Is anyone revising their plans for their own future care seeing the spread of covid-19 in facilities? I know I am!!!

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Is anyone revising their plans for their own future care seeing the spread of covid-19 in facilities? I know I am!!!

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I am 82 and in pretty good health, still living in my home and independent other than hiring people to do my lawns and garden beds, and these days doing online grocery shopping with delivery. I had planned at some time in the future to go into a facility, but, when I see how this virus has spread among residents and of care facilities, who are the most vulnerable segment of the population, I am having second thoughts about my plan. Anyone else? I put this under assisted living but it applies to all institutional care.

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Once a vaccine for the virus has been developed, I would stick with your plan. You could start with independent living if you're able, then move into assisted living when needed. It's a good thing that you're planning for the future.

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Hi - the thing is there will be other pandemics, according to the experts, so we may go through this again - more than once. Planning - well some of us are planners and some aren't. I am one. :) and mother despite all her issues (and others in the family) planned very well for herself so was a good role model that way.

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Golden, what else is there if you/we become unable?

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That's the $64K question isn't it? I knew a gal who got cancer which spread to her spine so she could was not independently mobile. She stayed in her house until the very end - in a bed in the living room and had a Hoyer lift.. Sometimes she was alone in the daytime I believe. At night friends (I was one) volunteered to sleep over so someone was there, "in case" and to make her her morning coffee. I guess what I am saying, staying at home can be prolonged with suitable help/aids.

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Golden, I hadn't planned to leave my home, and am more intent on that now. Dying in a facility without the resources or even the desired ability to have them is not the way I plan to go.

I'm evaluating what needs to be done to accommodate older, possibly somewhat compromised living and plan to make those changes as I alter other aspects of the home to accommodate older living. More desirably, I want to move to a quieter, less congested area, where people actually speak to each other and cars don't zoom down the street regularly. I want peace and quiet.

Taking care of my parents and sister offered good insights into different levels of care, so I have a pretty good idea what I'll need, unless I develop some catastrophically compromising disease or illness.

What plans are you making?

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GA I want peace and quiet too, and do fairly well here, but want to move south to where the winters are shorter and there is a greater variety of medical etc help. My thoughts have been to move to a suitable house/condo/apartment and hire help as I need it and as long as it works. Had mother been suited to it temperamentally, she could have stayed in her large apartment probably another 5 years at least as we had hired a live in senior nanny for her. Even as she lost mobility she could have stayed longer with that help and avoided some of the institutional living.

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While caring for my Husband I made the expensive decision to buy Long Term Care Insurance. My first thought was..no one will care for me the way I cared for my Husband, and I do not want to put family in the position to feel that they have to either care for me or place me. The policy that I have will provide care in my home. And luckily the home I purchased was built handicap accessible so I don't have to worry about that.
So no my plans have not changed but COVID19 has cemented the fact that I made the right decision 5 or 6 years ago.

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Grandma, you certainly did make the right decision. I know a number of seniors who stayed in place until there last few days/weeks/months when they needed hospitalization. I think it is a great plan.

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Since this whole mess was handled so badly at the beginning, right from the top, many very good ALS have unfairly gotten a bad rap.

My mother spent 5 1/2 very good years in a local residential center, a second relative who had 2 good years there became infected recently by a non symptomatic carrier, and survived the infection, and if I were to become unable to remain in my own home at some point, I would prefer to be in THAT facility, and I have informed my children of that choice.

Life, at present, is a cr*p shoot. It may change, and it may not. But if and when I ever got there, that’s the choice I’d make, hands down.

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That.s very sensible, Ann. Here in Canada things are a bit different, but nonetheless one major city in my province has had a large number of outbreaks and deaths in care centers, the other major city has not so it is a cr*p shoot. I am sure their staffing patterns are similar. Mother was in a couple of facilities which have not had outbreaks, but whether there is some luck in that or not I don't know.

