Jul 062015
 

Five years ago, after being diagnosed with Alzheimer’s, my mom Sonia moved from Chicago to Missouri. She lived with my brother for a month and then with my sister for about a week. It was soon obvious that I had to take over the responsibility of being her primary caregiver. We were always inseparable, but now we are more inseparable thandaisy1 ever.

Due to a very long history of Alzheimer’s in my family, I was asked if I wanted to take part in a clinical study, which included a test to see if I carry the gene for early-onset familial Alzheimer’s.* I didn’t think twice. My brother and sister chose not to take it, but the minute it was brought to my attention, I wanted to do it. It was in my head from the beginning – what if I have Alzheimer’s and it is exposed at age 42 or 43? I am almost 40. Who is going to take care of my mother? Who is going to take care of me? I had to prepare myself.

daisy4I worked on getting all of my ducks in a row, taking all the proper measures and precautions.  I got life insurance right away so that someone would be able to take care of my mom and not have to put her in a nursing home. In addition to taking care of mom, I had to be willing to accept whether or not I will have the disease. Three-quarters of my family has passed away with Alzheimer’s. I am the only one of my siblings that wanted to be tested. I would like to think that I inspired my cousins – who are now interested in finding out if they carry the gene – as their mother was recently diagnosed as well.

As for me? The test came back positive. One day, I will have Alzheimer’s.

I don’t think of it; I simply shrug it off. I just see what my mom is going through and know I need to take care of her. In my younger years, I was a bit of a party animal – I owned a sports bar – and now my mom is my main focus in life. How can I be a caregiver to someone I love so much and not stand up for her and her needs as someone with the disease? She is what matters the most.

My typical day is very different from what it used to be. I wake up, make coffee and then wake up Mom. I often have to strip the bed and then take her to bathroom and get her into the shower. Then I brush her teeth, dress her and do her hair and makeup. I take her to work with me at my sister’s restaurant, and she is with me all day until I get off work. We often go on a walk to get some ice cream and go to the park. I end the day by taking her home and making her dinner. After she goes to bed, I go to sleep, and I do everything again the next day. It’s a whole new life.daisy3

The Alzheimer’s Association has been there for me every step of the way. I had already been on team Sonia’s Angels in the Walk to End Alzheimer’s for the past few years in support of my grandma and my mom. When I was diagnosed by my genetic counselor, I received information about grieving, counseling and caregiving from the Association. In my previous life, I had never been an activist; I was the quiet one. Now I advocate for my mom. If you wish to see a change in the world, you have to step up.

My involvement in the Dominantly Inherited Alzheimer Network (DIAN) study means that I take a variety of medications and skills tests. Although the whole group is supportive and loving, the medication is physically very painful for me. All the same, if my participation helps find a cure for someone in the future – whether it’s me or my nieces and nephews – I will take all of the pain. I try to stay positive. Everything happens for a reason, and life is too short to just mope around.

daisy2I help spread awareness because there is a stigma surrounding age and Alzheimer’s. People always tell me that I look 21 years old and can’t imagine that I could develop this disease at any time. The truth right now is that Mom has the disease; I have the gene, but I don’t have the disease yet. That is why I try not to dwell on it.

There is simply not enough money or exposure for Alzheimer’s. We have to get the word out in order to save the future for others. The more awareness we can raise, the better it is for the disease. We need to find – and fund – a cure. Alzheimer’s is currently the 6th leading cause of death; we must make strides to end it now.

 

*Younger/Early-onset Alzheimer’s caused by a genetic mutation is rare and the vast majority of early-onset and late-onset cases cannot be determined by a genetic test. Health professionals do not currently recommend routine genetic testing for Alzheimer’s disease, although testing for APOE-e4 is sometimes included as a part of research studies. For more information on Genetic testing, click here.

About the Author: Daisy Duarte, 39, is a caregiver for her mother Sonia, 59. Daisy speaks to colleges and other groups to raise awareness in the fight to end Alzheimer’s. Daisy and Sonia live in Missouri.

