LO Has Been Diagnosed 15 years

MimiDIL · August 1

Has anyone dealt with slow progression AD? My MIL was initially diagnosed in 2010. She was in early stage AD. 15 years later, she is at Stage 4. Her husband has been a faithful caregiver.

No one is complaining. We have had the opportunity to share many more holidays and special events than we ever thought we would.

Has anyone on this forum dealt with a progression that has been this long? Any words of wisdom?

SDianeL · August 1

most people with AD live between 3 and 11 years, however some live 20 years or more. Factors like age at diagnosis, overall health and the area of the brain affected by the disease. If her husband is elderly I would have a plan for her care if something happens to him. Can he care for her if she becomes bedridden and incontinent? Stages 6 & 7 will be very difficult as she requires more care. Cherish the time you have with her. Glad you were able to make many memories. 💜

MimiDIL · August 1

Well…the answers to plans in place is…complicated. As both my parents died from progressive conditions, this is not my husband’s or my first rodeo. However, I was the primary caregiver and decision maker for both. We’re not sure of and DPOA, medical releases, or contingency plans should something happen to my FIL.

Our concern is that the progression has been so slow and gradual, I’m sure living day-to-day makes it nearly impossible to see any decline to anyone who see her with that kind of regularity. My DH, daughter, or I go down weekly. We speak on the phone almost daily. It’s a bit easier to see the decline and the things my FIL does to compensate for my MIL. My FIL is quite active and very cognitively capable, so we feel comfortable right now that things are going as well as they can at this point in the disease.

Does anyone else spend an inordiytime thing “if this, then that…, or do you just take things as they come?

H1235 · August 2

I am a planner! Yes I am always trying to make sure everything is in place, just in case. When my mom was diagnosed the neurologist recommended we see a lawyer right away. Of course my dad had already passed. So I I would recommend a DPOA and that there is a secondary listed in case something were to unexpectedly happen to your FIL first. If your FIL passes and there is no secondary DPOA you would need guardianship, which is more work and money, probably at a very difficult time. It might also be good to have a DPOA for your FIL. You never know. If he ends up showing signs of dementia you would really be in a spot. Many with dementia don’t recognize their symptoms and are angry or resist to necessary changes. It’s my understanding that the later stages of dementia will go more quickly. But you just never know.

psg712 · August 4

Having a plan now will help you immensely when there's a change that requires quick action.

One of the best gifts my mother gave us was the DPOA that she had in place years before we needed it. At the time she signed the document, I perceived it as something we'd use after a sudden tragic accident or devastating medical event. Even as a nurse, I didn't think of the possibility of the long sad slog of dementia and having to use this document to make decisions over her unrealistic wishes and poor judgment.

harshedbuzz · August 4

@MimiDIL

Every dementia journey is different. Doctors and tools like the DBAT can offer averages and ranges of time at each stage, but it's still impossible to guess how things will progress for your LO.

Fifteen years is at the outer end of timelines. It could be that your MIL was diagnosed unusually early because her DH was very attentive and PCP was very proactive which has resulted in this unusual situation.

My aunt lived at least 16 years with mixed dementia. Her late husband clearly recognized changes but assumed he'd outlive her and didn't pursue a formal diagnosis or shar his concerns with family. She was diagnosed well into the middle stages and lived another 10 years progressing very slowly.

Her sister was diagnosed with VD and remained in the middle stages (4-ish) for about 18 months until she had a fall resulting in a hip and wrist fracture which fast-forwarded her into stage 7 with her passing about 4 months later. I saw this happen with a friend's mom as well. She went from OK to mid-stage dementia after a hip fracture that healed beautifully. She caught COVID, after refusing vaccines (she'd been a nurse and had volunteered with the Peace Corps in a vaccine program when she retired, so this stance was uncharacteristic of her), which moved her into stage 7. She died not long after.

My friend's mom was older (90) at the time of diagnosis and seemed to progress very rapidly. She also developed cancer which they opted not to treat based on her AMD, and she died within 3 years.

Dad likely had dementia for a decade before I could get mom to have him evaluated. He moved through the earlier stages slowly, but stages 5, 6 and 7 more quickly than most. He lived about 10 1/2 years with symptoms before a diagnosis and died 15 months after.

My advice would be to make sure her husband gets the respite and social interaction he needs and isn't neglecting his own health. My mom was so caught up in her depression and dad's care that she didn't attend to her own health which resulted in her being hospitalized twice in the months after he died. One of those events led to the loss of vision in one eye which has robbed her of a great deal of her independence. She's not living the stage 8 she deserved and, frankly, I'm not really either.

The other piece is to have a Plan B ready to execute on the fly. To that end, I toured both MCFs for dad to be placed in should mom be unable to care for him and SNFs in the event either one needs a stay after a hospital stay. I had preferred SNFs including one that would accept dad same-day (assuming an available bed— not usually a problem here) if mom went to the hospital or died until I could get him into one of the MCFs I'd picked.

HB

LO Has Been Diagnosed 15 years

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