HELP LINE: Have a plan in place just in case the nursing home becomes your home

A document that lists things such as food preferences would help your comfort level just in case you end up in the nursing home.

LAST WEEK, I covered a topic that I’d also written about at the end of this past February on “The Promise.”

If you saved that from last week, good for you. If not, use your imagination and tag along anyway.

What came right after that was an exchange with an email buddy, Sidney Cays, that went like this:

Sidney: Right on — we’ve all known those who do exactly that, and we know their caregivers who are now sentenced to that promise.

‘My responsibility’

One man in our family said, “She’s my wife and my responsibility” and would not allow even her children to help him in any way with his completely helpless wife.

He took care of her for seven years and did outlive her by one month, when he then died (probably) in great relief.

But there are those of us who have thought of this and face the fact that we might well end up in (“doom” music) the nursing home.

I decided to see what I could do now to help me then if (and it’s perfectly possible) I should end up there, whether I like it or not.

My kids would have no clue about my choices if I couldn’t talk or respond: Do I want the bed by the window or by the hallway (if there is a choice)? Is there anything I can’t eat? And so on.

I questioned one daughter, and she chose the window (I’m a rabid outdoor person) and said no to the foods question. Both wrong.

I want to be by the hallway where I can see as many people as possible if bedridden. And I do not drink milk only by choice, not because I am lactose-intolerant or don’t like it.

I think a lot of our kids wouldn’t know facts like these and other personal wishes that might ease our stay.

So how about suggesting we make a list to be stored with our wills, etc., providing nursing home guidance for our kids or caregivers?

Mark: That’s an interesting idea.

Most folks are so freaked out about the idea of getting within two blocks of a nursing home that I doubt that they’d read it.

Sidney: But a number of them must have spent time there visiting older relatives and friends as I have and come to realize it’s not really at all like the standard (horrible) picture that comes to mind …

Mark: You write the column and send it to me.

Sidney: OK, here’s a column, and I should tell you: I have neither dogs nor goat …

Sidney’s column

And here it is, with no edits from me:

“So, we’ve written our wills, done up our medical wills, appointed an executor and are basking in the afterglow of a job well done.

“Everything has been taken care of: The kids are happy and we’re feeling good at not having to think about any of this any longer.

“But are we really done?

“Although we know we’re staying in our homes for the duration, what if, maybe sometime — just maybe — we might have to spend some time in a therapy setting, or (horrors) a nursing home?

“Could happen, you know — a stroke, broken hip — something that would jerk us off our planned track.

“Maybe only temporary. Maybe for good. But if that did happen, are there any choices you’d want to make about living in those alternate homes for however long?

“Sissy had a stroke. She lived in her own home, as she always had and as she always intended to. But one day, her neighbor saw her lying in her backyard. She was incoherent and couldn’t tell June what was wrong.

“Hours later, Amber and Bennie, Sissy’s daughters, heard from the ER doctor that their mother had indeed had a stroke. ‘Significant,’ he said, ‘Right side paralyzed, can’t talk. But it’ll be awhile before we know just how serious the lasting effects will be. As soon as she’s in stable condition, we’ll move her over to the nursing home and see where we go from there.’

In the nursing home

“And so it was, that two weeks later, Sissy found herself in the local nursing home.

“She couldn’t understand words any more than she could speak them, but she did know she was in a place where she had never believed she would ever be.

“Her daughters worked with the admitting team and gave Sissy everything they thought she would want: a bed by the window, a curtain around her bed to give her privacy from the other patients and a TV.

“They said she needed her glasses only for reading. They said they thought she was allergic to glutens but loved any other kind of food.

“Because her medical wills gave no details, the intake team relied on the daughters for these personal preferences.

“None of which were what she wanted or needed.

She cried

“Every time a nurse pulled the curtain closed, shutting her in alone, she cried, suspended again from all human contact.

“Although she grasped the gist of what had happened, communication and coherent thought were gone.

“Even that continuous self-conversation we all hold every minute we’re awake was gone because we think mostly in words, and Sissy had lost her words.

“She cried when they fed her meals she detested. She could not understand anything anyone said and could only make noises that meant nothing.

“She cried when they changed her diaper — a diaper, because she couldn’t ask for a bedpan.

“Sissy was a sad example of what an extra information page might have helped prevent.

‘Things I prefer’

“The page titled ‘Things I prefer in case of …’

“And her daughters were hard-pressed to cover sundry expenses because they didn’t know their mother’s PIN number for her credit card, and neither were on her account.”

So, your assignment is to hang onto this column because next week, you’ll get the rest.

________

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 harvemb@dshs.wa.gov.

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