Alzheimer's disease

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• February 11, 2011 9:52 a.m.

  This is beautifully written Angela. I feel honored that you shared this story about my wife and me. I agree with you. My wife is incredibly courageous and good humored about this disease. It made me cry all over again to hear this story told again.

  - Tom

• December 24, 2010 11:28 p.m.

  ONE MIGHT TRY THE GIFT OF DONATION SO THOSE WHO COME BEHIND US MAY BENIFIT AS MAY THEIR LOVED ONES. MY RELIGION ALLOWS THIS AS AN OPTION WHILE I REALIZE RESPECTFULLY SOME MAY NOT.

  - antonia

• November 18, 2010 11:23 p.m.

  Does me lots of good to realize from this blog that I am NOT alone with the problems of caregiver for spouse. (Similarly, AA some forty years ago helped me with the realization I was not the only with an alcohol problem. This has changed my life completely. Wife comes first. (I used to be too self-centred). I have "survivor guilt". That could be ME with Alzheimers!! Very dependant, she would die within weeks if I were not there. Main concern is that she may outlive me. She is age 87 and I am 80 but her health and heart are good. We have 24/7 caregiver help, absolutely essential. But still my presence is need. I cannot absent myself for more than 8 hours to run errands. Wife is beginning to get cranky at times, so different from what she used to be like. Must keep reminding myself that this is not her. First time in my life I am learning patience. Main message is, thanks for your blog. It helps me a lot to know I am only one among thousands of caregiver spouses. I am not alone. Change of life is total. And death, hers and mine, are on my mind every day. To carry on until THEN. Not depressive. Very active, actually, writing a book. But life is terminal! We are born but to die. I and wife are as happy as we can be. That is all one can do or be. Thanks again.

  - Ronald

• September 29, 2010 8:42 a.m.

  I was the caregiver for 10 years of my husband who was gradually losing himself. At the beginning it was heartbreaking, sad and panicy, when he could realize what was happening to him. Then I had to get used to be with an unknown person in my beloved one's body. There are beautiful moments though when, for example he hugs you and smiles as you come home, then you forget the problem. There are things you can find to do together, mostly touching, caressing, dancing, singing. I do not want to talk about the obvious rest of the time. When he died I, at last, gave myself the right to mourn for a loss that occurred years before the death. When he died my home emptied. It feels like losing a husband and a baby at the same time. My advise: let your friends look after you, organize something out of home from time to time, make new dreams about your old age. Courage, much more awful things happen to people.

  - Haris

• September 28, 2010 4:10 p.m.

  I find wise and needed advice everywhere for Caregivers but very little (actually none related to the emotional needs of the person who is in the early stages of Alzheimers... with no idea of when the door will only be ajar for them... or, closed completely. Advice yes..and it's always wisely to be as active mentally and physically as possible.. but expressions of sympathetic understanding and ideas... none, none. 98JPAY (exercise your mind and body) but

  - Natasha

• September 28, 2010 7:26 a.m.

  I am a paid caregiver for a couple ( 88 & 95) who have issues. The wife can be very abusive verbally and physically. Sometimes her meds don't work with the hitting, kicking & scratching. Any hints on how to curb this?

  - HARRIET

• September 26, 2010 8:55 p.m.

  To Tara: You must not become hopeless. Watch Joseph Prince (Family Ch., Daystar, CTN, TBN - do a search) and the 700 Club (also on above channels). Also, the 700 Club has the "700 Club Interactive" every weekday morning at 6:30 or 9:30 (depending on whether you have cable or satellite) and Todd White and others are on who have an amazing healing ministry. Many people are healed of everything under the sun. Jesus is the same yesterday, today, and tomorrow. The 700 Club has a websit: CBN.com, and if you enter a search for Alzheimers, it should bring up a fact sheet they had on a story of a woman who had been a researcher at the Pentagon. Her husband was having severe memory problems, amongs other things, and was told he had alzheimers. She researched and found out that there are things like PSI, Co-Enzyme Q-10 and the reduction of certain foods (potatoes, bread, corn) that all helped her husband to improve his memory in a year's time. Also, read the book, "The Myth of Alzheimers." It is very encouraging and is not stating that alzheimers doesn't exist. EapxVJ

  - dani

• September 25, 2010 4:37 a.m.

  I witnessed a moment between my parents...my father told my Mom that it was going to alright to put him in a place when she could no longer care for him. When the time came it still hurt but you know your doing the right thing for both. It's the Moments they come back that keep us going.

  - Phyllis

• September 25, 2010 4:35 a.m.

  I witnessed a moment between my parents...my father told my Mom that it was going to alright to put him in a place when she could no longer care for him. When the time came it still hurt but you know your doing the right thing for both. It's the Moments they come back that keep us going.

  - Phyllis

• September 24, 2010 7:12 p.m.

  I am 35 years old and just decided to have genetic testing done, mostly for my kids sake..Caleb 6, Damon 8, Courtni 19. My mother died at 47 her father at 35 from ,early onset alzhiemers. I have the gene and so does my 41 year old brother and we are both showings symptoms already...for me mostly short term memory loss, some balance and dexterity issues also. I am devastated and can almost cry at any given moment of the day

  - Tara

• September 24, 2010 2:27 a.m.

