A Friday Open Thread about moving—our parents, or ourselves—to facilities that are more supportive for elders. A collaboration with Claire Zulkey's "Evil Witches" parenting newsletter...
I'm already so grateful for the feedback, both on behalf of my reader who wrote in but also all of us who entering this phase of caretaking/life. Thanks for being generous with your experiences/empathy. Thank you Sari for letting me in your space!
A widow with an eighty-year-old boyfriend John, I wonder how two lovers in the autumn of our lives, clinging to one another against the ravages of age, exit this good earth.
I was in my thirties when my husband’s father had a massive stroke leaving him paralyzed on the right side of his body. Admitted to the only nursing home in his town that accepted Medicaid, he languished there, wheelchair bound, right arm atrophied, fingers curled into a claw that would not open no matter how many times Herb rubbed and stroked his father’s hand during our weekly visits to northern Virginia.
He could speak only out of the left side of his mouth, the right side drooping into a permanent frown. “I pushed the call button ten times to ask for a bed pan,” he would tell us, lisping, “and when the nurse came it was too late. He called me a dirty man and beat me for messing up my sheets. I was so ashamed.”
I had begun researching nursing homes when my mother was still alive. One day, after visiting a relative at her Continuing Care Retirement Center, Mom said in the car-ride home, “If I ever have to go into one of those places, please shoot me.” For years she had advocated for physician-assisted suicide, joined the Hemlock Society, supported Death with Dignity, and re-written her Advanced Directives ten times. All for naught, as she slipped away in the middle of the night at Chestnut Hill Hospital leaving her last Tastykake lemon pie half eaten on her tray table.
My plans are different. I like the idea of being around people. I like the idea of one of those places. I like the idea of a place called Pennswood Village, built on eighty-two acres of Bucks County farmland, preserved in perpetuity as wildflower meadows for pollinators and birds, and woods with walking trails. It could all end right here, I think.
But who are these people with whom we might end our lives? Who would be on the journey with us, by our sides in our final hours, walking us home as I once did for Herb and will do for John when the time comes? As we relinquish our bodies can we still choose the company we keep, our friends for life? And how will we fill our days as time both speeds up and slows down?
I want to know and cherish these people, and for them to know us.
Ruth, we discover, is 98 years old. She greets us as we tour. She can help us register to vote. “Everybody here votes,” she says. “You must vote.”
We meet Verena, a Swiss-born retired physical chemist and chemical engineer, and her dog, Lexie, in the gazebo by the Community Gardens which Verena oversees. She shows us her rhubarb, raspberries, radishes, and watermelon. “Everything here is done by the residents,” she says.
We meet Steve, head of the Birders club, and his wife, Deidre, a retired professor of Africana Studies and co-founder of the Parkinson’s support group. Together they attend La Mesa Española for residents who love practicing their conversational Spanish. We meet Larry, a tenor in the Princeton Pro Musica, who is helping to found a community chorale.
Each time we return we find seniors who are grateful to be alive—people who say we never die, instead we graduate. We’re given pointers on the dreaded cognitive assessment, the SAT of senior living and a requisite for admittance. We’re invited to practice Spanish and yoga, to enjoy a daytime swim.
John auditions to sing in the chorale.
Fresh from the pool, I joke with new locker room friends about our uncooperative bodies and the traffic jam of walkers and mobility devices blocking the lockers. I suggest parking tickets.
Together John and I lift weights and take aerobic dance with Brian, a former Riverdance performer who teaches “Silver Strong” and keeps us laughing. “If it feels too good,” Brian says, “you’re probably doing it wrong.”
It isn’t long before John and I are as certain as any can be about the days ahead. We will move to this place of wildflowers and engaged citizens. We’ll sing, and we’ll dance. We control so little. But we won’t die with the music still inside us. And, if we are lucky, we will graduate. Because the end of life is one continuous commencement ceremony, above all in one of those places.
No, you didn't! Your life is one continuous celebration. Especially when you get to hang out with Abigail Thomas and Rosie O'Donnell. I am so excited that you plan on compiling some of your amazing Oldster submissions into a book--a treasure trove! Party on.
I asked my doctor, an internist. I told her I was having short term memory loss and wanted to catch it early (I am 70). She gave me a few tests and I didn’t do so well on the math. She scheduled a brain MRI for me. They think they found a mini-stroke. Next step, neurological diagnosis. My husband and I hope to stay home until the end. If not there’s a good place a few blocks away.
I’m going through this right now with my mom, age 72. I called her Primary Care clinic and requested a SLUMS test or the like to evaluate her cognitive abilities. You may need a referral to an occupational therapist.
AMy mom is living independently but we worry about her being isolated, especially after COVID. Those years did a number on our elders and I think that sometimes gets overlooked because so much focus went on the kids, understandably.
Oh, that's new to me, the SLUMs but it's very similar to the others, like the MMSE. What annoys me about many of these tests are the "what day of the week is it" kind of question. If Mom has been retired for 20 years, it's perfectly reasonable she wouldn't know what day it was. I'm retired for a year and never know.
I know that our large healthcare network in our city provides cognitive assessment as part of its “is it safe for you to drive still” program. It’s connected to the PT/rehab arm of the network and is for anyone who is recovering from surgery, stroke, or is aging.
The cognitive assessment, unless you go to a specialist like a gerontologist or neurologist, is pretty cursory. If you suspect there is anything going on, find a good neurologist. Make yourself familiar with the exam beforehand, and go with her. Sit in the room (I always took it in my head along with her), because you'll know what's nerves, what's her, what's off, more than the doctor will. My mother has always been wacky, but I knew the level of wack was off. Here's a little bit about the testing: https://www.webmd.com/brain/what-is-a-cognitive-test
Google MMSE - Mini Mental Status Exam aka the Folstein Test
I love how the real life pain of your little story is tinged in beauty. Life is like that! That is precisely what feeds me the inspiration I need to show up every day, especially in the mess of it all. Thank you for sharing your gorgeous story Peggy.
