My wife is getting worse. Sometimes does not know who I am. She gets relatives confused. Does not know the day. It can be like talking to a stranger. In the past I ignored her but now she is becoming more persistent. It is pointless to correct her or try to make her understand. In all cases I just want her to be happy in her altered state without conflict.
You won't be able to make her happy, but you can keep her loved, safe, healthy and pain-free as possible and peaceful.
Here is some guidelines that I found very helpful:
Rules for engaging our loved ones with dementia:
1) Agree, do not argue
2) Divert, do not attempt to reason
3) Distract, do not shame
4) Reassure, do not lecture
5) Reminisce, do not ask “Do you remember…?”
6) Repeat, do not say “I told you”
7) Do what they can do, don’t say “you can’t”
8) Ask, do not demand
9) Encourage, do not condescend
10) Reinforce, never force
The overall goals should be to:
1) keep them as calm and peaceful as possible
(because they are less and less able to bring themselves to this state on their own)
2) keep them physically protected in their environment and from predatory people
3) keep them nourished with healthy foods that they will accept without fighting or forcing
4) keep them in as good a health condition as is possible, that their financial resources will allow and within their desires as expressed in a Living Will (aka Advance Healthcare Directive)
5) keep them pain-free as possible and within their desires as expressed in a Living Will (aka Advance Healthcare Directive)
The caregiving arrangement needs to work for both the receiver and the giver. If it is onerous to the caregiver, then the arrangement is NOT working. Alternative types of care must be considered to avoid caregiver burnout.
I'm hoping you both have all your legal ducks in a row. I wish you all the best on this journey.
It helps a little not to assume she knows anything. You can say, "Your sister Elizabeth called today," instead of "Elizabeth called." You have to reintroduce people over and over, because it just doesn't stick in their brains anymore and don't ever say "Don't you remember Elizabeth?" It's upsetting to them.
Eventually you have to settle for being a kind friendly face and accept that that's all she knows. With my mother I became that friendly face, because there was no way she had a daughter. In her head she was 16 years old and hanging out with her high school boyfriend. My dad was forgotten in two months after 66 years of marriage, but that blasted boyfriend hung on for 75+ years.
It might be time for placement in a memory care facility where those things don't matter quite so much anymore. Every day is just "today," regardless of where it fits in history.
Her DH just does all the things. I went over to chat with her one day at his request as he just wanted to make the bed and fold some laundry without having to also entertain her. I stayed about an hour and came away with such a glow in my heart. They have been married 75 years and he still ALWAYS calls her 'darling'--no matter how tired or frustrated he gets with her.
There's no 'getting better' from this. All you can do is learn to cope with the changes and hope that you can always remember the love you share(d) even if she forgets who you are--you still had all that life together.
It's bittersweet, I know. My neighbor showed me a picture from their wedding day. It was proudly on display in the sitting room. He got a little teary eyed and said "Isn't she beautiful? That's my bride."
I had to go home to cry, it was so sweet.
The most important thing you must do is meet her right where she's at in her world, not yours. She no longer lives in your world and to keep the peace, and keep the frustrations down, you must meet her in her world.
If she's talking about something or someone you know nothing about, you just go along with it, like it's the God's honest truth. That will keep you both more calm than trying to make her feel bad because she doesn't know what's she's talking about.
I hope you have help with your wife, so you can get out and do things that you enjoy as you are important in this equation as well.
And of course if her care is just getting to be too much for you, it may be time to look into placing her in the appropriate facility. That way she can receive the 24/7 care she needs and you can get back to just being her loving husband.
I would also recommend that you try and find a local caregiver support group to meet with either in person or on Zoom. You would be amazed how helpful it is to be able to share with other men and women who are going through similar things as you, and who completely understand.
I know my support group saved my life while I was caring for my husband.
You're doing a great job with your wife and don't let anyone tell you differently. This will be by far the hardest job you will ever do....hands down.
I recommend you buy a book on Amazon called Understanding the Dementia Experience by Jennifer Ghent Fuller. A sensitive portrayal of the changing world of people with dementia due to Alzheimer's disease or other diseases, and those who care for them. Offers insights into emotional reactions and practical suggestions based on deep understanding of the way people with dementia view many situations. The author carefully explains the loss of various types of memory and other thinking processes. She describes how these losses affect the day-to-day life of people with dementia, their understanding of the world around them, and their personal situations. The many portrayals of real-life experiences clarify and deepen the explanations.
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. This audiobook is intentionally written in easily understood plain language.
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_1?crid=3P7EYSP265M0D&keywords=understanding+the+dementia+experience&qid=1661564364&sprefix=Understanding+the+dem%2Caps%2C260&sr=8-1
This is the link to the audio book, it's also available as a regular book.
Best of luck to you.
Instead of correcting her or making her understand something, I sometimes try to stall or distract her, for example if she thinks we are going somewhere instead of disagreeing I might just say "we are going tomorrow, not today." I also sometimes just agree with her or just say "o.k." or "I'm not sure"