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Someone recently commented to a question I posted previously, about second-guessing ourselves whether we did everything we possibly could have to take care of a loved one in crisis… She so significantly said "it's not like I had practice" regarding how helpless we all are when suddenly we’re responsible for someone who is even more helpless because we’re all they have to count on.. I wish there was at least some sort of manual - guidelines - book? – to help people know how things work, what to look for, do, feel. It isn't right or fair that the story is the same - OVER AND OVER - of struggle, panic, grief, despair, frustration, exhaustion, bad decisions - for everyone who has to deal with a horrible situation that hits us without warning! Gee, our loved one is devastatingly hurt, and we are expected to instantly know all the in's and out's of what to do! Surgery or not? Nursing home/rehab/skilled nursing/assisted living/adult foster home... What do all of these mean, entail, and how can "we" figure out what (or where) is best when we have probably 2, 3, 4 days to decide and act? (Existing organizations to call for “help” were not reliable in my case…) I keep wracking my brain trying to figure out some way my experiences (and others here with similar or "new" situations) can be morphed into some positive form for others who follow... There just has to be a solution? We shouldn't have to re-invent the same story over and over!


Maybe someone wiser than I has some positive ideas - a potential solution? Maybe our pain could form a truly helpful guide for the caregivers and loved ones in the future?

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I also have noticed that, for so many of the questions and cries for help on this forum "the story is the same - OVER AND OVER - of struggle, panic, grief, despair, frustration, exhaustion, bad decisions..." And I attribute that to people not wanting to read.

There are so many resources available to us in this country. Yet, too many Americans find themselves unprepared for many of life's milestones and surprises. Did I expect my MIL to get a rare neurodegenerative illness that would completely change our family? No, but I knew enough to know that I didn't know and so I went in search of information. My first stop was my local library.

My mother, an immigrant from a war-torn country, taught me that in this country people never expect bad things to happen whereas people from other countries only expect bad things to happen and they're never disappointed. I think I internalized that lesson as hope for the best and prepare for the worst. My parents, both immigrants, were voracious readers. Reading was their habit and I will be forever grateful to them for giving me a love for reading. Reading prepared me for navigating and enjoying my life.

That all said, somewhere on this forum we ought to compile a card catalog of books for caregivers. My contribution would be Roz Chast's "Can't We Talk About Something More Pleasant?"
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There are tons of books and websites available that offer all kinds of advice and resources. (Try typing 'caregiving' into an Amazon search. Or 'caregiver.') Yet, people just don't know about caregiving for their parents. They also seem not to know how to find this information out.

I didn't know caregiving skills either when I was starting out. I didn't even know to look, and I didn't know where to look.

I'm curious, what do you think could truly help?
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ImageIMP that's a really great idea! Let me think about it a bit and see if I can add something to the conversation. You're right, we do seem to be reinventing the wheel over and over and over.
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