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.

  122 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.

    • I'm Michael Fisher. I was diagnosed with Alzhiemer's approx 2 years ago. I started forgetting things like, where I put my wallet? Where did my hair go? My doctors prescribed meds to help my memory. They meds gave me headaches and stomach aches. I use the exelon patch also without issues other than 1" red spots that attracts attention at the public pool. I had a spinal tap recently to check on genetic info that could indicate Alz. I had my daughter usea a green sharpe pen to write on my back. GO EASY DOC. The doctor saw the note, laughed, and then stuck me good. Even with alzhiemers I'll still be able to remember not to tease my doctor.

    • My husband has been on Aricept with Namenden for over a year, I felt the meds were working well until recently. He is starting to feel depressed because he can't do a lot of the simple things he used to do. He has also asked if there is a support group for the person with alzheimers, it makes sense to talk with other people with the disease so they know what is happening to him. I don't think the "reading" about the disease is helpful for the emotions of the person with the disease, can he really understand or is it dangerous for him to know what is coming in the future???

  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.

    • Nice to hear that your mom is at 80% cognitivily. I also take namenda. I tried takingArricept but it made me sick to my stomach and gave he bad head aches.

    • My mother's doctor also put her on the Exlong patch for a few months, but I not see too much of a change, in fact she seem to have declined more. The patch also left dark markings on her skin. So I stop the patch treatment and just continue with the Namenda.

    • Hi I am Donna I have Alzheimer's and I take aricept and nemenda I am 43 it is working 4 me you should keep your mom on it it works I can tell

  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.

    • Sue,
      I have been a caregiver for nearly 18 months, and I treat her like she is family. By putting myself in her shoes, it helped her to bond to me and vice versa. It still took time, but she finally responded. You said that you have worked hard at accepting and adapting, and I’m not sure what you mean by it. If that means that you give person-centered care, give it time; he/she will come around.

    • Sue, I feel your pain. I took care of my Mom(my best friend) for over 13 years, beginning and end of Alzheimers. I just lost her in January, and it's been very painful. Not only that I miss her, but in the end, because I had to put her in a nursing home (she died within 6 weeks) but I believe she thought I didn't want her anymore. I also cried everyday and still do. Before this, she was at home with me. We were very close, and she always wanted me to be there. When she was with a caregiver that she seemed to relate to, I was jealous in a way, but if I saw she was happy or even just peaceful with them, I had to be grateful. You never transfer your affection, you are just sharing her..letting other people love your Mom too. Hope this helps.

  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….

    • Pam – My mother who has dementia had a somewhat similar experience this year of doing fairly well, like your mom, then making a huge decline after being in the hospital for a blocked bowel. They kept her in the hospital for a week giving her Seroquel to calm her down due to her agitation from being in an unfamiliar place with nurses giving her enemas, etc. She could hardly walk or talk after that experience and once the meds left her system she gradually became better. Currently we don't have my mom on any dementia med like Aricept or Namenda since she ended up losing a lot of weight on them and I didn't feel they were doing her any good at her advanced stage. So at this time we just have her on an antipsychotic to even out her moods and agitation. I hope you find a treatment that works for your mother. This is a difficult process to go through and my thoughts and prayers go out to you and your 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.

    • Diane-The exact same thing happened to my Mom and the Social Worker prevented us from getting Mom into several facilities. I eventually reported her to the State and the Ombudsmen and was finally able to get Mom into a certified Alzheimers and Dementia facility! Leaving Life Care was a good thing!

  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.

    • ihave worked in alf and ur mom does not belong ina phych ward-wonderng off-we call eloping is normal in her condition as is the use of choice wrds on a bad day-so sorry the alf u choose was not up to pare in dealing with ur mother-find another one

  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,

    • Maybe if you get her doctor involved it can help you to get your Mom into the facility that she needs to be in and deserves to be in. I don't know if they have it in your area, but where I live they have facilities for Alzthiemer's and Dementia. Also, do some research, because more than likely her insurance will pay for someone to come into your home and care for her. And no your Mom is not crazy, and she deserves the best with dignity. Please remember that you are now her voice. And take it from someone who knows, even when you can't understand her . . . . she can understand you!

