Does Self-Care Exist for Caregivers?

The grief and burden of long distance caregiving.

Dear Pooja,

I live in a different country from my elderly parents, and they suffer from dementia and other health issues. I’m unable to move closer to them at this time, for multiple reasons. How can I practice real self-care when juggling the logistics of their care management from a distance, as well as the mental burden, grief, and guilt associated with not being closer to them physically? I work full-time outside the home and have two young children, and this a tremendous load to bear, all at once.

“Long Distance Caregiver”

Hello Long Distance Caregiver,

I am honored that you wrote. I have a lot to say about your question — I hope some of it will serve you. I’m going to put my response into two buckets: the first will be more operationally focused, and the second will be more emotionally focused.

Before we dive into either of these categories of “solution” (air quotes because it is impossible to solve/remove your problem - what’s possible are varying degrees of coping with it and accepting it), I want to ground us in the context.

@AuthorJMac via Twitter

Last night I came across this tweet by the sci-fi/fantasy writer Joanna Maciejewska. Joanna’s tweet sums up the contextual and structural reasons why you feel the way you do, Long Distance Caregiver. We live a culture that takes the back-breaking work of caregiving for granted. Not only is domestic labor unpaid— it’s minimized, belittled, and systemically devalued.

Even though more than 17 million Americans are caretakers of family members over the age of 65, caring for adult family members still feels relatively invisible. I think it’s because we lack the language and ritual around it. We are accustomed to hearing, “I can’t come because my kid has a soccer game.” We are less familiar with hearing, “I can’t come because my mom is in long-term care across the country, and at any minute could break her hip, and I need to be available in case her blood sugar plummets again like it did last night, and if the nurses call me I need to be near all my mom’s medical records, because I’m the quarterback managing all of this.” In your case, with your parents being abroad, it’s even more invisible, and, therefore, ambiguous.

Lee Woodruff coined the term “panini generation” for the generation of Americans who are simultaneously caring for elderly parents and their own children. Previously described this the sandwich generation, Woodruff was like, no actually, it’s a panini. Caregivers in these circumstances are pressed so hard from both sides, and are made so thin. A sandwich would be a luxury!

Now that we have put your very good question into this context, a couple things occur to me. First, your panini differs because you are caregiving from afar. While the forces pushing on you are similar than a local caregiver, there’s a space — metaphorically — and so, maybe as a long distance caregiver you will feel the pressures differently than a local caregiver. Second, immigration adds another layer of ambiguity and grief to the mix There is plenty of literature about the specific type of loss experienced by immigrants, and, while I am not sure if you are a 2nd generation immigrant, as an immigrant daughter nonetheless your loss and grief is more complicated.

Now, on to the operational aspect of things. You mention the mental load of managing the logistics of caregiving from afar as a stressor. While I don’t have visibility into the details of that burden, writ large, knowing that you are someone who reads this newsletter and thus follows my work, I’m going to make the assumption that you lean more type-A and take pride in doing a job well done. Thinking about the immigrant aspect again, I wonder about your relationship to performance, achievement, and control.

I focus on these linear, success-oriented characteristics because if you are like that in other areas of your life, it’s impossible not to bring the same mentality to your caregiving work. So, while the operational aspect of what you are doing and how you are doing it could be its own newsletter (or book!), I want to call your attention to the concept of the Minimum Standard of Care. Eve Rodsky, the best-selling author of Fair Play and Find Your Unicorn Space, coined this term to refer to the process of deciding and naming when a task is done.

For example, my room is clean when I’ve made the bed, cleared the clutter off both nightstands, and put all the cat toys in their respective baskets. Ta-da! Yes, there’s still cat fur all over, and there’s a giant heap of outgrown baby clothes that need to be sorted, and I have a pile of books scattered about, but my Minimum Standard of Care for a clean room is complete. I wonder if you could go through the big buckets of responsibilities that you have for your parents, write down a Minimum Standard of Care for each one, and tack that up above your desk at work?

Before we move further into the feelings part of my answer, I want to stop to mention another tremendous resource: the book STAND BY ME, by Dr. Allison Applebaum PhD. Dr. Applebaum is the founder of the only devoted Caregivers Clinic in the country (located at Memorial Sloan Kettering Cancer Center), a clinical psychologist, and a really thoughtful and kind person. Stand By Me just came out in February, and I’ve already asked at least five of my patients to read it. It’s a guide for how to communicate with healthcare systems and workers, think about advance care planning, and understand the changing roles you will go through during caregiving an elderly or chronically ill loved one. It’s the only book I’ve come across that does this and Allison gives specific, actionable advice.

