Alzheimer's disease

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• July 23, 2010 12:12 p.m.

  Some thoughts for Sharon and her partner: It was almost 9 years from the time I suspect my husband's dementia began that we finally gathered the courage to go for a geriatric assessment. The program we found had 5 medical people interview us over a 2-hour period, and I was stunned to hear my husband say, "I haven't felt that cared about by doctors in years." We found that he'd had a stroke. There was so much anger and resentment and difficulty, and I resisted going to a support group for a long time, but that group, along with the doctors and the Alzheimer's Association, became lifelines. Almost all of us have found that the love we thought we had from much of our friends and family turned out to be incredibly conditional. Abandonment by so many you thought would be there is commonplace--I also found much deeper love and kindness from some family and friends and neighbors and former strangers. Early on. one of my brothers said, "I don't know that I would have the courage to face this as he does," and that helped redirect my focus off my despair and help me perceive his courage and perseverance and desire to help others by participating in studies that search for a cure. 9 years after the diagnosis, I struggle every day with whether or not I'm doing what is best for him and whether I can survive. I have been blessed to find that many people respond to my love and respect for him and do the same--those who abandoned remain feeling justified in their

  - Kathy

• July 23, 2010 10:57 a.m.

  Mine is a tragic story about a man with whom I have lived for 16 years. Apart from some stressful and unfortunate events that impacted his life at the end of a 27 year career as a Ph.D professional, I am sure that he has Alzheimer's or something like this. I have not pushed for a diagnosis since he has always said that he would commit suicide if he were ever diagnosed with Alzheimer's disease. I also believe, that despite the practical implications of a diagnosis, that once the diagnosis is made, it serves to hasten the demise of the person with this tragic disease. I have tried to live day by day, caring for him in ways that I never imagined would be necessary at his age; he is only 67. We are isolated and with the drastic changes in his personality and health, there are few who really want to be around him or even talk to him. Our neighbors who used to let us care for their animals while away became "concerned" about his involvement in caring for their animals and now no longer even speak to us. My life-partner's only son, who is a Harvard Educated Physician has cut off all communication with his Father and will not even speak to me. The first blow came on Father's day when his son called, but refused to put his 6-year old son on the phone to speak to his Grandfather. We had been invited to visit him in Colorado this summer, but the lines of communication were severed and we were not allowed to go as planned. His son as refused to help with his Dad's health.

  - Sharon

• July 22, 2010 11:44 a.m.

  One more thought for John. As we researched living options we discovered that some retirement homes are independent living; some are assisted living with limited assistance, and some are transitional, e.g., as the needs grow, more services are available. Of course these are more expensive. (These are not care centers.) You should know what is available in those lines even if you just move to an apartment without stairs. At some point things may change again. Your children need to be involved.

  - Laurel

• July 21, 2010 10:11 p.m.

  This is the most useful advice I have ever come across. I no longer react to Mum's out of character behaviours. We have recently placd my Mother into care which is excellent. My friend and I visited her on Tusday. She abused us as soon as we walked in the door. She was volatile. I did not overtly react - just a tear in my eye as I walked away and said to myself: "That's not Mum talking, it's the disease".

  - Kay

• July 21, 2010 11:30 a.m.

  John, You are doing well to consider your options now. There is no stigma in moving to where you and your wife can receive assistance. Your children will be very grateful. I have two friends who chose the assisted-living community that suited their needs and are happy with their choice. My mother-in-law waited for a crisis and is not very happy with our choice for her.

  - Alma

• July 21, 2010 10:55 a.m.

  After caring for my mother years I can honestly say it was the most difficult job I ever tackled. Also the most rewarding. I some times worry that I will have this dread disease.

  - Carol

• July 20, 2010 11:39 p.m.

  John, I think it may be in your best interest to move to a one floor house on your terms, rather than be compeled by a turn of events. No basement, therefore no stairs to fall down. If compeled, then you may have to act quickly and that may not be the best situation. Perhaps speak with a Realtor. (In full disclosure, I am a former Realtor). I don"t feel qualified to suggest a house or a full-coverage-facility. God bless

  - J

• July 20, 2010 8:16 p.m.

  I am so sorry, John. No one can know how long before you should move except you, but you should be researching. I spent seven months helping my friend visit various facilities before she decided what was right for her. Your daughter should be very much involved. I doubt that either or your wife are ready for a full care facility, and how would you convince her to move if she won't even get tested? My husband wouldn't get tested on my advice, but a doctor talked him into it. Good luck.

