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Hi, @rubies21 Welcome to Mayo Connect and this caregiving group. Nice to have you here! I am Scott and I was my wife's caregiver during her 14+ year war with brain cancer.

I'm sorry to read of your husband's recent diagnosis. That must be a challenge for him and for you!

Caregiving is indeed a long road, which comes with its own set of hills, bumps, mountains, valleys, and surprises along the way. While I know each of our patients, their medical conditions, and our caregiving journeys are unique, I offer a couple of things that helped me along the route.

One was that caregiving is much more of a marathon than a sprint, although many times we find ourselves running as fast as we can!

Another was for me to remember the old adage "one day at a time". Often I'd remind myself that if I could caregiver for one day, I could do it again for one day.

I love this group as it gave me a lot of hope knowing others had been through what I was experiencing and trying to manage.

Do you have any specific questions or areas of concern at this point?

Strength, Courage, & Peace

Kaiser offers a memory care program, and we have a follow up appointment in 6 months. We both liked the doctor, which always helps. It seems like he's losing abilities very quickly. Is that normal? When we lost power a couple months ago, he reset all the clocks. This time, he couldn't remember how to set them back an hour when we switched from daylight savings time.

Thank you for following up with me.

Robin

HOW DO I AEND THIS TO A FRIEND

Hi @rubies21, my husband was diagnosed with Alzheimer's Disease in 2019 after an MRI of his brain and neuropsychological testing, but I noticed changes in him in 2017. He's given up most responsibilities, driving, managing our finances, home maintenance. He still does the dishes, though, and I think it's good for him to do as many chores as he can while he still can. Even turning on the tv and switching channels is beyond him now. Somedays he remembers people, sometimes he doesn't. He wants to spend a lot of time in bed. He's had a couple of bad days, but most of the time he's on a pretty even keel. He broke his hip in January, and it was on his mind for many months, but now he's forgotten it. I try to keep him as active as possible, eating well, etc. He's resistant to exercise, but when I remind him why he should do it, so his bones get stronger, and don't break again, he'll comply. So I need to remind him all the time because he forgets. My father had "multiinfarct dementia" and his symptoms were different. Many of us caregivers have different and similar experiences with our loved ones because these diseases manifest themselves in so many different ways. Try to stay strong and take care of yourself. I wish you the best.

Hi Scott, I am Janet at 81 years young and my husband Will is 79 years young and has had vascular Dementia since 2014, after he had a heart valve replaced. He had 2 mini-strokes which started the Dementia.
He does amaze me with the things he can still do, like driving a car (a little too fast), playing Solitaire on his tablet, playing card games, puzzles, etc. and sometimes remembers things I forget. The other night he told me that he was quiet when we were visiting with another couple because he couldn’t remember things to talk about. But he keeps trying and I give him credit for trying.
We are beginning to have financial problems and I’m afraid we will run out of money. Who would you recommend to us who can help us with this situation? A social worker, or a lawyer (we can’t afford one), a geriatric social worker? We will eventually need to have Medicaid and we will need help applying for it. I’m trying to be level-headed about what should be done but my insides are shaking.
I would appreciate whatever advice you would give us.
Thank you Scott!

Good morning and hello, @rubies21 Nice to hear from you, Robin. Sorry to read of this new challenge/change for your husband. I think times of changes and non-change plateaus vary a lot!

While I know every patient and their reactions/responses to their dementia are different, I know with my wife and MIL, their changes often occurred "overnight" while some indeed did just that. My wife's neurooncologist told us that the brain tries to "rewire" its damaged synaptic connections during sleep and that was why we'd often see changes from nighttime to mornings. Things would change like food an aromas she previously loved, but suddenly disliked, and a myriad of other daily items. Time became a tough concept at one point, too.

For my wife, she lived by her routine -- day in and day out, day after day, so the annual changes of our clocks became a significant problem for her to understand as to if it would have any6 effect on her routine (times for meds, etc.). So I took to never mentioning the change to her and would do it all on the QT. Later, the differences between AM and PM and had to get a couple clocks that told military time so she wasn't calling people at 2:00 am thinking it was 2:00 pm.

I hope the sun is shining where you are today!

Strength, Courage, & Peace

Hi @oldnorm I am not sure if you are referring to a specific post or Mayo Connect in general so I'll give you two options for your friend.

If it is a specific post, you can cut and paste it and send it to them. Better yet, I like this second option:

Have them join Mayo Connect at the homepage https://connect.mayoclinic.org/ and they can join and follow this whole discussion group Caregivers: Dementia and/or the Caregivers group.

I hope this helps and if not, please let me know!

Strength, Courage, & Peace

Good morning, @janet7 I am sorry to read of your inner turmoil. It was one of the worst aspects of caregiving for me! If it wasn't one thing it was another.

I admire your husband for keeping at it! That was a tough one for my wife and in many cases human interactions were just too stressful for her to even try. Cheers to your husband's stamina!

I'm not a medical professional, nor am I a lawyer, but I can tell you what my wife and I did. I know it changes a lot by location, state, etc., but often your Area Agency on Aging (a national program)
https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx#:~:text=An%20Area%20Agency%20on%20Aging,of%20local%20AAAs%20may%20vary

can offer help with access to area programs for help. I know every state differs on Medicaid and more when it comes to support and medical assistance.

As far as our help, I spoke to a couple of our long-time neighbors who then offered me a referral to a trusted lawyer. The first one I couldn't afford, but he referred me to another local attorney he knew and she was a huge and affordable help to us.

I also called our local hospice organization and while my wife was not in hospice at that time, they also offered several local options for possible help for us. Again, I know these organizations can vary greatly, but I found an excellent one that was in our town at the time.

Let me know if you have any additional questions and stay in touch!

Strength, Courage, & Peace

Thank you for your help.