Learn more:

TrialMatch
Genetics and Alzheimer’s
Caregiver Center

  74 Responses to “Be the Change You Wish to See in the World”

  1. You are an angel for your mom Daisy. I pray God rewards you with a cure, or your very own angel to watch over you.

  2. God Bless and protect you for All that you are doing and may God help your mom for the remainder of her life.

  3. My Mom passed at 62 from, so they said, early Alzheimer’s ! It began in her early to mid fifties ! She was never autopsied and the diagnostic techniques in the seventies and early 1980’s were not as accurate ! I’ve had 3 first cousins pass doe Lou Gerhigs Disease, ALS and my brother and I often wonder if it really was that ! So far, he is healthy at 69, I am still going at 72 ! I guess if was an inherited form of Early Onset Alzheimer’s, we both either lucked out, or it wasn’t that !

    Thanks for sharing !

  4. I can relate so much to this… My Mom had ALZ… She passed away last year. I know exactly what you're going thru. How can I find out about being tested for ALZ?

    • Hi Naomi,

      Younger/Early-onset Alzheimer’s caused by a genetic mutation is rare and the vast majority of early-onset and late-onset cases cannot be determined by a genetic test. Health professionals do not currently recommend routine genetic testing for Alzheimer’s disease, although testing for APOE-e4 is sometimes included as a part of research studies. For more information on Genetic testing, visit the link below.
      http://www.alz.org/research/science/alzheimers_di

  5. It is a dreadful disease, and scary to anticipate. My mother had early onset Alzheimer's, at age 58. She lived with it nearly 30 years, 20 of those in a nursing home facility (with marvelous care). I have always worried about getting it. I am close to 69 now, and sometimes a little forgetful. I pray that is all the comes my way. We need SO much more research. Daisy, thank you for sharing your story, and may your future be one that is manageable by you.

  6. God Bless your family.

  7. God Bless you. I will keep you and your Mom in my prayers.

  8. Thanks for speaking out, I have Early- Onset as well, diagnosed at 52 years old. More people need to know about the journey and help advocate for finding a cure. If they can do it for cancer they can do it for Alzheimer's!

  9. Daisy, you are an angel both for taking care of your Mother and for participating in the study. My prayers are with you.

  10. God bless you, Daisy, and your mother and your family.

  11. You are such a blessing to your mother and to the Alzheimer’s Association. I too took care of my mother who was diagnosed in 2008.Although she was older than your mother, never the less the responsibility can be very challenging. We lost my mother in 2013, at the age of 91. With assistance she did well in her daily activities, It was not until the last 2 weeks of her life that things took a turn.
    Thank you for being an advocate for your mother and for the cause. I was a volunteer for the association when my mama was living and continue to be today. They have given me so much and I must pay it forward.

    God Bless you!

  12. You are truly brave and inspirational. Your love and commitment to your mother is so moving and loving.
    I hope for both of you that treatment progesses enough to ease the impact and pain of this horrible illness,
    Meantime, keep fighting, your advocacy is helping bring attention to the cause, which we all need to advocate for
    to get more support. You are already making a difference!

  13. Thank you for being an advocate for your mother, your entire family, and for the cause. My husband and I cared for my Mother in our home, also. I feel we each need to do a part to find a cure. Again, thank you. Know that others are praying for you both and sending you strength.

  14. I want to say, you are amazing. It is a hard job to take care of a love one with alzheimers. My mom is going to be 90 years old on November, my two sister and I take turns taking care of her. I am honored to take care of this wonderful person who gave me life. I wouldn't have it a way…… She is living with the disease since 2002. She is such a joy.

    You are amazing and an inspiration. Yes, we really have to find a cure for this dreadful disease.

    God bless

  15. Daisy thank you for raising awareness. I do what I can also. My dad has Alzheimer's which is a terrible disease and I agree, we need a cure, SOON! My dad was a strong strapping US Marine and to see him with lost memory and needing help to dress and the sun-downers at night just breaks my heart. But I stay strong for him and for my two children who we all moved in with dad to help with his care when he lost his second wife unexpectedly in 2011, my stepmother who was 10 years younger than dad. Our lives changed forever, and I am pleased to see how my children have stepped up to help with grandpa. It is a daily battle to stay positive for them and myself, and with God's grace I am able to do so. My siblings help which is another blessing and we have caregivers during the day. God Bless, and thank you for your work!

