progression question

sharingpeace45 · October 26

Hi all-

I have a question for those of you that have spouses who have advanced from early/mid to mid/end stages and this may sound dumb. Can you share how that change happened? Currently, my DH is in early/mid where he is still driving and technically still working even though the walls are closing in and he will be let go soon I feel sure. He is simply living "instance to instance" if you will…ie. I had a significant surgical procedure within the last 6 months that he has no memory of, he will take his medication and then take it again 2 hours later because he doesn't remember, we are re-watching tons of shows that he has no memory of watching, can't for the life of him remember his wallet, phone, etc or reserve a hotel,airline ticket, concert ticket on the right date. The usual I would say. But does anyone know how those instances moved to more of a "lights out" situation, which is what I suspect will eventually happen based on my research. Do you think it was like an illness that they just never recovered from (I have noticed he is WAY more susceptible to colds and flus these day and it takes him weeks to recover and he is quite altered when they happen), was it a stroke-type situation where their cognitive function just never came back, or was it just like maybe the instances just all started blurring into one big "instance" if that makes sense? Just trying to get an idea of what to expect.

Thanks,

Tired and Alone

cdgbdr · October 26

In my opinion, it's more when it hits you that it's progressing and getting unmanageable with what previously worked. For me, when the police called because he was lost driving, that helped cement it. Then we spent a week together on a trip and I could see the changes clearly. It sounds like there is some painful change coming. He needs help with his medication and needs to stop driving. The work will also end. Please ask anything you need. Someone will have good advice and information.

jgreen · October 26

Hi Sharing,

I agree with cdgbdr - you will have a sense when this happens. I first noticed my DH calling our internet provider about his bank account! Then started seeing that he hadn’t changed out of his pajamas when I got home from work in the afternoon. That’s when I tendered my resignation to stay home with DH. Then realized all the other changes that had been so subtle.

I imagine I will have a keener sense when he begins to slip into the next stage. Dr. Tam Cummings has some good documents on her website that detail the observable behaviors in each of the stages of dementia. Scary and sad to read, yet I appreciate knowing what is coming rather than being surprised.

Dementia Behavioral Assessment.pdf

I hope this helps you. God bless.

Lee39 · October 26

My husband is now in the final stage, and his progress has been gradual decline over eight years. I suspected a problem in January of 2018 because of repetitive questions, memory issues and getting lost driving to familiar places; in that year too he asked that I take over finances and driving (I was very lucky in that; many here have had problems taking away the keys!). By 2020 he was putting on shorts in January and multiple sweaters in July— the defining symptom of stage 5. In his case he followed the classic sequence of symptoms exactly. The only time I noted a sharp decline was when he was hospitalized for COVID last year, shortly after which he became wheelchair bound. The most helpful aid for me by far in assessing his stage was the FAST tool. Hope these comments are useful; I wasn't quite sure what you were asking. Good luck to you in dealing with this miserable situation; feel free to ask specific questions if you have them.

annie51 · October 26

My DH is well into stage 6. I’ve never noticed a sharp decline either, mostly gradual. His repertoire of things he could do without help became smaller and smaller over a few years. The things he enjoyed doing also changed over the years, whether it was because he didn’t feel comfortable doing them or just lost interest. As others have said, you get a sense of it after a while.

Important note though…it sounds like he does need to stop driving, as hard as that is. If he has a diagnosis in his record and something happens, you may end up being sued. Make it a doctor’s decision somehow so it’s not blamed on you.

Use this forum for advice, validation of your feelings, or just letting off steam. We understand what you’re going through.

