How should I handle my wife that has dementia and is wheelchair bound?

A person with dementia cannot 'get well.'
Her brain has changed; her brain cells are dying.
It isn't that she 'doesn't seem to want to get well ..." she doesn't have the cognitive capacity to change.

* Contact Teepa Snow (website, books, You Tubes) to learn about what dementia is, what kinds [how different parts of the brain are affected], and how the person inflicted 'feels' and 'thinks' inside (from THEIR point of view, not yours]; learn how to interact with her based on where she is and how her brain is now.

* As you have access to professionals, i.e., ask MD, social worker / administrator / department manager about dementia. Ask for support / discuss your perceptions and expectations of your wife. (See below; get into therapy and/or a support group).

* Learn to mentally, psychologically and emotionally pull back - find the 'you' separate from her; learn to support your own health needs during these difficult and challenging times.
- Your wife is not the same person she used to be. You are grieving a loss. It is very sad and difficult. Give yourself time and space to process how you feel.

* Yes, you will lose it and it could be very helpful for you to release these feelings
- IN THE APPROPRIATE SETTING WHICH IS NOT AROUND YOUR WIFE. When you feel triggered, leave the situation (her) - for a minute or an hour - or longer.

- You need to 'reset' when you start to feel activated (emotionally losing it).
- Consider getting a therapist to help you through your feelings.

This IS a very difficult time and professional support will help you. Be aware to give yourself compassion and understanding, even if you are confused as to why your wife reacts as she does.

- Get into a dementia / spouse support group.

* Definitely get caregivers in so you can get some respite / breaks which are critically necessary to you/r well being and ability to continue as you need to do.

* Consider if placement is better for your wife.

- Of course she will not want to leave your home / go to a care facility. No one wants to leave their home, their family / spouse and go into the unknown to be among strangers, ESPECIALLY when they have dementia - they are scared and confused. That you say 'she doesn't want to go to a facility' tells me that you do not understand what dementia is and what it does to a person's brain. For you and your wife, you need to educate yourself as I suggest here. Reaching out on this site is a good first start. Good that you are doing that and keep coming back. There is A LOT of support here.

- You DO NOT ASK a person with dementia what they want; you do what is in their best interest and well-being. She doesn't know.

Gena / Touch Matters

Bob, your wife has dementia and her brain is permanently broken, so she can no longer make decisions for herself and you now have to step up and do what is best for you both.
And that may very well be placing her in a memory care facility, where you can get back to just being her husband and advocate, instead of a burned out full-time caregiver.
You say that your wife "doesn't seem to want to get well" but I hope you realize that she never will be well again, and that even if she knew how to, she can't as her brain is broken.
It sounds like your wife's care is getting too much for you, and that is ok. Being a full-time caregiver is not for everyone, and it is beyond hard.
So like I said, you must now do what is best for you both, and I think you already know what that looks like.
So I will wish you well in finding the best memory care facility for your lovely wife where she will receive the 24/7 care she requires and you can get back to being her husband.
God bless you as you take this final journey with your wife.

I'm very sorry, but sometimes it comes to the point where what wife wants isn't what wife needs. You will have to find what she needs now, and please understand that dementia patients eventually cannot make decisions for themselves. Their brains are broken.

Inquire about palliative care and hospice. You need help, and I hope you find it soon.

Almost no one ever wants to go to a care facility. And a person who is dealing with dementia is no longer capable of making decisions in their own best interests. So please don’t ask your wife about the next steps or what she wants, this will only get an automatic “no” and lack of cooperation. This is the time when she’s depending on you to do what’s best for her. And your well being matters too. This level of care is now too much for you to handle on your own, not your fault at all, no one person, especially with their own aging issues can do this forever. Please make the best decision you can to get the help your wife needs, whether that means getting helpers in your home or moving her to a place where help is available around the clock. You’ll need to be her advocate either way, but not an overwhelmed and exhausted caregiver. I wish you both peace in the journey

You handle her with love and care. Consider this how would you like to be cared for if you were in a similar position? I don’t think anyone knows what one thinks when they know end of life is near. I am happy my wife no longer suffers but I wish we had more time together. You will not get a second chance to do or say anything

Bob, contact a Hospice in your area.
Hospice will provide you with all the supplies and equipment that you need so that you can safely care for her. Supplies will be delivered to you.
A Nurse will come to visit at least 1 time a week, more often if needed.
A CNA will come at least 2 times a week to give a bath or shower and order supplies.
You will get encouragement and education from Hospice.
You can ask for a Volunteer that can come in and stay with your wife while you run errands.

