'Having Compassion for Your Earlier Self' By Anna Du Pen

The Fourth 'Letter from a Caregiver,' Winter Season 2025/26

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the fourth letter of the Winter 2025/26 Season.

This season’s letters:

1. The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria

2. ‘You Each Deserve Your Own Life’ By Jodi Sh. Doff

3. ‘Relearning Hope In A Time Of Darkeness’ By Victoria

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It’s hard to believe that it’s December! On the other hand, I feel its weight.

I hope last week’s letter offered a reframe of hope that you could embrace. So often, we can feel bad about providing ourselves compassion when others are suffering more. Our inner critic can trap us into a shame spiral or guilt us into disqualifying our own pain.

I’m glad I saved the great resources I discovered over the years. It was cathartic to listen again to Dr Brené Brown’s ‘Unlocking Us’ podcast and Dr Maya Shankar’s interview with Jamil Zaki on the ‘Slight Change of Plans’ podcast.

I’m especially grateful to Ai-jen Poo for organising CareFest [November was Family Caregivers’ Month in the US]. Each session’s video is being uploaded to the ‘Caring Across Generations’ YouTube channel (click here). I was inspired by ‘On Hope with Alicia Menendez, Krista Tippett, Tarana Burke, and Jane Fonda.’¹

I couldn’t have foreseen how writing letters to our younger selves could provide so much compassion and insight for ourselves today.

There’s something liberating about communing with ourselves—someone who’s been with us inside and out. But also knowing it’s being received by others who truly see us, who can benefit from our lived experiences. For me, these letters are turning out to be the prompts that I didn’t realise that I needed!

This week’s letter is by Anna Du Pen, whom I met in early 2024. This is one of my favourite articles that she wrote about herself and Stu, her husband, who suffered with Alzheimer’s: “Gratitude Graces Loss. Unconscious Intimacy”

Anna writes Betwixt and Between Proxy.

Betwixt: Love, sorrow, and anger twisted up so tightly that you cannot think straight. It forms insidiously and tightens over weeks to months as your life divides itself into before dementia and after dementia.

Proxy: Durable Power of Attorney for Healthcare. Where your duty is to put your loved one’s wishes above your own. (From her About Page)

Author’s Bio: Anna Du Pen is a retired Palliative Care Nurse Practitioner and volunteer for End of Life Washington. She cared for her physician husband who died of Alzheimer’s Disease in 2023. She is also an APOE4 carrier herself. Anna writes on betwixtproxy.substack.com on being a medical decision maker for someone with dementia and related topics.

‘Having Compassion for Your Earlier Self’

Dear 2022 Anna

It is hard to imagine how you survived those two hospitalizations near the end of Stuart’s Alzheimer’s journey. I know those memories leave you second-guessing. That somehow, you should’ve made different or better decisions.

If I could be there with you in 2022, I would hold you tight. Tell you what, a great job you did under soul-crushing conditions. You never lost sight of your core mission—to take the best possible care of Stu. You clearly adored him, even when his diseased brain took him to dark and humiliating places.

In that moment on the phone when you got the call Stu was having signs of a stroke, you knew a stroke was an acute event. Data popped into your head. Eighty percent of strokes are caused by clots, the other 20% by bleeds. Once they ruled out a bleed, a clotbuster, given in a short window of time, would give him a good chance of being back to “normal.” Your daughter-in-law, Marie, asked if she should call 911. After the slightest hesitancy, you said yes.

At the time, he still knew you, still enjoyed dinners with the family, you still worked on jigsaw puzzles together, and he still held you in his arms at night.

I know it is easy for me to see that from three years out, but it was the right call.

By the time you got to the house, four big guys from the fire department had crowded into the mother-in-law apartment you remodeled in your son’s tri-level home. The medic was on the radio to the local ER and had already given him aspirin. You pointed to the POLST form on the refrigerator, indicating no CPR. The medic asked both you and Stu if you wanted to go to the ER. You both said yes. Your nurse spidey-sense and your husband’s gut response were synchronized as was often the case in your relationship.

