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I have a lot of elders. I've been a caregiver and am a caregiver (light duties, but of course that will change). I've seen two of my beloved family members take YEARS to die, supported by antibiotics and treatments that just prolonged a painful, confused life. I've also seen two loved ones die from a massive stroke. My father-in-law is a hermit and hoarder, the most miserable man on earth, and is in his mid-90s. Only my MIL has aged gracefully (86) and can do her ADLs herself, gardens and finds joy in life. My mom's path has been bumpy, but right now, she's doing great.



My neighbor is the head of an Area Agency on Aging. She has suggested making a commune of sorts to share care as we age. Three or four households sharing resources such as cars, aides, yard work, housecleaning, cooking, etc. My sister and her husband plan to move next door to us; these friends live down the street.



Has anyone else made plans to do something different from the horrible nursing home "hostage" situation so many of us have been in? Clearly, the US doesn't know how to care for their aging population.



I'm also a fan of assisted suicide becoming more accessible. I'm not one of those people who wants to live forever or is afraid of dying.



Just wondering if anyone else is trying to come up with alternatives for themselves after being a caregiver.

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I'll start by saying I don't necessarily agree with the assumption that professional care is some sort of horror show to be avoided at all costs. I look at the experience of several family members. My MIL insisted on remaining in the 100+ year old home where she had lived with my FIL for 60 years. The place was falling apart before he got Alzheimer's and needless to say, didn't improve after that. She insisted on caring for him by herself even after he started wandering at night in a very high traffic area. She refused any sort of home maintenance/repair from a professional - her husband had always taken care of everything (though he was not necessarily skilled in everything) and when he died, she expected her son/my husband to step into his shoes and keep everything going so she could live "independently". Including a 100+ year old house and five acres. In addition they were hoarders, we found out the true extent of this only after she died.

I don't really find this "independence" (really stubbornness and fear) admirable.
I am firmly convinced that the stress of caring for my FIL and the nearly unlivable condition of her home shortened her life. She died of cancer spending the last weeks of her life in the hospital and then at our home.

In contrast, my stepmother lived on her own until she recognized that she needed more help and then sold the home and moved herself into assisted living. I admire her willingness to face reality with a good attitude. My mother, at 84 has determined that she will be better off financially and physically to sell her home and move to an independent living apartment. She doesn't want to give up her privacy and independence, and has chosen what she feels is the best solution for her. It helps that she is fairly social; I think she'll be able to make friends and benefit from the activities and socialization at meals.

I think that's the way to go for myself as well. Of course I have to take my husband's preferences into account; he tends to see things more like his mother so will want to live independently as long as possible. Statistics would say that I will eventually be on my own and make my own decision. We saved pretty diligently throughout our working lives so I'm hopeful that our finances will support whatever we want to do.
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Again 100, I saved and planned for retirement/old age from the time I graduated from college. But I didn't give up enjoying life. I was frugal in many ways but planned. And I'm glad I did. Today I can live my life on my terms - not on the government's dole and not at the expense or inconvenience of my children. I can afford good care and services.
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freqflyer Sep 2022
Becky, I agree with you. I also didn't give up enjoying life. I remembered when my God-daughter [age 16] said I need to get out of the house and enjoy life. She said that recently while on Spring Break to Florida a trip that her parents couldn't really afford but had to keep up with the Joneses high school kids. Next time she says that, I will finally tell her about how I walked on the sandy beaches of Cannes, etc. All of which were carefully planned.
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I'm wondering if your neighbor (the head of your local area's Agency on Aging) has ever actually taken care of anyone older than herself?

A commune of people all the same age is basically what some states have: a group home for the elderly BUT they still need help and oversight. A group home with no other paid outside assistance is like one 80-yr old having another 80-yr old as their PoA or guardian. We all continue to age and decline whether we live together or not. And people are broken: we have problems getting along politically, religiously, etc. Elders lose their filters, lose their bladder control, lose their tempers, lose their dentures, lose their licenses... it would be a hot mess without one non-elder doing the admin and another providing care and help. An unassisted group could start out good but then what happens when they all eventually have problems? There's a reason why most "communes" of today are only cults where people are forced to stay. Your neighbor needs a dose of reality, not theory.

