our mother would do, she researched and read and soon became more adept at handling our father’s difficult moods and tendency’s.

    Too soon the Asperger’s took a back seat to the frightening onset of dementia. Mom researched and read, she took our dad to specialists and had multiple tests administered, hoping against all hope that he did not have Alzheimer’s disease.
    He was still able to accurately complete math problems, without a problem, a huge plus since his career focused on engineering. He was able to charm his way through answers and laughingly convince others that he was fine.

    We knew this wasn’t true.
    Sadly, my mother had to take on the role of full time caregiver. Our dad remembers little and needs constant encouragement. Mom is right there, with her notes and
    her reminders and repeating herself endlessly. After getting lost multiple times driving, he admitted he was no longer safe on the road. Mom
    sadly sold his beloved sports car and now is the fulltime chauffer. My dad shredded bills and important
    financial information. Mom stepped in and took over the finances, and now zips through online banking. They had loved to travel, from Alaska
    to Africa, exploring the world together.
    Until the day he got lost walking back alone from a nature talk, a walk
    that was a straight sidewalk, only a 100 feet. A team of rangers had to go find him in the darkness of Wyoming.

    Combine the Asperger’s and the dementia, and Mom has had many lonely days and
    nights. Our dad has always been solitary, but now has little interest in anything. Mom still encourages him and takes him to his favorite
    burger joint for dinner and a beer, finds funny movies to stimulate him, encourages him to go for walks with her.
    Sometimes all she can handle is a lonely evening with her silent partner.

    My sister and I send encouraging letters and have long conversations encouraging
    her to keep herself busy and not get lost in the world of care. She surprised our Dad with a Golden
    Doodle, a wonderful service dog and companion. Then Mom signed them both up to make the rounds at nursing
    homes. She hired a patient and kind man, Bill, to take him on these rounds and then out to lunch. Their time away gives her time to
    regroup, run errands or just relax.

    Mom found the way to be the best caregiver to our dad, her husband, is through her writing. One of her best
    accomplishments is her blog she designed and writes. “Dementia Isn’t Funny” is written for caretakers, like our
    mom, to find humor in the everyday trials and tribulations of dealing with the heartbreak
    of dementia. She chronicles their adventures, his funny quips, and how she has learned to find patience and humor
    in dealing with our fathers decline. She has struck a nerve with the many that follow her, who share their
    own triumphs and trials. Sharing her stories not only helps her reflect and see the lighter side but it reaches out to others so that they may
    pause and have something to smile about.

    I honor our amazing mother, Judith Ellen Clarke. She has found her path, found patience, and found laughter.
    She cares for our father with love and patience and humor. She is our rock.

  118. Does anyone have suggestions for helping limit the frequency of phone calls I receive from my 88 year old mother? She calls repeatedly within minutes of our last conversation almost as though she is using redial though I know she doesn't know how to do that. I usually always answer …..am grateful to be able to speak with her but every 2minutes sometimes makes it difficult to have the patience I should have.

  119. I am doing a research paper for a college class on Alzheimer's Disease, specifically the family caregivers. I have learned that as Alzheimer's progresses, the family caregivers face many challenges from helping their loved one retain their independence and dignity for as long as possible to the final decision of when enough is enough plus the challenge of taking care of themselves. These caregivers face a multitude of emotions and lifestyle changes, which could affect their mental and physical wellbeing. Family caregivers need and deserve all the comfort and assistance they can get from family, friends, and support groups.

  120. I'm a care giver to my step mother who has been diagnosed with Alzheimer's last month, she is in her early stage of the disease and I need to blog her progress and mine in order to establish a guideline of what works best in our home.

  121. I've been reading some of the life stories of living with AZ on this blog, and I am so happy to see that some of you are still "doing". My husband was diagnosed with mild cognitive impairment about 5 yrs. ago. This summer he was officially diagnosed with "moderate dementia". At this point I have no real cause given. He is in good physical health, even though he was also diagnosed as a celiac about the same time as the cognitive impairment. His main symptom is fatigue with some depression. He does not see friends, feels comfortable only with family, and gets anxious if I am gone for more than a couple of hours without staying in touch to let him know I will be on my way home soon. He never had any hobbies, except for reading or watching sports. He no longer reads or drives; still watches sports, and TV shows. I don't think he always remembers the content. He takes a daily 15-20 min. walk around our development. How can I encourage him to become a little more social. In the past he has refused to see anyone because he is "too tired". I am sure it is his insecurity at not being able to contribute enough to the conversation. Any suggestions would be greatly appreciated.