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Here in Canada, especially in BC, ON and PQ, Covid-19 has decimated care facilities. I know my Mum (86) worries about friends who live in them and has said she would shoot herself before entering one. She does not have a gun, so I am not worried about that.

Here there will be some major changes to how seniors are cared fro moving forward. One outcome is going to be better working conditions for staff and better employment, full time hours and benefits, so they can work in just one facility instead of many.

I am sure shared rooms will be a thing of the past too, unless it is for a couple. Finding a way to stop people from wandering into other people's rooms is important too. A friend who is physically impaired but mentally all there is having to shoo people out of her room all the time.

I think the use of restraints in facilities will increase, physical or medical. There will be court challenges, but one person's rights end, when they impact another person's health and well being.

Here in BC there has been a program called Better At Home that provides supports to seniors in their homes, I feel that program will need additional funding. It will also need far more staff and the staff will have to assigned to set families, perhaps 5 different families in their case load.

One thing that care facilities are acknowledging is all the unpaid labour provided by family and other volunteers. With facilities on lock down, the staff is being stretched even further to provide needed care.

Lastly, I think the "keep them alive at all costs" method of medical care will be reviewed. If someone cannot survive without many medications, trips to the hospital etc, perhaps Home Hospice will be called earlier? I am not suggesting euthanasia, but just allowing nature to takes it course. This is what my grandmother did, when she had Chronic Leukemia, she refused excessive treatment and let nature take it course. She was only hospitalized for 5 days prior to her death, up until that time she was at home.

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Tothill - I am Canadian too and in Alberta. We have that problem in Calgary. Edmonton, where mother was and where I would go, escaped pretty well so far, but the staffing certainly is an issue. I agree it has to improve. I think there is stay at home help here too and I hope that will be further developed. I hear you about allowing nature to take it's course. In mother's case she lived to 106 with very little intervention. In the last 20 years of her life, 2 hip replacements and a gall bladder surgery was it. All else was healthy. I appreciate what your grandmother did. Seems ideal. Unfortunately with mother, vascular dementia kicked in when she was about 100, but with a healthy body, so she lingered till she was 106.

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I have always said I would get an apartment if DH passed before me. Living in a 4 floor split level is really not conducive to old age. One reason my Mom could not live with me forever. But none of us knows what the future will bring.

My friend, earlier in the year, finally moved into a Senior apt. Loved it. A few months later landed in the hospital and then an extended stay in rehab. Not sure of all that happened but she went beyond the 100 days allowed and now is in LTC. She had to give up her apt and her dog. At 71, she has parkinsons and just diagnoised with stomach cancer. She is her own worst enemy, though. Estranged from her sons. TG she has a couple of friends who have handled things for her, one her POA. But, she is going to have to live in LTC for the rest of her life. And now Covid. She can have no visitors. How depressing for someone who is still with it. In a room all day long. Even though I have been upset with her the last year for a nasty message she left me, I wouldn't wish this on my worst enemy.

So yes, I may rethink the AL thing. No, I don't want my girls caring for me. So, I hope I stay healthy. I know one thing, I don't want to live into my 90s.

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Sad about your friend and the Parkinson's and cancer. We don't know what lies ahead, A nice apartment and help hired when needed would work for me in a few years. Now I am in a 2 story, 6 bedroom house and love the stairs. They keep my legs strong. I need help in the garden but manage the rest. I don't need the space, obviously, but it has been my home for years and though I had planned to move south this summer, covid put a stop to that. I still will move but am not sure into what.

"I don't want to live into my 90's".

Dear one, we don't always have those choices. The women in my family tend to live pretty healthily into their late 90's and mother raised the bar by surviving to 106. It wouldn't be my choice to live as she did her last few years, but, it is not within my control.

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No real plans as of yet for me. I have told my kids that if I follow my mother down the Yellow Brick Road (dementia), the place she is in would be my choice (MC.) I would not want them to have the burden of providing my care with that. With dementia, if something like the virus swept the facility, it would probably be a blessing in disguise, so long as there was no suffering. In our case, mom's facility is still virus free (combination of IL, AL and MC.) Our county currently only has about 45 confirmed cases and I believe one death (more in more populous areas and NHs, but much less that some places.)