  - Laurel

• July 20, 2010 7:35 p.m.

  My wife and I are in our mid-80s, both of us with leg ailments. Other complications include her high BP and my diabetes. I am also concerned about some indications of mild cognitive impairment in both of us. Our two children are also aware of the situation and encourage us to keep them informed. Our daughter is close by, but our son lives 100 miles away. Our major issues are: 1) How long before we need to move from our town house with stairs up to the bedroom and down to the basement? 2)Shall we move to a single floor apartment or a full-care facility? 3) How can I convince my wife to take a memory and cognitive impairment test our doctor has recommended and set up for us in three weeks time? Has anyone any suggestions?

  - John

• July 19, 2010 6:07 p.m.

  My husband is only 69 and was diagnosed with Alzheimrs 3 years ago. Someone once told me that I have been given a great gift -- one of caregiving for a loved one. I've often heard of something similar being applied to young parents faced with the birth of a disabled child. That thought helps during difficult times. And I remind myself that we are both lucky I am able to fulfil that role. I admit there are moments when I'm on the verge of losing it, like when I ask him to do some little task and he responds angrily "I have to do everything around here." I know we have a long, hard road ahead, but I keep reminding myself of how important I am to him. If the shoe was on the other foot, I know he would do no less for me.

  - No name given

• July 19, 2010 9:22 a.m.

  I take care of my 80 year old father who has AD. I love this man so much. I have an overwhelming compassion for him and want his care to be perfect. My father has recently had to have a catheter placed in him as his brain no longer instructs his bladder to empty. This has been a very challenging adjustment. I awoke at 2 a.m. recently to find that he had yanked his catheter out. Needless to say the carpeting in his bedroom is ruined from the blood stains. I cried and cried and felt such guilt over this. I just couldn't hold back the tears and when my dad said to me 'honey why are you crying?' it just made it worse. I simply said 'dad I'm supposed to take care of you and look what I allowed to happen to you'. He got angry and said back to me 'you do take good care of me so you need to stop crying.' It took several days and many prayers for me to get over the guilt of this. I know I cannot stay awake 24/7 but I still felt responsible. But he is now finally adjusting and getting used to this foreign object in his body. Although he doesn't understand it he is dealing with it better for now. I work a full time job so my brother sits with my dad while I am at work. This gives both us of a break away from this horrible and sad illness that is robbing us of our father. Thanks Edith for the video you posted and thanks to Cathy for sharing your poem. I am going to print this poem and post it on my refrigerator as a constant reminder to myself and to my brother.

  - Amy

• July 18, 2010 11:05 p.m.

  I should amend my last letter. I should have said that it is totally out of character for him as he has always been so suspicious. It actually may be in character for him because of his "tightness" or greed. If anyone offers him a million dollars, he will get out his wallet. I think I'll have the mail held for a week or two and pick it up at the post office until I can figure this out.

  - Laurel

• July 18, 2010 2:22 a.m.

  Here is the question and the frustration. When the patient's status is in a constant state of transition, how can you know what actions to hold him responsible for??? Here's another question. My husband just sent another $25 CASH to scammers in the mail. I can't hold him responsible for this as it is totally out of character for him--he's always been so tight. Just tell me how to stop him. I've sent letters and "DNM" (do not mail) letters, I've contacted the direct marketing association, I tried to physically stop him and have bruises to show for it. I've confiscated his mail, but can't stop every letter. He's in the moderate stage.

  - Laurel

• July 17, 2010 9:30 p.m.

  A wise person learns from their experiences, the wiser from those of others. My thanks to each of you for sharing; helps provide a road map for me. I will add you (collectively) to my daily prayer list. Today is our anniversary, 60 years and 7 months (yes, we still count the days). Initial diagnose was 14 monthsw ago, after extensive testing. We should have sought professional assistance earlier. I think her meditation may be beneficial, hard to tell due to my inexperience. Three daughters, three sons-in-law and seven grandchildren live within blocks or a few miles and all are understanding. I have seen, hear or experienced enough so that I well understand the strain, particularly on those with little or bo assistance; hence, my deepest admiration for those who carry the burden. Of all who have ever walked the face of the earth, she is the most wonderfuk person I have ever met, second to the Messiah. I love her dearly. God bless - Vaya con Dios. JMS

  - J

• July 17, 2010 9:10 p.m.

