Having cared for my mother-in-law at home until she died at home at 93, and having supported my step-father and mother from afar (in another country) as she declined and died from dementia at 76, I am acutely aware of how vulnerable I could be as someone ageing without children - I have a partner but he has two chronic illnesses that are currently manageable, so who knows how that will shake down? And many women I know who are ageing without children are also doing so solo.
That's why I'm creating ALTERKIN - a hyper-local, mutual-aid group in my tiny rural Irish community for those ageing without children. (And hope over the next couple of years to help others do the same for themselves).
Proactively creating communities of care isn't a perfect solution, but it's better than the alternative, which is to rely on underfunded, understaffed and collapsing social care structures and perhaps a friend or two who lives close enough.
How true. As I said, it was other people's problem... Until it happened to my friend. I live in a norc, naturally occurring retirement community, full of creative, can-do people. I wonder how empowered we can be.
Yes! Care is a shifting balance between health treatment and social support. Last week a high school friend (circa-1980s) called me from two states away in crisis, to support her over the cellphone to check into a hospital as directed. Headshake, sometimes the “connections” we’re building via social media and whatnot aren’t sufficient to sustain us.
Even in my own community, “community” is more things to do and opportunities to buy stuff than build real connection. I am noodling how to address this in my own little circles of control and influence.
Going local is the move. It may not work either, but it's the move. Reading you brought up a question that had just hit me--If I'm home alone and suddenly need help, who'm I gonna call? In my mind, I went along the long dirt road where our house is, and stopped at one place. A woman lives there who corresponds with me and might be an actual friend if I made some overtures. We've all been private units out here in the woods. That isn't going to work in an unraveling world. We recently got evidence that it CAN work. There was a fire near our house, down a slope where our nearest neighbor (we're on ten-acre parcels here) saw it before we did. They called 911 and ran here with hoses. Granted, it was in their interest as well as ours to stop the fire, but it was heartening--they'd been hostile in the past and the shared crisis broke through that.
When I was writing my book and researching aging, I read A Bittersweet Season: Caring for Our Aging Parents--and Ourselves - an amazing book by a New York Times reporter who covered aging AND had gone through the experience of having to provide support for her aging mother. The statistics she provides on how many older adults live close to the edge and will run out of money are chilling. It doesn't require rocket science to grasp that we have a big issue on our hands. The Japanese, at least, have thought about it. I suppose if we can deny climate change, we can deny the magnitude of the problem we are facing as well. I wish I had a few solutions.
This is a difficult experience you have told of Vicky. I have been caring for my partner who I’ve loved for most of my adult life (she’s 71 and I’m 64) for around 10 years. She has advanced MS. She’s amazing. It breaks my heart. We both hope to have the best life we can together for as long as there is breath in our bodies.
It can feel overwhelming sometimes when a friend is in trouble and so far away. I like your solution of showing up locally the best you can. It's really all we can do.
I have worked in nursing homes as a physical therapist for 22 years and it is not always pretty. It is typically a 20 patient to one nursing assistant ratio which is all the State mandates. So, if the nursing assistant is in Joe’s room getting him on the toilet which can take a good 20 minutes and three more people have their call lights on, you can often wait over an hour. They do the best they can, some more than others. It is a hard and mostly thankless job.
It’s all really so complicated. Most people have no idea that 90% of people in nursing homes are being paid for by Medicaid. If you go into a nursing home, you turn over your assets, or pay privately, but that money runs out quickly as it costs from $6,000 to $9,000 a month. My father is in an assisted living paying out of pocket, which is a step up from a nursing home. He has his own room but still suffers from not enough staff. (And if they had more staff the cost would be even more.) Once his money runs out, he will have to apply for Medicaid, move to nursing home where he will have to share a room, and he will have less help.
We looked into caring for him at home. He had a stroke and requires 24 hour care which costs $14,000 a month in home nursing. That does not include someone to cook, clean etc. The kids could take the night shift possibly, but incontinence is a huge issue. He can’t go eight hours without a change of a brief because that leads to skin breakdown and UTI’s. And besides, he doesn’t want his kids doing that for him. It’s a huge dignity issue. He chose a home.
He at least gets up in the chair every day. I have seen people lay in bed for years and I don’t know how they do it. Some handle it well and want it that way. Others get mad and lash out. (That will be me!) Therapy is allowed every so often under Part B but we get patients to a certain level, maybe walking again with some help. They are discharged from therapy, unsafe to walk on their own and told to stay in the wheelchair and they go downhill again. Round and round we go.
