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Dwelling in Possibility's avatar

My 52-year-old husband went to work one morning, slumped at his desk and came home from the hospital a month later with a terminal brain tumor - glioblastoma. Overnight I became his full-time medical advocate and interlocutor, chauffeur, single wage earner, single parent to my three teenage children, manager of everything around his illness, which incapacitated him physically (from the seizures - he was in a wheelchair from the beginning) and absolutely overwhelmed parent and caregiver. We had a beautiful community of friends who stayed by our sides and helped us, but there is truly no real help for caregiving at that intimate level. He died 54 weeks later, and yes, his death was a relief, a liberation and the beginning of my journey around his loss (I already had other terrible losses earlier in my life, so grief was no stranger.) The guilt I have felt over not being as good and loving a wife as I could be that year remains overwhelming at times. I loved him but I could not be his wife and his caregiver simultaneously. And I had to be his caregiver first. My children went through their own journeys, and are now young adults feeling their way in the world. They are happy and healthy and loving, which is all I can ask for. Being their support was the most important thing to me both during their father's illness and after his death. I have written many pieces about this experience, and have a book of essays publishing later this year about my widowhood. Like Annie in the videos, I believe in telling the unvarnished, difficult truth about caregiving and death and grief.

Sari Botton's avatar

Thanks so much for your candor. Wishing you all the best with the book. Be sure to keep me posted about it as you get closer to publication. Sounds like something I should share with the Oldster readership. 🩷

Patricia Ross's avatar

After seven years of watching my husband disappear because of the Alzheimer's that was eating holes in his brilliant brain,I felt relief along with the grief when he passed away. Shortly before his death, he looked me straight in the eyes and said: "You're knocking yourself out for someone who is no longer there."

Sari Botton's avatar

Wow! What a statement. Thanks for sharing this.

Ali's avatar

Wow. Profound. That’s like an entire novel in one sentence.

Having done hospice care 5 years, there is sometimes a ‘drawing aside of the blurring veil’ in final days. There are still so many mysteries in neuroscience; how does that even happen?

Most of my co-workers were in awe of spouses like you. Thank you for your service too. 🪻🌷

Patricia Ross's avatar

Gosh. I don’t think anyone has ever acknowledged the toll it took on me! Thank you. I was very much aware that not infrequently caregivers die before those they are taking care of, so I was very careful during those years to take care of myself, have my own therapy, get a massage now and then. Emotionally I can’t imagine anything quite so difficult. And I would do it all over again.

Ali's avatar

Aside from the assumptions the vast and profit-gouging healthcare industry makes regarding unpaid medical services expected of spouses and children, there is an huge army of caregivers who are picking up the slack, willingly or not. And it is absolutely at their expense! As a country WE OWE THEM MORE.

Your husband was very lucky to be so deeply loved. I’m very touched.

PS: It’s a tiny picture, but is that a bird and a frog on your shoulders???? Fun photo!

Patricia Ross's avatar

A frog represents the ability to adapt: in water or on land. The owl can see almost 360º. The dark background is where I’m coming from, the light into which I’m evaporating is where (I hope) I’m going.

sallie reynolds's avatar

Just a note from Neverland - I'm care-giving my 85-year-old husband who has heart disease and a Parkinson-like tremor. I'm 87. And tired all the time. But Hospice is an enormous help, and free, with Medicare. I'm sure how good they are varies from group to group. The one we have is excellent, the nurses and aides are fabulous. and the services amazing. Yesterday, a driver came 20 miles out in the country in a downpour to deliver pills.

This is just our third week with the program. And life is - wry. Yesterday I had help putting together a new bed frame that would get my husband a foot higher in bed, making it easier for him to get out. And it did. But last night, he slipped off the edge, and fell. Hospice will send someone out to help in these cases. But he got himself back up. This time. You win some, you lose some. I'm home and doing all the life-chores, but I also get time to write! That's a win. I love my husband. That's a win. My heart breaks to live with him through a decline from strength to powerlessness. I don't call that a lose, exactly. It's an inevitability.

Sari Botton's avatar

Incredible perspective, sallie. Sounds hard, but also…inevitable, as you say. Good luck managing it all. <3

Verna Gillis's avatar

Everyone regardless of age - !is aging!

The facial recognition app on my phone no longer recognizes me

Nora Paul's avatar

My husband had been suffering from severe depression. A 1960s hippie…he never thought he’d make it to 30. Live fast, die young, leave a beautiful corpse.

He was 50 when someone turned into the grocery store parking lot and ran into him on his motorcycle. He had talked frequently about suicide, medication was helping. This was, for him I believe, a way out - a fortunate accident. He was tired of being here, it was too hard.

This way out was, for me, even in the deepest despair after his death, easier than the guilt on top of the grief that a suicide would have brought.

All my “big deaths” have been sudden (husband, father, mother) and I’ve often wondered about which kind of death is “easier” - watching your loved on fade away, or being ripped away.

sallie reynolds's avatar

I have survived losses by both. Suicide is not easy to assimilate. Something dark lingers. This dwindling of age/illness is easier emotionally on me, the survivor. If longer for both the one who's dying and the care-giver.