Not sponsored! I just love this book so much.

Okay, now on to the feelings part. Earlier this week, a patient of mine was describing a particularly difficult and all encompassing hard time in her life. As she was speaking, I had the association to the movie Everything, Everywhere, All at Once. Your question gives me a similar association, not only because of all of the demands on your time, but also because of the setting: immigration, which in most cases, comes with intergenerational trauma of varying degrees.

You mentioned guilt, grief, and mental burden. Naming the minimum amount of what you need to do allows you to exert agency over your time and energy. We know that exerting agency is protective, mentally and emotionally. But, we are still left with the grief as well as the guilt.

I have a couple lines of inquiry on grief and guilt that I hope are helpful.

When I think about guilt, I am drawn back to the cultural aspects of your situation. It’s important to name that because you live in a different country than your parents, not only will you feel guilt for not being with them physically, you may also feel guilt because your Minimum Standard of Care differs. It’s not possible to escape that, and I do not think you should equate success (or, real self-care) with the absence of guilt. Feeling less guilt is not a realistic or productive goal — if you follow that route to it’s logical conclusion, you’ll end up even further from yourself than you feel now. Furthermore, it’s highly like that your Minimum Standard of Care (or, how you achieve your minimum) will differ from what your parents, cousins, or other relatives would advise. This is to be expected and it’s the burden that comes with intercultural/ transnational families. Your job is not to “fix” or change anyone else’s expectations - it is to understand the reasons behind your own, interrogate them, and act accordingly.

You ask about how to practice real self-care (Boundaries, Compassion, Values, Power) in your situation. Though you use the phrase real self-care, I notice that the gestalt (my fancy psychological word for vibe) of what I get from your question is: How do I rest? How to do I find the time and space for me? How and when can I just lay down?

Because, OF COURSE you want to lay down. Of course you do. And, you deserve to. Yet, as you and I both know, laying down is easier said than done.

So, this has me think about the times when I’m in session with a patient, and how much relief my patient feels when we name the thing, even if the thing is unsolvable and totally terrible. Sometimes, being seen, deeply seen, can be a precursor to rest. I’m wondering what the quality of your friendships and relationships are like? Do you have people in your life who are going through something similar or comparable in level of scariness, sheer workload, and isolation? Taking care of a parent with Alzheimer’s is a particularly lonely and isolating experience; and not only that; the management/operations work is easily a full time job in itself. Who in your life knows that experience and can “see” you there?

Even though your parent with dementia is abroad, it’s still cognitively disorienting to be unable to recognize them anymore. That disorientation can also cause an internal disorientation — eg. it might be more difficult to recognize yourself.

Ultimately, I think you might need to feel seen in two ways: first, by someone who gets what it means to be taking care of a parent who is dying of Alzheimers — like really gets it, and, second, by someone who knew you and loved you before you were saddled with all of these roles. These are the people who you want to be texting with everyday. These are the support groups you want to seek out. You need to be seen in this place, and only once you are seen will you be able to give yourself permission to rest.

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From the Archives:

What To Do When Things Fall Apart

When You Don't Belong

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Okay, so we have covered operational matters including the Minimum Standard of Care, and how culture shades that, as well as being seen as a pre-requisite to rest.

The Alzheimer’s aspect of your question brings us to my next line of inquiry. This one is related to grief. There’s a term called ambiguous loss, which refers to loss that lacks closure. We don’t yet have a good common vocabulary for the caregiving of family members with dementia (despite the fact that 80% of dementia patients are living at home, cared for by family members).

Ambiguous is the best approximation I’ve seen so far. You lost your parent, but they are still there in body. This new person that you are responsible for is not the person who raised you, but yet, there’s bits of them that may or may not still be in there. Because of the variability in how their dementia progresses, the closure you want may take years or decades to come. You feel guilt and shame for craving this closure. It’s a terrible.

When you can’t physically be there for someone, but you also simultaneously feel responsible for them and ambivalent about said responsibility (and, perhaps your culture tells you it’s your duty to be responsible for them), what do you do with all of that pent up frustration? Well, naturally, you feel guilty.

