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• February 25, 2010 3:31 p.m.

  My father was diagnosed with Alzheimer's Disease about 8 years ago. My mother was his caregiver up until August of 2009. She decided at that time she couldn't care for him anymore. He is now in a memory care unit. It has been the most heart wrencing event of my entire life. To see the man that raised you, the heirarchy of the family in this predicatment is unbearable. I spend many days with him and we have a different relationship now that we never would've had. It is somewhat a reversal in roles, I'm the parent, he's the child. Like Kate's comment, I try very hard to focus on my father and his needs and forget about others. I tell myself daily that I am only responsible for my own actions. My siblings are mostly good for nothing, and there is 7 of them. I will now tell myself often, " It is more important to be a good daughter than a good sister". Thank you.

  - Katie

• February 23, 2010 12:07 p.m.

  My mother was diagnosed with vascular dementia in 2003 after much avoidance by me and my 6 siblings. Her memory loss dates back to my father's 1998 death. My mother had designated my two oldest brothers, both PhDs, as executors but they were the most resistant to accepting her diagnosis and least able to make decisions on her behalf. Finally in 2006 after years of rancor my brothers at last agreed to get my mother the care she needed. In the meantime, as the oldest daughter I have been the target of the family's anger and blame which continually upsets me along with health and financial problems. On the bright side my mother and I have gotten close and we have spent many enjoyable hours together. I have the Alzheirmer's Association hotline to thank for this. One counselor advised me to enjoy whatever time I can with my mother, focus on her and try to forget my heartbreak about my siblings. Recently a friend said to me, "It's more important to be a good daughter than a good sister". The elevated positions of sons in my Catholic, Irish-American family came home to roost surrounding this terrible event and has caused me havok but I couldn't just walk away as much as I think I should have done to spare my own health. Kate

  - kate

• January 12, 2010 7:32 p.m.

  This long goodbye with Mama is so confounding and overwhelming. I feel as if there's a darkening veil between us, that even though I can reach out, touch her, and hold her, she can't be touched, she is beyond reach. She is losing herself and I am witnessing it. This witnessing is so important, so critical to my own understanding of who she was, who she is, who I was, who I am. I find comfort and consolation in being in the present moment with her. There is no longer any past, nor any future. There is simply the present moment, with its own simplicity. I am seeing the child my mother was once upon a time. She knows me now as the mother I am, to her as well as to my own children. She is confused, fearful and lonely, but easily comforted. She is gentle, appreciative, curious, and easily pleased. She is my teacher, my mother, my friend, my soon-to-be lost and beloved one.

  - Kathryn

• December 7, 2009 10:08 a.m.

  I have been caring for my wife for the last 8 years. Her mother also had Alzheimers and got to the point, before she died, of not knowin anyone around her. Although I am a social worker, being my wife's carepartner was extremely difficult. I was no longer her husband, rather someone who looked out for her every need. Initially I went through the various stages of loss and felt very victimized by her diagnosis. One day I consciously decided to see how I can learn for this experience. Everything changed somewhat after that decision. I learned from my beloved wife the importance of living in the moment. That's truly all we have. I learned patience, beyond my wildest dreams. I learned empathy and compassion, learning to seperate my wife from the disease and responding accordingly. I learned to appreciate her and love her more that I ever imagined. Our love grows daily. It is a very lonely journey. Bless you all who are going through this insideous disease.

  - Mo

• November 30, 2009 10:01 a.m.

  Just reading through these comments I see many of the same things that I am feeling myself. My mom was diagnosed two years ago, although there were signs before that. She is still able to interact with us, but there are many things that have changed. I feel as if I have lost my mom already -- the fiercely independent, can do anything mom that raised me. I see her wanting to do things that used to come so easily that now frustrate and confuse her. I am so sad for her, she knows that she is slowly slipping away and cannot do anything about it. That is the worst part of this disease. I know she must be terrified and I do my best to comfort her and to talk about happy memories. It also scares me as I feel like I am staring my future in the face. I know there is a large community out there going through the same thing, and I find it terrible that we all have to endure this pain. During the holiday season I will give my mom a big hug and be thankful for the time I get to spend with her now.

