How fast we can fall
The medicine we really need
Thank God, or Lyndon Johnson’s Great Society, for Medicaid. Without it, I have no idea how my friend would manage being broke, 84 and unable to walk. Yet there’s a medicine no safety net can provide.
Five years ago, my friend’s balance started to fail. She started to fall in her NYC studio apartment. Besides grab bars, her sole defense was her cell phone, always strapped to her body, to call 911. She went to rehab each time she fell, to the extent of what Medicare would pay, and then back to her apartment… and falling. The last fall, when the medics had to break down her door because she couldn’t get to it, landed her, finally, in two-bed room on a 40-bed floor in a nursing facility. Now, she can’t get out of bed without help and is dependent.
She is gritty New York resourceful. She rebuilt her life through AA and established a successful therapy practice. She’s a woman who knows how to get up. But now she is losing her mental capacity as well physical.
She called me in a panic.
With no agency - neither physical, mental nor material - she can’t keep rising to this occasion as she has before to every other. It’s like she lost a limb.
“I need someone to come and be with me now,” she demanded, even knowing I’m 3000 miles away. She’d been coping. An aid wheeled her to lunch daily and to physical therapy. But the dining room floor shut down due to contamination and no one told her. I can see her struggling into her clothes, putting in her teeth and putting on lipstick… and waiting. Her PT ran out and she doesn’t know why. Her call button light in the hall had burned out, but no one told her. She called me after it had been on for an hour.
Perhaps you’ve watched a loved one’s world collapse in that way, but I hadn’t. The tragedy of the millions who outlive their will to live, in nursing homes or on the streets, went from one of the sad problems out there, to an icy fear for my friend. I didn’t panic, but I lasered my mind. There must be people in that vast city who, out of service, take on the holy task of visiting shut-ins.
I listened to her terror and her resourcefulness toggle, like spinning rear tires trying to grab hold in the mud.
Finally, she lit on the woman who cleaned the apartment building she’d lived in, and who’d become a friend. This woman, C, had visited her before, bringing her treats and gossip.
She got through to C, who came with treats and gossip, and the next time we spoke, my friend was transformed… back to her old self as they say.
Social, not socialized, Medicine
We all know, though, that she will never be back to her old self, and if social contact is her best medicine, then she needs it. I wracked my brain for anyone I know in the NY area who might be able to mobilize daily visitors for her, make her the most popular girl in the whole nursing facility. This led to talking with a rapper/philosopher I met a year ago at an NYC event, and got his thinking cap plugged in.
Isn’t this the terror rippling under coming of aging, that when our bodies and minds slow down, we become social outcasts, and the river of busy people just flow around us.
This post on NextDoor today mirrors how frantic you can become trying to solve such problems for loved ones:
I need some help--my mom is in a memory care home in Shoreline and needs more help than they can give her. I don't know where to start looking for someone in Seattle …and am seeking a one-on-one professional person to help her in the evenings as many nights as possible.
And this morning I got this email from a good friend:
(a young man) is willing to do handyman work (not skilled carpentry) in order to raise money for someone struggling with very high medical bills. If he does work for you (painting, gardening, clean-up, weeding, raking, etc) you will pay him and he will donate 100% to this person's medical costs. His goal is $25,000. but he says that anything that is collected and offered will help this person feel there is Hope! The person he is collecting for does not want to be identified.
All this against the backdrop of the LA fires, with photos of people in wheelchairs, just like my friend, being evacuated, and stories in my social feeds about friends absorbing the newly homeless into their guest rooms elsewhere.
Maybe the particular - my friend’s vulnerability in NYC, a gofund me for a friend or relative with no money for care or home to go back to - reveals how frayed the system is, and afraid the people are, as we face the pace of endings ahead. This is how we feel the enormity of what’s unraveling. This is how the headlines, that rile our minds with thoughts of blame and revenge, soften us and make us community again.
Maybe we just have to care more because the faceless system somewhere, that we thought would catch our friends in need, is unraveling.
There’s plenty of blame to go around for what’s supposed to be there but isn’t. The dry fire hydrants in LA. The limits to what FEMA can do or what insurance will cover. Sufficient nurses for all the nursing homes. 50 years of foresight on climate disruption. That’s not the point.
What may collapse around us, the phantom limb of a social safety net that isn’t there, calls us to reconstitute something within us and between us.
This is a story of my own desperation, on imagined assignment to be that net that isn’t there, and hold more than I can hold. I will do my best with what comes to me. I once thought I could save the world. Now I intend to care in particular.
The Empire, that seemed invincible, has no clothes
Locally, my intention is this: Show up. Participate. Invite others to participate with me. Notice the weave and add my thread. And, given who I am, talk about it all incessantly, wave my arms around and make some possibly good enough trouble.
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!
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.