Alzheimer`s Disease/André PD & LBD


Hello Mary it's me again,,well summer is over it was balanced except for André
's falling, fall is here and winter almost on us..
He has adjusted to being placed it is now very nice where he is and getting great care, I still go a lot but more when I feel like going I am mentally in a better place for now I have joined a group with a group of people that are going through there partners fighting cancer I think I mentioned this to you in the spring it has helped me very much and the support in unbelievable, I am also taking a 3-D course challangeing but fun,,
Now my spouse is crying a lot asking to go home to his mom and dad scared that they will put him out because he hasn't been home, he is falling a lot, total incontience  but still goes to the bathroom for bowel movement, he does know me but he is scared thinks people come in his room to hurt him he says he no longer has the courage that he had, his skin is bruising easily he tells me it's little black bugs that is eating his skin,,he has aged very fast, he still eats well actually gained weight I think sleeps well, does most activity especially music sings like crazy and is less demanding when I say I am leaving most nights he is watching the clock around 7 p.m and is in bed by 7:30.
Because he was a very good ball player, hockey, golf he is always doing something for his team especially for ball most of the time,,he remembers no one coming into see him except myself most times, although he does tell me that I don't go often and he gets lonesome..but tonight he was lonesome for his mom, I don't know how to answer him when he asks me to call his mom I told him that I would tonight, for awhile I thought about calling his sister in law and asking her to pretend that she was his mother but I didn't, would this have been the right thing to do?
Mary where are we now in this LBD I think we are going out of Stage 6 if I go by the stages you sent me, what should I do for him now and what are the changes going to be,,we are going to see his Parkinson Doctor on Monday Nov 19th his doctor at the residence thinks that she may have to change his medications he is having also many hullications..Please I need you expert advice you have guided me this far and I so appreciate it..
Thank you so much

Hi Joyce, I'm so glad things are less stressful for you now. I know this is the hardest thing to deal with - dementia is so much worse than other illnesses for a family to cope with.

When he's asking for his parents and to go home, he's really looking for reassurance. He's wanting to go to a place and time in his life where he felt safe and cared for, when he knew who he was and what his place was in the world. All you can do is put your arms around him, and tell him he is loved and that everyone is okay, he will see them soon, and no one is mad at him at all. Don't be afraid to tell him loving fibs if you have to - perhaps you could tell him his mom is away but she's coming soon. He's clearly very anxious - which is another reason for the doctor to consider changing his medication. He won't remember what you tell him or what you do anyway, but he will retain the emotions - you might notice that if he gets angry - he will forgot what he was angry about but still stay upset for a while. So if you help him feel more secure and cared for, he is likely to retain that feeling even if he forgets what you tell him. If he still has any sense of humour, I would find a way to make a little joke or tease a little to take his emotional focus off the negative.  

My mother in law did this too. At one point, she forgot she was ever married and started signing her maiden name. When she asked to go home, it was to her long gone childhood home, her parents and her sisters. We just told her whatever we thought would be comforting and reassuring, give her hugs and tried to distract her onto some new subject. It was often a good time to get her to tell me stories about her sisters, since her memories of her childhood were very vivid.

She also would not remember visitors. At one point, she was in a physical rehab place after a hip break for a few weeks of intensive therapy to get her walking again. We lived close by and I was going daily with our then 2 year old son, and she would accuse me almost every time of never coming to see her. There would be flowers and cards and gifts clearly from other friends and family who had visited, and if you asked about them, she would deny all knowledge of them and say no one had been - but her room mate (who did not have dementia) would tell me about all the various visitors my mother in law had no recollection of. I learned not to take it personally. She really could not remember who had been there.

You know what lies ahead for him is not great - he will continue to lose ground on every front. However, a trip to the doctor should be helpful to see if you can do anything to make him feel more comfortable in terms of hallucinations or other things causing him anxiety.

Right now and going forward, quality of life is everything, so he should be as serene and happy and contented and free from worry as possible. Little things can bring him pleasure - watching the birds, eating some ice cream, looking at old pictures, listening to some music he loves. It's wonderful if he's participating in activities, is eating and sleeping well and is able to socialize a bit. You just have to take it one day at a time, as it is impossible to predict how fast or slow things may progress.

You are doing a wonderful job, and I am so glad you are taking better care of yourself.

Thinking of you.

Alzheimer`s Disease

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Mary Gordon


Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.


Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

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