  16. It,s good to hear that you can be such an advocate for not only your mother but the thousand of unsung heros that care for a love one with Alzheimer's . My husband was diagnosed with Alzheimer's at age 57 and is now 65. I care for him at home with my daughter who left her life and moved in with us to help care for her father. He is in the later stages and doesn't know what is going around him. Ever now and then we see a flash of "Andy" but that is getting few and far between now. I worry so much about him especially now that I have serious health issues myself. I was in the hospital last month and it was tough going for a while. It looks like a Liver transplant is in my future. Caused not by alcohol or street drugs but by medications given to me for diabetes and other problems. Alzheimer's is a terrible disease and you don't know how much until a love one is diagnosed with it. I pray they don't stop until a cure is fount.

  17. Thanks for all you do Daisy. I note in your blog that you are able to go to bed and sleep at night. That's wonderful and I hope it continues but my mother kept me up night seeing people in the house and demanding I get rid of them. would not stay in the bed and would roam the house at night and wake me up hollering as she had fallen somewhere in the house. One night she changed clothes all night saying she had to find something to wear to church. My sister moved in with me and the both of us stayed so exhausted we finally had to put her in a nursing home. She has been gone for 2 years and I still cry with the guilt feelings of putting her in the nursing home.

    • You shouldn't feel any guilt. You and your sister did the best you could for your mother. God bless.

    • Shelva, it takes a long time to dull the guilt over the decision to put a mother or father, or anyone in the care of a nursing home. My Nana was the same as your mother, and no matter what Mama or I did, the 24-7 care she needed wore us out, physically and mentally. My mother has the beginning stages of alzheimers and I hope I can make the right decision, although the guilt is already here. Bless your heart.

    • Don't beat your self up for putting your mom in a home. There are people trained to take care of folks with this dreaded disease.

    • i recommend that you work at getting rid of the guilt. it's helping nobody. my mother has late stage alzheimer's and lives a world away, in italy. i never considered leaving my life and work here in the US and move back to my home country to take care of her. there's a husband/father there who rules with an iron fist and wouldn't let me do a think to improve her (and his) quality of life. her condition was mismanaged and there is nothing i could have done. so, i decided to disengage, for my own survival — i am also a cancer survivor.

    • Shelva,
      First of all, stop feeling guilty!,,
      The fact you are still "alive" might very well be, in part, because you DID finally put your mom in facility that had a few more resources than you and your sister had or could provide.
      Note that I said: "resources", I didn't say "better care"! I don't believe ANYONE can take better care of our LOVED ONES than we can. It's our undying LOVE that drives us to the ninth degree of our effort towards them. But there often comes a time when we must accept our own knowledge of common sense and reality that we now need more help! We KNOW in our heart that it's absolutely warranted, not to mention long overdue! Our once relentless desire and strength has now come full circle and we MUST FACE REALITY. we cannot do this anymore. Shelva, you and your sister are gems. You should be ever so proud of ALL YOU DID FOR MOM AS WELL AS "BEING GRATEFULL" that you were ABLE to care for her as long as you did. Thank you for sharing your experience and try to enjoy the memories dear and "Let Go" of the guilt. God Bless u both

  18. God Bless You!!!

  19. my mom had Alzheimers as well she passed in January 2009 My 2 sisters and myself miss her . We cared for her the best we could My father was still alive not well at the time but was the prime care giver for her. It was hard we had to bath her , clothe her and make her eat .She wouldn't talk she just shut down. We got so depressed. I went to support groups it still did not help.I'm coping with it now only because I believe in God and she is in heaven looking down with no more pain and suffering But I miss her so much.

  20. Hi Daisy. I truly understand what you are going through as my father has Alzheimers. I moved into the home with my parents in 2011 to help take care of my father as my step-mom was not in good health. It was truly exhausting. My step-mom passed away in November 2011 and I continued to take care of my father until February of 2012. He then came down with Pneumonia and had to be hospitalized. I became so weak from taking care of him that I could no longer be his primary caregiver. He then went into a residential care home. He is still "hangin in there" which is his favorite saying. My dad is a very strong person and has survised many medical issues. I am blessed to still have him in my life.

    I pray that God will give you strength to endure during this difficult time and give you rest and peace. Be Strong!