  122. The Power of Intentional and Purposeful Presence: Lesson Learned from a Mother with Alzheimer’s disease

    With all my training as a mental health professional, instincts, and good intentions, I was doing everything right when I “sat” with my mother in her assisted living apartment. During the final stages of Alzheimer’s disease, she usually sat motionless; staring blankly at the television, and communicating very little, but one particular visit was different. I learned a valuable lesson that changed my life and I pray encouraged my mother before her death.
    As usual, I prepared for a weekend with my mom, bringing books to read, study material and my laptop. I made sure the staff gave her medications on time and I assisted her in getting dressed, showering, putting on make-up, and getting her to appointments on time. I ‘did’ all these things in genuine love for my mother, but at that time I did not realize I wasn’t communicating my love for her in a way she could understand. I always thought I had to be busy either doing things with her or for her. That was our history.
    In the summer of 2011, before my mother’s death in October, I was happy to have time with her and I did those things that I believed were most important. She was
    “looking at” the television and I was engrossed in my own “stuff”. After all, I believed my mother was not aware of “me” or most anything else going on around her.
    As she sat on one end of the couch and me on the other, I glanced over and noticed that she had her elbow propped on the arm of the couch and her head was slumped over on her hand. She looked upset, but said nothing. In that second, I responded in a way that only God could have initiated. I asked her, “Mom what is wrong?” She shocked me with her words, “You just do your ‘stuff’”!
    I immediately laid everything in my lap aside and scooted close with my arm around her. I responded, “What is the matter? Am I not paying attention to you?” I told her how much I loved her, how proud I was of her, and held her close. SHE HEARD ME. Tears were in her eyes. She immediately perked up as she received what she needed; me being fully present.
    Our relationship changed after that moment. I drew from my own experiences as a child and learned to love my mother for where she was in this stage of life. Regardless of outward signs of her deteriorating mental condition, inside the recesses of her mind were glimpses of the mother I had always known. She was lonely and afraid, but desperately needed me to love her in a way she could
    understand; by giving her hugs, sitting close to her, paying attention to her, and being fully present with all my heart, mind, and soul. I learned that doing ‘nothing’ may be the ‘something’ that someone you love needs.
    I, myself, was recently diagnosed with early-onset Alzheimer’s disease in the early stages and pray that as the disease progresses that my children, other family members and friends will be able to show their love for me in spite of the fact that I may appear totally unaware they are present. When my behavior and personality changes, may they know that I am still the person I always was somewhere deep inside the recesses of my mind; needing their love, compassion and support.
    For those reading this who have loved ones with this disease, may you be encouraged and inspired that your intentional and purposeful presence does Make a Difference.
    Alzheimer's is the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed. In 2015, an estimated 700,000 people in the United States age 65 and older will die with Alzheimer's. There is no known cure or treatment for this disease and it is fatal. By 2025, the number of people age 65 and older with Alzheimer's disease is estimated to reach 7.1 million — a 40 percent increase from the 5.1 million ages 65 and older affected in 2015. By 2050,
    the number of people age 65 and older with Alzheimer's disease may nearly triple, from 5.1 million to a projected 13.8 million. For more information or support contact the National Alzheimer’s Association at alz.org. Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.

  123. Do you accept guest blog posts? My wife was diagnosed with Alzheimer's at age 50 in 1997. I was 52. Our children were 22, 20, and 16. We contended with this disease and its insidious symptoms for 17 years. I've written a book on our experience, which will be published in the fall of 2016. Alzheimer's is the context of my book. Its focus is the spiritual journey that unfolded through these years.

    I would be open to sharing some of the lessons learned through this time, if you do accept guest posts.

    I look forward to hearing from you.

