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Husband in early/mid-stage dementia refuses to exercise even with me. As a result, he is getting less and less mobile. He can barely walk a block. I've tried asking him to go with me, suggesting, coaxing, cajoling, nagging. Everyone (doctors therapists etc) tells me to leave him alone about this.


It's so hard to watch him deteriorate. I'm worried I can't push a wheelchair. I find myself a little angry that he's doing this to himself, and selfishly to me.

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No. He isn't doing this to himself. He has dementia. If his therapists are suggesting that you do not push this I would listen to them. You might consider a couple of sessions with a Licensed Social Worker in private practice as a therapist as they are good at helping with acceptance and life transitions, the euphemism they like best for the deterioration and loss that happens when there is dementia--these sessions for you alone.
If gentle persuasion and a shared walk doesn't make your husband "want" this, what other reason is there for it? To make him live a few months longer in this state of constant loss and torment?

. He has already negotiated enough losses and there are more to come (as have you). I wouldn't press this, because then he has lost also any peace he can have with the one person left to love him.

On some level you are losing the person you love. He is not himself, and both he and you are losing pieces of him daily. Only you can decide when it is best for you to place him, visit him, accept this, and try to reclaim some living for yourself in your own latter years.

This is a tragedy, and you will see on Forum that you are so not alone. None of this is easy and we often need help. My heart goes out to you and I wish you the best.
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Yes, it is very hard, but you can't change what's happening. I agree that you should not bug him about doing something that he clearly doesn't want to do.

Whether he exercises or not, the outcome will be the same. This is a cruel disease.

If you're worried that you can't push a wheelchair, look into care facilities where someone can. Then you'll be prepared when that day finally comes. Preparing yourself has everything to do with helping him, and it's the best thing you can do for both of you.

Very sorry, OP.
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I have promised my Dear Husband nothing. I know the last thing he wants is to be in care. I told him I will do for him until I cannot do it anymore physically. He is 10 in taller than me and 80lbs heavier. At 5 ft I just couldn't do physical care.

You need to listen to his Drs. You only hurt yourself pushing him to do what he can't. Have his labs been checked? His potassium maybe low. His thyroid not working right. His heart or lungs no longer doing their job. A medication he is on.
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Let him know if he becomes bedbound or you cannot push him in a wheelchair, then Skilled Nursing is the only alternative. Of course, he has AD/dementia meaning he wont understand consequences and probably doesn't have the ability mentally TO exercise or stay "motivated" as a person w a working brain would do. You're expecting from him something he's likely incapable of doing, and feeling angry at "selfish" behavior which is an addled mind.

I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:

https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

Best of luck to you
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I'm sorry to hear that you are obviously still in denial about your husbands dementia, and what exactly that means.
His brain is now broken and will NEVER get any better, only worse. He is not doing anything to himself, or selfishly to you.
He can't help that he can no longer exercise with you. I'm sure if he could he would. His brain is no longer able to tell his body what to do, and while yes that is heartbreaking, it is also his and yours new reality, and the sooner you can accept that the better off the both of you will be.
And when it comes to where he can no longer walk and needs to pushed in a wheelchair, if it's too much for you, you will have to have him placed in the appropriate facility, where you can just be his wife and advocate and not his caregiver.
So for now, redirect your anger at the disease itself(as you have every right to mad at it)and not at your poor husband, and try and enjoy whatever time you have left with him, as there will come a day when you will wish for just one more day with him.
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If he cant walk he will have to go into a facility. He has dementia gets not going to get better only worse. Start planning for that.
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The one word that jumped out at me on your post is ‘nag.’ Please don’t nag him. He doesn’t deserve or need nagging. It won’t serve any purpose.

Yes, you have good intentions but all the nagging in the world is not going to help and it will ultimately make you feel worse than you already do.

Please educate yourself thoroughly on his condition and then the only thing that is left to do is decide whether or not you are able to continue to care for him by yourself.

You can hire additional help for your home through an agency or a private caregiver or you can place him in a facility where all of his needs are met by a complete staff around the clock.
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Wolfpack Apr 2023
I agree wholeheartedly with no nagging. Those with dementia react to feelings of negativity by associating that person with the feeling they get when around them. You don't want your husband to associate you with negativity.
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Knowing what I know now, I would inform him that when he becomes bedridden and can no longer walk even to the bathroom, that he will be placed in a facility.