Oh, wow, my grandmother was in the first wave of residents at Pennswood Village. She’d gone to George School after she was orphaned, and she was thrilled to be able to return to the area. We scattered her ashes around the large trees on the property. It was truly a wonderful community then, and I’m so very happy to hear it still is. 🥹
Leslie, that is just lovely to hear. I am looking out the window at those ancient trees right now, and thinking of your grandmother. I am looking at the George School campus and a pink and blue spring sunset. Your grandmother, and now we are so very lucky to live here.
Pennswood sounded so nice I looked it up. The only issue I'd have, for my parent or for myself, is that there's no plan for if and when you need more support, like you'd have in assisted living or memory care. I like the age in place concept for a parent, because with cognitive impairment every move shakes things up and pushes the disease further. It doesn't sound like a place that would have worked for your father in law, but, for healthy folk, this sounds delightful.
There are three levels of care at Pennswood Village with the option for a "life care" contract (like long term care insurance) that covers you throughout the journey. 1) Independent Living; 2) Personal Care (need some assistance); 3) Skilled Nursing, which includes hospice care. Memory care is folded in, not separate. You are correct, Jodi: at Pennswood you have to be able to start out in independent living, at least for a year (hopefully more) before you move to personal care or skilled nursing, either temporarily, say after a hospital stay, or for the duration. Sounds like you are a great researcher!
I want to thank everyone who contributed to this chat. I intended to sit down this weekend and respond to everyone this weekend but then I got sandwich-ed between a Minecraft movie showing, 2 baseball games, a tennis practice, and a volleyball game not to mention planning Easter brunch b/c my mom can't host and my brother won't :) But I am so grateful for everyone's time, expertise and empathy--I shared this with the witch who wrote in with the question.
Thank you, too, Claire! I'm so glad you brought this question our way! And thanks, too, to everyone who weighed in. So glad to have you all here, sharing your experiences an resources.
I'm a volunteer Ombudsman (resident advocate) in a nursing home. Many, many, many people overestimate their ability to continue to live at home. And many of their families overestimate their ability to care for their loved ones in home. No-one ever wants to go to a nursing home, with good reason, but there are a couple of criteria that would make moving to a nursing home a requirement.
- First, if it requires 2 people to move them safely; related, if they need assistance with the activities of daily living (ADL) - eating, mobility, toileting (probably the biggest one)... If they can't afford to pay an aide out of pocket to assist them at home, they're pretty much out of luck.
- Dementia, obviously - it's possible, with love and patience, to care for a dementia patient at home, but sometimes it just ceases to be safe for many reasons. That said, if a nursing home promises "dementia care," I'm calling bullshit on that one. Many dementia patients benefit from intensive daily therapy, but I can pretty much guarantee that they are parked in the day room for most of the day.
- And, if your loved one is prone to bedsores, that's a really serious issue that requires nursing. Of course, people develop bedsores in nursing homes, but they are very hard to treat at home.
Thank you. We went through this with my dad before he passed and now my mom. My brother took care of my dad until the end with me also doing extended visits (I lived across the country) and the two person help should have been the tell-tale sign but my brother is very strong and could muscle through moving him when needed.
My parents lived in rural community with little access to services. They had stairs, and my mom was falling a lot. She was struggling to do daily activities and house upkeep was getting to be a lot for my dad. My oldest brother and I kept pushing them to sell the house and move to an independent living facility for seniors. My other two siblings wanted to wait for my parents to make the decision.
2 1/2 years ago, my mom had a series of mini strokes and she landed in the hospital for a week. After this, we finally convinced them to move to an independent living facility though it took 8 months. My mom declined dramatically soon after they moved. We think she was depressed at her living situation. She went into hospice and improved, but just as she was about to be discharged, she broke her hip. She went in and out of rehab facilities and then back home until she was put back into hospice. The care was becoming too much for my 94-year-old father and my brother who lives nearby so we planned to move her to an assisted living facility. It was heartbreaking to think of splitting them up. She died on the day she was supposed to move to it, 14 months after her mini strokes.
Now, my oldest brother and I care for my 94 year-old father who is still at the independent living facility. His health is great, but his memory is really failing and we’re prepared to move him into assisted-living within the next year. Being the medical power of attorney was basically a part-time job with my mom making it hard for me to keep up with my work so I lost business, adding financial stress. An unexpectedly hard part was having siblings who did not always agree and only two of four of us being actively involved.
Here’s what I’ve learned.
Start having those conversations about the living situation sooner rather than later. Better for them to go to independent living too soon rather than too late. Because my parents delayed it too long, the move was chaotic, stressful, and became an emergency.
Many older folks can qualify for PT through Medicare, this is an important benefit. Keeping them strong and stable improves their quality of life and can mean the difference between an independent living facility, assisted living, and a nursing home.
If they have long-term care insurance, start the process to use it as soon as their health declines. It’s long and arduous, but can really help with costs especially if they need to go to a nursing home.
If you have siblings, strengthen those bonds and start having the hard conversations well before your parents decline. Navigating medical systems care facilities, making hard decisions and taking care of your parents is a lot, sibling stress just compounds all of that.
Finally, don't forget to take care of yourself! You'll need those financial, emotional, physical and mental reserves to support them through this.
Even though it’s been heartbreaking and exhausting, I’m honored to walk my parents home and would do it again.