  124. Thank you for this wonderful way to share with others. I was the care giver of my mom who died of Alzheimer's in 2009.
    I wrote a book about her life and the time I cared for her with some advice from my experience. The book is entitled My Million Dollar Mom. I am now in pre-production of a feature film drama based on the book. I will be sharing my experiences of how I successful took care of my mom until the end of her life the way she had wanted to be cared for.
    Ross Schriftman

  125. My husband is 63 was diagnosed at 58 with dementia. I’m his wife,and only caregiver. He treats me like a caregiver not a wife. As a matter of fact he introduced me to a follow Veteran as his “payee”! He sleeps in one room,I sleep in another with my dog. What is so hurtful is he gets on the computer and chats with young women. I saw one of the messages, and it was pictures of the woman’s vagina,breast! He speaks Spanish to them so I don’t know what he is saying. I did tell him that I saw the pictures and they are disrespectful to me, I know he doesn’t care,there is no emotional feeling for me. Does anyone else have this kind of experience? Thank you

  126. My mother in law has Had AD for the past 6 years, we have noticed that since November the disease really started to progress where we had to hire a care giver to come in and assist with her, she could pretty much do for her self some but needed a little assistance, now we are into January and we had to get a second person involved in her care due to it progressed so much more from November. She needs help with bathing and getting dressed she is to the point of having to be directed, we have to have now someone go in bathroom with her now because of some bad habits she all of sudden develop, one is putting to much tissue and paper towels and Kleenex all at once in to the toilet and trying to flush, it was like she was using the toilet for a trash can, so we had to wind up taking paper towels and Kleenex out of her bathroom and let the care giver give her the toilet paper to use, the 2nd thing we are trying to break is she is using her Fingers to give her self inamas every time she goes to the bathroom and also dipping her hands in the toilet trying to splash water that has waste in on her bottom, the care givers are trying to stop her by giving her the moisture wipes, but still is trying to be persistent of putting her hand in toilet and use her finger . We are trying everything even putting powder gentle laxative in her water every other night if she thinks she is constipated any suggestions?? We are trying to keep her home as long as possible. She is not wanting to go to sleep at night she is wanting to stay in her bathroom it is liked she is obssed with her bathroom, Dr also gave her Xanax to calm her down but does not seem to phase her one bit. Any suggestions would be grateful.

  127. My wife, Carol, age 83,has had dementia for 2 years with me being the only caregiver. It has been stressful because at times she has been combative, stubborn, ornery. This attitude has occurred almost on a daily basis The rest of the time she has been friendly and loving. She has been taking donepezil for memory, She was also taking Namenda for a couple of months but we had to stop the Namenda about a year ago because she was getting nightmares. There is a new drug, Namzeric, which she started in Dec 2015. This drug is a combo of Donepezil and Namenda. She has not had a recurrence of the nightmares. It is for treatment of memory and I have not noticed any improvement. However, her attitude has drastically changed. She has had only one episode of rage and it was short lived. She is like a new woman. I don't know if it is caused by the Namzeric but it is the only thing that has changed in her life in the past 2 months. Has anyone had any experience with Namzeric?

  128. My Mother passed for Alzheimers a few months ago. It was such a long journey that when it was close to the end I didn't believe it. Not is a bad way, I know my Mom is in heaven as she was a nurse and helped so many people. More in the way that the hospice nurse would tell me she may have a week and i just thought, o she doesn't know my Mom, she;s tough and will keep fighting this. Then Friday came and the nurse sat by my Mom's bed and said she has maybe a few hours, I still thought no,my Mom has has brain surgery and cancer and she is tough. Hours later I fell asleep next to my Moms shoulder wanting to stay awake. When I suddenly awake maybe an hour later she was gone. I almost wish someone had said to me — look in my eyes this is it– she's not here anymore stay close to her. Many people tell me i may have fallen asleep and that's when she chose to go. I don't know. I do know I miss her dearly.

  129. Hello Everyone

    My name is Julie Shinn and I own an adult day stay center in Belmar, NJ where we supervise, stimulate and organize activities and healthy snacks for people who suffer from early stage Alzeimers and dementia.

    So, if you are a caregiver, and need a break, we are here for you, on a drop in basis for an hour or a day!