    • Diane, no your Mother does not belong in a psyche ward. But, perhaps a facility that specializes in Alzheimer's and dementia.

      I had a similar problem with my Grandfather, who would always try to leave, so we had to place him a center that had a special ward that locked down. I agree with Nichol that you should try to get your Doctor involved as much as possible. Communication is so important. Understand the medicines being given to your Mother and WHY they are being given. Educate yourself as much as possible on these, so that you can make the right choices for your Mother.

      I had to fight for my Grandfather's rights when they wanted to give him a medicine that was unnecessary for his health. In our case, he was the only male patient on the ward and when another patient decided to join him in his bed, they decided that my Grandfather needed saltpeter to curb his appetites. The other patient's family was upset and wanted something done. I understand their reasoning; however, it was their family member climbing into bed with my Grandfather, not the other way around. I refused the medication and told them to do something else -to protect MY family member from being abused.

      You are the only one who can fight for your Mother's rights, her dignity. Also, it may help to write your Congressman for help. Get them on board with a pro-Alzheimer's attitude.

      Good luck in your battle. My prayers are with you and your Mother.

  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!

    • Nichol-Please tell me how you know that the family member understands what you are saying? I feel like Mom does but I am not sure! I want to believe it.

    • Yes, so very true

    • Thank you, I so needed to be reminded of that. My mom has always been one of my best friends. and is the most dearest and important person I know and love. May all that you are, bring beauty around you always.

    • I agree 100%. I lost my mother Christmas Day 2009. She suffered the effects of Alzheimers for 8 years, the last 5 were in a nursing home. I work where Mom lived so I was able to see her everyday. My father visited her 2 times every day. The rest of family came regularly to see her. There were many times we could still see Mom in her eyes. I truly believe it was my dad's love and devotion that kept her going. We did learn her ways of communicating. When she put her hand to her mouth it meant she was thirsty. And yes, she did understand what you was saying. My Dad had a 4-heart by-pass. Mom sat looking at the door all day. Some thought she was just wondering where he was, and why I wasn't at work, but a co-working friend of mine said "Ruby, Frank is OK, he came through surgery just fine" Tears ran down her cheeks. Absolutely yes – they hear, they know, they just can't communicate. I treasure every minute I had with my mother. Love LOVE L O V E them!!

    • Thank you, sometimes I am so overwhelmed and sad that my mother is not able to speak I forget she is communicating in other ways that are just as important to understand, Taking care of my mother is the "hardest" thing i have ever done, including raising a child alone. I have a lump in my thought that won't go away. Her doctor told me she she has many for phases to go thru and will live serveral more years, I wish that gave me relief instead it makes me even sadder. Appriciate you works of wisdom. Teresa

  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.

    • Wow, your comment "what the brain is unable to comprehend the eyes do not see" is so true about my wife (dx at age 59 with mod AD) in every way…she will be looking for a book or clothing of some sort and just not see it as it presents right before her eyes without my actually putting her hand on it….then wala! So mysterious…..I work in healthcare (acute care) and have for over 30 years and managing her and the perception issues alone (not to mention all the other symptoms and impairments) has been, well…eye opening (pun intended I guess, grudgeling though). Take care Dr. B.

    • My husband has been diagnosed with AD for the past 3 years. He takes Namenda and Aricept. He also takes Cerefolin NAC which is a prescription cocktail of B vitamins which showed positive results from a small Australian study. I found it and showed it to his neurologist who said it wouldn't hurt him. My question is addresses to your expertise and field. My husband can't seem to see things in front of him with any clarity/acuity or contrast. I may say it's in front of you, or to your right, left etc and he's feeling around with his hand. I have had his eyes checked and they say he's ok although I just don't know how that can be with how I see him function at home. He's always looking down. When he watches TV I'm not sure he sees all that is happening. I'm not sure if this is his brain not understanding or if there's something visually impaired but not noticed by his OD. Any thoughts?

  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?