Planning as much as can be is as much as you can do. Watch the movie "Still Alice" to understand how an exit plan can go awry. People don't factor in that they might get dementia -- and you don't always know right away or will even see it in yourself, ever. So, whatever plan you make you need to put into play BEFORE you think you need it. Once you actually need it -- it's probably too late.
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TeethGrinder65 Sep 2022
In terms of commune, I meant that we all stay in the same homes we're in now. And by "held hostage," I meant there aren't a lot of fabulous options out there unless you're extremely wealthy.

And yes, my neighbor has cared for elders herself.
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I’ve chosen to be a “hostage” (LOL at this comment) in a very well run, beautifully appointed stepped residential care setting not far from where my family lives now.

I’ve chosen this “horrible nursing home” as a place where I’ve experienced exemplary care given to members of my family in the past, been around enough to see both “the roses AND the thorns” of care there, and known staff and management personnel there whom I’ve grown to admire and trust.

My choice has been made on what I’ve LIVED there and SEEN there and EXPERIENCED there. We have the financing to afford it and have made family and POAs fully aware of our wishes.

I’m also in agreement that.. “we plan, God laughs”.
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TeethGrinder65 Sep 2022
Glad you can afford the best care, Ann. I'm talking more about people who can't necessarily do that. A beautiful AL place is the dream, but not an option for many.
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I'm surprised at so many are sacrificing the now for the maybe later. Some saving is good, of course. But I also think that doing our living now while we're young enough, healthy enough, etc. to enjoy it is important too. Scrape and scrimp and do without so that you have enough money for a nursing home when you're incompetent and incontinent? I'd rather have the lovely outing with my hubby, kids and grandkids today.
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TeethGrinder65 Sep 2022
Yeah, that's where my husband and I are now, but we don't want to be unprepared, either.
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Planning our exit:

When I was first approached to purchase long term aging care, I was preparing both of my daughters to attend college away from home. I was very proud that we could pay all the loans off without them having to encumber any debt and the bonus came when they realized they graduated from college with perfect credit scores: a great way to enter the business world debt free. We didn't demand or expect that the taxpayers would take on our financial responsibilities.

Now that we have accepted that we are living in the last chapter of our lives, we are making plans, meeting with lawyers, visited a few living environments and have been wearing DNR bracelets. Neither of us want to live a long life that involves pain, memory loss, diapers, or a brain disease that turns us into shrews, that's not how we want to be remembered. We have discussed the "Death With Dignity" program that will permit us to do the choosing of how and when. Unless we suffer an abrupt medical event like a stroke, we do not plan on anyone "taking care of us." We have made a guardianship plan with our Elder Law Attorney in case one of us is left behind and can't take control of the situation we find ourself in. Years and years ago, we paid the Neptune Society to pick us up and take care of cremations. We have made great improvements to our very large home, so that it will be ready for a profitable sale whenever the recession is over and buyers are clamoring to get my very sexy kitchen. It's just about ready to go whenever we get rid of you-know-who in the White House. Now, we need to figure out how to have an estate sale while we're still alive and can move to a senior village when we can get the courage to downsize (we have been thinning out our closets, drawers family pictures and garages over the last couple of years). We had a family plan, but our son walked out and never looked back during Covid; as painful as that was, it was a big lesson about not counting on others. Only one of my three children has offered to take care of us if we become critically ill and dependent: OMG.............No!!!!!

When I say that I want to die in my sleep and not wake up until I get to the other side, I am reminded of that saying, "We plan and God laughs."
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I love that idea of sharing resources. Not sure exactly how it would work in reality but a nice idea.

I have thought of hubby and I selling our bigger house with a big property and downsizing to a smaller more manageable place, before we really need to.