  130. Hello there:
    I am writing in hopes that someone else may have had a similar experience as my Mother. She is 81 and has done the Exelon Patch but is no longer on it as the doctor stated it is really only for a short time use. Now she is on Namenda and has been for 6 months to a year, and her short term memory is still very bad. I would like to know if anyone on this blog, has any words of wisdom to share if they have had similar situations. I thank you in advance for your time.

  131. My sister is 76 and has dementia. I am searching for a place to take her where she can get skilled nursing. I am a year older than her and am handling her finances, dr. appts., etc. She orders from QVC constantly. I have talked to her about this and she gets mad and says it is her money. I have a DPOA for her. She had thousands of dollars in charge cards, QVC the worse. I hate to take her debit card away from her but she spends money like it is water and I am trying to keep a handle on her finances.. I don't know what to do. She needs her money to go into a place. It makes me a nervous wreck. I closed her membership at QVC but I guess she told them that she wanted it reopened and they did. I did send them a DPOA and they should not have reopened it. Any suggestions about how I can handle this? She is single and has two children but they have serious problems so I am the only one that can take this on. I am happy to do it for her but she has got to stop ordering and spending so much. She needs nothing. She has things still in boxes. She just seems to have a sickness on ordering.

  132. Mom was at assisted living then she was taken to the hospital and now requires 24 hr care. She was admitted 11/24/2015 and has never been back to the facility. I informed them that she will not be back and that we will have her apt cleaned out by 12/11/2015, In the meantime they took her rent for Dec plus charged her for 11 days for Jan. They have been rude, hung up on me and just now returned my call after several emails letters wanting them to return my 94 year old Moms money . Can I sue them in court or what are her rights?

  133. My 80 year old mom was diagnosed with AD about 5 years ago, I believe she is in stage 5. My 91 year old step-dad has been her caregiver, but he just passed away. Mom is at that point where she cannot live alone, but could probably convince anyone who doesn't know her well that she is just fine. My brothers and I all live in different states, so we are having a hard time knowing what to do. She adamantly refuses to live with any of her children, so assisted living makes the most sense. Our biggest problem is that we legally do not have any rights when it comes to her care. She thinks she's just fine and gets very angry at anyone who disagrees. Does anyone out there have any advice/suggestions? Also we all work so there isn't anyone who could be home with her. Thanks.

  134. Iam 48yrs living with dimentia and other condiotions. If anyone can help me find a group that voluteers who help ppeople wih dimetia. I need someone who to remind me take my medicines, remind me to take a shower and remind me hygiene and just the basic things. I am very desperate of finding help. I don't have much money. I have limitred medical benefits and I do not qualify for any goverment assistance because of my age. My condition is different because I am struggling, I feel I am still here but I need reminding to stay safe and healthy. Please If anybody out there who can give me advice. Any words, leads, anything I will be thankful for.

  135. my husband of age 69 has demintia has been saying hes going to Hawaii but I cant know details he wants his passport should i give it to him?

  136. I am a sophomore student doing a project on Music and Alzheimer's in nursing homes. I have found that many nursing homes do not provide music to the residents, and the ones who do provide music are not providing personalized music that the person will connect with. I plan to go to a nursing home near me and ask the residents their favorite music that they used to listen to. Since they don't have access to personal music players, the music will be played on a playlist of each person favorite music will be played for everyone. Do you think this would be helpful if so why, if not why?

    I think that it is detrimental to have feedback from people who are impacted by Alzheimer’s. So please feel free to give me some feedback.

  137. My husband has Primary Progressive Aphasia (PPA) and there aren't any support groups in the whole state of Georgia where we live. Most doctors don't even know what it is no less treat it. I would like to correspond with someone who has a similar situation. He is rapidly losing his ability to speak and of course showing much frustration because of it.

  138. My husband has Primary Progressive Aphasia (PPA) and is rapidly losing his ability to speak. I would like to communicate with anyone that is going through a similar problem. Diane

  139. My mother had alz. And died 7 years ago. Mom was in what I thought was the early stages when she had a stroke and that impeded her recovery. I would lke to offer this experience I had with my mother. My mother enjoyed music so we got her a headset and a cd disk player. We noticed that after each session of listening to music she always seemed to improve. This result makes me believe that sound waves was doing something to help her alertness. This was always he case. Maybe it was just that the music made her feel better, but I believe that there was something else going on. She seemed suprisingly very clear and alert when she would listen to the music..