Let it be his choice and begin making plans before you find yourself breaking your back trying to lift him, change him, clean him etc.
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Sample Apr 2023
Been there. A facility ( rehab for a broken wrist) was the beginning of her downfall. She actually got worse. It was so bad I would not put anyone through that again. Before going in she could walk with a walker when she came out she was bed bound. I would not wish that on anyone. My only thought is to do your research before you make the decision
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When my dad, who had dementia, came to live with me, I had all these visions of taking him for a daily walk or even sitting out on the deck with him since all his life he loved walking and being outside. But he didn’t want to be outside at all. The only time he seemed to feel secure was if he was in his room with the tv on. We had various therapists come to the house and prescribe exercises to help his mobility but he was very resistant to trying to do them for me. Eventually he became bedridden and died shortly thereafter. I realized it’s part of the process and part of the disease not to want to “participate” as they once did. I did eventually have to use a wheelchair to take him to appointments and things. That wasn’t all that hard but getting him in and out of the car took a lot of strength. So keep working on your own strength training so you’ll be ready when the time comes.
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Been there my wife has deteriorated so much she has been bed bound for a year. ( nothing physically wrong) now she is starting to get contracture in her legs. She has lost a lot of weight and continues to get weaker. Hopefully she will start therapy this week I told the doctor the goal is not to make her walk but to just keep her flexible. When they first tried therapy the goals were set too high that only lead to her deteriorating even more.
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Leave him alone. If he needs a wheelchair and you cannot push it, get a power chair or place him in a care facility
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MACinCT Apr 2023
He may be beyond being safe in a power chair
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It is normal to grieve watching the decline of a loved one. Seek support for yourself via either a local pastor, other faith support groups, senior center support groups, grief support groups etc.
Honor your spouse's decision and
" patient rights" to make decisions about what they want and do not want. Also, he may simply not be able to " exercise" as you or others do now. Tell him you love him, encourage him but do not nag nor force, as he may not be able and also may not be able to fully express himself at this time. Follow the physician direction to let him be; this lets him retain also some dignity and self respect. You mean well and like many other people are placed in a very challenging position of being a " primary caregiver" as spouse in the home, longing for better days , and still in need of your personal physical, emotional, spiritual health needs. Finding a " balance" is always challenging for everyone ( even when all are healthy).
Find a balance to care for yourself, give yourself permission to go for that walk, attend a support group etc and, as hard as it may be, respect that your beloved husband cannot do as it used to .
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After reading your post and several responses I wanted to say something about a persons health that is declining with cognitive issues and physical ones. First my husband is bedridden with MS. He does have some cognitive decline issues as well. My father had early onset Alz, so when you are working with a decline like this it is important to find the things that "do work" to accomplish the goal "you" are trying to reach. My husband will not do his own exercises in the bed unless I participate. It does not make sense to me because he was always self motivated and could run circles around me.... but I work with him every morning so he has enough strength to stand so I can do what is necessary. A physical therapist once told me that most patients don't want to exercise by themselves, they need a love one to participate for the motivation. Your husband may not want to get out an walk with you for several reasons that he may not be able to explain because of his cognitive decline. However, there are many exercises that you can do with him in the house to strengthen his legs, core and arms. Doing them every day and making it fun for both of you will slowly increase his stability. I can tell you this from experience. If your husband can still walk thats huge. Will he go to the store with you or park to walk around? Anything that in his mind is not exercise but provides movement and strength training. My dad during his Alz would go with my mom to the park and walk around enjoying the sights and use the jungle gym there to try to do pull ups. Think outside of the box and you might find that it is fun for you and he gets exercise and you will too. If he can sit in a dining room chair and lift his knees one at a time, that is exercise. Maybe before he eats lunch you both can do this to see who can do the most. Just an example. Good luck.
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Leave him alone and work on getting your head in the right place. Your fears are motivating this, and you need to recognize that, because whatever the next thing that happens to him in his decline may lead you to blame him for doing or not doing something.

My husband is obsessed with working out, and everything that's ever happened to my body is because I don't workout. Ruptured a disc in your back? "You didn't workout." Got a cold? "You didn't workout" (and he ALWAYS goes to the gym sick, so he can sweat it out). 🙄

I hope you aren't that person, because it's obnoxious. What your husband is doing is not intentional or something he's doing to spite you -- it's DECLINE. It will come to you, too, one day in spite of you exercising.

This is his illness, so don't make him out to be selfish. When we decline, we turn inward and tend to become unable to please others. Read up about dementia because to be informed is empowering. Contact the Alzheimers Association, watch videos by Teepa Snow, read a book, but learn what you can. It'll help both of you.
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What would you do if his disease paralyzed him? Well, it does, but you can't see it; when the brain is damaged, it affects his entire thinking process, which changes who he is and how he functions.

How about putting him in a daycare program or respite program to meet other people and get inspiration just watching his peers?

https://stanfordhealthcare.org/medical-clinics/memory-disorders-center.html

https://www.findhelp.org/provider/the-alzheimer%2527s-association--turlock-ca/6061331249627136?postal=94303
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could not get my mama or daddy to exercise or move. I refused to argue with them. They wanted to watch tv. This way they didn't hurt. they didn't have to think and we didn't argue. yes I eventually pushed them in a wheelchair but thats the way life goes and maybe you can get an electric one. FSA or HSA should be able to help you. I'd take peace over arguing anyday.
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I believe that it is part of the downward spiral. My step-mother who has front temporal dementia use to love to walk, now she does not, she sits and draws and colors. It is fine with me.

