'You Each Deserve Your Own Life' By Jodi Sh. Doff

Letters from a Caregiver Winter Season 2025/26

The ‘Letters from a Caregiver’ Collaboration series continues with this Winter 2025/26 Season.

Hello, Dear Readers, I hope you’re well. A warm welcome to new Carer Mentor subscribers. You can read about me here: Who Started Carer Mentor and Why?

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In the US, it’s National Family Caregiver’s Month

Caregiver Action Network is the nationally recognized leader of National Family Caregivers Month (NFC Month), working with partners and advocates nationwide to highlight caregivers’ challenges, celebrate their dedication, and connect them to the resources they need.

About National Family Caregivers Month

National Family Caregivers Month is a time to:

• Raise awareness of the important role family caregivers play in our healthcare system.

• Educate communities about the challenges caregivers face and the support they need.

• Connect caregivers with trusted resources that make their journey a little easier.

• Honor caregivers for their commitment, resilience, and love.

Since Caregiver Action Network’s founding in 1994, we have advocated for the recognition of family caregivers. And under our leadership, November has been recognized as National Family Caregivers Month since 1997 through presidential proclamations, nonprofit campaigns, and community events nationwide. Each year features a unique theme chosen by Caregiver Action Network to spotlight an important issue in caregiving.

Our 2025 theme, Plug-in to Care, focuses on connection [click the link to go to the resources]—helping caregivers easily “plug in” to vital support tools, trusted networks, and educational resources that can make the caregiving journey less overwhelming and more supported.

You can find a series of videos on the YouTube: Caregiver Action Network channel.

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Letters from a Caregiver

Last week, I wrote the introduction to this new season of letters. It’s a time when emotions can swirl, and fear stemming from uncertainty can rise; it can all feel too much amid the stress of holiday traditions and expectations. For those of us who can feel the early ripples of grief reappearing, I see you—heartfelt resonance and warm wishes.

Please remember to take a breath and pause. If we get a bit more snappy or feel a funky feeling, you could be hangry, you could be tired after a big ass year, but you could also be feeling a loss, a sadness, or someone’s absence more keenly. Grief comes from many different sources.

I’ve started reminding myself of the small rituals of self-compassion that give me comfort. What are yours?

If you need some ideas for music, TV shows, or films to distract, transport you for a while, or feel the feels, explore the ComfortZone articles I started last year.

As we enter this second season of ‘Letters from a Caregiver’, I’m looking forward to discovering more diverse caregiving experiences, holding space with empathy and compassion, and endeavouring to handle each with the care and respect it deserves.

This season can be fraught, but I hope this new flurry of letters brings some heartfelt empathy, companionship and light on the path you walk ahead.

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This week’s letter is by Jodi Sh. Doff, whom I met via Substack back in 2023.

If you haven’t subscribed to her publication, I highly recommend reading, ‘The Long Goodbye.’ Jodi shares the real deal about caring for her mother. Through her articles, I’ve learnt, laughed, stolen her prune recipe and feel grateful for her badass bravery. [Browse the resources she put together here, and discover her doppelganger connection to Cher here!].

Big hugs and love, Jodi. Thanks for accepting my invitation to write a letter!

Author Bio: Jodi Sh. Doff is a NYC-based sixty-something, single, childless, sober writer who’s spent years writing about sex, drugs, and drunkenness. For the last 10 years she’s been the primary caregiver for elderly mother, as she descends slowly into dementia. [ Publication: The Long Goodbye ]

You Each Deserve Your Own Life

It’s 2025, I’m 68 years old & Mom has been living with me for over seven years. In 2017, my 61-year-old self believed the doctors when they said Mom only had a year or two left before the dementia took her entirely. I’m hoping time is linear but not restrictive, that maybe there’s an off chance and a fluctuation in the time/space continuum and 61-year-old me will get this letter. Maybe I can convince myself to choose a different next right thing, a different win/win. There are no wrong choices when you act from love, but 68-year-old me would really like to not feel like 75-year-old me.

Dear 61-year-old Jodi -

You did a beautiful thing, bringing Mom into your home after she broke her back. If you’d bothered to ask me, I’d have told you to just bite the financial bullet. Pay for around-the-clock care for a month until her back heals and keep her in the assisted living where her friends are. But you didn’t ask, and you didn’t listen to everyone in your caregiver support group who said don’t do it, so you prolly wouldn’t have listened to me and what’s done is done and your heart was in the right place.

I know you think you know everything and what’s best, but this is uncharted territory for you. You have no experience at caregiving or parenting — which, face it, is exactly what you’re doing, parenting your mother. Our mother. So confusing, reaching across time. Anyway, sometimes consider talking to people with experience. At least listen to what they have to say.