Families are busy with their own lives and can visit maybe once a week which feels like forever for the person in the nursing home. And residents often lose track of visits due to memory issues. My dad will insist no one visited in a month, yet my sister goes once a week.
Now it is not all bad. Some people do okay. They make the best of it. They form their friendships, attend activities, try to do for themselves. They read. They find something positive. I see every type in therapy. The patient who doesn’t attempt to move on their own and others who say, “No wait, let me try to do it”. The second type, of course, fares better.
I don’t know if one can really prepare for all of this. Financially, it costs a fortune. Mentally it’s a lot to think about. I would almost rather have dementia and not know all this is happening then sit in a soiled brief for hours on end, fully aware. The best we can do is take care of our bodies. Eat right so you prevent chronic illnesses and going on a list of medications. (Besides the cost of meds, as the memory goes, people don’t take their meds properly and another reason they have to go to a nursing home.) Staying as fit as possible to prevent falls as that is one of the main reasons people also have to go to a nursing home. Then hoping we peacefully die in our sleep before having to go to a nursing home.
And back to your point of showing up locally, I would love to see people volunteering at nursing homes. I may have painted a scary picture of being a patient there, but visiting isn't scary. If you like to sing, go sing for the elderly. Or read to them. Or hold a hand. Or just listen. They all have a lot of stories to share. Let them know they still exist.
Thank you for sharing this. So many of us can relate on so many different levels. Being able to talk ordinarily with parents and aging friends about these inevitabilities of getting old is a first step. Indeed it’s not always pretty and get letting go of certain ideas about oneself is part of the journey.
Of course, Phoebe. Most of us are going to be facing it in some way with family or with ourselves. It is so hard to think that it may happen to us. I love that Vicki is using this platform to open the discussion about aging.
Having cared for my mother-in-law at home until she died at home at 93, and having supported my step-father and mother from afar (in another country) as she declined and died from dementia at 76, I am acutely aware of how vulnerable I could be as someone ageing without children - I have a partner but he has two chronic illnesses that are currently manageable, so who knows how that will shake down? And many women I know who are ageing without children are also doing so solo.
That's why I'm creating ALTERKIN - a hyper-local, mutual-aid group in my tiny rural Irish community for those ageing without children. (And hope over the next couple of years to help others do the same for themselves).
Proactively creating communities of care isn't a perfect solution, but it's better than the alternative, which is to rely on underfunded, understaffed and collapsing social care structures and perhaps a friend or two who lives close enough.
Thank you Vicki for being one of the guests who came together to discuss the issues of 'Solo Elderhood' at one of our recent 'Fireside Wisdom with Childless Elderwomen' webinars - free to watch here: https://jodyday.substack.com/p/fireside-wisdom-with-solo-elderwomen
It’s no wonder there is a growing movement of older people interested in ending their lives before this sort of things happen.
Indeed. And no surprise that my last post was about rational suicide, even though I didn't see it until you said it!
Ooh, I need to go and read that. Thanks for highlighting it!
Thank you. This is the thing we all fear the most. I have seen it happen far too often, yet no one seems to acknowledge it unless they’re in it.
How true. As I said, it was other people's problem... Until it happened to my friend. I live in a norc, naturally occurring retirement community, full of creative, can-do people. I wonder how empowered we can be.
Yes! Care is a shifting balance between health treatment and social support. Last week a high school friend (circa-1980s) called me from two states away in crisis, to support her over the cellphone to check into a hospital as directed. Headshake, sometimes the “connections” we’re building via social media and whatnot aren’t sufficient to sustain us.
Even in my own community, “community” is more things to do and opportunities to buy stuff than build real connection. I am noodling how to address this in my own little circles of control and influence.
Going local is the move. It may not work either, but it's the move. Reading you brought up a question that had just hit me--If I'm home alone and suddenly need help, who'm I gonna call? In my mind, I went along the long dirt road where our house is, and stopped at one place. A woman lives there who corresponds with me and might be an actual friend if I made some overtures. We've all been private units out here in the woods. That isn't going to work in an unraveling world. We recently got evidence that it CAN work. There was a fire near our house, down a slope where our nearest neighbor (we're on ten-acre parcels here) saw it before we did. They called 911 and ran here with hoses. Granted, it was in their interest as well as ours to stop the fire, but it was heartening--they'd been hostile in the past and the shared crisis broke through that.
Christina Baldwin is starting a series today at hcl about micro neighborhood communities. Let's talk about this.
