Is this how it goes?
I realized the other day that I have been dealing with my husband’s memory issues for at least 6 years now. Over the past year, his short-term memory issues are definitely more noticeable, and much more problematic. Still I am surprised at what he remembers and what he doesn’t.
I think I expected things to progress faster, though I am not sure what he actually has because no formal diagnosis has been made. We are, so far, stuck with a diagnosis of MCI (as of 2020).
My mom had vascular dementia. She went downhill quickly in 2 years. But, she was also 95. I can’t help but compare how it progressed with her and how it is going with my husband. I know whatever my husband has is not the same, though.
Is this how it goes — very gradual decline (almost unnoticeable) and then, all of a sudden, it gets worse? My mom seemed to have a steady decline, like stair steps. Sometimes I wish things would get worse so that I know what I am dealing with. But I also know that would create a whole host of other problems for both of us….
It is hard to put into words what I am asking here. I just seem to worry about what is going to happen and when…..
My husband was dx'ed with MCI in 2021- he had extensive neuropsych testing which showed problems with memory, concentration, problem solving and executive functioning.
My dh says "I've always been this way" so add lack of of insight.
The neurologist who reviewed the results said that Test #1 compares his with "the norm"-- basically his same age peer group. The second testing will show if there has been any deterioration of his skills. That testing is happening in August.
Is your husband's doctor following a similar protocol?
Right now, I am scheduling as much travel as I can. I find that getting dh out of the house and on cruises (he can get too lost on a cruise ship!) and making new memories is a good kind of stimulation for him. And I know that at some point, things will deteriorate and we won't be able to go.
I also found myself a wonderful clinical social worker who I meet with weekly over Zoom. She keeps me centered and looking forward as opposed to "fretting". And taking action about the stuff I can control.
(I was brought to think that cruises were just for rich people. And lots of other myths. It's actually a very affordable way to travel).
Travel doesn't have to be expensive but I get that if you are struggling to pay the heat bill, or just to eat, this seems like "pie in the sky".
Ditto if you have a loved one who is in a more advanced state of cognitive loss, incontinent or uncooperative.
It was very specific to the OP's feeling that she's dreading and waiting for the next decline. I did this too. But with help, decided to strike while the iron is hot and get up and go. Somewhere. Anywhere. Sometimes just a long drive in the car.
There is something about seeing new things that seems beneficial to my husband's brain right now.
My late husband also died of vascular dementia, and I was grateful that he didn't have to suffer long like a lot of folks do.
There are so many different kinds of dementias(hundreds)and most doctors still don't know much about any of them, so trying to get a proper diagnosis is often times very difficult.
It sounds like your husband perhaps has Alzheimer's which can go on for up to 20+ years. One of the gentlemen in my caregiver support groups wife is now in her 21st year of Alzheimer's. She's now under hospice care, but she just keeps hanging on despite being completely bedridden, and nonverbal.
The best thing you can do for yourself at this point is to educate yourself as much as possible on the disease of dementia, as it will help you better understand the changes that are to come. The book The 36 Hour Day is a great resource, along with books by Teepa Snow(a dementia expert)and also her videos on YouTube.
Also try and find a local caregiver support group, as that will be more helpful than anything. Mine saved my life while I was caring for my late husband at home.
I wish you the very best as you travel this heartbreaking journey with your husband.
One of the reasons I like cruising is that if DH doesn't want to get off the boat to come with me on an activity, he doesn't. He stays in the cabin, reads, listens to music, plays his guitar, wanders around the boat, occasionally striking up conversations with strangers.
I get to go ashore and wander around a new city or port, or go on an excursion. Not too much togetherness, you can see.
This is a good question to pass by his doc. There's not a lot to be done but plan so well as you are able for all contingencies. I sure wish you good luck, and hope things continue slow slow slow.