    • This is tough and exhausting, I know. My 89-year-old Mother with Alzheimer's is convinced our daughter stole her car. She tells everyone, wants to press charges, etc. This has been going on for six years! We tell her she gave the car to her granddaughter and that she loves it and really appreciates it. Sometimes that satisfies my Mother. When it doesn't, we change the subject. Rationalizing is useless, she doesn't get it. Ever. For six years. The best tactic is redirecting. The sooner your family understands that reality is pretty much gone from the equation in dealing with your Mother, the easier it will be on everyone. I wish you well. I know I wish someone had told me sooner to just relax about making Mother understand "THE TRUTH", the journey would have been so much easier.

  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.

    • Your daughter is 19, she´s is an adult. You have to let her know you can´t bear all the weight on your shoulders and that you need her help. Don´t forget that you have to get through this as a family you´re not in this alone. I know sometimes life isn´t fair but we still have to go on. I wish you the best.

      • I have great sympathy for you, my wife was diagnosed at age 59 but I knew she was imparied several years before. She is now at a mental / emotional age of 5 but with a 55 year old memory (she is now 60 1/2 and on namenda and aricept and paxil cr). It is extremely hard being the sole caregiver; we have no children or other family except for my mother who is 84 and a little goofy with her age but basically will be having to care for her once I am fully employed again. I am too young to retire (63 1/2) and need to work to keep up expenses but I am not sure how long my mother will be able to handle her. Yes, use you daughter's help as much as possible, yes it will deeply detour her youthful experiences but perhaps enrich them in the long run and lead to a health associated career, who knows? But get her help and you need to work (as I do) to just get out of the crazy-house for 8 hrs a day…..you will be a better caregiver for it.

    • I just want to mention that I understand and empathize. My husband was diagnosed at 65 but probably had early signs at 63. His driving was erratic and mood swings, depression and bouts of anger. At the time, I was working full time as a teacher and he has retired from 20 years as an AF nurse and 10 years as a school nurse. He was volunteering as a school tutor. He will be 68 this year but at times he acts like an 8 year old when it comes to not doing things, arguing or pouting.. This diagnosis is a kick in the stomach for all of us. He can still take care of some personal needs and walks but he doesn't know what to do with his time and is very needy and dependent on me for directions and just day to day basic actions. We seem to live in the past since that's what he remember but I have to finish sentences or supply the word/thought/answer to his stories as he recounts them to people. At timesI feel like I'm losing myself and my future. There are days I cry a lot and get angry even more. The guilt I feel at some of my feelings is burdensome. I'm still trying to figure it out but I have come to realize that none of those feelings are healthy or productive for me. So, as best I can, I have decided not to dwell on the negatives or fight the small stuff (mis-buttons his shirt, won't eat my dinner, or asks me the same thing again and again) I'm taking it day by day and trying to make it a good day if with NO arguments. This is not the man I married. He was so smart and adventurous. I hate this disease for robbing me of that man. I know he's going through his own HELL too. As for the financial part, early into the diagnosis, I spoke to an estate lawyer. I would recommend you do the same and put as much as you can in your name. State laws vary but we worked too hard for our retirement that neither one of us wanted to see it eaten up by this disease. It's expensive to put a loved one in a home and at some point I will have to do that since at 65, I won't be able to do it on my own. With care costs being more than I could earn in a year, we would have to spend down our own finances before qualifying for specific assistance programs. Unfortunately, your daughter will have to do a lot more on her own but at 19, she'll have to understand what you are going through, what her father is going through and that she's got what it takes to achieve her dreams if she puts her mind and heart into it. I'm sure she will be a big support to you by removing that pressure/concern from your plate. I've learned to ask for help from friends and neighbors when it comes to handy work around the house and I've learned to change water filters, run a snow blower etc. on my own. You will too! Will one of your husband's male friends spend some time (2-3 hrs) one or two days a week consistently so you can have some down time to yourself? Make that list. If so, don't use it to do errands. Use it on yourself if it's only to read a book, take in a movie or lunch with a friend or get a message. I take my husband with me to do the errands. It gives him a change of venue and he enjoys talking to people we run encounter. Research what your community offers in the way of Alzheimer's Organization, meetings, support groups. I also find quiet time early in the day to pray for the Grace to get through just that day. Finally, I hope you can see that you're not alone. Hope this helps. Take care of yourself.

