Author Topic: On Caregiving  (Read 65439 times)

Offline Front-Ranger

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Re: On Caregiving
« Reply #340 on: January 09, 2019, 12:02:15 pm »
There is an article out today on the construction of small auxiliary dwelling units for people's aging parents. In all of these articles, I've never seen mention of the investment of time it takes to have an aging parent living with you.

https://www.nextavenue.org/accessory-dwelling-unit-help-aging-parent/?hide_newsletter=true&utm_source=Next+Avenue+Email+Newsletter&utm_campaign=702e0b9a80-01.08.2019_Tuesday_Newsletter&utm_medium=email&utm_term=0_056a405b5a-702e0b9a80-165235473&mc_cid=702e0b9a80&mc_eid=a194ac8bb9

I think it's very important that people's eyes are opened to the large amount of time a parent will need. There are the big stuff--medical appointments, monitoring pill taking etc.--and the small stuff--fixing the electronics they've broken, entertaining them, etc. Once a parent is living with or near you, they will expect you to be their chauffeur. The middle of the night stuff and the long hours in a waiting room. On top of that, children, siblings and partners are very adept at fading away when the responsibility of caregiving looms. Out of sight, out of mind.  :'(
May 2019 be better for us all.

Offline serious crayons

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Re: On Caregiving
« Reply #341 on: January 10, 2019, 09:53:28 am »
Actually there are tons of articles on that topic if you look them up via "caregiving" or "family caregiving" (as opposed to the paid professional kind). It's a big issue in journalism about aging. I'm sure NextAvenue has many and I've written a few myself. Caregivers sacrifice time, financial security and emotional well-being.

In one story I wrote, a woman lived with her mother, who had dementia. Because the mother had lived in a small rural town, the woman felt she couldn't move the mother into the city where she herself lived and worked, so they moved to the outskirts of the metro area. The woman had to quit her job in favor of one where she could work remotely but for half the pay, because her mother couldn't be left alone. But if she put her mother in long-term care so she could get a better job, the mother would have to spend down all of her money to qualify for Medicaid. And because they were living in a home with a reverse mortgage, the woman would have been left homeless (and possibly car-less, because her mother owned the car).

Another woman I talked to for that story called me from a homeless shelter. She had quit her job at a convenience store to care for her mother, and when the mother died the woman got evicted.




Offline Front-Ranger

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Re: On Caregiving
« Reply #342 on: January 10, 2019, 02:47:29 pm »
Actually there are tons of articles on that topic if you look them up via "caregiving" or "family caregiving" (as opposed to the paid professional kind). It's a big issue in journalism about aging. I'm sure NextAvenue has many and I've written a few myself. Caregivers sacrifice time, financial security and emotional well-being.
Are there enough articles that describe the sacrifice in time and well-being? The examples you cite are primarily economic. Caregiving is so intense and so expensive, that most people would choose "family caregiving" over institutional care. But isn't "family caregiving" misnamed for the most part? The vast majority falls to the one person who is willing to take on the job. Others may mean well, but they think their role extends to a 10-minute phone call on Sunday afternoons.

In one story I wrote, a woman lived with her mother, who had dementia. Because the mother had lived in a small rural town, the woman felt she couldn't move the mother into the city where she herself lived and worked, so they moved to the outskirts of the metro area. The woman had to quit her job in favor of one where she could work remotely but for half the pay, because her mother couldn't be left alone. But if she put her mother in long-term care so she could get a better job, the mother would have to spend down all of her money to qualify for Medicaid. And because they were living in a home with a reverse mortgage, the woman would have been left homeless (and possibly car-less, because her mother owned the car).
Maybe some agency or organization is needed to counsel people who are facing these decisions. Here, it seems to me that the answer would have been to sell the house, move the mother into long-term care in the city near where the daughter was living/working, have the mother transfer ownership of the car to the daughter, spend down her money on the care facility and buying other approved items such as burial services, and apply for Medicaid. Then, the daughter would not have to destroy her life and the mother could get the professional, 24/7 care that she needed.

Another woman I talked to for that story called me from a homeless shelter. She had quit her job at a convenience store to care for her mother, and when the mother died the woman got evicted.
Convenience stores always need personnel. . .am I dense or am I right in thinking the daughter could get another job after the mother's death?

The idea of trying to provide in-home care without family or home health aide support, while "working remotely" is a recipe for disaster. It may make sense economically, but there are other considerations than economics. Too many people, most of them women, are being sacrificed needlessly. In many respects, caring for an ailing parent is more difficult than caring for a newborn.

