How can I get my husband with dementia realize that he can no longer make the same commitments he used to?

7 answers | Last updated: Sep 24, 2016
Deel asked...

Memory loss progression is just very difficult for me, the caregiver! It is so difficult to tell my husband that he should not make commitments with some folks he used to volunteer for because I believe he was not doing a good job, that he should no longer play in the tennis league he belonged to because he was just not playing good, lots of mistakes, and hard for his partner (playing double) and...I did not like that he'll be told he can't play or volunteer anymore, which will be a real heartbreak for him! What can I do, what is the best way to tell him what I know, that he is not really contributing anymore to the fun of tennis and his volunteer work? I need suggestions from anyone. Thanks. ~ deel


Expert Answers

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

Keeping fit slows the progression of Alzheimer's and dementia. You might be able to get your husband involved in a different activity that will satisfy his needs. If tennis is your husband's only passion, try to talk to his partner about a different way of keeping him involved in the game. Aside from the physical aspects of the game, most likely the socializing is equally important to him. Ask his tennis buddies for suggestions. Talk to them. This should not only be on your shoulders.

It's important for you to be your husband's strongest ally and best friend. As much as possible you want others to be the bearers of the bad news. It will help both of you in the long run. If you get no support from his tennis partners, you might ask his doctor to recommend to him that he try a different exercise.

People in the earlier stages of dementia still have many abilities that they can share with others. Maybe your husband can be involved in a less demanding aspect of his current volunteer work or you might find a different organization that can use his help. It will help both of you for him to stay involved with the community at large. We all need purpose in our lives and that doesn't change with dementia. Your husband's demeanor will tell you when he's overwhelmed, so you can help him make changes.


Community Answers

Deel answered...

Thank you Dr Lokvig for your response. It is very helpful especially the part on informing his tennis partners. On the other hand, I did not want these partners to do things differently with him because of his illness. My H is not a gregarious person now (used to), keeps to himself, and I need to prod him most of the time. Most times I just do things for him which is what I don't want to do.

Two days ago I signed him up with a personal trainer at the YMCA where we go for exercise so he can get used to some of the equipment and then he can do some exercise himself, under the trainer's guidance. It might be an alternative to his tennis.

I still have to figure out a tactful way (maybe I can ask our NP daughter) to talk with him about letting go some of what he does.

He does not show that he is overwhelmed. He tells me he had a bad game, and it was (I drive him everywhere he is not familiar with the place).

Thank you again and aloha! ~deel


Frena answered...

why not let him set his own pace on involvement? most people dealing with dementia will gradually discontinue what they used to do. which apparently is already what he's doing. it's still a good idea to communicate on his behalf with the friends, so they actually know what's going on with him. often people are very kind once they know what's happening. other than that, let him make his own pace. don't push him out before he needs to go. doing other things may be very helpful and calming to him. i see a certain struggle in what you want for him -- you want him to do more stuff, you want him to cut back. he may have dementia but he's still a grown person and doesn't really need over-protection. as long as it's not harmful, why not let this work its way through. relax on this a bit -- it won't make that much medical difference and he'll set his own pace.


Audacity answered...

My husband has MCI and he has already stopped doing many things that he used to enjoy. He stopped hiking, stopped photographing wildflowers (he doesn't remember where they are or what they are named), he stopped chairing committees or attending meetings. He forbid me to tell his friends or family about the diagnosis. Being a doctor himself, and highly intelligent with a wonderful sense of humor, he is able to mask many symptoms. But friends are starting to notice and I feel I should tell them. It makes me feel like I am betraying a confidence in our marriage. I am torn. He forgets appointments for lunches, etc. or sometimes will book two or three at the same time and then gets upset with me. I am blamed for anything that goes wrong and it is hurtful.


Deel answered...

@Frena, you were right with some of your takes of my problem. I am kind of overprotective. I am the one hurting when I see his tennis partner telling him what to do and H gives him this blank stare and not pick up the ball, etc. Eventually I e-mailed the league and mentioned his illness and because of it he may not follow some directions and so he needs some understanding from them. I got a very positive response from the group especially from the women, and one man. So I will see how it will be in the Fall tennis round of games. Yes, I want him to be more active and yet want him to stop some activities. The last 10 days, he did not remember he plays tennis, he rides his bike...in other words, I have to remind him of these things. This is a very difficult stage for me. Anyway, we have this new training exercise with a personal trainer which we both hope will turn out tob e a good introduction for him on the correct use of equipments. Thank you Frena. @Audacity, your story is my story. My husband did not want even his family (except our two kids) to know of his diagnosis at the beginning. When I talked to my friends on the phone, anywhere, and he was there, he would ask me right away what we talked about (of course he does not remember.He is suspicious. He got mad when I say anything about forgetting or memory to anyone, no reference to his medical condition. This made me very upset also at the beginning. From my experience, you have to tell your close friends, and his former colleagues of his condition and ask them to try to understand him which will be appreciated. This helps you more than him. My H left me with cameras and all kinds of computer software he does not use anymore ( he wants to, but he just can't use them including my point and shoot camera); when he was an avid amateur photographer and taught photography in high school. We do things together most times and I have to go over things he had done - dishes, clean ups, laundry, yard work (pulled vegetables I planted ; he thought they were weeds). And you were also right about being able to live a lie when he was still working. He was friendly and helpful and gregarious. He used to speak Vietnamese fluently and acceptable Chinese Mandarin, and interested in language and many other things, being Asian historian. But I tell you, the changes had been very sad. And his blank stares tell me more of what he is going through, so not my husband! Take care.


Jytte lokvig answered...

I started our Alzheimer's Cafe here in Santa Fe in 2008. It has provided a wonderfully safe place for people to come together, folks with Alzheimer's and their families and caregivers. It has helped numerous people who are living with the disease to share with others in the same situation, especially those who, like your husband, have a hard time accepting their disease. And of course their families as well. We focus on making the best out of this "new life." (we sing, make art or just talk and laugh a lot.)

You might consider starting a cafe in your community. It's super-simple with wonderful pay-back. Go to our website: www.alzheimerscafe.com.

It's hard for caring family members to accept that needs have changed and get used to connect with this "new version" of their loved ones. Try hard to focus on his current abilities as they will continue to change. I'm encouraged to hear that he's still helping out with daily tasks, even if you have to go back over everything he's done. I know it's hard, especially to thank him for his help when he's made double work for you. When he gives you that blank stare, it's a good idea to change the topic or activity to something you know he still enjoys. For your own sake, try not to linger on the loss of his amazing abilities. He might enjoy hearing good stories about his accomplishments as long as he doesn't feel your loss and regrets. And as Frena said, go where he wants to go. Exercise and other activities are good as long as he enjoys them.

I'm pleased to hear that you had a positive response from his tennis group. You'll find that most people are very understanding and by being open with his disease, it takes the pressure off of you. You need a support team. Your husband is so lucky to have you as his loving and caring ally.


Jytte lokvig answered...

PS to Frena, I'll be in your area around the holidays. I'd love to meet you and compare notes. We're coming form the same place. - Bisbee could probably benefit form an Alzheimer's Cafe, what do you think?