    I suggest this theory, certain sound or other type of frequencies may disrupt plaque on the eurons.

    Consider for a minute, in Erie, Pa., there is a company doing cancer research using a type of frequency to cure cancer. I have contacted them however they we doing research for cancer only and tbey were not interested.

    At conclusion whatever the reason for the change in my mother, I was happy that her thoughts were clearer and I know for sure that she enjoyed her music.

  140. Dear Emily Rose,

    I was diagnosed with Alzheimer's approximately 4.5 years ago. I was so pleased to watch and listen to your video which gave me an idea how someone else had handled their mother's problem when she developed Alzheimer's disease. You did such a wonderful job, and since I now have Alzheimer's at the age of 89, soon to be 90, I've really really appreciated reading someone else's story. I know mine has been different as apparently all of us with Alzheimer's are effected different from eachother. '
    With love,
    Betty Trainor

  141. What a beautiful tribute to your mom-mom. She is smiling down from you in heaven that's for sure.

  142. I saw the post about mothers and daughters together. Nice for both. I have no daughter, I am no longer someone's daughter. My "family" doesn't know of my diagnosis and doesn't care anyway. I live alone with escalating symptoms. There must be others like me?

  143. hello everyone,
    My sister turned 66 in Feb. She was diagnosed with early Dementia back in 2014.
    just last week she had an MRI done(recommended by a neuroligist she is now seeing). We the family learned of the dementia last summer (2015). Before this my sister and I would talk on the phone once a week. her being in Louisiana and me here in California. Since Summer of 2015 I talk with her every day. My sister is beautiful,smart as a whip, fun to be with, and we have that you can cry on my shoulder relationship. I am learning as much as I can about this damn!!! disease. Yes, there are changes in her and short term is hard for her, but we keep on truckin!!! I pray everyday for a miracle and/or cure.
    I am glad to have found all of you. I may ask for advise at times. I am flying to see her next week. I love her so.

  144. My mom had severe dementia and recently she has been suffering from what I’ve learned to be “sundowning” . She is very anxious to the point where she is ripping holes in her clothes and digging her fingernails into her skin and very repetitive to where it’s exhausting for her and her caregivers. It’s been difficult to get support from doctors being that they won’t give her anything for anxiety, and the neuro said he doesn’t specialize on dementia however put her on valproic acid which is doing nothing. I’m looking for a doctor who specializes in geriatric care who will know of these common symptoms. Please help with any suggestions of medicine or what to do so my mom can be comfortable again!!!

  145. My mother, 74 is in a memory facility. In cleaning her house I found her prayer journals. Here is an entry from 2005, 11 years ago. I hope this will help caregivers understand what someone with Alzheimer's Disease deals with before issues are apparent to loved ones
    My Jesus, Help me to know your will for me. I get so confused, I fear losing my mind. I long to be free of this state of confusion. I want to live in the moment, but the moment brings with it the past and the possibility of the future. When I live in the moment, not remembering the past, I have no past which gives me no anticipation for the future. I only have the present. This is so scary! Without past, how do I know who I am? Who am I? Help me Lord, to know at least who I am in you. I hat this self centeredness I've become. I want to do for others, yet, I''m stuck in momement-by-moment. It is so hard to describe. I cannot do what I used to do. My Jesus, give me peace!

  146. As a caregiver for my parents, I'm looking for a library loaning program that has dvds by Teepa Snow. I cannot afford to buy them. Youtube doesn't have the full segments, just clips.

  147. My best friend was diagnosed with posterior cortical atrophy. Does anyone know if medicare will pay for a second opinion?

  148. my husband has late stage Alz.disease, after years at home with me his sole caregiver I finally had to surrender to the disease , he is now a resident at a Hearthstone in Ma. While serving in the U.S. army at age 19 he met and later married a German girl , it ended in divorce after seven years. After fifty years my husband can no longer pay an unmodifiable agreement for alimony.
    The legal fees have nearly reached $25,000 at this point with no end in sight, the money left ( under $50,000.00) is for his care and simply getting us through, after all is said and done he lost everything he worked for his entire life to opportunists and land developers ( he owned and operated a company that had been in business since 1917) because his executive functions were so impaired before he was diagnosed. Is there any way to get through this, this process seems truly insane ?

