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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?

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Welcome to the forum, Eddie!

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.
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Welcome, EddieK. First, yes, this is the right forum. I personally have found this forum to be one of the most supportive "places" I go. It is always here 24/7. I believe you will find lively posts with thoughtful responses. Please know we hear you now, and we will continue to hear you any time you want to post.

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.
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I am another to agree that *YOU matter too*. It can be hard for friends to discuss so keep reaching out here if it helps. Look for local support groups in your area too.

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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Eddie , there is a good class though the Alzheimers association in Brewster, MA. On Cape Cod with Teepa Snow I Believe it is December 8 , 2023 . I Take Courses with Joan Halifax at Upaya zen center , there is One tomorrow - free or By Donation - they are for Caregivers - she is teaching with Frank Tomorrow . Also I do a Meditation class with Thomas Victor Carroll on Quik silver on Instgram - he teaches 3 times a week and its short Meditation from Sydney , Australia and that Is free . I find these things Healing for Myself and recharges Me to Know I am Not alone .
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EddieK I am 65, just retired, and joined an exercise group at my local senior center. I notice alot of the ladies husbands come along, and visit and have coffee while we do our thing, everyone is very friendly. Just a thought? She could visit with the ladies and you with the husbands. Lots of people are there who are not exercising so you don;t have to join that,, plus there are other things to do,, they play cards, or just chat! And if she is into her health she may enjoy a class,, we are older and it's geared to us. One guy is a wheelchair, and none of us are Jane Fonda!
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Have you thought about contacting your local Alzheimer's Association for more information and to see if they have local or online support groups that might help you?
https://www.alz.org/
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I would go to community acupuncture to get support and meditate . I also Had social workers, a support group for caregivers , Therapist - did things for Myself Like massage once a week , ride My Bike , go for a swim , go out to eat . it is called Self Care - very Important . So Hit the gym , make some friends . Go to the Pub for a beer. Hire someone to sit with her or a companion . Otherwise you will end up sacrificing your Life . You could try some holistic therapies for her - acupuncture, shiatsu Massage , Gamma Light ray therapy , Lions Mane Mushroom Gummies. There are a Lot of Black Friday sales going on . One company I love happy Hemp Buddha has samples and 50 % Off sale . Make sure to get out and eat with her and go for Long walks and take vacations . have a hobby Like gardening .
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EddieK Nov 25, 2023
My friends are awesome. I just feel like I don't want to dominate the conversation with this topic all the time, even though they are very supportive. They definitely have my back. Some guys keep bringing up stories about their grandmas, arrgh. I know they're just trying to help.
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Is your wife diagnosed with early Alzheimer's, Eddie?
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.
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EddieK Nov 25, 2023
Actual diagnosis is in progress, but the initial four hour test showed profound recall gaps in new memory. Follow up has been slow. She does like hiking so I will get outside more with her. Thanks.
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You've definitely come to the right place Eddie, welcome. You'll be heard here, loud and clear. Remember this: You Matter Too.

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.
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EddieK Nov 25, 2023
Thanks so much. We're just starting to navigate through neurology, psychiatry, etc. Difficult to navigate and appointments are inconclusive and too far apart. We are often at Urgent care for various concerns like chest pains, bladder and urethra issues, falls, noises in the head, etc. It's difficult to know when to call whom about what. She's actually pretty healthy. I'm adjusting! I appreciate the references, thanks very much.
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Welcome! Keep posting here it will help!
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Welcome, EddieK. This is a good place to hear and be heard. I'm very sorry about your situation and look forward to learning more.
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