I have been struggling with an obstructive parent in deep denial about her situation. She has dementia and great difficulty with her daily life, (food prep, shopping, meds, hygiene). Finally I engaged Adult Protective Services who told me she had a right to remain in place, I began keeping a diary, The Right to Folly. Three weeks ago she was found on the floor, with bowel incontinence and the stove spewing gas. Thus began a chaotic and stressful scramble for care. There were so many things I wish I knew in advance regarding Advance Directives, Power of Attorney, Capacity Declarations, and on and on. I’ve written about it, offering advice here:
Hi Natalie, I follow you and immensely delight in your posts. I am sorry for what you went through. And I identify with the heavy pain of caring for our elderly. It is very real for me too. Hugs from New Jersey
I wish I could say something encouraging, but if your aging parent is stubborn, refuses to yield to reality, pushes limits of safety, and refuses to tailor their expectations and habits it is a tough gig trying to support them. I’m happy to drive her places or help her do chores, but it’s my mom’s personality that is the hardest part of caring for her. It makes me tired and sad.
This has been my observation, and it is affordability dependent: Go to a continuing care community sooner rather than later. People around eighty who are healthy enough can adjust, make friends, take part in the activities, and enjoy it. At ninety the change is harder. Skilled nursing is tough even in the best places. It's a very busy life, a lot for people who are used to being alone. Aides and nurses in and out of the room all day, communal meals, parking in a lounge facing a TV. It's easier if the old have already been at the place and know people who are either in skilled nursing too or who will visit and take them for a wheelchair walk.
My mother died just after her 100th birthday in an assisted living facility I found that suited her perfectly. I miss her terribly. I was lucky to have her.
My wife died horribly seven years later in home hospice that we agreed would be perfect. I miss her terribly. I was lucky to have her.
After Fran died, I found it extremely comforting when my Cancer Care grief counselor closed our first session, soulfully saying “Irwin, we can’t defeat nature”.
I have no advice other than do the best you can. Then forgive yourself.
Irwin, I am losing my father to dementia right now and so many times throughout this horrible journey I have beat myself up for not showing up better or doing more than I was and I think that your advice to “do the best you can, then forgive yourself” is perfect and exactly right. Thank you for sharing ❤️
Thank you for your heart-open response. I was so lucky with my mother who was totally present and cognitively acute until the day she died. I pray that I have her genes and will be the same for my children. You write beautifully and sensitively about your Dad. If you are imperfect at least you really try. I was as perfect a son and as perfect a husband as I could be. I still lost the two greatest loves of my life. The problem is mortality and the consciousness of it. It’s a heartbreak and a mindfuck. Give yourself a break. ❤️IE
I received an email from Substack giving me info on the ins and outs of how this platform works. Network, pledges, sharing, traffic, etc., that I had really never seriously thought about before.
It made me aware of our interaction some time ago, your kind words, and your very generous offer to pledge to support my work.
I'm also ashamed to not have responded before now. Partly because I didn't feel deserving of your kindness and I didn't feel that I had a platform.
Please accept my sincere apologies.
As it happens, I do have quite a bit to say before I depart this place we call earth. Perhaps in the form of a memoir - ‘the neverending search for peace/love/stability’, or something to that effect.
Janet. No worries. No drama. Perhaps you might like my memoir “Man as Friends”. It’s targeted to men but women like it too. It just might give you the push you need to write your own. It’s a wonderful feeling to approach the end feeling like you’ve said what you needed to say whether anyone reads it or not. I sold two copies last month. 🤷🏼♂️tant pis.
Janet. How’re you doing? I just came across this by chance. Last week, I threw in the towel on a memoir I was writing about Fran and me and cancer when I realized my motives weren’t as pure and altruistic as I claimed them to be. We all fuck up. We all “deserve”forgiveness. Only those who get off on fucking up others don’t. Can you name one? I can. Our Bloviator-in-Chief.
How old are you? I am 73, but was 69 when we had to move my mother to a SNF. Have you dealt with moving yourself or elders in your life to senior housing of some kind? We had to move my mother (age 90 at the time) after she had fallen at home three times. How do you know when it’s the right time? You know when it’s no longer safe for them to be alone, when you are running ragged back and forth to care for them, when you can’t sleep, and when you are worried all the time. How do you know where is the right place? You visit as many as you can. You have to consider the financial implications of each facility, the location (be sure it’s not too far from you), what you see when you tour, and after you talk to some families who have loved ones residing there. How do you persuade an elder who is reluctant to make the move? We told her it was a “temporary” move to help us make a decision when necessary. Then, as time went on, she “forgot” how long she was there and stopped asking to go home. What needs to be considered when moving one parent, but not the other? Separating partners has a significant negative impact on both of them. Got any helpful resources to share on the matter? Not as it pertains to this conversation. But, once your parent is in the facility…here are some notes that I shared with the caregivers on her unit as a “sensitivity/awareness” guide for ALL residents:
SEE THE PERSON FIRST, NOT THE ILLNESS.
Clean her eyeglasses
Keep water in cup; but not filled
Comb her hair
Brush crumbs from her clothes
Turn up the volume on the TV
Keep her hands clean
Use Moisturizer
File/trim and clean under fingernails
Watch the food tray. Is she eating?
Watch her eat. Can she handle utensils?
SMILE
Talk to her; not at her
Ask, “What do you need?”
LOOK at her; acknowledge her existence
DON’T YELL
Talk slowly, but don’t be condescending
Ensure clothes are clean
Show respect
Be sure hearing aids are in and working
Brush/clean dentures
Ensure tray/table is in front of her
Push her close to the table so she can reach items/food
Don’t remove food tray, even after an hour, if she is still eating
Cut food into bite-sized pieces
Ensure she can get food to her mouth
Use plates with edges so food doesn’t fall out
Be aware of where YOU place her eyeglasses
Finally, I hated seeing mom in the nursing home; but we knew it was the safest place for her.
My mother lived in a 55+ home. Even though I'm technically old enough to lease an apartment there, I knew I could never live in that kind of a place each time I visited. For one thing, the entertainment program was straight out of the Springfield Retirement Castle - craft projects and corny live music. If you're 55 today, then you were in your early 20s when Nirvana hit, right? So why settle? I've semi-seriously proposed the idea of making 55+ homes part of the indie-rock touring circuit.