  Thank heavens she had a chance to say that to her husband, to give him 'permission' to go on with his life in the future. I have no idea what my future holds, nor that of my spouse - nor that of my mom, actually...but I think this conversation is needed all along the way. By doing Living Wills, working on papers for the future the conversation can start. I love her words...they are what I would say to my husband...thanks.

  - Ricky

• September 23, 2010 10:40 p.m.

  I am the fulltime caregiver of my husband who has had Alzheimer's for 13 years. The first 10 or 11 years weren't too hard. I've just gradually taken over the responsibility for everything and gotten used to doing all the errands and chores myself as well as the cleaning, cooking, etc. The last couple of years have been harder with one of the hardest things yet - hallucinating. I understand that not all AD patients have this terrible part of this illness. He sees little men everywhere in our home, particularly in his bedroom, and feels threatened by them. He feels like they are trying to rob him of all his personal things. He is on Remoron for this three 15 mg. a day. It helps but doesn't completely eliminate the problem. If anyone has any ideas to help with this, please post.

  - Sue

• September 23, 2010 3:34 p.m.

  Please discuss the situation where the people who would benefit from discussions like this are not spouses or where the dementia had not necessarily been identified. I have been the daughter of elderly parents one of whom died with Alzheimer's. (Not diagnosed before autopsy.) Now my generation is the old one. I am glad that the generations are talking, even though the condition is called normal aging. Do all doctors speak of dementia when they see it? You write of cases where future dementia has been recognized and the the conversation is in time for all to be heard. My family recommends hearing moms ideas even before she has that diagnosis. Can you find a way to recommend this conversation even to readers who had not found their way to to the Alzheimer's pages? OOPS! Maybe I can't send this. I am visually impaired. I probably won't pass the. These tests make me so angry that I won't wait until I have actually read the posting guide

  - Emilia but prefer anonymity

• September 23, 2010 2:56 p.m.

  There is a great need for this type of program and also more public education about the early signs of dementia. My husband of 30 years is affected by some type of neurological problem. As his behaviour began to change, I thought he was just going through a bit of a mid-life crisis and made the terrible mistake of trying to reason with him, which only made him agitated and he would somehow seem to blame me for everything. He came to see me as the problem and eventually moved out. He is going steadily downhill and it breaks my heart that I cannot be there for him. He was only in his mid-50's and I never suspected that his forgetting to let me know of his plans might be the early signs of dementia. At a counselling session after our separation, when he got lost and arrived late, our counsellor told me he was exhibiting 50% of the signs on the Alzheimer screener and that I should speak to his doctor. He feels that he is fine, but now there is nothing I can do to help. He no longer trusts me, and seems me as the enemy. I wish with all my heart that I could go back in time. If only I had known I might have done things differently.

  - Diane

• September 23, 2010 2:05 p.m.

  The program sounds like an amazing one and very beneficial for both the caregiver and the person with the disease. In my case, I am the daughter of a widow with AD, and we didn't have that conversation. I am sure Mom and Dad discussed things privately, but I was not privvy to those insights. We were so focussed on Dad's illness when Mom was first diagnosed that it didn't seem even necessary. We did take care of all the paperwork, the power of attorney, the will, the banking, the house and had Mom move in with my family. Unfortunately she has now deteriorated to the point of needing full time care in a facility. It would be easier for me if I had participated in an "end game" conversation with Mom (and Dad) while she was still able to participate. Instead, we took the "one step at a time" approach. I didn't realize how much I need my Mom to participate in all the decisions regarding her own care, until she was no longer fully rational. I highly recommend having a conversation with your loved one about the actual physical care that may become needed in the future. The deterioration happens, as much as we don't want it to, and the care needs WILL be greater than you really absorb when you first get the diagnosis. If you have an opportunity to do this within the format of the HABIT program, all the better!

  - No name given

• September 19, 2010 9:08 a.m.

  Having recently come through the loss of a partner of 64 years WE fortunately had the conversations needed to deal with the "end game" I most certainly agree that one must be brave and deal with the situation honestly and whole-heartedly - difficult as the conversations surely are for both. Being the one left behind in a strong and loving relationship is the most difficult situation one can face and deal with alone. I have support and concern from different sources but have to learn that I too have to take charge and prepare for what is left for me to do in the rest of my life. ME

  - No name given

• September 17, 2010 3:38 p.m.

  I whoeheartedly agree that this is conversation should always take place between spouses once an AD diagnosis is given. There is another conversation that should also take place if it hasn't already ... and that concerns the drawing up of wills, power of attorney documents, living wills, and health care proxies. ALL of this needs to be in place while the recently diagnosed spouse can still have rational input. And I'd add one additional conversation ... how/where the caretaker will provide for the AD spouse. If at home by oneself, if at home with part-time or live-in fulltime health care aides, placement in an asssited living facility, etc. All spouses will eventually have to face these decisions, so once again it would be nice to have discussions while both spouses are able to fully appreciate and understand the wishes of the other.

  - Allan