    • My husband was is 65 and was diagnosed in Jan. He had to stop working (dump truck driver/local) because of confusion and safety issues. I'm 63 and hope to work for 3 more years but he's having a really difficult time, feeling guilty that I'm still working, and wants to return to work. Both of our children live in other states and my biggest fear is not having family support. I'm already checking into adult day care facilities which I hope I won't need for some time. I worry about everything and while everyone says I need to take care of myself, I just trying to keep my job and him safe.

    • Hi our mother was going through the same thing. What we did was asked around for places that offer services. The Adult Day Care Center for those with the disease. So long she was able to walk in and not bed ridden, they were able to take them in. My brother has been taking care of her as he became her primary guardian. He knew what had to be done so we could be able to provide income to help with the medical cost and supplies that she needed everyday. At first it is an adjustment but individuals with this need a social group of people to keep them occupied. The center arranges to pick her up and drop her off at her resident. We just have to assure that someone is home when the bus arrives. So far she is enjoying it and she has been going for over a year now. The medical professionals treat them very well and we have established a positive relationship with their staff. At this time because of the medication doctors prescribed her. We have turned to coconut oil because honestly it is doing wonders for her. She does not get grouchy, is always cooperative and most of the time she looks much brighter and healthy. This was our only resource because all other family members have to work for their own families. If there are family members it helps to take turns watching and caring for her. It is very draining and stressful if this is a daily routine for the caregiver providing this care everyday. So in helping her with her diet and her mixing the coconut oil into meals. At this day she is looking and feeling much better. Be patient and do let her know that you love her. They are sensitive at times so take each day one day at a time. God is always going to be there in her time of need and you will know that when he is. I will pray for you and your mother. Your going to make 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.

    • Thanks for reminding us that this president has made Alzheimer's a disease not to be ashamed of ,but to try to manage and cure. We must find more ways to fund the research and get younger people involved in the association to keep the disease awareness in the forefront.

  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?

    • Yes, in fact I find it a problem every day. My wife of 27 years was diagnosed at 49, and is 54 currently, although it took 2-3 years to come to the diagnosys. Every morning trying to get her into the shower is a problem, as well as going to bed each night. She doesn't recognize me, knows she's married, and knows she should not be in a shower or bed with some strange person. I very calmly respond, who I am, and use a simple reminder to her of where she was born, moved to, went to school, her best friend, and where we met. It usually calms her down, and I am able to get the normal daily routines completed. Keep in mind my wife is completely unable to complete any task, so bathing, dental, restroom activities have to be completed by myself or daughters. Sometimes she will not have any part of me assisting, so I call for one of my daughters to take over and gives my wife a new choice. I have been very lucky to have 2 awesome teen daughters who have been able to assist me through school and work schedules.
      What works best for me is PATIENCE, and also find something familiar in conversation that will earn their confidence. Be calm and steady in voice. Good luck, I hope this helps.

    • Hi Lisa. My mom is also suffering from Alzheimers since the last 6 years and my dad is the the one who stays with her all the time. As I see in most cases the caregiver becomes the enemy no. 1 for the patient from time to time. Even my mom sometimes gets very angry with my dad accusing him of smoking (We are a family of non-smokers). The best way to control the patient at these times as we see is to let the caregiver move away from the patient for a few minutes and if your mom likes children then have them come to her and give a hug. My mom is very gentle and receptive to children. Sometimes she does not want to go out for a short walk and these are the times my daughters go to her and give her a hug and she agrees finally. Every patient is different but we as caregivers need to share what we can and their lives at least a little more comfortable. God Bless… Bobby

    • Hi Lisa…the same thing is happening to my brother. My mom has dementia and all of a sudden doesn't know who my brother is…she knows my sister and I but is forgetting him.mif other people are around she is okay but when left alone with him she asks who he is? Any reasons or answers for this?