  - Kerry

• November 17, 2009 6:34 p.m.

  As my spouse "drifts away" I find great help on the internet, through yoga/medation, and my Catholic faith. Transforming bad experiences into growing faith helps right now. Letting go is getting easier as I realize our time together is slowly coming to an end. Enjoying each day and attempting to make our lives as enjoyable for as long as possible helps.

  - Jean

• November 13, 2009 2:28 p.m.

  My mother also has alzheimers and she lived with me for two years. I then had to put her in a home and i have been feeling guilty ever since. she has slowing stopped eating, she gets angry and says the most awful things. she is always telling me she wants me to take her home. I feel like my mom is already gone. I can't talk or carry on a converstation with her. i go there and try and try, i make sure she is being taken care of but there is a guilt pressing downon me that I am having a hard time managing. It would be so helpful to know what is coming but i am afraid to find out. she was my best friend, and my mother.

  - Mary

• November 5, 2009 4:26 p.m.

  I watch every day my wife of 48 years dies a little more with each lost memory. It is not the little bits of forgetfulness, but it is in not knowing who her mother was, or that her father died in 1956. It is not knowing my name, and thinking one of our sons is really our grandson. My wife tried suicide 22 months ago because she did not want to be where she is today and perhaps for the first time in her life something as important that, she failed. She is well-educated, an award winning teacher of 38 years, was active in community affairs and she just could not stand the idea being where she is now. We both retired in 2003 so we could "enjoy the good life" and we did what we could, but she remembers none of it now. What is the most hurtful thing about this terrible disease is that alll of those close friends and associates who said to me they would be there for her are not and have not been. That is one of the sadist of all things. When anyone visits, even a visiting nurse, she is so appreciative of there company, even those they come to visit me, but that is ok, too, as long as it makes her smile. This is the first time I have ever given vent to my thoughts like this and I am carefully keeping a lid on my emotions for now. Thanks you Angela and all who responded.

  - Richard

• November 3, 2009 8:56 a.m.

  The children with low school level have more of the double of probabilities that those that has studied to be diagnosed with the disease of Alzheimer in their oldness, this indicated findrxonline in article according to a new study. The Alzheimer is a disease that attacks the brain is progressive and degenerative cause problems of memory, thought and conduct. It affects in the attention, decision making, judgment, language and personality. A low school level is tie with an increase in the risk of developing the disease of Alzheimer, this due to the first symptoms as they are: the lost one of the memory that affects the abilities in the study; difficulty in the execution of daily tasks, difficulty in the learning of new tasks; lost of the sense of the time and problems with the language, it indicated the main author of the study, Chengxuan Qiu, of the Research center of the Aging of the Karolinska Institute, in Stockholm, Sweden. Previous investigations indicated that the school level of a person could be a factor of risk for the development of the disease of Alzheimer that is the most frequent cause of dementia.

  - James Kildare

• October 15, 2009 10:53 a.m.

  My husband of almost 25 years was diagnosed with Alzheimer's last year at the age of 63. We have 2 sons -- ages 20 and 15. My younger son has been recently diagnosed with clinical depression and now on hospital/home bound from school. He and I first realized the possibility and and saw the signs of this disease about 4 years past. I feel he is withdrawing and grieving but unable to grieve or understand that feeling angry at his father is normal. Watching this once unbelievably smart man deteriorate is more than 'killing' us. He has already begun to not quite know who we are. And to a 15 year old -- this is devistating. There are no support groups in our area for children (teenagers) with parents who have Alheimer's. You would think we are the only family in this situation. My family is in Texas and his is in Chicago & Poland so there is no help for us here. I am worn out beyond the words 'worn out.' Unfortunately, we lost 60% of his retirement fund so professional help is out of the question. I would like to give up, but I can't. I take it a moment at a time -- a second at a time -- and hope we can all survive the disease. Thank you for your words and for having a place to tell my story.

  - Therese

• October 9, 2009 10:07 a.m.