  Wow! So many of us are dealing with the tragedy of what is dementia/alzheimer's disease. I do blame the disease but I feel sorry for my mom who is only 63. She has not turned violent with me but tended to be very defensive with my older sister that died from cancer. Mom now lives with me and my husband. Her steady decline, despite medication, is disheartening. I'm glad I read Richard Taylor's book "From the Inside Out." It has given me perspective and some understanding of what everyone is going through. I wonder until when I'll be able to take care of my mom and not succumbed to my own autoimmune disease. My mother had no financial stability before and lived in the projects so when I decided to take her into my home, no one batted an eye. Everyone starts pulling punches when there is money to be gained. Not to say that money is not needed because I still have to pay someone to take care of her while I still I'm able to work. In a way, I am lucky because I have a younger sister who helps me out. We are closer than ever. Dealing with taking care and losing our older sibling has brought us together. Now we just want to be there for our mom. My father is not in the picture because my mother divorced him years ago. I believe he might be fading as well into maybe some dementia but I cannot deal with an extra load on me and my younger sibling has two infants. I pray that God give me the strength to push on forward because if I stop believing in Him, I would

  - Onaria

• July 17, 2010 9:02 p.m.

  I've been a 24/7 caregiver to my partner of 29 years for the past 2.5 years. He used to be so vital, full of life, and eager to share his knowledge. It is sad and frustrating beyond description to watch the slow disintegration of the person with whom I have spent so many years. Now, among his many other maladies (macular degeneration of both eyes; throat cancer, loss of hearing, etc.), John no longer speaks in what is considered a normal language. His only "communication" is a "clucking" sound. He no longer understands me when I ask even the simplest question. He has also lost his "social graces", as if he were a child. This, from a person who was highly educated and worked as a physician for more than 35 years. Now, I often feel as if I am merely a servant to a complete stranger, not remembering that it is the disease causing John to exhibit these changes in behavior, not a deliberate choice on his part. So, what can you do except continue to learn from the experience and push on. It has been difficult, but as time passes, I have begun to accept the changes in our day-to-day relationship and try to keep a positive perspective on life. I have finally realized that there is nothing I can do about John's affliction with Alzheimer's, and to paraphrase Angela Lunde's article, one should not [and must not] blame the individual for the pain, anxiety, and frustration one feels, but rather the disease. The person needs all of the love and supp

  - Benjamin

• July 17, 2010 6:21 p.m.

  My mother is 97 and has been in the nursing home for two months. The anger she takes out on me and been most upsetting. Reading you comments has just made me realize she in the early stages of alzheimers and your comments have been most helpful. I am just so thankful she has had a good mind for a long time.

  - cindy

• July 17, 2010 6:02 p.m.

  My husband and I just got back from our weekly Saturday outing with his mother. Things went well until the last twenty minutes when she started her guilt-inducing litany about going back to prison. Even though my 88 year-old mom lives with us and limits our option to care for an additional person, and my mother-in-law's doctors have said she needs 24-hour care, I still wrestle with the guilt about our decision to move her to a care center. I still take my mother-in-law to get pedicures, haircuts, and all her medical appointments during the week--or just out for coffee and a muffin. Since I am the family member who spends by far the most time with her, I'm the one she gives the most grief. Her other children live a continent away. Luckily, they never criticize any of our decisions. Reading everyone's posts here really helps me know that we're all struggling with this together. Thank you to all of you for sharing your thoughts.

  - Alma

• July 17, 2010 12:52 p.m.

  In reading some of the blogs, I did not come across any showing the same things that daughters and son in laws go thru even though their parent lives in an Alzheimers' facility. We visit my Mom every week and still get the same responses from her that most of these bloggers experience. It still hurts, even though she does not live with us. I have one sister, who is completely removed from this and also is into early onset Alzheimers herself. The hurt and guilt is still there daily and I would love to see some comments from someone who has dealt with my same situation. Any ideas to get rid of the guilt? I can cope with her meaness knowing that it is the disease, but everytime we leave, she says "I would never put my Mom into a place like this!" She thinks we could take her home to live with u, but all the doctors and nurses say we could not cope with this disease at her stage of it. She is almose 88 years old this September. Any comments welcomed.