Cranddi · October 26

Sorry, this is not an answer to your question, but two things in your post really jumped out at me. First, is the fact that he is still driving. Your description of his cognitive abilities indicates that he should stop immediately. If he has an official diagnosis, his insurance may already be void. Being able to drive a car doesn't mean he can do so safely. Reaction time is generally significantly impaired based on DH's behaviors. His safety and the safety of others is at risk. Imagine what would happen if DH was interrogated after an accident. He probably couldn't defend himself, even if he wasn't at fault. You could lose everything. The second issue is working. I don't have experience in this area, but others may be able to help here. If he's too young to retire, he may qualify for Social Security disability. Retiring or disability are generally preferred to waiting until he's fired. He may end up losing benefits.

tonyac2 · October 27

My DH was diagnosed with mild cognitive decline in 2023 - but there were signs years before that. He suffered a stroke in July of last year. Since then he never regained the use of his left hand, has been wheelchair bound, and has full blown dementia. I use that stroke as a marker for when dementia took center stage. I believe he’s in stage six. Prior to the stroke driving was an issue. I didn’t want to have him feel demoralized by taking the keys away, so I went on Amazon and bought an exact copy of the fob his car used. Swapped it out for the real one, and would say the fob battery must be dead if he tried using it. I think it was less anxiety for him when he opened the drawer where he kept his keys and saw them in there. Then it got to the place where we are now. Driving isn’t a thing for him. I actually sold his car (since I couldn’t get him in it) and used the money towards buying a wheelchair van. I’m learning to stay flexible and adapt to the changes that come our way. The one thing I can’t adapt to is missing my dear husband.

SDianeL · October 27

Welcome. I think based on the behaviors you listed your husband is farther along in progression than you may think. He should no longer be driving. Get the keys from him. Disable the car if you must. He should also stop working and apply for SSDI. If not he could be fired. If he has short term and long term disability at work he should apply for that as well. It takes awhile to be approved for SSDI. Meet with an Elder care attorney immediately. You will need DPOA and other documents. Don’t wait. Every person with dementia progresses at a different pace depending on many factors one of which is the area of the brain affected by the disease. Many PWDs live up to 20 years. Some progress much more rapidly as my DH did. There is no way to predict. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Teepa Snow. Come back often for info and support.

M5M · October 27

What SDianeL and Crandi said…." He should also stop working and apply for SSDI. If not he could be fired. If he has short term and long term disability at work he should apply for that as well. It takes awhile to be approved for SSDI. Meet with an Elder care attorney immediately. You will need DPOA and other documents. Don’t wait. …"

This is a statement for your immediate action…you may be able to preserve some benefits like insurance or a pension, if he can "retire" from the workforce appropriately as opposed to being fired. You need to talk to a disability or elder law attorney today! Do not start with the human resource or other source at his work.

And, please come back and let us know your progress, we will be thinking of you and your situation!

CindyBum · October 27

I saw early signs - temporarily lost driving in her old neighborhood, etc. Then one night she suddenly couldn’t finish a sentence. Thought she’d had a stroke, but nope. Early start of aphasia in Stage 4. From then on I’ve sensed that a new stage is coming before it hits and I look at the DBAT again to see if it really could be her next stage. She’s now late Stage 5, early Stage 6. It’s felt like a quick pace from dementia diagnosis in March 2024, but everyone progresses differently.

Goodlife2025 · 3:02AM

Judging timing and the anticipated pace or progression of this disease is one of the things I hate most. My DW age 49 is full stage 5 and yes getting fired was the unfortunate first alert I could not ignore. First signs anything was amiss happened in 2015 when she was 39 and struggled to learn a new spreadsheet program at work. Changed jobs and worked from home for several years before I received a call one morning in 2021 that she had been fired. Suddenly all those small concerning behaviors could no longer be ignored and we spent the next 2.5 years getting the diagnoses. Today I realize that there is no telling how long this will last. EOAD at age 49 and stage 5 sounds like our journey will be shorter than others but realizing has already been 10 years is just sad….. and while it is likely she will not make it to age 70 (I cry at the thought of still caregiving that many years from now.); in the end I will not feel as though the diagnosis of very early onset dementia will also mean a shorter journey.

Iris L. · 3:58AM

Read about "Compassionate Allowance" this can fast track application for SSDI with a diagnosis of dementia.

Iris

progression question

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