  149. My 85 year old Mother has Alzheimer's (moderate stage) and is in assisted living facility. She talks about coming to visit me and my husband at our home. I want to bring her to our home but my husband thinks if we do she will "fight" us taking her back to her "apartment" at assisted living. We take her out to lunch on weekends but a trip to our house is much farther away and she would be out for several hours. Any suggestions on making it a pleasant trip and ease her into going back to her "apartment"?

  150. Hello ! why cant alz.org conuct some social awareness programs in India ? where as there are soo many people who are least educated with Alzheimers disease

  151. Losing Bialystoker home; Losing the love in L.E.S.
    March 1, 2012 | Filed under: Talking Point | Posted by: The Villager
    BY K WEBSTER | Every life matters or none do.

    My mother battled with Alzheimer’s disease for over almost six years while living with my family. She has now lived in a nursing home for more than a year. She has severe dementia and her body is twisted into contortions called “contractions.” It’s a yoga pose that she could never have done, even in her youth. She struggles to communicate in a language that she is no longer in command of and a memory that can’t remember. In this last period, she was admitted into hospice care, which means she is leaving this earthly life soon.

    Nurses and aides now do what I used to do. They daily perform the most intimate tasks of care. Their generosity and compassion is boundless and unstinting. They have become family to us. They go the extra mile on her behalf. I love these women with all my heart. In the words of that football coach: “I’d go to war with these [women]”. And they are in a “war” with bedsore wounds that could make a soldier cringe. Their goodness is exploited. They know it, but continue to make the human choice to stay big-hearted. Most come from cultures that still think that caring for elders is a sacred obligation. Lucky for us that they do.

    So far, she has beaten the odds. She pulled out of the last decline, her wounds healed (the doctor could not believe it). We strung Christmas lights in her room and kept adding to them every day until now we are in danger of blowing a fuse. They are spectacular. She wakes up and her face brightens and she says, “Oh my,” or “Those are beautiful little adults.” The words aren’t “right” but they convey the message clearly.

    It’s tempting to laugh when she makes “mistakes” with the phrases she comes up with. But we don’t. It is such an openhearted effort. The kind a small child makes: tender, not cautious or careful, but daring and wonderful and human. It is a gift to be with her. It’s a pause from the world of “important business.” We get to remember how astonishing life is. It has never been clearer to me that each of us has a chance to be fully alive at any moment. With dementia you live in the moment because the last moment is forgotten — though the feel of connection remains. Present joys are precious — what Virginia Woolf called “Moments of Being.”

    What I find most heartening is her reaction to people who enter her room. She says, “I love you” or “I love him” or “You are my favorite dress.” She is pure love. Increasingly, any bitterness, sorrow, reproach drops away and she is left with pure love. It’s shockingly beautiful.

    I want her to have a chance at her own fight to be alive “even” in this condition. (Ever notice the arrogance of the phrase “diminished” existence?) She seems to want to. And every morning that she wakes up with that twinkle in her eye (that easily matches that of the Christmas lights) is a victory. A bit of life well lived.

    (I was inspired to write this after seeing Millie Munschein’s photo in this newspaper’s Feb. 9 article “Last-ditch effort to landmark L.E.S. Bialystoker Home.” The image showed Millie speaking at an Aug. 2011 rally to save her home, the nursing home.)

    When I see Millie Mundschein I see my mother and your mother — all of us someday. I see the closing of the Bialystoker for what it is: a humiliating defeat for our community. And a shameful abuse of the elders who lived there.