  21. A blessing on you both. Hang in there.

    • Bless all of you. I take care of my husband who refuses to be tested for Alzheimer's, but he has all the symptoms. Two of his family members called and told me he had it also. I deal with it alone. It's better this way now, but it is tough. He refuses to go anywhere but the doctor. I take a day or hour at the time. Please pray for me. Martha

  22. HI my name is Rosemarie. Unil June 28 when my mom passed away from Alzheimers at age 86, I took care of her with the help of a few great ladies . It seems to always fall on one family member to be the sole provider. I pray for families that are affected by Alzheimers that they may stick together and be supportive of each other both physically and mentally. This disease caused me the loss of my mom and two siblings that unfortunately projected their guilt and anger towards me.. Fortunately, I have a loving and supportive husband that helped me with mom more then her own sons. I hope and pray for a cure one day so my children dont have to go thru what I have endured over the past few years.

  23. god bless you Daisy, thanks for all you are doing for everyone, for us, for our mothers, father, sisters, brothers. My mom also has dementia, she is very aggressive , she hardly recognizes us, my dad,her house, for her we all are different people different days. Right now my dad takes care of her most of the time, family helps too, every day after work I go to help (cooking, washing, cleaning) it is very hard. Right now I'm in a process of looking for someone to hire to take care of her with my dad. Daisy I wish you all the best in life

  24. Shelva, do not feel guilty. As for me, if I am handed a diagnosis of Alzheimer’s I hope I have mind enough to take my own life.

  25. Daisy,

    I want to thank you for sharing your story with us; you’re remarkable. Caring for a loved one who suffers from Alzheimer’s Disease is not an easy task. I share your plight and can certainly understand some your experiences with this disease.

    Professionally, I am a Registered Nurse and elected to stop working in order to care for my mom. Further, I placed my Master’s degree on hold for a whole year, so that I could devote my entire time to her care; a 24 hour a day job. As her only child, I did not think twice about placing my life on hold. After all, my mother dedicated her entire life to caring for me; we were very close. She finally died last April, 4 days before my birthday. But if I had to do this over again, I would without question or murmuring.

    Please feel secure in the knowledge that you will gain strength to continue this road until God says it’s time to rest. I prayed for my mom to die, since she was suffering so much. The decision to place her under Hospice was difficult for me, but it was the best thing to do. The nurses and ancillary staff would come to my house and provide the care that she needed. Unfortunately, like everything else in medicine, the visit were regulated and the Hospice could only help with 20 hours per week; the rest of the time was on me. Restless nights, anxiety, and my mom’s inability to recognize me were the worst part of my situation. However, it did not last forever and gratefully, my mom is now resting and in peace. I still have not achieved peace in my heart, but I know intellectually that I did the right thing.

    My prayers are with you, your mom, and your family. You are truly an angel for taking on this difficult task ahead. Please understand that you are not alone. Reach out to family, friends, and your God for help and guidance. “When ye are in the service of man, ye are in the service of God.”

    Blessings and comfort are my wishes for you.

    Tony

  26. Bless you, Daisy, as you bless your mother. You are doing everything that you can and that is wonderful that it is working out so well. Should things change and you find yourself unable to care for her, do not beat yourself up. Take care of Daisy! She has to be well to care for mom or just to live a full life.

    With the knowledge of the ALZ gene, know that your chances are that the disease will arrive at some time, but there is no absolute certainty in much of anything, although the statistics say that if any of us lives long enough, dementia (if not ALZ) will set in.

    My husband died almost seven years ago following several years of early on-set ALZ. I understand the path you walk.

    God bless.

  27. Daisy, you are an amazing person. My mother is 94 and lives with my sister overseas. Every month I go over there to help my sister out. It's not an easy job. My prayers are with you and your mother.
    Again, you are just amazing

  28. Dear Daisy, I lost my precious mother to alzheimer's in 2012, I feel for you. Dad and I cared for mom and it was very difficult for my Dad as they were high school sweethearts. Dad will be 80 soon and I am so blessed to have him. Mom was a light in our lives and she still is with me but I miss her sweet smile and arms around me as well as her prayers,she loved God and always told me He is good no matter what and I do believe that. My grandmother's had the disease too. I am trusting God for the direction in my life. God bless you as you care for your sweet mother.

