Are we just destined to endure a long slow decline?

TrumpetSwan

This sounds harsh, but is there such a thing as someone getting ill for 1-2 years and managing sufficiently, then just taking a sharp downward turn for a few weeks or months and shuffling off this mortal life?

By contrast, the last seven years my parents have just declined slowly and steadily while losing cognitive function, motor skills, reasoning, physical ability and ability to manage daily life.

As they continue on in the second category, I feel like I am following around behind them picking up the pieces of their broken life and patching it together so they get to the next post. This could continue on for several more years and their boat will keep drifting along as it just takes in more water.

They paid off their house and their cars 12 years ago. They set aside money. They have a Will and their end of life wishes documented. I do not think they ever thought in their late 80's that they would both still be alive and living with such decline. I am looking to place them in an ALF now, and realize in five years, they could outlive their savings. I know they never thought they would be in the condition that is now their reality. I just wonder if the elder years ever look better for anyone.

dancsfo

I think it all depends on the person, so it's hard to generalize. On the positive side (if you could use that term) your parents had a longer life compared to passing away after 1-2 years of illness. I'd be sad if they passed away even earlier, for example 5 years ago.

With my great grandmother, she was not ill, said she'll go to take a nap, and passed away in her sleep. But I don't think this happens often.

I am sorry to read that your parents' decline is protracted but I think this occurs often.

M1

Most of us aren't proactive enough about our inevitable decline. I like to think I will be, but—??? Sounds like you are doing a lot of balancing—if they are both in their late 80's, the chance of them surviving another five years and outliving their funds is not high, but it's not zero. Tough dilemma. It's a gamble, but if they need to move now, it probably makes sense to go ahead and do it and take that gamble.

dancsfo

I agree with @M1 . It's a gamble, similar to how much savings anyone needs for retirement. One can't spend down to the last dollar until your last days, so one needs to take a guess, with a bit of leeway. Using an ALF also provides some respite for the caregiver, so I think @TrumpetSwan may need to consider how much benefit there is from that.

Quilting brings calm

We can’t predict the future especially with people in their 80s. Yes, if they live long enough, they may die of dementia. Yes, that could be a slow decline. Or it could speed up. Or they could die of something else in the meantime.

Faced with this decision 4.5 years ago, I decided I had to do what was best for them in the present. They needed an AL at that time. So that’s what I got them into. Step-dad passed away a month ago. Mom (86 in May) has enough savings to stay in the AL ( in a smaller apartment) for a couple years. If she is still in an AL then, we will make up the difference between income and expenses. If she needs a greater level of care, we will apply for Medicaid.

FYI- there’s absolutely no way I could have taken care of the two of them for 4.5 years without the AL. It’s all I can do to take care of everyone as it is.

harshedbuzz

I suppose it happens.

Disease progression can be very individual. A person can live with ALZ for 10-15 years; those with EO tend to progress in less time. Those with VD also tend to progress toward the end in a slightly shorter period of time. People with mixed dementia also tend to progress through the stages more rapidly. Other medical conditions will also impact longevity.

Planning for care when you have no idea what that might look like or for how long it will be needed is one of the hardest parts of being a caregiver. With my parents, their needs were vastly different. Dad needed MC asap and mom could potentially need some sort of personal care because of vision issues osteoporosis. Dad had squandered a lot of their nest egg earlier in the disease and I really struggled with feeling like he'd used up his share of their funds. A CELA can help you with Medicaid planning to set them up for care with the safety net if they do outlive their assets.

That said, you mentioned paying off cars. Should they be driving?

HB

JoHOpl

How long did symptoms start before you really suspect dementia?

M1

Hi JoH and welcome to the forum. You may get more responses to your question if you start a new discussion. Going back to my earlier post-you may only get your answer in retrospect. I started suspecting it in 2013 or 13, was sure by 2014- but now would say she was having unrecognized trouble as early as 2007 or 2008.