  This August marked the 3rd year that I have been caring for my mother. I told myself that because I am the oldest living child and the oldest daughter that this is my obligation. I have many children and without them keeping me posted as to what they are doing in their lives, I would be even more detached. I care for my mother but lately it has been more and more difficult because I am not only sleep deprived but miss the caress of my husband as he has chosen to live and work in another city. I am not getting the physical support I need even though I have asked many times. I have to let go of the wishfullness and continue with the daily tasks that keep me busy. So, my grieving is not only for my mother but for my marriage and the loss of self.

  - Roxanne

• October 7, 2009 7:39 a.m.

  Thank you all for the love and support. I find that over 20 years of AlAnon has helped me prepare for this. I didn't cause it, I can't cure it, and I can't control it. I can only change myself. Sometmes I can only change my attitude. I am trying to be more aware of things each day. Really watch the birds at the feeder. Use up all those nice bath salts and candles and scents I've been given. Practice yoga with more attention. Enjoy, really enjoy, the water at water aerobics class. Let the house work slide a bit(that was easy). I'm learning early to pay bills, sleep alone, take my car in, think about insurance-- all the things my husband took care of. It is lonely and isolating to deal with Alz. I have lots of connections and sense of support, but what's inside is the hurting of losing so slowly my companion and best friend of 47 years. I'm watching him go an inch a day. But much of the time is GOOD time. We walk the dogs to the pond and watch the fish. We play ping pong every night. We listen to music: I read, he dozes. Every day he says something funny or comes up with a new way of avoiding the words he can't find. I was going downstairs after telling him good night. He said, "Don't drop yourself" (don't fall). Peace, G. Jane

  - G. Jane

• September 29, 2009 4:10 p.m.

  I really enjoy the articles on this blog. After caring for my great grandfather for over a year I built the site AlzMall.com. I am really looking for those who are passionate about Alzheimer's care to contribute articles, stories, or just general information to my site.

  - Jerry

• September 27, 2009 12:52 a.m.

  My Daddy died after 6 days of illness and 14 months later my sister died of cancer. I had been helping take care of my sister and Daddy was taking care of Mother.So I didn't see the signs about Mother's illness. After my sister died I had to take care of Mother. As she got worse, I hired someone to stay with her in the daytime. This worked for awhile and then Mother got so bad I had to do something. So I put her in a health care facility. They have been so good to her. But it was one of the hardest things I had to do. That was 13 months ago. I have had to sell the farm and all of Mothers furniture. That was hard too. Sometimes Mother don't know me and that breaks my heart. Now my mother-in-law fell and broke her hip and she is in the same facility as Mother. She also has the beginning signs of this monster. My husband is an only child and now I am too, so we have our hands full. But with God's help we will get thru this.

  - Kay

• September 4, 2009 12:20 a.m.

  My mom is suffering from this monster called Alzheimers. I have a very large and loving family - all who cope in their own ways. We had to place her in a facility two years ago. It was the most painful experience of my life. I will never get over it. It seems I barely get through each day without feeling overwhelming guilt. They sahat time will heal. I don't know if that means till the end of time or not.

  - Penny

• August 17, 2009 12:10 p.m.

  I did turn grief into advocacy, working for better resources and more support for family caregivers after losing my husband to Early Onset Alzheimer's Disease at the age of 58. I have written a book that describes in great detail the onset and progression of this disease over a period of 7 years. It is painfully honest. It makes me very sad to think that so many new families will be coping with this tragic illness - it does not matter what age you are when it strikes someone, it is never normal whether you are 52 or 82. (I self-published, so you know this was an affair of the heart. I'm sure you can find it if you research a bit online.) Those who have read it tell me it should be required reading for doctors, social workers, elder services and other human services workers. Maybe it should be required reading for us all because AD is that big a threat to our families and communities. So much needs to change. We are only now beginning to see some hospice support for Alzheimer's patients and their families. That took too long. We need more day programs, more AD specific and appropriate short and long term care facilities. So, let's keep educating others. Choose to do something today to help someone else tomorrow. It's the only way out of the deep abyss created by this illness.