I have so much to say about this, having successfully moved my mom and stepdad to *separate* facilities (he into memory care, her into a lively assisted/independent place). They are both thriving and much much happier than they were before.
Top line advice:
1) begin looking for places *before* it's a crisis. My folks resisted for a long time but I went on my own to look at places and eventually persuaded my mom to talk to me about options "for the future." Then came the inevitable catastrophic fall and I was so glad I had already visited places for them even though my mom never went with me.
2) Make use of professionals like Placement Consultants (free as they get a commission from facilities), certified senior advisors, elder life care managers, etc. These are folks who know the resources available and, in my experience, have so much wisdom and resources to offer. I used a geriatric social worker to help *me* think things through (and also rant about how hard it was) and then hired an Elder Life Care Manager in the town where my folks lived to help me get care for them and strategize on how to get them to accept that the current situation was untenable
3) Keep a dedicated notebook where you can track everything from the daily litany of complaints to the names and numbers of neighbors to what you learn from doctors
4) Get access to bank accounts as soon as you can. If you go to the bank and get your name put on accounts before everything goes to hell, you will be able to pay their bills for them and track weird spending decisions etc. Getting access later is extremely difficult.
5) All transitions have an element of joy and an element of grief and this is no exception. We tend to focus on the grief, but in my parents' case, once the move was over, it has been mostly joy. My parents are happy and healthy, far less isolated, able to see and enjoy each other without my mom having to be a caregiver which was exhausting for her, and they are now close to me so that I can care for them. My mom has new friends and an active social life and no longer spends every phone call complaining about how overwhelmed and exhausted she is. My stepdad loves where he lives and also has new friends.
6) The right place is the place where you can imagine them being happy. I had a terrific Placement Consultant who had me talk at length about each of my parents and then provided me with a list of places that seemed like possible fits, which we then visited together. She had me think through a lot of things I wouldn't have known to think about and her advice was spot on.
7) The right time is *before* the decision is made for you by the inevitable crisis. I tried to get there, and was really close, but in the end, the crisis came first.
Finally, three takeaways for myself and those of us still thinking this stage is in the distant-ish future:
1) Think about where you want to live when you can't live independently, long before you get there. Make a plan. Don't leave it to your kids.
2) Get your documents in order, including powers of attorneys and advance directives, and keep them in one central place that everyone knows about.
3) Get rid of your clutter so your kids don't have to deal with it. Label any heirlooms so people know why they're significant and toss as much paperwork as possible.
It was a little bit of a circuitous process because I didn’t know at the beginning whether I was going to move my parents closer to me or keep them where they were. I started working with an aging life care expert in the Bay Area, then found someone in my parents region using this website.
Then I ended up going back to the first person when I decided to move my folks closer to me.
When I didn’t have a specific recommendation in my parents region, I spoke to everybody listed on the website who was in their region. I worked with one person first, who was very competent but not a great fit with my folks, and then switched to somebody else who was a better match when she became available.
I was estranged from my parents for years, mostly because of my mother. After she died my father and I tentatively resumed a relationship. Two years later he had a major stroke and, long story short, he wound up moving into assisted living in my city. He was a very easy elder to take care of--largely undemanding, nearly always affable. Still, it was a lot of work. But it was also, at least for me, a gift to be able to reconnect with him, take care of him, show him that I wasn't the evil person my mother made me out to be. He died nearly 6 years ago and I still miss him.
That's so lovely to hear, Harriet. Glad you got the opportunity to connect with him that way. You're reminding me of "The Savages" with Phillip Seymour Hoffman and Laura Linney. https://www.imdb.com/title/tt0775529/
I may be biased because I work for one of the largest senior housing companies in the country, but I think these communities are woefully under-rated. They offer socialization, programming, amenities, assistance with activities of daily living and sometimes even care -- all together. It's not your grandmother's "nursing home." These are vibrant, fun, and enriching places to live.
I'm actually writing about this right now ... my parents both went very quickly downhill fairly young (70-72), my mother with COPD that became lung cancer compounded by absolutely overwhelming anxiety, and my father with Parkinsons that he medicated with alcohol until he had a stroke and needed full-time care. He ended up in a nursing home via Medicaid; meanwhile, my mother moved to a fancy assisted living just half a mile away, paid for by her rich college roommate. Dementia made my dad charming and affable; my mother's anxiety and hostility made her impossible to deal with. It was two extremes of eldercare for two years, until they both died in, but not of, Covid. I think we need more community solutions to eldercare that improve nursing home options. People shouldn't feel terrible if they can't provide at-home care to their parents; the American idealization of "independence" really makes no sense in this context. We all need assistance to live!
I'm already so grateful for the feedback, both on behalf of my reader who wrote in but also all of us who entering this phase of caretaking/life. Thanks for being generous with your experiences/empathy. Thank you Sari for letting me in your space!
A pleasure! <3
***If you’re commenting, please also do me the favor of hitting the heart button ❤️ for algorithm purposes. Thank you!***
One of Those Places
By Margaret Mandell
A widow with an eighty-year-old boyfriend John, I wonder how two lovers in the autumn of our lives, clinging to one another against the ravages of age, exit this good earth.
I was in my thirties when my husband’s father had a massive stroke leaving him paralyzed on the right side of his body. Admitted to the only nursing home in his town that accepted Medicaid, he languished there, wheelchair bound, right arm atrophied, fingers curled into a claw that would not open no matter how many times Herb rubbed and stroked his father’s hand during our weekly visits to northern Virginia.
He could speak only out of the left side of his mouth, the right side drooping into a permanent frown. “I pushed the call button ten times to ask for a bed pan,” he would tell us, lisping, “and when the nurse came it was too late. He called me a dirty man and beat me for messing up my sheets. I was so ashamed.”