  29. I too took care of my wonderful. Momma who had Alzheimer’s. I look back &see the mistakes I made &I hope GOD & my Momma have forgiven. Me for them .my beautiful mom passed away a year ago in june i miss her everyday .i would like to be tested for the Alzheimer’s. Gene you are brave &courageous. Keep up the good work with your mom,sincerely. Deborah. Russell

  30. I have been there and done what you are doing with your mom! God bless you and remember to also take care of yourself and to keep Jesus close to your hart

  31. What an amazing story. I am about to retire at age 60 and been thinking of a cause to spend time on for the rest of my life. I think it’s going to be Alzheimer’s and you! (My dad died of Alzheimer’s and so did my mother in law with early onset. I have to do this for not only you but for me, my husband, and my kids. God bless you and your mom!

  32. My Mom has Alzheimers, and I have been her caregiver for 10 years, she is now approaching the final stages, I too went through the same thing as Shelva, but I couldn't afford to place in a facility so I had to weather the storm. I realize now that every stage that my mom went through was difficult for me to watch, but in time all the sadness of watching her change become something I had to learn to accept, now I am glad I didn't have the money to place her. The caregiving for her now is extremely hard, she can't do anything for herself, like many of you I have do everything for my Mom, from dressing, feeding, helping her walk, to changing diapers, I have to do everything. I now understand why caregiver has no choice but to place their love one in a facility, at first I didn't understand, but now I do, after a while their care becomes totally physical, and that can be very hard on the body (I am 64 and my Mom is 83). But like all of you all we can do is continue loving our love one, and keep them safe, I pray for the day when a cure can be found.

  33. I applaud you for your courage and dedication. I’m taking care of my mother who has dementia. She was diagnosed in 2008. She began forgetting little things, and she’d fall a lot. I think those are early signs of the disease, which is part of the ALZ “family” of diseases.

    My mother sleeps a lot. She’s usually up all night, but I cannot stay up with her. I’ve cordoned off a large part of the house, so she doesn’t go wandering around too much. A few times she sees people and pictures that are not there. She swears there are other people in the house. She sees “a man lurking around the yard” and it scares her. I tell her he left. I try not to say she’s “Seeing things” and just try to make it a positive thing. Like when she sees pictures on the wall, I ask her “Are they pretty?” “What are the colors?”

    She seems to be in the past a lot. She asks me about her parents and where they are. I tell her they are gone, and she begins to cry. There’s no way around that one. We lost my dad in 2014 and she does remember that he’s no longer with us, but I do keep pictures of him around her room.

    I basically take care of her myself, and have a CNA 2 days a week. I take over night respite trips to get me out of the house. I do not leave her here by herself, ever. It’s difficult, because my family has shunned me. I cannot believe they would do such a thing, make me out to be a villain. It’s hurtful and being alone most of the time is depressing and lonely. I’m also going through a nasty divorce, and it seems my family has sided with him! So much for blood being thicker than water.

    I just do my best with my beloved mother. We still joke around and we laugh. I’m grateful she still has a sense of humour and is mostly positive. I’m a lot like my dad, who was a jokester, and always saw humor in everything. I try to keep his spirit alive by using his jokes that made my mom laugh. I keep her as happy as I can. But I wonder, who takes care of me? I do.

    Live is hard, be a rock. is my mantra. My family has left me for dead, but I’m not letting them kill me with their hatred.

    • Kelly I have been taking care of my Dad for 2 yrs now. And for the first time in those two years i went on a mini vacation with me girlfriends to Pismo. A very long and awaited trip. I rented a limo for us and we went to Sycamore hot springs. Wine tasting. It was fantastic. My daughters are very upset with me for going. Me not going would not have changed a thing. Neither one of them have offered to help me. We do have other issues though. But whatever it is you do for your parent is what we are supposed to do. I don't think the younger generation realize how hard it is to be the caregiver. To be a caregiver I believe has a special calling…something you chose to do as your profession. When we are placed in this position,,,I guess it's what we do..I am on pins and needles…my dad fell twice last night and I can't even put the tv on for fear of not hearing him. He hallucinates and screams out intermittently.. This is my first post and it helps to have someone hear you,,,even if you don't know them sincerely Kim

    • Kelly,

      I am going through those same hatred and persecuting accusations and slams by my sister, who didn’t help my brother and I with my dad when he was diagnosed and 5 months after surgery died of a brain tumor. My mom was the rock we needed to get through that horrible ordeal together, as a family. Just after that my mom was then diagnosed with Alz and both my brother and sister have given up on helping and I really feel alone. I don’t understand how they can give up on the sweetest lady I know. I think some people just don’t have it in them to give. They resent me that I do and take their guilt out on me. For my own sanity, I’ve learned not to expect anything of them and then I’m not constantly disappointed.