  - Sonja

• August 16, 2009 10:14 a.m.

  My mother died in 1995, but in hindsight, she started getting sick gradually about 15 or even 20 yrs earlier. Like Audrey, I never had the greatest relationship with my mother, & at the same time her only caregiver. However, I was never able to glean anything positive in the experience; it was so painful for me. I suppose I'm still not over it. I avoid thinking about it & especially feeling about it. Also, my greatest fear is ending up like my mother. Her sister was diagnosed with Alzheimer's & her mother had symptoms of the disease. I plan on ending my life before that happens, but will I be able to judge for myself when the time is right (not too soon & not too late)?

  - Carol

• August 7, 2009 9:24 a.m.

  I am the only family member of a mother who has alzheimers. She has always been a difficult person- suspicious, crafty in carrying through with her suspicions and she has been rageful... strongly independent and stubborn. As she has unraveled with this disease, I have seen both the best and the worst of her. I have seen her be appreciative and tender, vulnerable and honest with her love. I got the mom I wanted. For a while anyway. She lost the hard fearful overlay that controlled her (and all of those around her) her entire live. I wouldn't wish this on anyone, however now that she is unraveling there has been some gifts in it for us. Also I can tell her what I really wanted to my whole life and she will give me a more honest responce and then forget that I said anything. Bonus of this disease if you struggled with someone. You get to process your relationship with a more transparent person.

  - Audrey

• August 4, 2009 11:14 p.m.

  I lost my husband of 36 years to alzheimers Oct. 23, 2008, his brother who lived in Florida died 12 1/2 hours before he died also of Alzheimers. His wife would not sign up for sibling testing of Alzheimers. I still regret putting my husband in a nursing home, he was there for only 3 months, in that time he quit feeding himself, fell out of bed, and a wheel chair. He had large bruises on his head. Couldn't ask for a drink of water, everytime I went there, he would drink water like he hadn't had any all day. I do think that aricept keep him going for a long time. I had bronchitis for a week and didn't go to see him, when I got there on Saturday an aid said "Oh, he hasn't ate for 2 days. But no one bothered to call me, I lived 50 miles away. Never in my life did I expect him to go so quickly. One of his son's died of lung cancer in Feb 2008.

  - Ann

• July 21, 2009 8:29 a.m.

  Thankyou so much for your comfort.Drifting away is such a good way of describing it.

  - sarah

• July 20, 2009 8:01 a.m.

  I just wanted to say how sorry I am for everyone's loss. There is good people on here who can identify with your pain. I send out my support. My Grandma died in 2007 from Alzheimer's. We kept her home with us instead of putting her in a nursing home. We are lucky enough to have a large family so there was always someone here to take care of her. It was, and still is, extremely hard. We miss her so much. Watching her just drift away from us was one of the hardest things that we have ever dealt with. During her last days, we had hospice come to our house. They kept her comfortable but it certainly didn't make it any easier for us, though they did try. My husband was so overcome with emotion at the end, that this song just came to him on his way into work. He called it "Family Glue". We have decided to sell the song and donate 50% of the profits to the Alzheimer's Association. I know that you will all be able to relate to it, it is completely amazing. It has been 2 years and the song still brings me to tears, but it also helps me. I hope that his song will do the same for some of you. On August 11th it will be released on iTunes, Amazon, Rhapsody, Napster and eMusic. I just want to say everyone out there is in my prayers, I understand what you are going through. ~In Loving Memory Of Our Grandma, Anita Fahey~ Thanks!

  - Elisa

• July 19, 2009 12:46 p.m.

  i am struggling to deal with our mom's Alzheimers.and yesterday was really hard as she was talking about not knowing where she was when she woke up and how scary it is. she kept asking me if i was all right as if she were making sure that when she really goes we will all be all right.it is really painful to go throughthis and so scary for her.i am down and feel as if i cant be happy while someone i love is in such pain.her one remaining sister cannot deal with her, we try to go on with our own lives but there is a darkness now that wasnt.it helps to write.thanks

  - sarah