I had begun researching nursing homes when my mother was still alive. One day, after visiting a relative at her Continuing Care Retirement Center, Mom said in the car-ride home, “If I ever have to go into one of those places, please shoot me.” For years she had advocated for physician-assisted suicide, joined the Hemlock Society, supported Death with Dignity, and re-written her Advanced Directives ten times. All for naught, as she slipped away in the middle of the night at Chestnut Hill Hospital leaving her last Tastykake lemon pie half eaten on her tray table.
My plans are different. I like the idea of being around people. I like the idea of one of those places. I like the idea of a place called Pennswood Village, built on eighty-two acres of Bucks County farmland, preserved in perpetuity as wildflower meadows for pollinators and birds, and woods with walking trails. It could all end right here, I think.
But who are these people with whom we might end our lives? Who would be on the journey with us, by our sides in our final hours, walking us home as I once did for Herb and will do for John when the time comes? As we relinquish our bodies can we still choose the company we keep, our friends for life? And how will we fill our days as time both speeds up and slows down?
I want to know and cherish these people, and for them to know us.
Ruth, we discover, is 98 years old. She greets us as we tour. She can help us register to vote. “Everybody here votes,” she says. “You must vote.”
We meet Verena, a Swiss-born retired physical chemist and chemical engineer, and her dog, Lexie, in the gazebo by the Community Gardens which Verena oversees. She shows us her rhubarb, raspberries, radishes, and watermelon. “Everything here is done by the residents,” she says.
We meet Steve, head of the Birders club, and his wife, Deidre, a retired professor of Africana Studies and co-founder of the Parkinson’s support group. Together they attend La Mesa Española for residents who love practicing their conversational Spanish. We meet Larry, a tenor in the Princeton Pro Musica, who is helping to found a community chorale.
Each time we return we find seniors who are grateful to be alive—people who say we never die, instead we graduate. We’re given pointers on the dreaded cognitive assessment, the SAT of senior living and a requisite for admittance. We’re invited to practice Spanish and yoga, to enjoy a daytime swim.
John auditions to sing in the chorale.
Fresh from the pool, I joke with new locker room friends about our uncooperative bodies and the traffic jam of walkers and mobility devices blocking the lockers. I suggest parking tickets.
Together John and I lift weights and take aerobic dance with Brian, a former Riverdance performer who teaches “Silver Strong” and keeps us laughing. “If it feels too good,” Brian says, “you’re probably doing it wrong.”
It isn’t long before John and I are as certain as any can be about the days ahead. We will move to this place of wildflowers and engaged citizens. We’ll sing, and we’ll dance. We control so little. But we won’t die with the music still inside us. And, if we are lucky, we will graduate. Because the end of life is one continuous commencement ceremony, above all in one of those places.
Peggy, this is beautiful. I was hoping for some responses like this! Thanks for sharing!!
Thanks, Sari. And happy almost sixtieth birthday to you!
Thanks, Peggy! I forgot to celebrate 59-and-a-half on April 2nd!
No, you didn't! Your life is one continuous celebration. Especially when you get to hang out with Abigail Thomas and Rosie O'Donnell. I am so excited that you plan on compiling some of your amazing Oldster submissions into a book--a treasure trove! Party on.
<3
I need pointers on the dreaded cognitive assessment for my mom. Any suggestions/resources you can recommend?
Hoping someone with knowledge chimes in!
I asked my doctor, an internist. I told her I was having short term memory loss and wanted to catch it early (I am 70). She gave me a few tests and I didn’t do so well on the math. She scheduled a brain MRI for me. They think they found a mini-stroke. Next step, neurological diagnosis. My husband and I hope to stay home until the end. If not there’s a good place a few blocks away.
Thanks for sharing, Cynthia.
I’m going through this right now with my mom, age 72. I called her Primary Care clinic and requested a SLUMS test or the like to evaluate her cognitive abilities. You may need a referral to an occupational therapist.
AMy mom is living independently but we worry about her being isolated, especially after COVID. Those years did a number on our elders and I think that sometimes gets overlooked because so much focus went on the kids, understandably.
Oh, that's new to me, the SLUMs but it's very similar to the others, like the MMSE. What annoys me about many of these tests are the "what day of the week is it" kind of question. If Mom has been retired for 20 years, it's perfectly reasonable she wouldn't know what day it was. I'm retired for a year and never know.
I know that our large healthcare network in our city provides cognitive assessment as part of its “is it safe for you to drive still” program. It’s connected to the PT/rehab arm of the network and is for anyone who is recovering from surgery, stroke, or is aging.
That's great.
The cognitive assessment, unless you go to a specialist like a gerontologist or neurologist, is pretty cursory. If you suspect there is anything going on, find a good neurologist. Make yourself familiar with the exam beforehand, and go with her. Sit in the room (I always took it in my head along with her), because you'll know what's nerves, what's her, what's off, more than the doctor will. My mother has always been wacky, but I knew the level of wack was off. Here's a little bit about the testing: https://www.webmd.com/brain/what-is-a-cognitive-test
Google MMSE - Mini Mental Status Exam aka the Folstein Test
I love how the real life pain of your little story is tinged in beauty. Life is like that! That is precisely what feeds me the inspiration I need to show up every day, especially in the mess of it all. Thank you for sharing your gorgeous story Peggy.
Oh, wow, my grandmother was in the first wave of residents at Pennswood Village. She’d gone to George School after she was orphaned, and she was thrilled to be able to return to the area. We scattered her ashes around the large trees on the property. It was truly a wonderful community then, and I’m so very happy to hear it still is. 🥹
Leslie, that is just lovely to hear. I am looking out the window at those ancient trees right now, and thinking of your grandmother. I am looking at the George School campus and a pink and blue spring sunset. Your grandmother, and now we are so very lucky to live here.
