PSA: think about options now

not after you get too old

Today’s ever-so-cheery news that dementia cases will double in this country over the next thirty-five years is not how I like starting the week but I long ago recognized that ignoring health issues is pretty stupid. If you don’t like the outcome, being under-informed doesn’t help any. Fairy dust for some reason rarely appears to solve things we don’t like.

The implications of the increase to a new normal of a million initial dementia diagnoses annually will result from people being aged. As I understand it, dementia’s greatest correlation is with being older (say in your 70s or above). There is no guarantee any of us will get it and much research funding is pouring into the search for curing it, but we have no guarantees.

As I have noted, my mother died of dementia which makes it all the more personal. It was agonizing to watch her world shrink, to listen to conversations about people she thought were ten miles away rather than decades separated from her life. In short, her world became ever smaller as her aperture on reality closed so quickly.

What distresses me more if the question of where these people will get health and day-to-day care? What care? Do we really talk about that?

My father, a child of the Depression, had bought into something I never realized existed before he died in the late 1980s: long term health insurance. He assessed his own health as tenuous so she might outlive him. Since they were both heavy smokers, no way anyone knew that for sure but he had bought into a long term care contract.

I imagine it was expensive for them but he was a calm, methodical individual who prepared financially because he had genuinely so little as a child. She kept up the premiums until she moved first to a retirement facility upon selling their home, then almost immediately in with me.

Remember I said I was unaware of long-term insurance as a concept in the 1980s. By the time she moved in with me twenty years later, I actually knew about that insurance. But was so focused on my own finances, my kids’ preparation for impending college, and just life that I never pursued it with her to ask her status. I guess I figured it would all work out.

Of course, as almost invariably true—remember this part, folks, because it’s the most relevant piece—she began ever-so-gradually, creepingly but inexorably evidencing signs of dementia, she was forgetting things.

When we had to address the reality of needing care, and my brother deserves all the credit for doing the hard stuff altogether, we faced the harsh reality that between selling her home, then the subsequent moves, her premiums lapsed because she forgot to pay them. At least two decades of payments into this insurance went poof! Gone with the wind. I can rarely remember such a shocking conversation with my brother, not so much because we had nothing to work with as we sought a facility which was damning enough, but because of the investment my dad so carefully contributed to would provide no benefit after at least twenty years’ payments. Gone. Nada.

Confront the realities NOW as you age. I am not shilling for long term care insurance and am profoundly, deeply aware hundreds of millions of Americans cannot afford it. It’s expensive but, if you can afford it, it’s a choice you will want to consider, one allowing you perhaps to stay in your own home once the aging process (whether dementia or peripheral neuropathy or something else relevant to those of us lucky enough to reach advance ages strikes) progresses. If you can afford it, get it now. The price as demand escalates will only rise.

But think about your overall lifestyle preferences as well. Do you want to be in your own home? If so, is it appropriate for someone with mobility challenges? Can you change out that deep pile carpet where needing a walker might be pretty tough? Do you think you might want to reconsider that third floor walk up as you buy a place after retirement? What sort of transportation will be available should you decide to live in a distant suburb during snow-plaguing winters? Do you have even the basics of grab bars in your shower? The list is unending as we tend to just live rather than think about how we live.

If you want to move in one of those super places offering graduated levels of care, recognize not only the initial investments but the fees involved. Those fees make Homeowners’ Associations look pretty reasonable. If you can think you can afford living in these facilities, those monthly costs climb well into the four digit range. They may provide companionship opportunities, meals, activities, and the like, all of which make life easier but how many of us have the resources for those levels of spending?

It’s easy to say save, but if you’re not in your early twenties or thirties, then saving at a rapid enough pace makes the accumulation of sufficient resources bloody tough. I remember the look on my daughter’s face when I mentioned long term care to her in some conversation about 18 months ago. As someone still early in her career, the sag of her shoulders signalled “well, expletive. Something else they tell me I really need save for”. She turns out to be unbelievably good with her salary so she is saving for the long term variables but so few of her age co-host are doing so aggressively enough.

A huge issue is how long would you want to be a burden for your loved ones to take care of day in and day out? That is especially painful as no one wants to burden a child, particularly with adult children’s lives of their own to consider, but many of us somehow just assume our kids will somehow be the caregiver. How about a spouse? Is that person’s health going to allow her or him to be that caregiver for the long term?

None of these things are too small or too early to consider. Dementia is only a single horrible disease but the process of aging makes everything more challenging every year. It’s a privilege to live to 98 but it requires adjustments. Not all of the considerations are financial, though money does seem to drive options.

And none of what I am raising even depends on the reality that substantial cuts to Social Security and Medicare could make this even harder. Long term care, particularly but not exclusively by any stretch, may require someone with you all of the time yet it is not covered by Medicare at this point. With likely cuts to federal programs ahead, it’s pretty infeasible most of those additional new annual cases diagnosed by 2060 will be covered, either. And dementia probably will not be the leading cause of death in this country then as it is not now. We are still driven to death by heart disease, despite advances in knowing what lifestyle medications could help.

My point today is to think now about what your options may be when you cannot avoid certain choices. None of us relish being powerless yet putting our heads in the sand on the panoply of issues we do have power over seems daft. Because actions do have consequences, we can consider many options, then adjust some of our circumstances to reach a better outcome than ignoring everything until paralysis or our children become the ones doing the deciding for us. Perhaps merely revising our expectations about what we think about older years will be a start with important ramifications for each of us.

In the end, most of us may face tough medical and living choices, though we often hope not to burden others. Perhaps it’s worth an hour over coffee thinking for yourself, then having a meal with your family to start a conversation on these questions. You may not be interested in addressing the issues but the unwelcome issues are undoubtedly interested in visiting you as you age.

Thank you for tolerating a public service announcement as I heard yet again today of a friend desperately angry that she is facing these conditions. Her husband is dealing with it but talks of her frustration that she cannot go home because she needs fuller care than he can provide for her deteriorating condition. And they are still scrambling to adjust to a facility that can meet the needs for this individual. Obviously none of us can predict precisely what our circumstances will be but we can lay out some parameters for what we see as important considerations.

I welcome your experiences, thoughts, and concerns. Life can be so cruel as well as so wonderful.

Thank you for your time today or any day. Thank you especially as subscribers to the column.

Be well and be safe. FIN

Pam Belluck, “Dementia Cases in the U.S. Will Surge in the Coming Decades, Researchers Say”, NewYorkTimes.com, 13 January 2025, retrieved at https://www.nytimes.com/2025/01/13/health/dementia-cases-us.html