Sari Botton's avatar

Thank you for sharing this, and for your candor, Nora. I know what you mean about wondering which is the best lane toward the end, the slow one, or the fast one. I wrote a bit about that here: https://oldster.substack.com/p/letter-from-the-editor-19

Elissa's avatar

I recently had to do a photo assignment for self portraits; nothing would challenge me more to "look" at myself. Having grown up with a narcissist parent, presentation/looks were everything and our home was a house of mirrors (horrors). I look back at pictures and apologize to that self, how harsh I was, always feeling less than and the pictures reflecting the most critical self. The current me, the one with the assignment, has to come to terms with aging, the lines that weren't there when I criticized the imaginary flaws of 20, 25, 30+. The approach to my photo assignment was to do self portraits, without having to expose my "self" - it's interpretive, "creative" photography. I'm blurred, spinning, I'm a collage, I'm a persona - you get it. I am everyone but the person in the mirror. I'm a closer to looking back at me, than I ever was, and a process. Your observations surely help

Ali's avatar

In art college at 18, Drawing 101, we were required to make an exact size facial self portrait with calipers! After staring at my meat bag for so long to do it, there was a shift— to not trying to see any ‘self’ in there, just the asymmetrical details and textures. Freeing, actually. It was an ink project and I messed up the contours, so I blacked out the whole background. Looks like a Halloween ghoul when I ran across it recently!!!

Same teacher had us do still-life by drawing the shape of the white space around them. Another shift in ways of seeing. That education has enriched my life for over half a century! Recommend at any age.

Sari Botton's avatar

Thank you, Elissa! What an interesting assessment. And I need to make some apologies to former versions of me… 🩷

Ali's avatar

In some trauma therapy, people are advised to sit with childhood pictures of themselves; contemplating their worth, innocence, potential and lovability. Like a base to rebuild on.

Mimi's avatar

Sari, I love the idea of workshops for writing about aging. Please keep us posted on your project!

My husband (65) and I (63) just returned from a bucket list trip to the Galapagos that involved snorkeling. After being handed short wet suits we scurried to our room to make sure they were the right size. To my delight I realized that wet suits are basically heavy duty Spanx with the added slimming bonus of being black. I struck a fetching/'check me out pose' and my husband took a photo to send to our kids.

My face is beaming in that photo (no make up, and after 29 hours of travel), I felt great and it showed. In an earlier, not so long ago time I would have deleted that photo immediately, too many curves and too many wrinkles. But my eyes tell a different story, I'm excited for a new adventure and for the future.

It's now his phone screen saver, which makes me see it almost every day, and I love it.

Sari Botton's avatar

I love this, Mimi! Inspiring. And will let everyone know once the workshop is set!

joan Turkell's avatar

I take pictures of myself to share with my head cut out of the picture!

I’ve been asked where

My head was and I responded, in wonderland!

Judith Frizlen's avatar

Love this! How long it takes to like a photo of yourself. My guess is about a decade. And I am currently writing about finding acceptance of my changing image. So that's a thing. Also, thinking about and preparing for when my husband predeceases me. How do I know? He is six years older than me and a male, so statistically, that's how it will go. Or maybe we will die on the same day. Who knows? Best to be prepared.

Ken Carlton's avatar

My mom passed a couple of weeks ago at the age of 97. Her last 11 months were very tough and she was mostly gone at the end. I think we all felt like Annie and Benni, relieved that the suffering was over. (I worked with Benni on a film many years ago; he was an utter gem of a human being!). Reflection on my mom's passing, here: https://beyondish.substack.com/p/remembering-blossom

Sari Botton's avatar

Sorry for your loss. How nice that you got to work with Benni. I’ll check out the link…

Janice Brantner's avatar

Relief at my husband’s death, yes!

I married my wonderful, healthy, strong second husband when he was 56 and I was 48. When he was 60 he started having trouble communicating and two years later he was diagnosed with primary progressive aphasia, a type of frontal lobe dementia that begins with loss of speech and not loss of memory but ends the way every type of dementia ends. He died when he was 71, with no quality of life remaining. I was exhausted. It was the end of suffering for us both.

Sari Botton's avatar

Oh, that must have been hard. Thank you for sharing. <3

Deborah Sosin's avatar

Wonderful letter, as always! Will share Benni's link with a friend anticipating her husband's death from Parkinson's (someday in the near future). And I look forward to the Geneen Roth thread. Her early work (When Food Is Love) was hugely influential at the time.

Epstein Irwin's avatar

OMG! Wondering what came before Gen X, I discovered that I’m from the Silent Generation. But I’m just starting to ‘spress myself via Oldster. WTF?🤷🏼‍♂️

Sari Botton's avatar

Biggest misnomer! I have never met a reticent member of The Silent Generation!

Epstein Irwin's avatar

That’s because they lived long enough to criticize Gen X.

Liz Kitchens's avatar

These stories are poignant and brave. Caregiving a spouse, a parent, or child is emotionally and physically exhausting. I've been in that position with a parent. A chapter in my book, Be Brave. Lose the Beige: Finding Your Sass After Sixty is devoted to caregiving.

sallie reynolds's avatar

This is the journey! Better than a trip to the tropics. Thanks, Sarii - and by the way, you're gorgeous. Still.

Sari Botton's avatar

Aww, thank you, sallie!

Sydney Lea's avatar

The first thing I notice on seeing old photos of myself (particularly from the 60s) is how full a head of hair I had. I have considerable male pattern baldness now. So I sigh... but only for a moment. These days, I can brush what's left of that mop in about fifteen seconds and go on about my day. SO: farewell to my hair; it really never gave me a moment's pleasure.

Sari Botton's avatar

Good perspective, Syd!