Pennswood sounded so nice I looked it up. The only issue I'd have, for my parent or for myself, is that there's no plan for if and when you need more support, like you'd have in assisted living or memory care. I like the age in place concept for a parent, because with cognitive impairment every move shakes things up and pushes the disease further. It doesn't sound like a place that would have worked for your father in law, but, for healthy folk, this sounds delightful.
There are three levels of care at Pennswood Village with the option for a "life care" contract (like long term care insurance) that covers you throughout the journey. 1) Independent Living; 2) Personal Care (need some assistance); 3) Skilled Nursing, which includes hospice care. Memory care is folded in, not separate. You are correct, Jodi: at Pennswood you have to be able to start out in independent living, at least for a year (hopefully more) before you move to personal care or skilled nursing, either temporarily, say after a hospital stay, or for the duration. Sounds like you are a great researcher!
I must have missed that on their website. If that's the case, it seems lovely.
Here's a post about those kinds of facilities ;https://cindymartindale.substack.com/p/continuing-care-retirement-communities-9ab
I want to thank everyone who contributed to this chat. I intended to sit down this weekend and respond to everyone this weekend but then I got sandwich-ed between a Minecraft movie showing, 2 baseball games, a tennis practice, and a volleyball game not to mention planning Easter brunch b/c my mom can't host and my brother won't :) But I am so grateful for everyone's time, expertise and empathy--I shared this with the witch who wrote in with the question.
Thank you, too, Claire! I'm so glad you brought this question our way! And thanks, too, to everyone who weighed in. So glad to have you all here, sharing your experiences an resources.
I'm a volunteer Ombudsman (resident advocate) in a nursing home. Many, many, many people overestimate their ability to continue to live at home. And many of their families overestimate their ability to care for their loved ones in home. No-one ever wants to go to a nursing home, with good reason, but there are a couple of criteria that would make moving to a nursing home a requirement.
- First, if it requires 2 people to move them safely; related, if they need assistance with the activities of daily living (ADL) - eating, mobility, toileting (probably the biggest one)... If they can't afford to pay an aide out of pocket to assist them at home, they're pretty much out of luck.
- Dementia, obviously - it's possible, with love and patience, to care for a dementia patient at home, but sometimes it just ceases to be safe for many reasons. That said, if a nursing home promises "dementia care," I'm calling bullshit on that one. Many dementia patients benefit from intensive daily therapy, but I can pretty much guarantee that they are parked in the day room for most of the day.
- And, if your loved one is prone to bedsores, that's a really serious issue that requires nursing. Of course, people develop bedsores in nursing homes, but they are very hard to treat at home.
This is such useful information, Kelly. Thank you for sharing it!
Thank you. We went through this with my dad before he passed and now my mom. My brother took care of my dad until the end with me also doing extended visits (I lived across the country) and the two person help should have been the tell-tale sign but my brother is very strong and could muscle through moving him when needed.
Good that he’s able to handle so much of the care. Good luck.
My parents lived in rural community with little access to services. They had stairs, and my mom was falling a lot. She was struggling to do daily activities and house upkeep was getting to be a lot for my dad. My oldest brother and I kept pushing them to sell the house and move to an independent living facility for seniors. My other two siblings wanted to wait for my parents to make the decision.
2 1/2 years ago, my mom had a series of mini strokes and she landed in the hospital for a week. After this, we finally convinced them to move to an independent living facility though it took 8 months. My mom declined dramatically soon after they moved. We think she was depressed at her living situation. She went into hospice and improved, but just as she was about to be discharged, she broke her hip. She went in and out of rehab facilities and then back home until she was put back into hospice. The care was becoming too much for my 94-year-old father and my brother who lives nearby so we planned to move her to an assisted living facility. It was heartbreaking to think of splitting them up. She died on the day she was supposed to move to it, 14 months after her mini strokes.
Now, my oldest brother and I care for my 94 year-old father who is still at the independent living facility. His health is great, but his memory is really failing and we’re prepared to move him into assisted-living within the next year. Being the medical power of attorney was basically a part-time job with my mom making it hard for me to keep up with my work so I lost business, adding financial stress. An unexpectedly hard part was having siblings who did not always agree and only two of four of us being actively involved.
Here’s what I’ve learned.
Start having those conversations about the living situation sooner rather than later. Better for them to go to independent living too soon rather than too late. Because my parents delayed it too long, the move was chaotic, stressful, and became an emergency.
Many older folks can qualify for PT through Medicare, this is an important benefit. Keeping them strong and stable improves their quality of life and can mean the difference between an independent living facility, assisted living, and a nursing home.
If they have long-term care insurance, start the process to use it as soon as their health declines. It’s long and arduous, but can really help with costs especially if they need to go to a nursing home.
If you have siblings, strengthen those bonds and start having the hard conversations well before your parents decline. Navigating medical systems care facilities, making hard decisions and taking care of your parents is a lot, sibling stress just compounds all of that.
Finally, don't forget to take care of yourself! You'll need those financial, emotional, physical and mental reserves to support them through this.
Even though it’s been heartbreaking and exhausting, I’m honored to walk my parents home and would do it again.
Suzan, thank you so much for sharing your experience, and what you've learned. <3
I have been struggling with an obstructive parent in deep denial about her situation. She has dementia and great difficulty with her daily life, (food prep, shopping, meds, hygiene). Finally I engaged Adult Protective Services who told me she had a right to remain in place, I began keeping a diary, The Right to Folly. Three weeks ago she was found on the floor, with bowel incontinence and the stove spewing gas. Thus began a chaotic and stressful scramble for care. There were so many things I wish I knew in advance regarding Advance Directives, Power of Attorney, Capacity Declarations, and on and on. I’ve written about it, offering advice here:
https://readwriteeat.substack.com/p/welcome-to-bummerville
This has been one of the worst experiences of my life, expensive and chaotic. I encourage people to make decisions early to avoid a 911.