  152. My 91 year old mother, who has dementia, is in the hospital after a fall in which she hit her head and right side on a fairly hard floor. She has had two brain bleeds not considered serious, was doing a little better each day with her speech not being slurred and able to speak things that made sense. She was transferred to a unit yesterday that does not monitor her much at all, she has not been out of her bed in this new unit, and orders say she should be at least getting out of bed and sitting in a chair one time each day. Last night I noticed her fingers were swollen, something I've never seen in her life. She was back to making very little sense when she talked…using wrong words and speaking with slightly more slurring that she was before being transferred. No one will do anything to help her except for one sweet PCA who gave her a bed bath last night. She is being fed through an NG tube (through her nose to her stomach) because she hasn't passed a swallow test as of yet. They want to put in a peg tube before she leaves the hospital. She also has a cath since her bladder almost ruptured when she first was admitted to the hospital and couldn't urinate. When the doctor wouldn't give permission for the cath, a very concerned nurse put her job on the line and put in the cath. Mom immediately was relieved of 900ml of urine. I'm upset, but I don't know if she could have a UTI. What could be the cause of the fingers being swollen. They won't let her leave with the NG tube in her nose. Out assisted living facility where she lives does't allow feeding tubes but will feed her pureed food and thickened drinks, but will that be safe? Is she likely to have urinary problems when they take the cath out? It's been in for 9 days. Sorry for rambling; just sooo concerned.

  153. Join, "The Koch Boys" team in Greenville, SC

    For those of you that do not know my story, I was raised outside a small town in Kansas on a dairy farm. My father, Charles or as most knew him Charlie, was a hard working farmer. He got up every day at 5 in the morning and took maybe a hour lunch and then was back to farming until around 7 at night, this was 7 days a week, 365 days a year.
    It was a hard life on a dairy farm; always work to be done, but a lot of fun memories. One of my best memories is that when I wanted to go hunting, fishing, or needed any kind of help; I only had to tell them I was Charlie’s son; the response was always “oh, you’re one of The Koch Boys”. This was always followed with a smile and a yes with whatever I needed.
    Years ago our mother died unexpectedly, this shocked all of us but crushed our Dad. Dad fell into depression and struggled for years without the love of his life. A few years ago we saw dad had increased problems functioning in his day to day life. Little things like paying bills, keeping appointments and cleaning the house became confusing and overwhelming to him. At first my brothers, sister, and I chalked it up to dad getting older. However, as his confusion increased so did his aggressive behavior and eventually dad was diagnosed with Alzheimer’s disease. Over the years Alzheimer’s, combined with the depression, eroded our father’s zest for life, and now dad is just a shadow of his former vibrant farmer we once knew. While we are grateful that dad still remembers us, for now, and is mostly functioning on his own, he slips a little farther into the illness every day.
    So as we deal with this new chapter of our lives, I decided I needed to be proactive. Not just for me but more for my family. My concern is that one day my wife and children will have to deal with my own dependency and fading memories, should I inherit this disease. I also do not want to become just a shadow of my own self.
    This is why I am being proactive and ask for your help to be proactive with me.
    I need help… I am not only asking you for a donation for research, but I ask YOU for a very valuable item, your time. Please join me on October 8th @ 8:30 AM and take a short walk with me and team The Koch Boys at the “2016 Walk To End Alzheimer’s.”
    I know no matter how hard I work at raising money, awareness, and participation that it will not do a thing to help my dad, but it may just help my family if and when the time comes that it is one of The Koch Boys that is stricken with Alzheimer’s disease.

    Please click on the hyperlink below, or search “The Koch Boys, ALZ Greenville SC” to join my team and make a donation.
    The Koch Boy's fight to cure

  154. Attended a very informative meeting tonight at the Town of Berne Library. remember the walk to End Alzeheimer's being held on September 24, 2016 at Siena College.

  155. My father is 95 years old with end stage dementia. He also has skin and prostate cancer. He needs to have his battery changed in his pacemaker and his doctor has suggested not having it changed and leave his life in gods hands. I have been his caregiver for the last five years and don't want to see him suffer if the cancer gets worse. Has anyone else been in a similar situation. Any advice would be helpful.

  156. Does anyone know what type of rare dementia Charmian Carr died from this weekend? Liesl in the "Sound of Music"

  157. Good Morning,

    My name is Jennifer and I have been taking care of my grandmother everyday from the moment she wakes up to the moment she goes to sleep. Since I moved her into my house May of this year. I have seen a dramatic decline in her memory. At first she remembered my name and family members. Today I asked her what my name was she could not remember it or what the name of her husband was. I made her breakfast and about 1 hour later she asked me "When are we going to eat." Feeling a little worried. Ideas would be great.

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