For other ailments, it will depend on what it is and how much assistance would be needed. Hopefully it won't come to that...

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I hear you on both accounts - developing dementia being too much for family to deal with and needing institutional care. The other point - that death by a virus being a blessing in disguise for those who have to be in facilities, has occurred to me. Honestly, IMO, if mother had caught a virus and it had taken her anytime in the last 5 years of her life, it would have been a blessing, Her quality of life was not good. Mother was in several facilities. and had only single rooms. For me that is a plus. Any of them would be OK for me. Fact is aging isn't fun for anyone and there are some downsides to any arrangement.

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I find everyone's perspective interesting. Presumably most of you are in the senior's category but not up to my age.

My dd has said I could live with them. We lived together here this summer for 5 months under a time of some stress and it worked fine so she felt she could offer that. I guess I will leave it in the realm of possibility but it would not be my first choice. If I got to the point of needing more care than assisted living I would not want my dd to be burdened with that.

Ideally, I would like my own residence of some sort, that was or could be adapted to senior needs. Aging in place is a great idea if there are enough resources.

Illness may strike so if one has to live in a facility - so be it.

One aunt, on my father's side after her husband died, moved from her home into a senior's townhouse, I guess you would call it, It was her own unit, she cooked etc for herself. The outside and grounds were looked after. There was a pull cord in the bedroom and in the bathroom if she needed help. And there was a main building for seniors who were not as independent as she was. She lived there till she was 97. I gather she had some heart issues but didn't seem too badly off. One morning bending over to pick up the milk bottle which has been delivered to her door, she lost her balance and fell onto the cold brick patio type area outside her door, and lay there for a while before someone noticed and got help. She was put into hospital due to hypothermia, and passed within 2 weeks. So basically she lived in her home until the end. It's a nice way to go though she really wanted to reach 100!

I have more stories of seniors in the family I will share later. They are the ones I am looking at for ideas for myself and well as learning for everyone here.

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I decided to stay home and take care of myself if possible. I am thinking of getting LTC insurance as Grandma stated, I wish I did years ago. It was reasonable and a very good policy, but I cancelled it. Wondering how expensive it is now? I might consider a live in helper that needs a home, room & board and salary included. I am with GardenArtist peace and quiet. I will save my money and use it for necessities and the upkeep of my home. Used to think I will surrender some money and house to family members and go to a Senior Housing Facility, but I don't think so. Have to think of myself in my old age. Don't plan on family taking care of me. My dad and mom planned very well for their old age. I am trying to do the same.

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It's great you had good role models. I did too. A live in helper worked for a while with mother and would have worked longer but for mother's borderline personality disorder. Her arrangement would have worked well for me. Yes, you have to think of yourself in your old age. I have a decent retirement income that should cover necessities for quite a while. I don't want family looking after me other than being POA medical and financial. If it was a good option I would live with dd and her hub, but only as long as I was pretty independent. If any real personal care became needed I would not want her to do it.

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I know before the corona virus I couldn’t talk my mother into assisted living. Now with the corona virus she absolutely won’t go to ANY facility. She’s been hunkered down in her own home. She’s competent and will be 96 in August. I go to visit her once a week because anything more than that will be arguments. My son goes over to her house 3 days a week to take out her garbage, bring in her mail, and go grocery shopping. She doesn’t want any home health aids come to her house because she’s a hoarder. Even if she wanted a home health care come in her house, she couldn’t afford one because she gambled all of her retirement money away. I live in a small ranch house so I plan on staying here through my older years. I would pay a home health care worker to help me. If I get Alzheimer’s then I would go to a facility. It’s funny how when we were younger we just thought yeah, I’ll go to a facility when I get older, then as we get older, staying home is where we want to stay. My mother always use to talk about going to a nursing home. Well the time has come and she wants to die in her own home, not a facility.