When I was writing my book and researching aging, I read A Bittersweet Season: Caring for Our Aging Parents--and Ourselves - an amazing book by a New York Times reporter who covered aging AND had gone through the experience of having to provide support for her aging mother. The statistics she provides on how many older adults live close to the edge and will run out of money are chilling. It doesn't require rocket science to grasp that we have a big issue on our hands. The Japanese, at least, have thought about it. I suppose if we can deny climate change, we can deny the magnitude of the problem we are facing as well. I wish I had a few solutions.
This is a difficult experience you have told of Vicky. I have been caring for my partner who I’ve loved for most of my adult life (she’s 71 and I’m 64) for around 10 years. She has advanced MS. She’s amazing. It breaks my heart. We both hope to have the best life we can together for as long as there is breath in our bodies.
It can feel overwhelming sometimes when a friend is in trouble and so far away. I like your solution of showing up locally the best you can. It's really all we can do.
I have worked in nursing homes as a physical therapist for 22 years and it is not always pretty. It is typically a 20 patient to one nursing assistant ratio which is all the State mandates. So, if the nursing assistant is in Joe’s room getting him on the toilet which can take a good 20 minutes and three more people have their call lights on, you can often wait over an hour. They do the best they can, some more than others. It is a hard and mostly thankless job.
It’s all really so complicated. Most people have no idea that 90% of people in nursing homes are being paid for by Medicaid. If you go into a nursing home, you turn over your assets, or pay privately, but that money runs out quickly as it costs from $6,000 to $9,000 a month. My father is in an assisted living paying out of pocket, which is a step up from a nursing home. He has his own room but still suffers from not enough staff. (And if they had more staff the cost would be even more.) Once his money runs out, he will have to apply for Medicaid, move to nursing home where he will have to share a room, and he will have less help.
We looked into caring for him at home. He had a stroke and requires 24 hour care which costs $14,000 a month in home nursing. That does not include someone to cook, clean etc. The kids could take the night shift possibly, but incontinence is a huge issue. He can’t go eight hours without a change of a brief because that leads to skin breakdown and UTI’s. And besides, he doesn’t want his kids doing that for him. It’s a huge dignity issue. He chose a home.
He at least gets up in the chair every day. I have seen people lay in bed for years and I don’t know how they do it. Some handle it well and want it that way. Others get mad and lash out. (That will be me!) Therapy is allowed every so often under Part B but we get patients to a certain level, maybe walking again with some help. They are discharged from therapy, unsafe to walk on their own and told to stay in the wheelchair and they go downhill again. Round and round we go.
Families are busy with their own lives and can visit maybe once a week which feels like forever for the person in the nursing home. And residents often lose track of visits due to memory issues. My dad will insist no one visited in a month, yet my sister goes once a week.
Now it is not all bad. Some people do okay. They make the best of it. They form their friendships, attend activities, try to do for themselves. They read. They find something positive. I see every type in therapy. The patient who doesn’t attempt to move on their own and others who say, “No wait, let me try to do it”. The second type, of course, fares better.
I don’t know if one can really prepare for all of this. Financially, it costs a fortune. Mentally it’s a lot to think about. I would almost rather have dementia and not know all this is happening then sit in a soiled brief for hours on end, fully aware. The best we can do is take care of our bodies. Eat right so you prevent chronic illnesses and going on a list of medications. (Besides the cost of meds, as the memory goes, people don’t take their meds properly and another reason they have to go to a nursing home.) Staying as fit as possible to prevent falls as that is one of the main reasons people also have to go to a nursing home. Then hoping we peacefully die in our sleep before having to go to a nursing home.
And back to your point of showing up locally, I would love to see people volunteering at nursing homes. I may have painted a scary picture of being a patient there, but visiting isn't scary. If you like to sing, go sing for the elderly. Or read to them. Or hold a hand. Or just listen. They all have a lot of stories to share. Let them know they still exist.
Thanks for listening!
Thank you for sharing this. So many of us can relate on so many different levels. Being able to talk ordinarily with parents and aging friends about these inevitabilities of getting old is a first step. Indeed it’s not always pretty and get letting go of certain ideas about oneself is part of the journey.
Of course, Phoebe. Most of us are going to be facing it in some way with family or with ourselves. It is so hard to think that it may happen to us. I love that Vicki is using this platform to open the discussion about aging.
Agreed. A societal taboo, otherwise, especially in the USA. Bizarre and sad. Thank you @Vicki and @Cheryl ✨