I see a lot of fiercely independent seniors who haven't planned well for the next phase of life. In the rural areas, they are used to living on their own, sometimes on properties that are deteriorating due to their owners creeping infirmities, or lifelong patterns of sloppiness.
Some have had hoarding tendencies that have gotten out of hand. EMS will give colorful reports on that.
What a good way to help these stubborn folk, who need to be guided into assisted living, or toward accepting family help? Sometimes adult children are spread out, or alienated from their parents.
I think sometimes we are just not very capable of understanding exactly what things mean to them, or how they see things, maybe.
For example, on one of the covid threads I think, there was a discussion about loneliness due to no visitors in LTC and someone said, "better lonely than dead!" But--says who? Lots of people who are nearing the end of their life are well aware that they're nearing the end of their life! They figure it'll be any day now... We might be surprised how they would respond to the "better lonely than dead" idea, even if they aren't depressed or cognitively impaired.
I think it means a lot to some elderly to think of not living in the home they've lived in for years...moving somewhere that is never going to feel anything like home and is more akin to a hotel room...and they don't have enough years left to make it feel like home even if they could...even if people try to make it look homey.
And what about their things? The special things that are theirs, that they look at to reminisce...? Who cares if it's old news clippings and odd collections, and weird decor, etc? Those are their memories represented in all of those various items that are junk to others.
Some of them can still walk in their own yard or sit on their own lanai or tend their own potted tomato. Or have a cat. Or do exactly as they please without some they don't know calling them "sweetie."
They don't need as much food as we think they do, they don't sleep long stretches the way we think they should, the peoplewho guided them in their life are long gone and many of their friends are, too. Probably their beloved spouse, too! There's just a lot that I don't know if we can completely understand or appreciate until it's our turn someday.
There is definitely a subset of cognizant elders who are not too concerned about dying if they fall down or accidentally take the same pills twice or skip supper or some other event that seems very dangerous to others.
I agree with everything in your post but the part I bolded really strikes a chord. I think that some of the things we do to or wish for the elderly is quite paternalistic in nature. It might be well-intended but who are we to decide what’s best for them?
I have a 104-year-old relative who lives in her own apartment. She’s lived there some 50+ years. It’s got three bedrooms so it’s kind of big for one person. But it is her home. I honestly feel that she’d lose her will to live if she was forced to move. Of course we worry about her but as long as she doesn’t pose a danger to anyone else, I don’t think she should be made to move against her expressed wish. At least about two years ago (!) we persuaded her to let one of us change the light bulbs in the ceiling lamps and the batteries in the smoke alarms when needed, rather than her climbing up on a stepladder and doing it herself. She loves her independency and does the majority of her own shopping. Who are we to take that away from her? Sure, it would be really nice to feel less worried, but it’s her life. Her decision.
Regarding LTC’s and no visitors. It’s the same in my country. After the initial wave in March it was decided to ban all visitors. I understand the rationale. Of course I do. It’s another measure that’s wholly well-intended, but at what cost?
Back in May I saw something on the news that made me both smile and feel sad at the same time. It was a group of kindergarten kids who’d started to make weekly visits to a local LTC. They brought lots of colorful drawings they’d made that they held up towards the balconies of the LTC building and they stayed and sang a few songs to the residents who’d come out on their respective balconies.
The reporter asked one of the children who looked about three or four, how come they were there singing and showing their drawings? The kid looked really serious and replied: they feel lonely because they can’t go out because of Cowona (couldn’t say R). And the reporter said that I’m sure this will help. Those drawings you made are really cheerful. The kid nodded solemnly and said, I hope so. The folks I saw on the balconies mostly looked 90-ish and they seemed to appreciate what the children did, and were smiling and waving to them. Touched my heart ?
Purely from the perspective of a granddaughter of a stubborn old lady. My grandma was fiercely independent and dancing on tables at weddings well into her 80s. She passed away a few years ago, but when she began deteriorating she gave everyone hell. She was mad at the doctors for telling her her diabetes could no longer be controlled by Metformin and she needed to take insulin 3x/day. She was mad at my mom for suggesting a Life Alert after she fell in her doorway and laid there for 4 hours before someone saw her. She was mad at the PT for telling her she needed to use her walker. I was usually given the task of explaining things to her. Everything had to be presented as a choice to her. She didn't want to be told she had to do anything. She agreed to the bare minimum. She ended up living on her own (kids checking up on her daily) and fell, hitting her head on a toilet causing an intracranial bleeding. She was quickly put in hospice, and she died in her home.
OK, so nurses should not try to guide and influence patients towards healthier choices of living, but just "let them die on their own terms". Message received.
Drama much? That's not what people are saying here. Working in primary care, we see this alot, elder folks that live in a way that could be detrimental to their health. Elders living alone way past the time when they should either be in a facility. Concerned adult children calling in, wanting something "done about Mom". This is especially thorny when concerned adult child isn't on the auth to share because Mom wants her business to be hers. One of my providers once asked me for the ICD-10 code for "stubbornness".
Many can't afford $5k+ a month for assisted living. Many won't spend down everything they have saved to live in a Medicaid bed in an LTC. Many won't leave the home they have lived in for decades. Some say they won't "get rid" of a beloved pet to move into a more secure environment.
As nurses, we can only guide and inform. As long as a patient is competent to make their own decisions there really isn't much that can be done other than to try and explore alternatives.