But you had a friend who was an ER nurse, so you knew staffing issues from COVID persisted. But that was just background noise. You were focused on Stu. He had that frightened and confused look in his eyes that broke your heart. Plus, there was no way you could have foreseen what would happen once the two of you were on the healthcare system conveyor belt.

Coming in by ambulance as a suspected stroke, he was taken back directly, bypassing a crowded waiting room. The ER doctor came in shortly to examine him and found all his stroke symptoms had resolved. The aspirin had worked! You felt like you could breathe easier.

He was sent to the CT scanner, where they confirmed no bleed. And because the symptoms resolved, no need for the clotbuster. What happened next plays out in your head as a missed opportunity to rewrite the story of Stu’s last days. The doctor came back and recommended an ultrasound of his carotid arteries since he was “already here.” As if that choice was offered as a convenience.

You so wish you would’ve taken him home at that point in the story. But hindsight is 20/20, and that kind of magical thinking is rarely useful.

Stu was foggy at that point which is common after a transient ischemic attack. You tried to follow the logic of the recommendations in your nurse brain, while bending that logic toward helping your husband be okay a little bit longer. It was the job of the professionals in the room to coordinate the treatment plan, incorporating what was important to Stu.

Did the ER doc give a thought to whether Stu would want to do anything about it if there was a problem with his carotids? Probably not. After all, it was the next thing on the stroke algorithm. Did you think two or three steps ahead on that algorithm? No.

And you ask why not?

Oh Anna, it’s so easy for me to see why not in 2025. You were exhausted from full time caregiving and trying to hold down a part-time job to keep health insurance. Overwhelmed with relief that the symptoms resolved and that he wasn’t going to die that day. The situation so consistent with the rollercoaster emotions omnipresent for dementia caregivers, on the heels of relief came the scary news that one carotid was “completely blocked” and the other “80%” blocked. The ER doc recommended a consult with the vascular surgeon. He explained these blockages were managed with non-invasive stent procedures, not big open surgeries.

There was no conversation focused on other options. But from where I sit now, the emergency had passed, and it was clear he had developed collateral circulation (blood vessels that detoured around the blockage). Meaning that the doctor could have discussed that he was at high risk for a stroke, but perhaps he could be put on an aspirin regimen and rely on the collateral circulation to do what it had clearly been doing for years.

More glaring was that there was no hint of recognition that Stu’s major medical condition was Alzheimer’s Disease, well into the moderate stage. That should have triggered the need for the critical but difficult discussion around goals of care. The very clinical skillset you practiced at the bedside for years.

HOW COULD YOU NOT BRING IT UP AND ASK WHAT THE OTHER OPTIONS WERE?

Because that was not your job! That was the doctor’s job!

Stu’s medical records were at his fingertips. That was one of the reasons you selected his primary care doctor from the organization that ran the hospital. At the very least, he could have given the two of you the option to follow up with the vascular surgeon as an outpatient.

But the conveyer belt was in motion. Stu was seen by a kind vascular surgeon who reassured us that the procedure was safe, and he was admitted to the hospital. After Stu settled in, the nurse came in and said you would have to leave because visiting was limited to one person per day and 4 hours max. Her young face was lined and pale, as if she had been without sleep or sunlight for days. You just stared at her.

The sounds in the hallway seemed to mute. The staff in white coats passing the doorway moved in slow motion. The density of the air moving in and out of your chest felt thick. You felt light-headed.

Somehow you managed to say, “but my husband has Alzheimer’s,” before tears began to well up. Seconds passed as you struggled to push through.

“I can’t leave him overnight. He will get confused and try to get out of bed. He has been falling at home because he forgets to use his walker.” Pain now danced across your forehead.

“We’ll take good care of your husband Mrs. Du Pen. I’m very sorry, but these rules are mandated by the state,” she said.

HOW COULD YOU NOT REMEMBER THAT COVID PRECAUTIONS WERE STILL IN PLACE?

