I am not sure if this is the right forum or not. We are a younger couple, that is, early 60s. My wife is had a deteriorating cognitive ability of executive function. She's still very cognizant of her condition, which brings me here. I am the only one that ever sees her, other than occasional doctor visits, short visits from our kids, and people at church she does not interact with much. This is the issue. She has a constant obsession about health disorders, eating brain smart foods, and doing word puzzles all day long.
This is our life. There is really no where I can go to be heard, and I am not a whiner! But I need to be heard and hear other stories, as I know it will make me a better companion. I have done a ton of work on things like setting up a reminder whiteboard, repeating answers to questions asked multiple times per day, and not rolling my eyes. I'm already tired, and we have potentially decades to live this out.
Can I bring this here, or are there recommendations?
https://www.alz.org/
It sounds as though you are doing extremely well for your wife. Good job. I think one other thing that is good is you are recognizing that it can impact the caregiver. I sort of feel like that aspect mostly goes unrecognized until you are actually living it. Now is a great time to build self-care routines.
For myself, I did an online search for an in-person support group and found one that met at a local hospital. I attended a couple times and it was good to share experiences. Other than that and this online forum, I mostly just try to make self-care a priority. I think "self care" may be different for everyone, but I think it is about what makes you feel calm and peaceful even if only for a few minutes each day. Whatever you can do, I think it all helps.
For me, my routine is daily walks outside in the fresh air, not over-eating, and taking a few minutes each day to just sit quietly and maybe read an article online that interests me or listen to a favorite song. I think it helps to replenish when I can re-focus my thoughts on other things even if only for a short while.
Are the two of you able to DISCUSS this?
Because particularly with younger people diagnosed, it is possible to discuss the diagnosis, the wishes of the person involved, and so on. My brother was diagnosed with probable early Lewy's Dementia by his symptoms. He WANTED to know his options and make his plans. It helped us BOTH enormously. He said he wasn't happy to know where this would lead if he couldn't die before it progressed significantly; but he WAS happy to know what he had, what stage was, what to expect, how to plan for the rest of his life, and HE DID SO. He also said he was glad to know why he saw the world so differently.
I don't know what you wife was like before this happened? Did she enjoy getting out in nature? Because there's no reason the two of you can't fish, camp, walk together. I am mostly a bit anti-social by nature, don't like a lot of other people about, don't need them. If you do, there is no reason you cannot participate in the things you always enjoyed on your own.
This is something for you both to talk about. If she cannot/will not, then you will still need your own game plan.
I wish you a whole lot of luck.
This is a journey you are not alone in. Many here have made the journey; many still are.
Come to us with specific questions, participate in answering others on the forum who write questions; it may help.
A GOOD medical team is invaluable. Go to NCCDP.org for help in finding a certified dementia practioner. This is the National Counsel of Certified Dementia Practioners.
You have received excellent responses so there is no need to repeat anything.
I just want to say that I can see from your posts how much you care about your wife. You’re wise to want to communicate with others about your situation.
It obvious that you want the best for your wife. Don’t neglect yourself during this process.
This forum is filled with wonderful people who are going through the same thing you are or have already gone through it and continue to help others.
Wishing you and your wife all the best.
OCD related issues are very common with the dementias. Have you spoken to her doctor about calming medications to help her stop obsessing about certain things? It's not a guarantee they will help, because thinking in loops is such a common phenomenon with executive brain dysfunction, but it's worth a try. Repetitive questions is the norm, and whiteboards don't always help if they don't LOOK at the whiteboards, or forget what they read 10 seconds later. There really aren't any "easy" answers to the complicated matter of brain issues.
Unless your wife has Alzheimer's disease, the life expectancy with vascular dementia for example, and many others, is only 5 years. AD can go on for 20 years.
I suggest you read this 33 page booklet to learn all about dementia. Lots of Do's and Don't tips for dealing with dementia sufferers are suggested in the booklet.
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
Teepa Snow has marvelous videos on YouTube about techniques to use with your loved one too.
But for YOU, the key is to get respite. Hire help in the home so you can get out and away from the repetition of the days and the frustration you're feeling. Nobody has the patience of a saint, so you're not alone. I worked in a memory care assisted living facility as a receptionist a few years ago. The admin would allow a few residents to come to the front desk as they wished. My patience expired with them after 20 minutes but I kept a smile on my face nonetheless. Had I lived with them.......
My mother lived in Memory Care Assisted Living for 3 years herself. I had about an hour's worth of time in me to visit with her as her vascular dementia progressed and she was accusing me of hiding her mother in the closet. It's tough, and you have my respect for caring for your wife at home.
Wishing you the best of luck with a difficult situation.
I am finding more & more, that the careGIVER really does need to embrace the concept of 'self-care'.
(OK it may sound a little hippy, it's not all bubble baths or walking barefoot in the park). I'm talking practical things like getting enough sleep, eating well, staying social, having your own interests.
Maintaining a social life can get hard when one partner cannot join in as well anymore, will not attend or no longer capable of staying home alone.
Many couples find that the one with brain changes clings to the other. Can even refuse care by all others, further isolating the caregiver.
Before you find yourself more isolated, are their interests, hobbies you'd like to persue?
I am so proud how my Dad has accepted non-family home help, has accepted he is one person - that a team is now needed.
As time goes on I hope you can build a good team too.
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