But now, it’s been a few months and she’s walking as well as she was before the incident, why are you still keeping her with you? Sure, she’s not eager to move into someplace new, scared she won’t fit in, won’t know anyone. Change is frightening for everyone, more so when you’re losing control of your memory, mind, and life. Remember every time you moved from one grade to the next in elementary school? Remember how quickly she adapted when you first moved her into the Tanglewood facility? By the second day, she had a posse, but she can’t remember that. That’s part of the dementia, the memory loss, confusion and fear. She blossomed in Tanglewood, and babygirl, she’ll do the same in the next one.

Letting go of her is frightening, too, but it’s your job to make the right decisions. This time chose one with memory care on site so she can age in place. I understand your hesitation, but let me tell you what’s going to happen.

If you follow my advice, and you should because I know what’s coming, and I just told you to listen to people with experience, you’ll move her into the assisted living in Kew Gardens. It’s close enough that you can be there every day if you want to. It’s as beautiful as Tanglewood was. She’ll make her mark and find friends because she’s silly and warm and a lovable sort of lady. She’ll be happy and social and when she forgets who you are—yeah, that’s coming—it won’t matter. She’ll be surrounded by other people who are forgetting things like that every day.

Here’s something else you don’t know. A world-wide epidemic is coming. Thousands of people will die. Nursing homes and long-term care facilities will shut down and quarantine and you won’t be able to visit, which sounds very terrible. It’s very possible that Mom will be one of the old folks to die from this virus. But, would that be so terrible?

She’s going to die someday. Remember the years the two of you talked about it? Reading Final Exit together, making plans, doing dry runs? Sorting the pills she’s hoarded for years to take herself out on her own timetable? Why shouldn’t she be somewhere lovely surrounded by friends up until the end?

If you insist on keeping her home, it’ll be a quarantine of two. No aides. No help. No support. You’ll both get the virus. It’ll be months before home health aides come back and you’ll still be on your own here and there as this one or that one tests positive and can’t come in.

Your lives will shrink. She will never rebound to pre-quarantine days. Only two people will ever come visit her, no matter how long she lives with you. Two. The few who’d been calling will stop as her dementia progresses, shrinking her world even further. And you babe, your dream of traveling will gather dust on a shelf of not being able to leave her because you’re the night nurse, every night. Year after year. After year. It will go on longer than you could have imagined.

You’ll have to give up any evening activities. All overnight activities.

Your love will deepen, but so will your resentments. Your dreams, deferred.

Please, listen to me and you’ll get to still be her daughter, and she’ll be somewhere safe, with 24-hour care, planned activities, games and fun, friends waiting to be made. You can be there as much, or as little as you want. You will each have your own full lives. You won’t be trapped by obligation. And she won’t be trapped by the abandonment of friends.

When her friends in the facility die or move elsewhere (somewhere cheaper), she’ll forget quickly, but new old folks will be coming to fill the void. She will play hostess and take them under her wing because that’s who she is.

I’m begging you, I know she’s resistant to moving back. I know you’re frightened of letting her go, you think no one can care of her the way you can. That’s true. But it’s not necessarily the best for everyone involved.

Freedom & companionship — you’re each entitled to that and living together is not offering either in any sustainable form.

I love you.I love her.

For both of your sakes, move her back to the assisted living while she can still enjoy it, and you’re still young enough to have some more adventures.

Love you long time,

Future (very tired, older) Jodi

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The Closing Rapid Fire Questions from Victoria:

In this Winter Season of the letters, I’ve asked each author to share their thoughts on courage and to name some qualities they admire/respect in others.

I have a strong aversion to words like ‘hero’ or superhero when people talk about caregivers because, for me, I think it can set unrealistic expectations and emotional burdens on us. We are regular, everyday, perfectly imperfect humans who have the same limitations of time, energy and mental capacity as anyone else.

So, for a change, it’s our turn to voice our thoughts about courage.

Those qualities we admire in others? — They’re usually the values we elevate over others. They are the ones we aspire to because we hold them in high regard.

Jodi’s responses:

1. Courage to me is…doing the next right thing even when you can’t see the light at the end of the tunnel.

2. Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics:

   I’d have to pick different folks for different qualities. My good friend M, who has a big heart and is able to accept love without feeling obligated by it. A, who also has a big heart and who as a single mother raised an amazing kid who is now off to college and during that time from birth to college had a dozen lifestyle adventures and made friends who llamas and farmers and old folks and got her college degree. My friend G, another giant heart, I admire her ability to be vulnerable, to cry and not feel she has to show a strong outside. She’s fostered so many lucky kids, struggled with health issues, cared for family members. She’s an actual angel, I think.

3. What’s one quote/movie/book that’s inspired you? Monty Python’s The Holy Grail: “I’m not dead, yet.”

A prompt for reader discussion:

What do we owe our parents in their old age and do we owe them more if they were good parents than if they were neglectful?

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