      I dread the future and I don’t know how I am going to care for my mom on my own as things get worse. We have a great home health that stays with my mom 6 hours a day when I am at work but I can’t afford to quit my job as things get worse. The health aide service is so expensive out of pocket. I’m lucky that my mom only needs help with daily tasks of living and she still knows us and laughs. Her short term memory is shot. Adding in the COPD that requires her to be on 24×7 oxygen and her shortness of breathe all the time, it’s hard to watch the decline. I’ve just started reading these blogs on alz.org. It really makes a difference to hear others stories and to know I’m not the only one going through this.

      With my brother who has his own self inflicted issues I realize I am codependent and I’m learning to detach from that drama for my own preservation. Mom just needs help and helping her as I did my dad gives me great joy and great sorrow. I’m doing the best I can and I hope my best is enough as things get worse. I know I’m doing the right thing for her by caring for her at my home.

      Thank you Kelly for helping me to understand your family dynamics and how they corelate to my pathetic siblings and thank you Daisy for sharing you’re story. You are making a huge difference in bringing people together and building a bond and extended family of supporters for each other and the cause.

      You both will be in my thoughts and prayers.

    • Kelly, you are a saint! I want you to contact your local Hospice Organization immediately. YES HOSPICE!
      ALZ is a "terminal illness" and people just don't understand that Hospice can and WILL HELP you with not only respite time but also in home assistance. So many many people have a misconception about Hospice! You do NOT have to be literally "on your death bed" to receive HOSPICE CARE!
      I know because I did it! I have been a primary caregiver twice and it can be an absolute nightmare so much of the time!
      We DO IT BECAUSE "WE LOVE THEM"!! Reach out as best as you can Kelly and don't feel guilty about needing YOUR OWN TIME! Think of it as a "Survival Tool", because it truly is exactly that. I am sooo proud of you but heartfelt for the situation you are in both as a "loving Caregiver" and then your family status.
      My mother would always tell me: "There's a star in heaven for me". She passed away in 2009 and 18 months later I went through it all again with my elderly dearest and bestest friend. I don't regret it for a second but I wouldn't wish the disease nor the thankless caregiving job on my worst enemy. Good luck Kelly. I will pray for you.

  34. Daisy is as remarkable as her name. I have had a late Alzheimer cases at 86. Daisy's hard work and her love for her mother and all of us should lead her to heaven. I love her. Don

  35. I also have early onset Alzheimer's disease, diagnosed one year ago. I am grateful for the Alzheimer's Association, and admire you, as you continue to LIVE your life. God bless you and heal you.

  36. My heart goes out to anyone in this position. I just lost my dad after 4 years of Diffuse Lewy Body Disease Parkinson, a form that not much has been done on research , and vascular Dementia due to contract Viral encephalitis in 2011… We know now prior to all that he was misdiagnosed with Menears Disease for like 10 years… Symptoms similiar to onset of DLBD.. I have also thinking of getting genetically tested to see if I have the gene.. I understand the losing the parent , becoming the parent… For my dad it was an awful end… To lose your memories, life and not really know anything, for he had a great life and impacted so many during his life .. He was a Pastor , great husband, dad, friend, mentor, granddaddy… He loved. 100% and he was loved back! His love of God! So I know your life, struggles I pray for all affected and hope a better treatment or cure is found !

  37. God Bless you Daisy for all you do for your Mom. You are a very loving and caring person. I pray that when or if you really get this terrible disease that they will have a cure..
    My father died in 2010 with this awful disease and I would not wish it on anyone. My Mom took care of him as long as she could, but he really progressed fast and was a wonderer and would leave the house in the middle of the night and go roaming in the fields of their farm. THis awful disease not only affected my Dad but the whole family. It was so hard to see my Dad, a strong 6ft 2 farmer that never went to the Dr before this. He was brought down to his knees with this disease and he ended up in a Nursing Home for only about 5-6 months and we all visited him every day. But I think he just gave up and would not eat and ended up with a stroke and passed away within a month. I know my Dad would not have wanted to live like that, in diapers at night , needing the nurses to care for him and do everything for him. It was terrible…He was only 74yrs old and had lived a hard life as a farmer and it was time for him and my Mom to do some traveling in their motor home they bought to retire and relax in. It's not fair that he had to go so soon. We all miss him terribly., especially my Mom, they were married for 55yrs. It was like losing a leg or arm, or just a part of herself.
    I worry that I'll have this terrible disease. What's the name of the blood test for the gene? I want to ask my Dr to order this test for me as soon as I can. I'm 54 now and going thru a divorce and having a hard time coping with it all. But I'd really like to find out if I have the gene.