So sorry to hear, Natalie. Thanks for the link and advice.
Natalie, thinking of you. Having made a few calls about my mom with dementia, it's hell. I'm so sorry.
Hi Natalie, I follow you and immensely delight in your posts. I am sorry for what you went through. And I identify with the heavy pain of caring for our elderly. It is very real for me too. Hugs from New Jersey
My heart is with you and your mother, Natalie. I can only imagine the pain and frustration you've experienced.
Thank you. It’s so rough! xN
I wish I could say something encouraging, but if your aging parent is stubborn, refuses to yield to reality, pushes limits of safety, and refuses to tailor their expectations and habits it is a tough gig trying to support them. I’m happy to drive her places or help her do chores, but it’s my mom’s personality that is the hardest part of caring for her. It makes me tired and sad.
<3
I feel this Beth <3
This has been my observation, and it is affordability dependent: Go to a continuing care community sooner rather than later. People around eighty who are healthy enough can adjust, make friends, take part in the activities, and enjoy it. At ninety the change is harder. Skilled nursing is tough even in the best places. It's a very busy life, a lot for people who are used to being alone. Aides and nurses in and out of the room all day, communal meals, parking in a lounge facing a TV. It's easier if the old have already been at the place and know people who are either in skilled nursing too or who will visit and take them for a wheelchair walk.
Thank you for this helpful information, Alice!
My mother died just after her 100th birthday in an assisted living facility I found that suited her perfectly. I miss her terribly. I was lucky to have her.
My wife died horribly seven years later in home hospice that we agreed would be perfect. I miss her terribly. I was lucky to have her.
After Fran died, I found it extremely comforting when my Cancer Care grief counselor closed our first session, soulfully saying “Irwin, we can’t defeat nature”.
I have no advice other than do the best you can. Then forgive yourself.
That's pretty great advice. <3
Irwin, I am losing my father to dementia right now and so many times throughout this horrible journey I have beat myself up for not showing up better or doing more than I was and I think that your advice to “do the best you can, then forgive yourself” is perfect and exactly right. Thank you for sharing ❤️
Dear Danne
Thank you for your heart-open response. I was so lucky with my mother who was totally present and cognitively acute until the day she died. I pray that I have her genes and will be the same for my children. You write beautifully and sensitively about your Dad. If you are imperfect at least you really try. I was as perfect a son and as perfect a husband as I could be. I still lost the two greatest loves of my life. The problem is mortality and the consciousness of it. It’s a heartbreak and a mindfuck. Give yourself a break. ❤️IE
Hello Irwin. I hope you are doing well.
I received an email from Substack giving me info on the ins and outs of how this platform works. Network, pledges, sharing, traffic, etc., that I had really never seriously thought about before.
It made me aware of our interaction some time ago, your kind words, and your very generous offer to pledge to support my work.
I'm also ashamed to not have responded before now. Partly because I didn't feel deserving of your kindness and I didn't feel that I had a platform.
Please accept my sincere apologies.
As it happens, I do have quite a bit to say before I depart this place we call earth. Perhaps in the form of a memoir - ‘the neverending search for peace/love/stability’, or something to that effect.
Sincerely,
Janet Coburn
Janet. No worries. No drama. Perhaps you might like my memoir “Man as Friends”. It’s targeted to men but women like it too. It just might give you the push you need to write your own. It’s a wonderful feeling to approach the end feeling like you’ve said what you needed to say whether anyone reads it or not. I sold two copies last month. 🤷🏼♂️tant pis.
Janet. How’re you doing? I just came across this by chance. Last week, I threw in the towel on a memoir I was writing about Fran and me and cancer when I realized my motives weren’t as pure and altruistic as I claimed them to be. We all fuck up. We all “deserve”forgiveness. Only those who get off on fucking up others don’t. Can you name one? I can. Our Bloviator-in-Chief.
How old are you? I am 73, but was 69 when we had to move my mother to a SNF. Have you dealt with moving yourself or elders in your life to senior housing of some kind? We had to move my mother (age 90 at the time) after she had fallen at home three times. How do you know when it’s the right time? You know when it’s no longer safe for them to be alone, when you are running ragged back and forth to care for them, when you can’t sleep, and when you are worried all the time. How do you know where is the right place? You visit as many as you can. You have to consider the financial implications of each facility, the location (be sure it’s not too far from you), what you see when you tour, and after you talk to some families who have loved ones residing there. How do you persuade an elder who is reluctant to make the move? We told her it was a “temporary” move to help us make a decision when necessary. Then, as time went on, she “forgot” how long she was there and stopped asking to go home. What needs to be considered when moving one parent, but not the other? Separating partners has a significant negative impact on both of them. Got any helpful resources to share on the matter? Not as it pertains to this conversation. But, once your parent is in the facility…here are some notes that I shared with the caregivers on her unit as a “sensitivity/awareness” guide for ALL residents:
SEE THE PERSON FIRST, NOT THE ILLNESS.
Clean her eyeglasses
Keep water in cup; but not filled
Comb her hair
Brush crumbs from her clothes
Turn up the volume on the TV
Keep her hands clean
Use Moisturizer
File/trim and clean under fingernails
Watch the food tray. Is she eating?
Watch her eat. Can she handle utensils?
SMILE
Talk to her; not at her
Ask, “What do you need?”
LOOK at her; acknowledge her existence
DON’T YELL
Talk slowly, but don’t be condescending
Ensure clothes are clean
Show respect
Be sure hearing aids are in and working
Brush/clean dentures
Ensure tray/table is in front of her
Push her close to the table so she can reach items/food
Don’t remove food tray, even after an hour, if she is still eating
Cut food into bite-sized pieces
Ensure she can get food to her mouth
Use plates with edges so food doesn’t fall out
Be aware of where YOU place her eyeglasses
Finally, I hated seeing mom in the nursing home; but we knew it was the safest place for her.
