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Sep 4Liked by Courtney Martin

Gorgeous piece, Courtney. I'm 66 and dealing with my dad's dementia, so long past the sandwich generation. I have so much admiration for what you're doing and for the loving way you write about it. My dad, who is 93, is in memory care (a wonderful place -- they do exist) and taking a very mild anti-anxiety medication, which helps a lot. I don't see him every day, but I struggle every day with my husband and sister to manage his questions, his finances, his health care, the emptying and sale of his condo. I think most people don't have the team you've assembled to take care of a loved one with dementia or the money to cover the costs of memory care. They just do it. Too many build up a lot of resentment, lose a lot of themselves, quit jobs to make it slightly more manageable. Some see the pearl, some don't. Many become very isolated. I agree that we have to bring this experience, this struggle, out into the open. And we need many more affordable, caring ways to deal with this epidemic.

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Yes yes yes to all of this, Stefanie. As always, when I have a beautiful, hard experience I always start to think about the systemic and cultural implications of what I'm experiencing (and fortunate enough NOT to experience). Thank you for surfacing this.

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Can you share the name of the facility (or DM it)? It might a long shot that we are in the same state, but… thank you in advance! 🥰

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Hi Elle, I'm in the Maryland suburbs of DC. The place is Kensington Park Senior Living, where they have independent living, assisted living, plus 3 distinct levels of memory care, the first one within assisted living. Did not see anything like this anywhere else locally.

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Thank you. I’m not in MD, but this could help me research becuz I can compare. (I’m in CT.) You had also mentioned the need on this country for affordable options—that is also a challenge in up against. It’s so many so many things…

Thanks for your quick response! Enjoy the rest of your weekend.

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Sep 4Liked by Courtney Martin

Courtney - I so love and honor what you are doing and the writing about your family's experiences. It is very much needed now. Please keep doing it even though I know it's hard to write about and hard to find time. We spent 10 years with my mom at home with dementia while our daughter was growing up and the love and understanding that we all gained during that time has made our child a strong and caring adult. Also, there are nursing homes that do provide incredible care. Not many, but they exist. I looked at literally 50 before I found one - my mother had been "escaping" from our house and was convinced that someone was trying to kill her - it was too dangerous and more than we could handle. Fortunately, we found a safe, loving place where they were very skilled at balancing her meds. We integrated there with this big amazing family of nurses, patients and families like us and it was a godsend. I can honestly say that my mom's last years were her happiest. It can be done, it just takes people who care. And there are still people who care. Bless you and your family! Thank you so much!

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This is really so comforting and hopeful for me to read. Thank you, Victoria!

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Hello! You had mentioned looking at so many facilities before you finally found one. As I asked another writer above, can you share the name of the facility (or DM it)? Thank you in advance! 🥰

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Sep 4Liked by Courtney Martin

Courtney, I just wanted to say how deeply moved by and grateful I am for your 'close to the bone' writing about this tender and sacred and undoing and life-changing/life-giving time you're living within your family. I serve a small UU congregation in downeast Maine and I find I want them to read EVERY ONE of your columns. Thank you for sharing your writing and your love and your want for ALL of us to be more aware of the reality of dementia and parenting and staying engaged in the world.

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Thank you so much, Sara. I'm very moved that you would want to share this with your congregation. I hope it brings someone solace.

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Sep 4Liked by Courtney Martin

Courtney- I have been following along as you write about your Dad because, honestly, I am looking for answers in my own path forward as caregiver for my mom. Like you, I have a supportive family but we are strewn across the country and my mom has lived on her own for the past 20 years after my dad died from cancer. She will likely live with us for a short time, but how, in our small S.F. house, will we manage as 5 people and as her condition becomes unsafe? I don’t know. My mom’s dementia journey has made me doubt so many of my life decisions (moving far away!), even though life experience so far has taught me that our decisions don’t always offer us control.

The kind of sturdy, loving care your dad is receiving is what I want for everyone and the terrifying reality is that, for most, it’s impossible to find or provide. When I think about how many people and families will experience dementia in an environment of diminished choices and lack of care, I feel so sad and hopeless. This is not something people can do alone. I am grateful to you for talking about it and creating a space for conversation and awareness. And there are others, too, doing the work to bring us together and know more: the Daughterhood podcast and support groups are incredible, and I highly recommend for anyone going through this. Maybe I first heard about that community here and, if so, thank you!

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"Diminshed choice" is such a haunting phrase here and a thousand times yes. And the lack of good choices is deeply related to even more foundational challenges - which is that our society expects aging and illness to be something that is navigated, funded etc. individually. Why don't we have a society designed for the inevitable reality of aging and death for all of us?

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Sep 5Liked by Courtney Martin

I hope that is a question that gets asked over and over, because it is the right question.