  - No name given

• July 17, 2010 11:40 a.m.

  I try making my mom as independent as she can possibly be. Yesterday I had her make a shopping list and off we went to Bartell's and our local grocery store Tops. She also uses her shopping time for socializing...4 hours later she's done and I've had my fill of latte's and reading every magazine in display. After I squeeze-in the groceries in my truck there's barely enough room left for the 2 of us! I try not to think about the 4 hours I had to wait, but instead laugh when I can't even see a sign of my mother sitting right next to me. It's tough having to give up independence when your kids grow-up and leave home and your parents move in as 6 year olds, but laughing helps! I have a cousin who also is caring for her mom/ my aunt and we share our upsides and downs and that helps alot. My cousin has taken over the role of "sister" and we also have a friend who lives in NYC that we chat with everday! If I didn't have anyone to share and vent with I would be miserable...I highly recommend it! When my mom treats me like the enemy it's hard and it's hard to beleive that they don't mean what the say, but I try to Live-Laugh and Love and it Does Help! I know that I will miss my mom when she's gone, so I try to focus on that too when I here her talking about the Dirty Devil; the nick name she has given me and try to tell myself "she lashes out at me because I am the only one here" besides my husband who helps some and holds me up too!!!

  - Jeanne

• July 16, 2010 8:17 p.m.

  I try so hard not to get angry at anyone - not him nor the disease. It's so hard being the only one to make decisions and to drive and to do every day!

  - Maureen

• July 16, 2010 3:49 p.m.

  My biggest concern is not catching the next step in my husband's illness. When I would wake up during the night I would find him sitting on the edge of the bed. I thought it was because he sleeps so much during the day! Wrong!!! I finally realized it was because he couldn't get his legs up on the bed. Because this doesn't happen all the time I sure missed an important happening. I feel so bad when I miss helping him. Donna

  - Donna

• July 16, 2010 12:02 p.m.

  Dear Marilynn, Both my parents had a difficult time letting go of driving...my mom actually renamed me "the dirty devil" and had all her friends mad at me for taking he license away at 85. With my dad everytime he asked for his car I'd tell him that it was in being serviced at the dealership, but with my mom I told her that my sister's car was unsafe and she should give her car to her before something bad happens. This is the sister that never comes to visit my mom...HMMMMMMM! Anyway this might work for you! Also changing the subject real fast can work too! Good luck...we don't do this to be mean because taking the car away also means further loss of our independence, so it's not something that is easy on anyone. It would help if the DOL would require people after the age of 60 to take a driving test when getting renewals!

  - Jeanne

• July 16, 2010 11:17 a.m.

  I regret not taking advantage of this information and support groups when my mother was going through the decline of this disease. I went through all the misguided efforts of trying to bring my mother back to reality with repeated explanations and questions. It took me over a year to get to the place of acceptance of the here and now of my mothers mental state--not without frustration mind you, but much less anger. I was upset and shaken after each visit until she got to the severe stage. Then it was different, she was no longer even a shadow of who my mother was and I was able to be with her on a totally different level. She was in a nursing home by the time she got to that moderate to sever stage so my experience was much less traumatic and stressed than those of you who live with this 24/7. The social workers at the nursing facility helped me with trying understand the process and how to be with my mother without getting wrapped up in the dementia. Not easy even for a professional as each person goes through the stages differently. Stay with these blogs people, each one of us can help each other in so many ways with our individual experiences. It's a long hard painful road watching a loved one disappear no matter what. Phyllis

  - Phyllis

• July 16, 2010 7:18 a.m.

  My fathers daily thing is his car keys and not being able to find them or the car. I will tell him over and over and over he has not car keys and the car was sold a long time ago. He says no it wasn't and then says he has two cars he can't find and what did I do with them and the anger starts. He gets in my face and starts screaming at me. I have to admit at that moment I'm not angry at the dementia I'm angry at him. It is affecting my health now but a nursing home is not what I want for him. How can you possibly disconnect your feelings and calmly say it's the dementia and not the person when the person is clintching his fists and screaming in your face. Your first defence is to scream back. I have to leave the room to compose myself but the anger still remains all day. It is so heart braking to spend the last days of life of you loved one in this manner day after day after day. What keeps me going is that every once in awhile I can see the real him shine thru and my hope begins again. I love him and he was once the greatest Dad around. This is such a cruel disease for all!

  - Marilynn