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elaine - what can you do???? Your mum has made her choices. I think staying home with an aide is a great idea. I guess most of us would go to a facility if we got dementia. Mother had vascular dementia and needed a facility.

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One thing clear from everyone’s experience is that death from cancer or another serious illness is very different from the years and years of declining dementia. Like 1 year compared with 10 years, with all that implies for caregiving. Our GP told DH and me that few of his patients would live past 85 without drugs, particularly for heart issues. I hope that medical practice will change so that we can all die earlier and with less stress to ourselves and our carers, and less need for staggeringly expensive care facilities.

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Yes it sure is, though those with heart disease and some cancers can live for years. My ex had a quadruple bypass 10 years ago and he is still working. Re medical practice changing I guess if anyone wants to go sooner, and with less expense they can always refuse treatment.

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I so agree.... all that has to happen is for ARTIFICIALLY prolonging life to stop at a certain age or on request. My husband is much younger, and he says he wants me to do 50 years with him - a nice compliment! However, I don't want to be 91; unless I'm independent; REALLY independent, not fake independent.

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The age difference thing - I told my sig other not to plan on me dying first lol. You never know what's going to happen. No one wants to be dependent, but slowly it happens. Our definition of independent/dependent can change. I used to be able to do all the gardening but at 82 I can't now though am getting back into it as the CFS/FM seems to be going. So hiring people makes it work. Does that make me dependent? I guess we each have to set our own lines in the sand and know that they may move, Have you thought what dependent means to you?

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My plans include Independent Living but that varies considerably so whatever that turns into here - I'm picturing a small apartment with on site amenities that you can pay for as needed. Since I am alone I know that I need some kind of congregate living arrangement or I risk being one of those people who dies alone and isn't found for months, that's not being melodramatic that's just the plain truth.

My sister and I were talking about how long the strict restrictions can be sustained in Retirement Homes and Long Term Care.... I think that people in the former category who have some flexibility to find other care options in the community will not subject themselves to a life that amounts to a sentence of solitary confinement, and in the short term nobody will be going into LTC who isn't carried in on a stretcher (in dire need).

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cw - your idea of a small apartment with amenities that can be added on sounds good to me. I hear you about not being found. If R and I didn't text daily I could go for days without any knowing if I was alive or dead. I do think that this crisis will end at some point with a vaccine or something else and facilities will once more be a option.

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CWillie, there was a tv program in the last several months about a new concept in elder living. If I recall correctly, 5 women lived together in one large "house", or actually something like a collection of apartments, with common areas for eating, interacting, laundry, etc.

I don't recall if there were hired caregivers, as most of them were still able to care for themselves, but didn't want to be alone. Of course there were personal squabbles and that sort of thing. But there was backup in that others were living there as well, but it wasn't an apartment complex.

Some years ago the Eden Initiative had become noted for its different and more personal approach to elderly living. I only visited one place adopting this approach, and it was a government run facility, depressing, and definitely not someplace I'd want to be.

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Program called, Age Wise: Where We Live on PBS

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Also, I have seen a lot of nursing homes in my area when my grandmother was in a facility and my father was in a nursing home briefly for rehab. Every single one of the nursing homes the only ones who lived there had some sort of dementia or Alzheimer’s. Not one of them in any of the local nursing homes had their minds. They didn’t know who anybody was. It’s not a place for someone who is competent and of sound mind. All of them were in wheelchairs also. I wouldn’t want to go to a full fledged nursing home unless I had Alzheimer’s or dementia. Assisted living is different. People that live there are competent. I myself would prefer an aid come to my house and help me. I’m not saying nursing homes are bad, I’m saying I would not want to live in one myself if I was competent with my mind yet body failing and wheelchair bound. My father was competent and refused to come out of his room because nobody was competent and in there right mind except the staff. One woman tried to come in my fathers room and tried to kiss him. I mean you know how hard it is to live with someone who has Alzheimer’s or dementia, but imagine living in a nursing home where everyone has dementia or Alzheimer’s and you are the only one of sound mind. I wouldn’t want to live there. This is why my mother doesn’t want to go to a nursing home. She is competent and has her mind. Her body is failing her. But she uses a cane in the house. Golden, even you mentioned you would have to go to a facility if you had dementia. But what do you do if you have your mind but your body is failing you?

