The miserable middle stage
My husband has had Alzheimers for who knows how long. He began complaining about his memory in 2015, but the neurologist he was seeing annually as part of the nationwide Alzheimers Disease study (enrolled people who were healthy and those who were not) kept telling him his scores on the 3 hours of testing were still at the top. He has a Phd in Molecular Biology and years of work as a research scientist, which I now know means lots of cognitive reserve. That masks symptoms. Finally in 2019 the neurologist (who was also a professional colleague and I think didn't want to see what was coming) diagnosed MCI and then Alzheimers. He's been on Aricept and Namenda for years. He is calm, doesn't wander, doesn't get excited or angry, just sad. I, on the other hand, despite this forum, caregiver groups, several friends whose spouses also have diagnoses, am not the caregiver from heaven. I get short tempered ("why can't you put that vest on yourself; you've been doing it forever"); and impatient. But the biggest problem is he has nothing to do. We go to a local Alzheimer's gym three times a week for an hour or two; there is no day program here; I have a caregiver twice a week for 3 hours, but in between he stares at me with a pathetic look and asks if he can help. Help today, when I snapped at him that he could weed (as I was), he then proceeded to prune with his hands a healthy plant. Again I snapped. He doesn't do puzzles; can barely cope with sorting the silverware from the dishwasher; will watch some t.v. but then quits, will read the same book over and over. Pets the cat alot. We walk several times a day but soon it will be hot, and he has horrible knee arthritis. I am exploring MC facilities but he is much higher functioning than what I see there. I will probably place him earlier than I should just because he has to be suffering from my short temper! Thanks for letting me rant.
Comments
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welcome to the forum. Every stage is hard. It’s very difficult to let go of any expectations that he can do anything. You might both benefit from placement, as a good MC facility can provide him with socialization and failure free activities that are not available at home. I wouldn’t worry about it being too soon. Most people wait too late.
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This caregiver job we find ourselves in doesn't come with a manual. Some people or not cut out to be one and to be honest from what you wrote, you may not be. I think the quicker you find a place for him the quicker you can become a friend/wife and the better off you and he will be. I hope I'm not coming off hard (didn't mean to)…it's just not for everyone. You should have no shame or guilt for placing him. It's a very hard job that will not get easier.
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Read about loss of executive functions, he cannot do any sequential activities. Then read about failure-free activities, there is a book with that name. Also, "I Remember Better When I Paint."
Iris
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I totally get the frustration and anger at having to do everything as he watches. I am attaching a document about the stages and mental equivalency. It may help to see how the loss of brain function renders them truly unable to do these things. It also may help to talk to someone, maybe a counselor who is educated in Alzheimer's caregiving. I go through the frustration thing every day and then remind myself that he is not purposefully wanting to do nothing. He is miserable and sad. My DH used to do so many things and now he is truly incapable. It must be especially difficult for you and him given his previous life of achievements. I am so very sorry as this is very difficult.
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Welcome to the forum. I feel like I have written your same post, many times over the last 2 year.
My DW is also sweet and always, always wants to help. I've found myself frustrated and impatient with her and I hate when I do it. Her help is simply not helpful anymore.
I have a great friend who has a PhD in childhood development and her husband also has dementia. We chatted about his utter unwillingness to help at all or acknowledge he even has dementia, while I have a DW who knows, is sweet and always in my dang way wanting to help then doing everything wrong. Her advise to me helped me so much. She said, "Your DW is a toddler now, even though she's in an adult body. Let her help, but give her tasks that a toddler could do and pretend to be happy about it." Haha.
Yes, it takes me longer to get some things done, but letting her pick up sticks in the yard that don't need picked up makes her happy, because she has a desperate need to help. And, she thinks she is when I give her those tasks. It's so weird looking at the DW who still looks just like my DW so I have to force myeself to remember, "She's actually a toddler now"
Hang in there.
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I totally get it. It is so, so hard to continually bite one's tongue when your PWD says, "If there's anything I can do to help, just tell me" and the answer is basically, "No, just keeping out of my way is fine". I used to be a lot more angry than I am now. And yes, it's OK to admit that caregiving is not for you, or (in my case) caregiving is no longer for me because I can't do all the things that might engage my DH because I'm too busy cooking, doing laundry, paying bills, etc.
Acceptance of limited capacity is so very hard to accept, especially when our LO was very highly educated, etc. You seem like you are already taking advantage of the programs available to you, which is great, but at this point I would sure be looking at a Plan B of placing him. Very, very hard, I know. I'm on the road to this, and it's very hard to admit that professionals might do a better job of meeting some of your LO's needs. This whole journey is a humbling experience.