  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

    • Jean,
      If you need more information, the Alzheimer's Association has a free 24/7 Helpline that can provide support and referrals (1.800.272.3900 ) and a website with more resources. <a href="http://www.alz.org” target=”_blank”>www.alz.org

    • Go to a research center that can do a Pet Scan. This is the same thing that happened to my husband and so he did not get any help until it was well advanced, between the mild and moderate stage. The Neurologist said that it showed on the MRI, which was given 6 years earlier, but the so called Neurologist earlier
      was not sophistcated enought to identify it.

  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.

    • I use a pure coconut oil spread and put it on my husbands favorite sandwiches. It doesn't affect the taste for him. I like the flavor myself and have used coconut oil to cook fish and vegetables.

  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. Thanks for your time for another wonderful article. Where else could anyone get that kind of information in such a perfect way of writing? I have a presentation next week, and I am on the look for such information. =-=

  25. 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.

  26. 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

  27. 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

  28. 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

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

  30. 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.

  31. 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.

    • Linda, my husband too has been diagnosed with EOA in August of 2010. We have added Coconut oil to his diet and have found its been helpful to slow this down and even enable him to do some things that he previously could not do. I give him 4-6 tablespoons a day. I pray that there is soon a cure. I follow Science Daily.com for updates, you can request all topics on Alzheimer's to come into your inbox as something new is happening around the world.

  32. 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.

  33. 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.

  34. 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.

    • Lorraine – I understand your thoughts. I will be 58 in one month. I too am physically fit. I weigh 130 pounds and exercise every day. I wish both of us the best. I'm sorry about your situation.

  35. 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 .

  36. 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.

  37. 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.

  38. 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.

  39. 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.

  40. 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. http://www.youtube.com/watch?v=oCvO22w41Yk&fe

  41. 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

  42. 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.

  43. 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!!!

    • Pamela, I do this back and forth with my mom too, and sometimes I think it would be better if I just lived with her, but I'm married and have my own home. I spend four days at her house with her and then three days at my home, mostly picking up the house after my husband. I've been doing it for five years now. It's starting to feel like my house is just a stop over and not my home. I have close to zero ambition to do anything when I get home. My husband, who still works, also tends to his own mother who has Alz. as well. He's with her all day Sat. and Sunday, so I see barely see him. I don't think my mom would want to move in with us, she is very attached to her home and my house ha.s to many stairs and would be unsafe. So for now we are stuck in this situation too! Later, we plan on selling and buying a ranch so she can move in with us, but I don't think that will pan out. She is also on a waiting list for an Alzheimer's facility if she gets to the point where I can't take care of her. I noticed your post is over a year old, hope you resolved your situation for the best with your mom.

  44. 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.

  45. 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.

  46. 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

  47. 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

  48. 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.

  49. 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.

  50. 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!

  51. 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.

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

  53. 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?

    • Sandy anything you can give him that will have a stabilizing effect on his moods will ultimately better yours, as you are the one dealing with him the most. My husband is on a low dose of Seroquel, taken at bedtime, which has helped him sleep and have fewer hallucinations.

  54. 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.

  55. 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?

  56. 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?

  57. 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?

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

  59. 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!

  60. 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.

  61. 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.

  62. 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

  63. 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.

  64. 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.

  65. 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?

    • Kathy, my mom did very well. She had been at my hometown AL but we moved her closer to me and I worried about a roommate for her and how she would do. You have to find the right fit and talk to the building about it. It all worked out fine. I write a blog called the Lemon Bar Queen on WordPress. I'm a nurse and deal with issue everyday with my mom too. Maybe that would be of help to you. Good luck!

  66. 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

  67. 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.

  68. 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.

  69. 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
    https://www.youtube.com/watch?v=k98wm7o4pfw 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

  70. 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

    .

    • Appreciate this info. My wife is on donepezil (Aricept). Don't know what your experience with Alz drugs has been but the drug has been totally worthless.
      How long has your Dad been using this supplement? After initial improvement, has it continued to work effectively?
      Did his doctor approve or try to discourage using this product?
      Sorry to ask so many questions but our doctor is adamantly opposed to any supplement use.

  71. 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?

  72. 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.

  73. 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

  74. 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

  75. 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.

  76. 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.

  77. 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.

  78. 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…..

  79. 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?

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