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elaine - a very good point Those with sound minds but failing bodies may need something apart. I think we have had a few people post here with a spouse or etc with a failing body but sound mind who were having trouble placing them. If you have the resources, and your body is failing but not your mind, I think staying at home with the proper care is the best. I don't know of any facilities that specialize in those kind of patients.

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I'm relatively young at 63 but wheelchair bound 10 years ago from progressive degenerative issues. Widowed with no family I live in UK. I have no support at all and haven't wanted it. I have all my marbles (I think lol) and like my independence.
I talk regularly by phone/messenger to a friend in NY and another 350 miles away.
I've been totally home bound since 12th March thanks to Covid 19 and it's given me time to reflect on my plans for the future. I have a will in place (though little to leave), an Advanced Directive (how I ideally want end of life to go), an End of Life Doula, my funeral and burial are sorted and my bff has POA.
I want to stay in my (Housing Association) bungalow with my cats until the end, that has always been my wish.
On Thursday my Dr. video called me and at the end of the call advised me that
she was concerned about my deteriorating physical/mental health from being in prolonged isolation (I can't get outside at all at the present) and as such I had 2 choices go into hospital or go to a place that is usually run as a Respite Centre.
It was closed in Jan for refurbishment and Covid 19 meant it didn't reopen. It's now being used by our NHS for people who are not safe at home (temporarily) but don't need hospital treatment. There are Nurses there. I'll be away for a month and arranging care of my fur babies has not been easy.
I still hold to my original decisions though, I will return home when I am well (I hope) and end my life in my home with whatever Care Support I can tolerate.
My late DH had carers when he had Cancer because I was not physically able to care for him with my own disabilities. That was the theory anyway, the carers were for the most part a nightmare and I nursed him myself July-Feb when he died. I then dealt with not only his death but the effects of months doing things I physically/mentally shouldn't have done. No regrets though, he had a gentle death with me at his side to his last breath.

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Lucy can you keep a journal and post parts of it onto this site on a regular basis? It would be great to get a perspective from an elders in the moment viewpoint.

so the respite place is a brand new Or newly rehabbed building designed for continuing care? That’s amazing (the type of thing you can do easier when there’s universal healthcare) and if being there for a few weeks can help you get better both physically and mentally, it’s a good thing. If there’s bereavement counseling, please think about participating in it. Best of luck to you.

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Lucy keep coming back to this site. It really does help!! Cats do help. I have 3 of them and one of them is a ragdoll cat named Annabelle. She is like a little puppy. She follows me all around and if I go to the bathroom and close the door she starts crying,lol. Cats are wonderful. Take care and stay safe and keep coming back here. There are wonderful compassionate people on this site. You are not alone.

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Again it is interesting to hear different views and experiences. I know finding good carers is not easy.

Another story about another aunt - my father's other sister. She (E) and her hub (B) lived in their home of many, many years up into their 80s. Both were pretty healthy. She had had a small heart attack but recovered well. B, her hub, used to cycle a lot, even at that age. One day out for a ride he fell off his bicycle. I never heard if he had an episode of any kind that caused the fall. He was sent to a facility of some kind after hospital. They were a couple who were still very much and obviously in love after 60+ year of marriage. E did not do well without her hub and she was placed in a different facility. Sadly they both died within 3 months of B's accident, but apart. On the other hand they had had a good life together all those years. They had a daughter who helped them with some things, but I think they were essentially independent until B's fall.

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Is anyone revising their plans for their own future care seeing the spread of covid-19 in facilities? I know I am!!!

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