Guilt is so much more acceptable and less destabilizing to feel than anger, rage, or grief. Going back to Everything, Everywhere, All at Once — what if instead of focusing on the guilt, you focus on some of the other emotions you are feeling? Guilt is usually a surface level emotion, we want to go deeper than that. If you’ve read Real Self-Care, you know that I think of guilt as a value-neutral emotion that provides no real meaning or information for women. The guilt pathway in your brain is probably so worn down. I doubt it’s helpful, and I’m pretty sure that it never takes you anywhere productive.

I’m wondering if you could put a shape beside guilt to your ambiguous loss. Could you write about it? Make a playlist for it? Put together a collage of old photographs? Heck, I have a patient who once a month attends a “Paint & Sip” class, and exclusively paints about a family member who is dying of advanced Parkinson’s (sometimes she sips, sometimes she doesn’t).

The reason I mention this is because we know that on top of structural inequities that cause burn out, another factor (and, symptom) is disconnection from meaning. You mention having kids, so I’m guessing most of your non-paid work time is spent in your pre-frontal cortex— planning organizing, making all the shit happen. You probably spend an inordinate amount of time filling out forms, and dealing with insurance companies. The antidote to this is not to find time to rest or to do more. As paradoxical as it may seem, the antidote is to find a way to get into the feeling part of your brain.

Art is a good portal for the feeling part of the brain. If you are not an art person, another way to access feelings is to do something repetitive that feels safe. Puzzling, gardening, needle-point, anything! The reason this works is because it allows you to be in your body on some level, and the memories and feelings can come up, but you do not have to do anything about them or with them. All you need to do is make the next stitch or find the next puzzle piece. It’s like your brain is distracted enough to allow the feelings to come online.

I know it probably sounds scary and counter productive to let yourself feel some of the things. But, if you can bear it, it’s in those moments that the relief comes and the work of real self-care can really begin.

xo,

Pooja

Bonus Thoughts for Paid Subscribers

Here’s another 500-ish words for paid subscribers who want more. These Bonus Thoughts include a little personal stuff about my own grief, what to do if you don’t have people who “see” you, and dealing with uncertainty.

• What about “the village”?: So much of the advice out there on how to survive the Panini generation/caretaking burnout etc, is about leaning into your village. My take is less about the village per se, and more about really feeling seen, as opposed to finding the person who can swoop in and do all the things. For most of my patients, being seen is a prerequisite for accepting help. This is because it’s generally terrifying for women in particular to ask for and receive help - we are socially conditioned to be the caregivers, not the care-receivers.

• What if you don’t have people who see you (or, if you feel as if you do not)?: When my life was falling apart circa 2011-ish, there were so many people who tried to help me. Some succeeded, but most I pushed away because I did not believe that they could see what I was going through, and why I was going through it. In retrospect, it’s probably true that a couple of those people did see me — but, in reality, I think what I was feeling was too heavy and too messy for most of the people in my life at the time to fully understand. I think, for some of us, the shame we feel about our grief pushes us to seek answers outside of ourselves. Sometimes, the thing that is most healing is to be seen in your grief by someone who doesn’t know you, or your history, or your culture, so that you can try on a new version of yourself. I do not know exactly where your parents and your family are from, but I am guessing that culture of origin plays a role in your mental burden. And, if that’s the case, belonging might be at play here too. I wonder if you might find some ease in exploring areas of life and people that are a little bit different than your usual circles. As a caveat, I would urge you to heed the practices I wrote a few weeks ago— as opposed to jumping into a new social group or organization too quickly: go slow, collect data, give it time to see how it lands for you.

• How do I deal with the uncertainty of chronic illness in a family member?: When you have a kid home sick with the flu and you’re still trying to meet deadlines at work, you know your situation might suck for the time being, but you can see the end of the tunnel. What you describe in your question not only lacks closure, there is also no way to estimate when or how it will end. That feeling of being in this *forever* reminds me a little bit of when I am working with a postpartum patient who desperately asks me when her baby will start sleeping through the night. Every day feels like Groundhog Day. I think it would benefit you to find ways to demarcate milestones and to consistently remind yourself that even though it might feel like you are in this limbo state, pulled in too many directions forever, it objectively cannot last forever. While it’s completely understandable and human to crave certainty, I think that we sometimes mistakenly conflate certainty with relief. In reality certainty just brings a new set of questions and limitations to address, you just don’t know what they are yet. If you can access your feelings while you are in this Everything, Everywhere, All at Once part of your journey, then your work once you get to the “end” will be less torturous and there will be less likelihood of collateral emotional or interpersonal damage.

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This is your reminder that my answers to reader questions do not constitute a diagnosis, treatment or medical advice. This newsletter is not a substitute for therapy.