I am 37 years old and I love my home. It is not large or expensive. My husband and I bought it when my son was a baby; our first home. I’ve painstakingly painted (and, well, hired painters) and hung curtains and taken out carpet. We pay extra every month and the mortgage will be paid off early. Every memory I will cherish of my son when he’s grown, is here in these walls. I can only imagine if I, at 85, was deemed to be unsafe and forced to move into a tiny dorm room in a nursing home. Honestly, if at 85, I’ve developed dementia and forget to turn the stove off— well, let it burn. I’ll go out in a blaze with it.
Now, I do think that having an aide come in, or a family member, to help IN the home is great when people can swing it and are willing to accept it. And some people are social and really enjoy the company of having people around them in a nursing facility. But if not, well, we all have to die sometime. I know it is so, so painful for children and grandchildren to see their elderly relative “uncared for,” but sometimes people have the right to choose their way of life.
This is just very hard all around. For we loved ones, too. I've been close to situations where the beloved elder's wishes were (rather easily) able to be maintained to the end with family near-by. Now close to a situation where things are not going to go as ideally. Not sure what the end will look like, and that hurts in all kinds of different ways, not the least of which is guilt and just some sadness, too.
I just wanted to express my compassions to all who are living through and trying to make the best of your own situations with people you care about deeply.
Specializes in Psych, Addictions, SOL (Student of Life).
Having just been through an ordeal with my own mother now deceased for 2 years. She was diagnosed moderate to severe cognative decline later diagnosed as vascular dementia. She lived on her own until the last 8 months when it became clear it was not safe for her and others to leave in her home. She refused to live with any of her kids. Something we were secretly relieved about as she was a pretty abusive mom through our whole childhoods. Still she got into a number of small fender benders, left the stove on and almost burned down her condo and finally had a series of falls.
My siblings and I literally took her kicking and screaming from her home to an assisted living which she hated. The Genworth cost of living survey says the average monthly cost for assisted living is $4,000.00 or about 448,000.00 a year and that's just the rent. Cost go up if your loved one needs assistance with medications, adls etc... When it became clear she could not manage Assisted living we moved her to a a memory care facility. In California memory care costs upwards of $8,000.00 per month. In my mother's case it was $9,500.00 per month and none of it was covered by medicare. Thank goodnes we had the money for it in a trust my dad set up for her care should she need it because that comes to almost $100,000.00 PER YEAR.
Many families simply cannot afford this kind of care. Even though it was beautiful place with great care and wonderful staff my mom was miserable there. If she would only have allowed us to help her in her home I would have left her there. She might have died sooner but she would have had the life she wanted rather than the end of life that was forced on her.
I've seen this several times with pt's on my floor. They are in their 80's and 90's but still are independent, still work around their properties and whatnot. I never argue with them. I try to tell the newer docs that if they have made it this far just let them go on their own terms, they earned it. I would probably feel the same way if in their shoes. Heck my aunt's father was still riding Harley's well into his early 80's, aint no one was going to tell him otherwise.
Specializes in Psychiatry, Community, Nurse Manager, hospice.
On 8/11/2020 at 11:59 PM, Sour Lemon said:
I think it's appropriate to let them live and die on their own terms. Good care often seems to prolong the inevitable and increase suffering, unfortunately.
Interesting viewpoint. Can we really call it good care if it is increasing suffering?
Specializes in Psychiatry, Community, Nurse Manager, hospice.
My area has a program called LIFE, Living Independently For Elders. I think it is called PACE elsewhere. It is for low income elders who meet a nursing home level of care but want to stay in their homes. It's state funded, but run by a hospital system. They send HHAs, nurses, PT, etc to the home and also host a day program, clinic, and do medication delivery. They have a van that takes folks to the local stores, appts with specialists, everything.
My community clinical in nursing school was there. They also function as the insurance company for the patient. It's intensive but apparently less expensive for the state than a nursing home.
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macawake, MSN
2,141 Posts
I agree with everything in your post but the part I bolded really strikes a chord. I think that some of the things we do to or wish for the elderly is quite paternalistic in nature. It might be well-intended but who are we to decide what’s best for them?
I have a 104-year-old relative who lives in her own apartment. She’s lived there some 50+ years. It’s got three bedrooms so it’s kind of big for one person. But it is her home. I honestly feel that she’d lose her will to live if she was forced to move. Of course we worry about her but as long as she doesn’t pose a danger to anyone else, I don’t think she should be made to move against her expressed wish. At least about two years ago (!) we persuaded her to let one of us change the light bulbs in the ceiling lamps and the batteries in the smoke alarms when needed, rather than her climbing up on a stepladder and doing it herself. She loves her independency and does the majority of her own shopping. Who are we to take that away from her? Sure, it would be really nice to feel less worried, but it’s her life. Her decision.
Regarding LTC’s and no visitors. It’s the same in my country. After the initial wave in March it was decided to ban all visitors. I understand the rationale. Of course I do. It’s another measure that’s wholly well-intended, but at what cost?
Back in May I saw something on the news that made me both smile and feel sad at the same time. It was a group of kindergarten kids who’d started to make weekly visits to a local LTC. They brought lots of colorful drawings they’d made that they held up towards the balconies of the LTC building and they stayed and sang a few songs to the residents who’d come out on their respective balconies.
The reporter asked one of the children who looked about three or four, how come they were there singing and showing their drawings? The kid looked really serious and replied: they feel lonely because they can’t go out because of Cowona (couldn’t say R). And the reporter said that I’m sure this will help. Those drawings you made are really cheerful. The kid nodded solemnly and said, I hope so. The folks I saw on the balconies mostly looked 90-ish and they seemed to appreciate what the children did, and were smiling and waving to them. Touched my heart ?