  38. Today we got information as British scientists think A.D may pass through blood infusions…

  39. My dad passed in 2000 from Alzheimer. In 2001 I became the caregiver for my father in-law for 2 years. In 2011 we move my mother from out of state and I am her caregiver. It is not a easy job. I have medical problems myself and go into pain crisis, but I make.

  40. Your Blog touches on so many points of interest. I am in England and look after my wife who has Early Onset and whose mother had Alzheimer's too.
    We went to a conference on the subject of Alzheimer's Research last week which was for Carers/Care Givers and their partners. It became obvious that my wife was concerned about genetic transmission as she specifically raised a question about it. The line over here seems to be that it is a remote chance and it is not worth testing for. Much the same as in the USA by the look of it.
    The newspapers over here today are full of the idea that Alzheimer's can be transmitted during surgical procedures but once you start digging for the research behind the headlines it seems to be one case out of eight investigated. Headlines like these are so unhelpful as I am sure some people now think you can 'catch' Alzheimer's by looking after someone who has it.
    Having looked after my mother in law and now my wife I do assure you I understand just how difficult you life is.
    With best wishes.

  41. God Bless you, your mom and your family Daisy!! I too, took care of my mother with Alzheimer's (6 of her 9 siblings died of the disease). I have chosen not to have the test done, but rather to assume that I probably will have it and to live life to the fullest every day — as they say, none of us are even promised tomorrow. I wish you the best and may God send blessings to you all! #SistersInAlzheimers

  42. I too applaud you for what you are doing for your mom. I too was my mother’s caregiver for 10 years and I certainly, without a doubt, know what you are going through. The days just melt into the evening and then into the night and then again to the mornings. You lose track of the days and you just love them over and over and over again. You tell them, you show them, you do everything to let them know you are here for them. I lost my mother in 2013 and I would do it all over again if I could have her here with me. I miss her so but I know that she certainly is in a better place and I believe that one day we will all be reunited. I too am afraid of getting this horrible disease and I was told that at the age of 60 I can be tested. I just turned 57. Do you know anything about getting tested and is it true that I need to wait until I turn 60? Good luck to you and your mother and remember to constantly tell her how much you love her as I know you do.

  43. All of you deserve my prayers. My Husband was diagnosed 3 years ago. It is truly a day at a time situation. Pray for and I'll pray for you.

  44. I feel like i have no one to share my pain with…..even though my dad is the one with disease…. but I feel that he has no idea

  45. Thank You Daisy, my husband died last Sept. 10th of Lewy Body Dementia. From the very first sign of things going wrong with him, I found a real lack of understanding and help from his doctors, my neighbors, and even some of our friends. I found the only people that cared and continued to support my efforts were our children and my family. There are far to many people who label Alzeimers as mental illness and have the additude he or she is crazy and there is nothing they can do to help anyway. I miss him terribly. Every day I wish he was still with me. Many people after he died said to me his death was a blessing he was suffering. I my heart and mind the only blessing from God would have been to have spared him from the worst decease known to man.

  46. that is very touching i know the feeling i am 45 they discovered about 2 mounths ago my mom has it she is 74 her father and mother both died from it i have never heard of any testing but i want to check it out good luck

  47. God Bless you. You sound like a very strong woman. I took care of my mom that had the early signs of Alzheimer’s, my sister Maria and I took care of her, I did the morning and she did the evenings. We, were challenged but I’ll do it all over again. I always worked for Media Advertising for the New York Daily News, but moved to Texas and decided to help my sister with my mom. Started working in an Alzheimer’s facility, so I can stay with my mom in the mornings. My mom passed away 2 yrs. ago. I thought about going back into my field, but finding my emotions mixed, I love working with Alzheimer’s patience, I decided to give up my career. I’m working for an Alzheimer’s facility right now. I’m involved engaging with residents in a daily basis and I love it. Of course, I’m not making the money that I used to, but every smile, hugs and kisses fulfills my day.