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The bottom line is that if you decide to be the caregiver for someone yu must abandon your "reality" and place yourself within the four corners of the person with dementia.
It is your life that is able to make a change not your loved ones.
Care means safety, general health as well as emotionsl well being!
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I have heard it said and I believe to be true , that it is time for MC when the LO gets better care there than at home. We are each who we are, some of us were meant to be caregivers and some not, and we need not be judgemental about those abilities. I can only hope I have the wisdom to recognize the time that my DW is better off under somebody else's care.
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I think you might still be comparing the husband you had with the husband you have now. It is hard. Have you tried music? I can put a Bach piece on and my DH goes to a better place. I did get frustrated at the apathy that my award winning chaired Professor at an Ivy League university displayed but realized it was not useful to fret. If your DH lost a leg would you expect him to walk? His brain is damaged. Have you tried films, sporting events and visits to museums? They are all something my DH and I can still share.
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I have to chuckle at Upstate Anne. I know my husband is not who he was—I mentioned his past simply to illustrate that he is enough of his old self not to do crafts, sort buttons, fold napkins endlessly. And jfkok's comment about his reality—none of us can enter that, no matter how we try. It's not the apathy that's the problem, it's that he needs something to do and there is nothing to engage him. Of course I've tried films, sporting events, visits to museums. He no longer is interested in museums and can't follow most films. We partipated in a local program with docents guiding us through three works of art; we have gone to Alzheimer's Music Jam; I take him to every musical event on offer, ranging from musicals, to symphony, to early music, to band; we go to the special gym; I take him for walks. We belong to the zoo, two botanical gardens and the Desert Museum. But there are many many hours in between all these places and activities that are very difficult to fill. And though MC might seem like a better option, I have visited 6 highly rated facilities and only one really had much going to besides bingo and crafts. That's my frustration. I think MRAhope says it best—when we have done all our work to run both of our lives we have no stamina left to think of an activity that will occupy our person…
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My partner is in a very highly rated facility and has no interest in most of the activities on offer. She likes to putter with plants (I've bought several and she and i visit the conservatory frequently), watch birds and the cat, and sit outside when the weather allows. we used to do art activities on our own, but that is waning. She naps a lot. It's enough for stage 6.
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@Iris L. always has something positive and very helpful to share!
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TucsonAnne. Thanks for your comments; what you describe sounds like us. We walk average 4 miles a day, peel potatoes, sort and fold laundry and silver. It's not demeaning for him, he says it's fun. He does not remember who he was, so satisfaction with what he can do now feels good to him.
It's not possible to keep him occupied, without my participation in the activity. He just does not have the attention span or the ability to make decisions. TucsonAnne, I don't believe that you have a "miserable short temper.' You are responding normally to something really really difficult. To live and love someone who had a mind like a steel trap and now cannot wash his hands without help is wrenching. And there are constant surprises. The latest was taking my plate and finishing my meal while I went to get butter. "That's my dinner!" was my too loud response. He looked so confused.
We have a lovely young woman come walk with him or sit and look at photo albums one or two days a week which gives me a lift, and I am working on finding more help. A friend of ours with a spouse with alzheimers has help every morning, and every evening, which leaves him with enough emotional energy to manage lunches and nights. Best of luck to you.
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You explain this so well! We function as cruise directors, but also have to manage and complete all the chores of living as well as monitoring our dear PWD. When I want to just collapse on the couch, or, more often, take a minute to make a needed phone call or pay bills, my DH paces around the house, stands next to the front door, or rummages in the kitchen - and I end up trying to find something to engage him so I can have a few minutes off duty. I've tried everything and the only thing that works, sometimes, is to convince him to take a hot shower. That can give me about 8 minutes of "down time"!
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This post has been so helpful to me this very day. I am feeling like I'm drowning in quicksand and that I definitely am not cut out to be a caregiver for DH with dementia. I have been a caregiver for my 37 year old adorable son with Down syndrome and feel competent in caring for him. DH is a different matter. I guess it has been helpful to see that others feel they are "not the caregiver from heaven" also.
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@tucson anne I don't have anything to add because everyone here has described it all so well.
I have an anecdote though - I placed my sister in memory care when she was probably mid-stage 5. She was pretty high functioning at the time. One of the other residents (he's still there) was, and is, fairly high functioning. He was a nuclear physicist. Lots of cognitive reserve there. One day when I was there he offered to look after Peggy for me while I ran an errand. It was very sweet of him, but I politely and respectfully, declined his offer. Because, well, you know.
I was always impressed with the activities at memory care and the ability of staff to draw residents in. Sometimes they fail, but often they find something. For Dr. T it was the garden, for Peggy it was the karaoke machine.
This is my long-winded way of saying early placement at memory care can work out well.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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