HELP LINE: A reader shares experience with long-term care

RECENTLY, I SPENT a couple of weeks retelling the abbreviated story of my mother’s (and my) journey into and through long-term care.

The point of doing that was to illustrate how it all can/might/should work, particularly when that journey involves Medicaid.

Now, admittedly, our situation was rather simple, as they come: My mother was single, her finances weren’t complicated and I’m an only child, so a lot of minefields weren’t there for us.

Let’s hear from a reader, who was kind enough to allow me to share her email, anonymously, of course:

“I have enjoyed the last two articles of yours re: long-term care. My experience with the issue comes from my role as the spouse of the care recipient.

“He is 85 and I am 80 trying to deal with the various stages of care needed.

“Over the past two and a half years, we went from our own home to a retirement community to assisted living and finally to his being in a nursing home and my living in a vacation home (cabin) we have owned for many years.

“In our situation, the DPOA [durable power of attorney] was not always accepted even just for changing the mailing address on my husband’s pensions and definitely for access to one of his IRAs.

“It would be wise for any couple trying to arrange for the ‘what if’ situations to have the proper unique documents in place for any account, pension, etc. before the need arises.

“The hassles involved in all this can seem to be insurmountable and friends/family (if they exist) can only do so much.

“Ultimately the spouse has to deal with it alone along with the fact that the loved one is in someone else’s care and that you can only do so much (besides watching from the sidelines and trying to reconcile the person that is with the person that used to be).

“Fortunately, we have long-term health care insurance, but that covers slightly less than half of the total daily cost and has a limit on the total amount that will be paid.

“The remainder comes from our other assets (Social Security, two pensions and IRAs).

“Eventually that money will probably run out and Medicaid will come into view.

“In the meantime I, along with probably many others, deal with the situation the best I can.”

The lady makes an excellent and important point: This stuff is never as easy, simple or straightforward as people like me want to make it all sound.

There are unforeseen complications, bureaucratic idiosyncrasies (in both the public and private sectors) and the inevitable nuances that come with any individual’s health care/long-term care experience.

It falls on the spouse or the partner or the daughter or the son, to navigate it all, day-by-day, twist-by-turn, hoping for the best.

I will continue to encourage folks to get DPOA(s) in place, do wills, etc. ad infinitum, because I have seen those things reduce the levels of anxiety and frustration. But are they perfect? No.

And, if at all possible, try not to do all of this alone.

If there’s someone that you can “think out loud” to, whether that’s family, friend or someone like me, please do it.

Beware of “I heard this” or “I heard that,” because they are usually wrong, but a sane, reasonably intelligent person that you can trust, can make all the difference in the world.

For both of you.

And in the middle of all of that, without even knowing it, we become caregivers.

We don’t usually know it until after the fact.

We couldn’t tell you exactly when it happened — exactly when it changed — but it did. It does.

And, sometimes, we wonder: Who am I now?

If I’m not that spouse or partner or daughter or son, who am I now?

I think our reader said it best, above: “… watching from the sidelines and trying to reconcile the person that is with the person that used to be.”

For both of you.

It is a matter of love, and a very private matter.


Mark Harvey is director of Clallam/Jefferson Senior Information & Assistance, which operates through the Olympic Area Agency on Aging. He is also a member of the Community Advocates for Rural Elders partnership. He can be reached at 360-452-3221 (Port Angeles-Sequim), 360-385-2552 (Jefferson County) or 360-374-9496 (West End), or by emailing [email protected].

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