Apparently she has to be told what to eat when the food is in front of her. She has a rash that she had a home health nurse treat but my wife 'undid' what the nurse accomplished a half hour after she left. She doesn't seem to want to get well nor does she want to go to a care facility. I lose it once in a while.
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
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.
Inquire about palliative care and hospice. You need help, and I hope you find it soon.
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...)
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.
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.
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.
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