They don't understand selfish, their minds are broken.

The doctors, therapists are giving you good advice, back off all you are doing is upsetting yourself.

He may need to go into MC at some point, a motorized scooter may be needed or an electrical wheelchair, time will tell.

Daycare may be something to consider right now, so he can get use to doing things with other people, sometimes a little competition helps.

There is no cure for this disease, we caretakers need to roll with the punches and keep our sanity, not losing ourselves in the process.
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This is so frustrating. Your question is timely as just yesterday, my Mom refused to try to "stand" from a sitting position because she sat so far back in the chair that her legs don't touch the ground. When I finally got her in the chair where her feet touched the ground, she started to worry that she was going to fall off the chair. The more she doesn't practice standing, the more her brain won't remember how to and her muscles and brain wont remember how to be balanced, and the more likely she will fall.

I am taking a break. I need to "be respectful" of the new normal.

P.S. Pushing a wheelchair is at least exercise for you.
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I totally understand your situation and frustration here. My mom lived with me for 7 years and graduated from pretty normal to MCI to dementia. In this time, I had her get both her well overdo knees replaced. She was never an active person and was HORRIBLE at doing her PT. It made me so angry as it was so important. I was what some here are calling selfish - every time she refused to do her exercises, I thought, well now you're one step closer to a nursing home. My boundary was that she needed to be mobile enough to independently get into the house and get herself from her chair in the living room or bedroom to the bathroom. And no commode - bathroom only. Her dementia progressed faster than her immobility and she is in assisted living now.

I refused to work harder on her PT than she would. On her second knee, I had paid helpers come and work with her cuz I knew from the first that she would NOT cooperate with me and I was just not going to go there.

One thing that I have shifted to with my mom is to tell her that we're doing something instead of asking her. Asking usually leads to a NO. They can still say no when you're assertive but I got much more cooperation when I nicely tell her what's next. So, instead of asking if she wants to go for a walk (NO!) I'd say OK it's time to go for a walk. More often than not, she would go along with it.

I like the suggestion someone made about getting him to do things that he won't think of as exercise. Can he move things around the house for you? Laundry? Get the mail? Ask him to help you with X - shopping, etc. Help you organize things and move them from one room to the other, etc. etc.

When he is having a good day, I also like the idea of telling him that if he gets less mobile, you will not be able to take care of him at home and he will have to go to assisted living. If he does not like that idea, get him evaluated for PT and have them come to the house if possible. I would also hire some aides to come in on the days the PT people are not coming to do his exercises with him. Take yourself out of the role of being the task master.

Best of luck!
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Revajane: Please do not nag your DH (Dear Husband). Perhaps you can garner information on the disease by reading the book, 'The 36 Hour Day.'
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My heart goes out to you and sending you a big hug. This is hardest on you to deal with 24/7. It is a common concern here. Thankfully my husband doesn't show signs of dementia. He makes every long-winded excuse not be active. I've tried everything. MD and PT have tried everything. It IS selfish and has created a significant rift in our marriage. I have the wheelchair hard line. When his choice to be sedentary destroys mobility, it's AL. I bet he thinks I'm bluffing. Sadly "what will be, will be" has come. I never thought he'd give up; that's not the determined, vibrant man I married.
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Please keep in mind many of us can't afford to just " hire aides". It very discouraging to hear
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Just thinking...what it all comes down to for me if I was in this situation...at 73 I wouldn't have the energy to push him anymore. He would just end up in a facility sooner than later and with Dementia, he can't process/or comprehend that. As a woman married to a man who has been hard of hearing for 72 years and he is 76, the possibility of him getting Dementia is a strong one. I have promised him nothing. I have told him I would keep him home as long as possible but no guarantees.
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You can not force exercise, eating or motivation. Leave this alone. Dementia means no insight and poor decisions. Anger happens. I chose therapy for me…so I could be a better caregiver..it is a tough job..Good luck..
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Ariadnee Apr 2023
Absolutly. My husband has Frontal Temporal Dementia (like Bruce Willis-but can talk). This tends to move faster. I've been watching the changes for the past three years, maybe longer. He does not want to take walks, eating less and seems to be withdrawing a bit more. Dementia is actively removing, erasing, eradicating, eviscerating, the brain, how it functions, what it can do. They are hostages to the disease that is relentless in its cruelty. There is nothing that can be done, other than mitigate symptoms with medications. I watch Teepa Snow on Youtube, post on this forum, attend Zoom dementia support groups. I'll be going back to therapy, no stranger to it, things have reached the point here where it's nessacary for me to do. Yeah, I get angy at the disease, so unfair. And don't get me started on the utter failure of 50+ years of dementia research and no results.......
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