I wonder if it would be helpful for me or someone to write a play-by-play article on life with your aging parent. 6 am: the parent falls out of bed. Etc.



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Offline serious crayons

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Re: On Caregiving
« Reply #343 on: January 11, 2019, 10:54:29 am »
Are there enough articles that describe the sacrifice in time and well-being?

Yes. I've written some, a colleague who also writes about caregiving has written some -- and that's just at one medium-size newspaper. One source I've often turned to in caregiving stories is a University of Minnesota department head who puts out a newsletter for caregivers. The AARP has a lot of material. I'm sure NextAvenue has a bunch. There are whole websites about it. If you google it I'm sure you'll find plenty. This could get you started: https://www.google.com/search?q=%22family+caregiving%22&rlz=1C1EOIJ_enUS750US778&oq=%22family+caregiving%22&aqs=chrome..69i57j69i65j0l4.8331j0j7&sourceid=chrome&ie=UTF-8

I can't remember where now, but recently in a conversation we were noting that some caregivers don't even like the parent they're caring for, but do it anyway. Extremely stressful, either way.

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The examples you cite are primarily economic. Caregiving is so intense and so expensive, that most people would choose "family caregiving" over institutional care. But isn't "family caregiving" misnamed for the most part? The vast majority falls to the one person who is willing to take on the job. Others may mean well, but they think their role extends to a 10-minute phone call on Sunday afternoons.

Yes, that often happens. Of course, families vary quite a bit, so in some cases the siblings share. More women do caregiving and when men do caregiving for a parent it often involves paying for a service rather than performing one.

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Maybe some agency or organization is needed to counsel people who are facing these decisions.

Yes, there are a bunch. I of course didn't realize that when my mother was ailing.

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Here, it seems to me that the answer would have been to sell the house, move the mother into long-term care in the city near where the daughter was living/working, have the mother transfer ownership of the car to the daughter, spend down her money on the care facility and buying other approved items such as burial services, and apply for Medicaid. Then, the daughter would not have to destroy her life and the mother could get the professional, 24/7 care that she needed.

They couldn't sell the house because it was on a reverse mortgage. The car was in question because it wasn't clear whether Medicaid patients get to keep their cars (obviously someone knows the answer, but I didn't dig enough to find). Any gifts of money (and maybe cars?) a Medicaid receiver has given to their family members within the past 5 or 7 years (can't remember which, and it may vary by state) must be returned. So the car situation wasn't clear. The house situation was.

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Convenience stores always need personnel. . .am I dense or am I right in thinking the daughter could get another job after the mother's death?

She had little kids. I can't remember all the circumstances but daycare is extremely expensive (though I think poor people can get some help with it).

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I wonder if it would be helpful for me or someone to write a play-by-play article on life with your aging parent. 6 am: the parent falls out of bed. Etc.

Sure. There's always interest in that subject.



Offline Front-Ranger

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Re: On Caregiving
« Reply #344 on: January 14, 2019, 06:08:34 pm »
Actor Rob Lowe has written an article on caregivers in USA Today today:
https://www.usatoday.com/story/opinion/voices/2019/01/13/rob-lowe-caregivers-social-security-self-care-column/2539450002/?fbclid=IwAR28IaXK_yTLujwBqOemBtzyLrgN6Qge_JOJ-PWB6_xtlflwILoUfpIKXe8#

I started looking at what's been written on this subject and found that there are two articles that have appeared in multiple publications and I didn't find much else beyond that. Both of the articles could be improved by giving specific examples taken from life. For instance, I received a phone call in the middle of the night from mother one time just to chat. It turned out that she was suffering from Sundowners' Syndrome, but it took me a while to find that out.
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Offline serious crayons

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Re: On Caregiving
« Reply #345 on: January 14, 2019, 11:35:13 pm »
I started looking at what's been written on this subject and found that there are two articles that have appeared in multiple publications and I didn't find much else beyond that.

How are you looking them up? I just now typed "caregiving" into Google and got 115 million results. Many are websites about caregiving rather than articles published in major publications and some may be about paid caregivers but still, there's plenty of info on family caregivers. At least of the kind I've looked for when writing about it; far more than I had time to look at.

I googled my own byline with "caregiving" and got three stories -- one about the financial aspects, one about caregiving in general (with sidebars about specific families) and one about more men becoming caregivers. A colleague at the paper has also written a bunch of good stories because she did a year-long fellowship on the topic, which I'd be happy to PM you links to. There are also whole books, including one published by AARP that we got free copies of at one of the fellowships I attended. If you're interested, I could send you my copy if I didn't get rid of it in my downsizing frenzy.