With dementia eating can be "confusing" picking up a fork or a spoon and putting food on it, bringing it to the mouth and putting it in the mouth and chewing is a lot to do.
You might have to switch to finger foods and see if that helps.
You might have to start feeing her. This is a very common thing that happens.
You also need to get swabs and run the swab around the inside of her mouth between the cheeks and the gums to loosen and swipe away any food. This is called "pocketing" and happens when a person stops using the tongue to move food from that area. Or there is not enough drinking for fluid to also rinse away food particles.
You may also have to start thickening any fluids that she is drinking if she is beginning to cough or choke when drinking or eating any thin (not just drinks but soup, Jello, juices...)

Your wife isn’t choosing to have dementia. She can’t decide to get better either.

It sounds like you are either misunderstanding dementia symptoms or that you are becoming frustrated with caring for her. Please don’t try to do everything on your own. Reach out for help.

Educate yourself as much as possible on dementia. If you find yourself unable to care for her then look into placement so that she can receive the best care possible.

You can be her advocate and visit her in a facility as her husband. The burden of the hands on caregiving will no longer be yours to carry.

Hi Bob,

Unfortunately, if your wife has dementia, she is not going to get better. She no longer has the capacity to understand things. She will never tell you that she wants to go to a care facility. You will have to make that decision based on what you can do and handle vs. what she needs. She is mentally incapacitated and can no longer make good decisions for herself. You will have to do that.

It is hard to watch someone you love act differently. It is hard to move into the caregiver role for someone who used to handle things around the house. I am sorry you are experiencing this loss/change... It is difficult at best.

Get with her doctor and or social worker to assist you with bringing in some help with her. Someone to bathe and dress her and maybe sit with her while you run errands and that sort of thing. If you still don't think you can manage everything, you should consider placing her so that she can get 24/7 care by professionals. If you have adult children, ask for their assistance in planning all of this and making these decisions...it is a lot.

Bob1935, I will speak from my experience with my husband who is 7 years into his diagnosis of Alzheimers. We had grown far apart long before his diagnosis and lived independent lives (more or less) but shared our home. Before being diagnosed, conflict between us grew as did my resentment. He blamed me and I blamed him for that. When I read your message I wondered if you have unresolved issues with your wife as I did with my husband that is making this overwhelming for you. It is incongruent and disorienting to care for someone whom you do not care for. After a lot of therapy, meditation and self reflection I have found congruence and relative peace. In my new narrative, I am honoring our vows and maintaining my commitment to our family. I have developed an excellent support system that I coordinate. I do a lot but I do not personally do everything for my husband. I am not afraid to assert myself when I realize I cannot deal with something. In our case, having my husband live at home with help is manageable for me for now. When I reach the point that I can't cope without resentment, I will decide unilaterally that he will move to a memory care situation.

Based on your message, it seems you have reached a decision point for your wife's care. If you cannot care for her without resentment, it is time to change her care plan. I recommend that you talk to a therapist who specializes in elder issues to work your way through this. Totallife.com is where I found my therapist. Having an uninvolved, well-informed person to help me find my best answer to a complex issue was priceless.

Best wishes to you while you discern the best way forward...for both of you.

Most peoiple understand what ADL's are (Activities of Daily Living such as showering, dressing, getting in or out of bed or a chair, using a toilet, and eating ) But what do youi know about IADL's (Instrumental Activities of Daily Living)? IADL's include using the telephone, preparing meals, housekeeping, using transportation, taking medications, and managing finances. Dementia is chronic and deterioration of brain function is progressive. Has your wife had a brain MRI yet? Has her neurologist explained which parts of her brain have atrophied the most? it isn't that your wife isn't motivated; it's that she no longer has the ability to make judgment calls about what is good for her nor is she able to set goals and plan how to achieve them. Not only that, if her Caregiver becomes confrontational or autocratic, she will dig in her heels like a two year old and refuse. When I became a mother, it was so exciting when my baby started learning new skills: rolling over, crawling, walking, first words, first sentences, and ultimately total independende. A child's skills develop in a specific order based on how the brain devlops new areas of growth. A dementia patient's brain is doing the same thing-in reverse order. Ever heard the expression, You are acting like a two year old? Well the dementia patient like the toddler is only capable of acting like a two year old. Your wife does what she does because that is the best she can do. The one part of the brain that you never lose though is the emotional loving side. My husband is sweeter than he ever was when he was my equal partner and he is still himself. My rule is don't sweat the small stuff and have fun. I focus on the relationship unless it is a matter of safety. I found it very helpful to take some courses in Caregiving so we don't fight. There are a lot of resources available for Caregivers to help.