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Thank you for mentioning Daughterhood. I will check this out.

I concur with your comments about diminished choices.

And to answer Courtney’s question about why we don’t have a society designed to support this inevitable reality, I think it’s because our society is designed to support capitalism at all costs. The things that don’t support that (most definitely childcare, education, elder care) is left to the ‘nuclear family’ which means it’s atomized to a tiny sector—and as many of posted here, we all have different things going on, different resources (both of the people AND money kind).

I’m wondering if it’s at the state level that can most be challenged to consider these things.

I don’t know. I don’t really have an answer. I certainly don’t have any hope of there being any positive changes. And as that goes, I fear for the all of us who may meet these crises in our own lives. The future doesn’t look much better, I can tell you that. 😕

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Yes! Death and decline are generally NOT in the conversation of most young people and yet it’s there. My father in law died in our home when my daughter was four. My mom died of Alzheimer’s after 12 years of living at home, moving to a memory care, back home and then in a small end of life home. When my step dad thought he couldn’t do it anymore I was ready to be my mom’s main caregiver. Theres a book called the 36 hour day- about this kind of caregiving. Courtney, I agree the economic and psychic impacts of elder care, not to mention dementia are off the charts. Yesterday I heard about one of our African American Berkeley families who can no longer afford their assisted living facility and have no choice but to come home into the care of their only son. Thank you for lifting it up and for doing the courageous brilliant loving thing you are doing.

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Thank you, Cynthia! I have checked out that book - found it helpful in ways, and too clinical in others. Have you read On Vanishing? I loved it so much. Much less practical but very beautiful.

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This is so beautiful Courtney, and I think this absence of full truth is like so many parts of our culture that media declines to put a frame around or that people choose not to share and lift up into the public consciousness.

We watch so much fluff and nonsense and hype-filled drama while so much else of equal or greater importance lies draped beneath. Such is the nature of the Unhealthy Default Reality.

Thank you for taking time to share your real, nuanced human experience. And for doing it with your exceptional sensitivity and skill.

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Thank you Pilar - love that "Unhealthy Default Reality." The non-reality reality that is everywhere - one of my obsessions is countering it.

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Mine, too! All of my current work focuses on helping people see, navigate, challenge, and escape from it. #healthydeviantsunite #subverttheunhealthydefaultreality

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Sep 4Liked by Courtney Martin

Dear Courtney, loving this thread and your sharing a picture of your life. I was speaking to a friend yesterday about the realities of being in this sandwich. She reflected that caring for our kids when they were little was hard and taxing but filled with possibility and joy. The caretaking of aging parents can be sad and lacks the future-oriented exhilaration. I’m looking for the joys of the present moment, the hope of the right now, the hard right now, the connected right now. Thanks for giving some beautiful words to this.

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Thank you for commenting - such a valuable addition to the conversation here. How do we infuse elder caregiving with joy, given its inevitable sadnesses? I'm going to hold this close.

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Sep 4Liked by Courtney Martin

My mother-in-law passed from alzheimer’s in July. She was young (72) and had been diagnosed at 65 and was at home with my father-in-law (plus supports) until the last 16 months when she needed round the clock care and was losing mobility. The bouts of sundowners grew worse and worse until they grew better, but the growing better coincided with even less of HER left present. It is a heartbreak and a mercy to see her pass.

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Sending love and solidarity. I know even the agitation is a sign of life.

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Sep 4Liked by Courtney Martin

I just got off the phone with a sandwich caregiver situation when I stumbled on this piece. My friend’s mom was having evening hallucinations and fell while she was out of town. She, my friend, came down with pneumonia. While I think we are hardwired for compassion, I struggle with what I witness rt now or don’t in our US culture. think Margaret Mead said discovering a healed broken bone from a long ago civilization was a sign that the civilization could survive. Because this would require the help of others ..

I think or feel disease and illness is done in the shadows in the US. People don’t want to see it or hold discomfort. Our healthcare providers are good people, but the system overindexes them in a bad way to focus on “efficiencies”. Please keep writing about this for you and us.

From Maria Popova: “When we approach one another with curiosity and care without the expectation of curing each other, something paradoxical and miraculous may happen — the care may become the cure. The Latin of the word “cure” — cūra — means “anxiety,” which is also the root of “care” (to have cares, to be anxious), “curiosity” (an anxious inquisitiveness), and “secure” (without anxiety and care).”

Peace be with you, your dad and all who love him

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Thank you so much. Maria is a friend, so this feels extra sweet. Sending solidarity and healing vibes to your friend.

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So beautiful. But more, I'm glad this piece of writing exists, so other people don't feel so alone in this.