This is such great advice. Thanks for it, and your story.
This is a great list of reminders. Thanks for sharing!
You are welcomed!
My mother lived in a 55+ home. Even though I'm technically old enough to lease an apartment there, I knew I could never live in that kind of a place each time I visited. For one thing, the entertainment program was straight out of the Springfield Retirement Castle - craft projects and corny live music. If you're 55 today, then you were in your early 20s when Nirvana hit, right? So why settle? I've semi-seriously proposed the idea of making 55+ homes part of the indie-rock touring circuit.
Great idea. I keep saying I need to create Oldster Manor for aging Gen Xers.
It’s the contemporary version of cooperative communes of the 60-70s.
I dream of building “Away”, a senior neighborhood for childless single seniors.
Absolutely! I'm there. I'm an AWoK (Aging without kids). Sign me up
Amen. We often talk about a commune. Or a college dorm for seniors.
I have so much to say about this, having successfully moved my mom and stepdad to *separate* facilities (he into memory care, her into a lively assisted/independent place). They are both thriving and much much happier than they were before.
Top line advice:
1) begin looking for places *before* it's a crisis. My folks resisted for a long time but I went on my own to look at places and eventually persuaded my mom to talk to me about options "for the future." Then came the inevitable catastrophic fall and I was so glad I had already visited places for them even though my mom never went with me.
2) Make use of professionals like Placement Consultants (free as they get a commission from facilities), certified senior advisors, elder life care managers, etc. These are folks who know the resources available and, in my experience, have so much wisdom and resources to offer. I used a geriatric social worker to help *me* think things through (and also rant about how hard it was) and then hired an Elder Life Care Manager in the town where my folks lived to help me get care for them and strategize on how to get them to accept that the current situation was untenable
3) Keep a dedicated notebook where you can track everything from the daily litany of complaints to the names and numbers of neighbors to what you learn from doctors
4) Get access to bank accounts as soon as you can. If you go to the bank and get your name put on accounts before everything goes to hell, you will be able to pay their bills for them and track weird spending decisions etc. Getting access later is extremely difficult.
5) All transitions have an element of joy and an element of grief and this is no exception. We tend to focus on the grief, but in my parents' case, once the move was over, it has been mostly joy. My parents are happy and healthy, far less isolated, able to see and enjoy each other without my mom having to be a caregiver which was exhausting for her, and they are now close to me so that I can care for them. My mom has new friends and an active social life and no longer spends every phone call complaining about how overwhelmed and exhausted she is. My stepdad loves where he lives and also has new friends.
6) The right place is the place where you can imagine them being happy. I had a terrific Placement Consultant who had me talk at length about each of my parents and then provided me with a list of places that seemed like possible fits, which we then visited together. She had me think through a lot of things I wouldn't have known to think about and her advice was spot on.
7) The right time is *before* the decision is made for you by the inevitable crisis. I tried to get there, and was really close, but in the end, the crisis came first.
Finally, three takeaways for myself and those of us still thinking this stage is in the distant-ish future:
1) Think about where you want to live when you can't live independently, long before you get there. Make a plan. Don't leave it to your kids.
2) Get your documents in order, including powers of attorneys and advance directives, and keep them in one central place that everyone knows about.
3) Get rid of your clutter so your kids don't have to deal with it. Label any heirlooms so people know why they're significant and toss as much paperwork as possible.
How did you find a placement counselor?
It was a little bit of a circuitous process because I didn’t know at the beginning whether I was going to move my parents closer to me or keep them where they were. I started working with an aging life care expert in the Bay Area, then found someone in my parents region using this website.
https://www.aginglifecare.org/
Then I ended up going back to the first person when I decided to move my folks closer to me.
When I didn’t have a specific recommendation in my parents region, I spoke to everybody listed on the website who was in their region. I worked with one person first, who was very competent but not a great fit with my folks, and then switched to somebody else who was a better match when she became available.
Thanks! This is very helpful.
I was estranged from my parents for years, mostly because of my mother. After she died my father and I tentatively resumed a relationship. Two years later he had a major stroke and, long story short, he wound up moving into assisted living in my city. He was a very easy elder to take care of--largely undemanding, nearly always affable. Still, it was a lot of work. But it was also, at least for me, a gift to be able to reconnect with him, take care of him, show him that I wasn't the evil person my mother made me out to be. He died nearly 6 years ago and I still miss him.
That's so lovely to hear, Harriet. Glad you got the opportunity to connect with him that way. You're reminding me of "The Savages" with Phillip Seymour Hoffman and Laura Linney. https://www.imdb.com/title/tt0775529/
I may be biased because I work for one of the largest senior housing companies in the country, but I think these communities are woefully under-rated. They offer socialization, programming, amenities, assistance with activities of daily living and sometimes even care -- all together. It's not your grandmother's "nursing home." These are vibrant, fun, and enriching places to live.
That's good to hear.
I'm actually writing about this right now ... my parents both went very quickly downhill fairly young (70-72), my mother with COPD that became lung cancer compounded by absolutely overwhelming anxiety, and my father with Parkinsons that he medicated with alcohol until he had a stroke and needed full-time care. He ended up in a nursing home via Medicaid; meanwhile, my mother moved to a fancy assisted living just half a mile away, paid for by her rich college roommate. Dementia made my dad charming and affable; my mother's anxiety and hostility made her impossible to deal with. It was two extremes of eldercare for two years, until they both died in, but not of, Covid. I think we need more community solutions to eldercare that improve nursing home options. People shouldn't feel terrible if they can't provide at-home care to their parents; the American idealization of "independence" really makes no sense in this context. We all need assistance to live!
Well said. Thanks, Beth. I look forward to reading what you’re writing on this.