You were in survival mode, that’s how. The fight or flight response, but let’s just add on physical, mental, and emotional exhaustion. Not only was adrenaline being pumped into your system, but the overwhelming exhaustion inhibited your ability to think straight.

Despite all of that, you were able to make the case to the nursing supervisor that there was not enough staff to prevent Stu from falling in his confused condition. That you were an RN fully trained in COVID precautions and it was clear there was not having enough staff to keep him safe. They caved, but only after you had the physician write an order in the chart.

What followed was a week-long hospitalization. The surgeon only did the procedure one day a week—Thursday. He was admitted on Monday. You slept on the hard windowsill in his room and got dirty looks from the staff. “His wife’s a nurse,” they would whisper.

After the stent was placed, he went on blood thinners—which must have been discussed but you have no memory of that. Three weeks after he was discharged from the hospital Stu had a GI bleed which led to another weeklong hospitalization.

Stu suffered steep downhill slides in cognitive and physical functioning after each hospitalization.

He would not have another vascular event, but the Stu who came out the other side of those two hospitalizations had far more bad days than good. You blamed yourself.

Oh, honey. From where I sit now, you were amazing in an impossible situation. Here’s how I see it. The culture around dementia care was at work in the hospital—look away because it’s too hard to talk about. The distress dementia caregivers experience with anticipatory grief amplified by the heavy burden of responsibility was and is paralyzing. Top that off with three decades not being even close to enough time to live the extraordinary love story the two of you forged together.

Despite all of that, and against all odds, you manifested his last wish—to die at home and continue sharing a bed with you because the most important thing in the world to him was you.

You did great!

The Closing Rapid Fire Questions from Victoria to Anna

1. Courage to me is..

   Courage to me is remaining focused on what’s most important, while cutting yourself some slack when you inevitably lose that focus from time to time.

2. Thinking of someone you admire/respect, name three of their standout qualities/characteristics

   I would have to say my mentor, Dr. Stuart Farber, the former Director of the Palliative Care Team at the University of Washington Medical Center. He had a gift for listening. At the bedside of people with dire illnesses, he would ask open-ended questions and wait for the answers, allowing awkwardly long pauses, but that’s where the magic often happened. Second, he was a natural educator. His favorite target were young medical students—so hungry to learn and not yet jaded by the health care system. He wanted to instill a reverence for compassion in them. And finally, he taught all of us that worked for him not to let “the work” consume us. To find balance, as he did with his lovely wife whom he adored. To take the wins which were always at the bedside, while not raging too much against the system where change happens slowly but steadily.

3. What’s one quote/movie/book that’s inspired you?

   That would be ‘One Day at a Time’. There were many days as a caregiver where I only hoped to make it to the end of the day with my sanity intact. Every evening when found myself and my loved one tucked in for the night, I would reassure myself I could also do the next day. And then the next.

A prompt for readers’ discussion

How do you practice self-compassion?

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1. On Hope with Alicia Menendez, Krista Tippett, Tarana Burke, and Jane Fonda.

Some notes from the video:

• Hope is a muscle, a practice, not idealism or optimism. ‘Muscular hope’ is active imagination with real-world consequences.

• Hope isn’t an individual thing; we can’t carry it alone. We need to share it when it becomes too much to carry alone.

• Hope’s been used too flippantly, as an afterthought or passive ingredient to plans. Hope may be the last ingredient after organising everything else, but it’s the activator, the ACTIVE ingredient. It’s the catalyst, the engine, to ignite it all.

• We can’t change the world without hope, love and care. Hope is a defiant act and a choice

Krista Tippett at 39 mins: “if you look at the professions that were deemed essential almost all had something to do with the giving of care and they are almost all the the the work that we least reward and value. And one of the things I was thinking as I was watching this unfold first of all is I can’t wait until this pandemic ends so we get on with this and thank god Ai-jen is already there building this movement, right!

Right now we live in a society where vulnerability almost is being criminalized and more and more of us are becoming vulnerable for all kinds of reasons. The moment has come for this movement. And hope is just claiming that and stepping into it.”