But maybe you're looking for something more specific?

I haven't read the piece you linked yet, but I've heard that Rob Lowe is a good writer.


« Last Edit: January 15, 2019, 10:18:56 am by serious crayons »

Offline Front-Ranger

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Re: On Caregiving
« Reply #346 on: January 15, 2019, 11:20:46 am »
I filtered it more than just caregiving. I think I typed in "moving in with aging parent". But most of the results had to do with moving your aging parent into your home. The concern I have is that, sure, you can install grab bars, but what about the parent needing to grab onto you, both literally and figuratively? Maybe some people can easily adjust but I suspect that for most of us, it's a shock to go from an autonomous person able to "freely move about the cabin" to the claustrophobic feeling that if you step away from your parent for even just a minute they will totally collapse. I don't see this adequately covered.
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Offline serious crayons

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Re: On Caregiving
« Reply #347 on: January 16, 2019, 04:15:24 pm »
I filtered it more than just caregiving. I think I typed in "moving in with aging parent". But most of the results had to do with moving your aging parent into your home. The concern I have is that, sure, you can install grab bars, but what about the parent needing to grab onto you, both literally and figuratively? Maybe some people can easily adjust but I suspect that for most of us, it's a shock to go from an autonomous person able to "freely move about the cabin" to the claustrophobic feeling that if you step away from your parent for even just a minute they will totally collapse. I don't see this adequately covered.

Hmm. Well, I can see why you'd want to focus on something directly relevant to your situation, but filtering it that way not only cuts down on the results, it may cut out results you'd actually like to see that weren't worded quite that way. What if an article called it "living with elderly mother"?

Anyway, as someone who googles things for research all the livelong day, I would suggest starting slightly more broadly, like maybe caregiving and parent. That way, you eliminate people caring for children, spouses, more distant relatives, etc. If those aren't specific enough, maybe try adding "home." What I have found in researching caregiving online is that the official sources tend to paint a slightly rosier picture than reality. I was poking around AARP one day, which has all kinds of, if not outright cheerful at least straightforward and practical info on caregiving. Then I opened a message board and was shocked by all the intense messages from regular people who were exhausted, sad, angry, frustrated, exasperated, etc. People in some cases who sounded almost suicidal. Or maybe matri/patricidal.




Offline Front-Ranger

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Re: On Caregiving
« Reply #348 on: January 17, 2019, 10:56:52 pm »
Thanks for the searching tips. I was basically looking for articles having to do with the non-economic aspects of caregiving, which I feel are underemphasized.

It seems like you and I read the same AARP article, maybe! I strongly remember something about 3 years ago about caregiving, which painted a misguidedly rosy picture of it! And the comments were a backlash trying to give a more balanced view, but swung the pendulum a little farther to the negative side. I'm interested in presenting a more balanced viewpoint and telling women (since it's mostly women who are facing this) that it's all right if you don't give up your whole life for your aging parent.

An example from today about how people get sucked in. I took R. for his first treatment for prostate cancer. The trip to the treatment center went smoothly and the wait was not intolerable. We were only at the doctor's office for about 2 hours, and I had reading material and a salad to eat that I'd made myself. I was heartened to see R. emerge from the procedure walking normally, all dressed, and not visibly in pain. (Of course, the valium and oxycodone he had received helped this.) We left and were headed to his home but R. announced that he was hungry. . . about 12 times he announced this. I said, "Okay, we can stop somewhere for food." He then proceeded to tell me to turn left here and turn right there and we made our way in a circuitous fashion down neighborhood streets. "This route is more fun!" he said, but I didn't agree, gnashing my teeth.

We stopped at a Whole Foods and he began to shop and stopped to tell several of the staff what he had just gone through. Another hour went by before we exited the store. I found my old resentments at my mother's slowness returning! I was practically fuming, but I tried to hide it. It was about 4:30 pm when we got back to his house and rush hour was in full force. R. kept talking nonstop, apologizing every once in a while by saying "I'm on drugs" but I finally just cut him off and said, "I've got to go."
May 2019 be better for us all.

Offline brian

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Re: On Caregiving
« Reply #349 on: January 18, 2019, 06:00:27 pm »
This might interest you. In our local newspaper today

https://www.odt.co.nz/news/dunedin/health/life-alone-‘pretty-tough’