  48. Dearest Daisy,

    Words cannot describe how much your story has touched my heart. I am a Registered Nurse, in the state of Michigan and I own 2 small Residential Assisted Living Facilities. The great majority of our resident population suffer from this awful disease that is a horrible thief!!! This disease takes our loved ones twice! It first takes them in a way that only people who have a loved one with the disease understand, meaning, “this isn’t the man/woman that raised me” kind of way. This disease steals memories, steals precious time, steals independence, among many other things, and eventually……steals your life. It’s a hateful disease!!!

    It is sad, and unfortunate that it is the 6th leading cause of death, and is so incredibly under funded by the government, and so much of the general population turn a blind eye to it..!! Mt Staff and I are planning to put a team together, and get busy raising funds and awareness!! We want the general population to understand that every single penny helps with research, and spreading awareness can only help!! Please know that you are in our thoughts and prayers, and although you may feel alone at times, please know that you aren’t alone, and tou, your Mother, and every other person touched by this “Thief” are in our hearts and prayers, today and always!!!!

    Laura,RN Administrator

    Island Pines Residential Assisted Living

    And

    Mortenview Manor

  49. What a beautiful story of love. To be so young, 39, taking care of your mother at a young age of 59, must be one of the most challenging events in a life time. I admonish you for caring for your mom and for taking her to work with you, so she will be in a safe environment.

    Have you thought of using an adult day center? They provide social, cognitive, and physical stimulation that will help both you, the caregiver and also for her. There are several adult day centers in the country.

  50. I work in aged care and i just want to say i take my hat off to you Daisy, what an awesome daughter you are and what an awesome job you are doing in caring for your mother and working to get the word out about Alzheimer's. Best wishes to you and your family xx

  51. My maternal grandma passed away with alzheimers, my mom has alzheimers, her elder sister passed away with dementia and her youngest sister has alzheimers. My sister has had the testing and is positive. We have our mom in an assisted living which is wonderful. We pray that she can stay there as long as she can.

  52. Hi Daisy, I Am joy what you doing of taken care of your mom, be positive and have lots of love and passion for what you doing. I did the same thing with my dad, I stop working and took care of my dad for two years as he had it. But he had it for sex years back in 2005, his soul left his body in 2013. I been with him since every day taken care of him at my house, my mom was there. I could let her to it alone, so I left my job and did it. I was a caregiving for my dad, and I was happy and joy that I did what I did for my dad. Since his passing, I started the walk with my sister. I been doing Alzheimer walk since 2013, I do it once or twice a year. We had spend tougher for the good days and every day we are together I get to see him laugh and smile. I take him out to the park, the beach, go for walks, to eat out, and drive around. I give him dad something he could be smiling, I give him love, light and care. You doing the same thing with your mom, keep on shining for her.
    Love and Light…
    ~ Chadi H.

  53. I think you are very courageous. My thoughts and prayers are with you and your family. You are a source of inspiration for me. 🙂 xo

  54. One fear I have of Alzheimer's is being useless. I see this story and see an incredibly helpful, and courageous, woman being way useful. Thank you…….

  55. I hope a cure will be available in the near future. Thank you for your efforts in spreading awareness. It won't go to waste. Be strong.

  56. god favor you Daisy, a debt of gratitude is in order for all you are accomplishing for everybody, for us, for our moms, father, sisters, siblings. My mother additionally has dementia, she is exceptionally forceful , she barely remembers us, my dad,her house, for her we as a whole are distinctive individuals diverse days. At this moment my father deals with her more often than not, family helps as well, each day after work I go to help (cooking, washing, cleaning) it is hard. At this moment I'm in a procedure of searching for somebody to contract to deal with her with my father. Daisy I want you to enjoy all that life has to offer in life

  57. My deepest prayers for you Daisy, your mom and family. I want to see a miracle happen because of your efforts.

    Blessings and Peace be with you!

  58. Watching the program was like watching our lives. I give you all the credit in the world as I do my father who had been the main caretaker for my mother for 10 yrs. She too had an early age diagnosis and just passed on New Year’s Eve. It is not an easy thing by any means, physically and mentally draining and even harder with no support system. I don’t know you but I can say you are a wonderful daughter for caring for your mother and a generous/selfless person for participating in the clinical trials.

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