I plan on staying active and healthy as I have watched my mom decline a lot because she does nothing to take care of herself. Doesn't eat well, exercise, etc etc etc. It's horrible to see that she just gave up and let life seep away from her. So that is NOT my path. No way. I know something could happen TO me but it is not going to be due to my own neglect.

I am not going to expect my kids to care for me. It has totally ruined my relationship with my mom. I hate it.
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TeethGrinder65 Sep 2022
I've been telling my kids that they are not to "take me in" in any circumstances. I'm 56. Same way I started telling them they wouldn't be living at home after college graduation. (It worked!)
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Save and downsize. It is freeing not to be "tied" to a lot of material things.
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TeethGrinder65 Sep 2022
We built our home with an eye toward it being the last place we'll live. It's small but lovely, first floor bedroom and full bath, first floor laundry. I always tell people we've built our retirement house when we were in our 30s. That was because we saw what my mom and in-laws went through.
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Saving is the best plan. Live frugally. Only spend with forethought. Facilities aren't prison or zoos or any of the other derogatory names. It's like anything else - check out where you're going, how much you can spend and choose wisely.
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Cover999 Sep 2022
Sadly many are what you have described.
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Save, save, save. Both my partner and I have been fugal our whole lives. We make it a game on how much we can save, and we have done very well. We find it fun driving two, not just one, 26 year old Jeeps, one that looks like it was driven through a briar bush but it gets us from point A to point B. The huge rust spot on the front roof makes it easy to find in a parking lot. Repairs have been quite inexpensive.

My kitchen hasn't been remodeled in the past 30 years. I still have a 32 years old Hotpoint refrigerator, hey it still cools the same as those Volkswagen sized refrig that cost thousands.

Buying new clothes? I think I bought a package of socks earlier this year :)

As for going into a nursing home or senior facility, I have no problem with that as our area has wonderful facilities. I was ready to sign up for myself when I took my Dad on tour of one place a few years back. My parents lived into their late 90's, and were still doing volunteering work in their early 90's. They would walk 2 miles a day come rain or shine. They also lived below their means, with just one income, and had saved for their rainy day.

My boss was working until he was 85 years old. No, getting older didn't take him, he passed from covid. If covid wasn't around, we both would be still working. It was keeping our minds active.

I like what they have in Europe, a couple of the senior facilities are built like a small village with shops and small grocery stores. The seniors can safely walk around. It gives them exercise and a chance to mingle with others of their generation.
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JoAnn29 Sep 2022
My DH is the saver. My salary was used to keep the house up. Save for College educations. I worked on and off raising girls 8 yrs apart. F/t anf p/t jobs. My DH has inherited a little. One of my pensions paid out and with some 30+ year old bonds, we have invested some money. We live in the same house of 40 yrs. Our cars are 13 and 10 yrs old. Appliances over 20. My Maytag 37 yrs old. We did some remodel work 20 yrs ago so ready to get going and do some work and be good another 20. We are 73 and 75 yrs old. Whoever buys the house will have to buy it with the now 40yr old cabinets. They are better made than u get now and still looking good.
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I am also a fan of our being able to arrange and plan our own final exit.
As an RN, I have long weighed the things I have seen and the truth is that for any and all old age is basically a time of loss upon loss upon loss. At 80, though very heatlhy and active, I am well aware that the losses start to the top of the head with thinning hair and go all the way down to the tailor's bunion on the foot. We lose our continence, our balance, or mobility, our muscles, our skin strength, our hearing and our eye sight and then finally our minds and all that makes us who we are, and these losses have no upside, are profound, and build exponentially and inevitably.
Other than saving like mad for all your life (and this can be done. My bro did it as a waiter by profession all his life) for the vagaries of the aging period, and hoping genetically your body can sustain itself long enough to hold up for most of your life, I am afraid there is little else TO be done. Heaven knows the last thing I would put upon an already aging child (my daughter is 60) is an infirm mother; I would want others to care for me when that is needed and I have saved to make certain they can be paid to do that.
I hope your question will be moved to "discussions" where we can all chomp on it a while and give our own opinions.
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