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Sep 4·edited Sep 6Liked by Courtney Martin

“Imagination”…you nailed it. A strong interest in the arts doesn’t hurt either. Thank goodness I could be part actress( without any training) and creatively lie, without guilt, always moving forward by the seat of my pants, to help redirect behaviors and give emotional support to someone I care about, thank goodness for creative walks and drives that temporarily help, thank goodness we can journal, cry, laugh, and that we can support one another with ideas and respite, thank goodness for ongoing research that ultimately loops back to the creative caregivers, as we are the ones with the answers, many of which are so specific to the ones we love and care for,

Thank goodness for you, who is so stalwart and creative and ever so filled with love, despite the painful moments. For me, this requires a lift so intense, that I and many I have known have felt crushed broken and torn, yet we still resume with a renaissance of spirit and mind, from seemingly tapped out places, as we do this with the entirety of our being, one moment, one day at a time,..thank goodness for the resilience inside of children, and knowing deep inside that they are seeing unconditional and compassionate love, that is so recognizable that they feel safe and know

they can count on family members and the community, no matter what, thank goodness you are sharing this post. I am so moved and strengthened by your sharing. I am imagining beautiful moments and strength of spirit from within, for you, for all, and for me. May there be so much more beautiful imaginative caring and sharing in the world.

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Sep 4Liked by Courtney Martin

yes, this needs to be told---sarah polley, a canadian film maker did a film which starred julie christie as a patient with memory issues---i believe it was called, 'away from her'' ? It was a brilliant film btw. My mother developed cognitive impairment in the last 10 years of her life; it was difficult because she was a person who was normally as sharp as a tack. i was the first to get the book, the 36HOUR day and although reproved by a sister for having done so, found it helpful in dealing with mom's day-to-day changes. I don't know why she found it so distasteful---afraid because she is likely to have those isssues herself.........possibly. i thank you for bringing up my next read---never heard of that one and i am not afraid of going into that long dark night....courtney, you are a rock star to be bringing this topic out into the open.

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Sep 4Liked by Courtney Martin

I too thought of that film, but like so much else that happened in the 15 years I spent dealing with my parents' dementia, I couldn't recall whether it included sundowning scenes. I know that something I've seen does. . .

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Sep 4Liked by Courtney Martin

I think you are right that finding those you speak with unaware of what it is like to live as a caretaker of someone with dementia or what sun-downing is is partly related to your age. We oldies-but-goodies are more intimately familiar with both.

I think too that people may not talk about this part of life because 1) they don't want to burden others whose lives have their own if different difficulties, and 2) they are trying to protect the dignity and privacy of the afflicted person and the other caretakers.

It is a little bit like not talking about the details and flavor of living with someone who is extremely mentally ill. I know my loved ones would not want/have wanted it- in my particular case.

Those you know who have been hospitalized for something old people sometimes have (like a heart event or stroke) will know from hearing others on the ward what sundowning is.

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Yes, I know there are ethical complexities to telling the truth of our stories, but I also think there are ethical complexities to NOT telling the truth of our stories. It perpetuates the sense of isolation and loneliness.

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Sep 4Liked by Courtney Martin

Yep, so friggin hard! Talking about it is making us and the people we care for vulnerable in a shitty culture that can't handle fragility, dependency, or death...and not talking about it leaves that system intact which hurts both the people we care for and those of us giving the care.

I really do hope we can build a world in which people with dementia, and everyone else with cognitive or psychological challenges, have a place in public, and are not a source of shame or additional stigma-based stress for those caring for them. this liberates everyone! I really respect caregivers like you who are pulling a chair up at the proverbial table and making it clear that we all belong there.

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Thanks bud. This means a lot.

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Sep 7Liked by Courtney Martin

Honestly, Courtney, society chooses not to know because it scares the hell out of us and we would rather NOT know. Mass denial. I so appreciate your compassion and writing about this. Thank you, good friend.

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"The drive is the enduring." Yes.

My parents are on the other side of the country from me, so my caregiving for them happens in condensed bursts when I go out to visit. It's so intense and overwhelming to be plunged entirely into that world for two or three weeks at a time, and then re-emerge to fly back across the country to my other family, my spouse and kid. The two worlds never touch.

I have been reading a lot of 1920s British detective fiction and I am struck by how they refer to dementia as "becoming child-like." There is a poetic truth to that, although of course it's much more complex than that.

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And of course -- two or three weeks with my parents never feels like enough, while two or three weeks away from my spouse and child feels infinitely too long

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Ugh, I can only imagine. I don't think there's an easy way to take this journey, but sending lots of solidarity for yours.

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Sep 7·edited Sep 7Liked by Courtney Martin

The comments I’ve read summarize what I would have written. Thank you for including photos. I love seeing your dad, and the one of your parents holding hands—brought smiles and tears. ❤️ to you, yours, and to you wonderful mom and dad. Give them loving hugs from me.

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