The Real Cost of Being the Caregiver
By R.D. Armstrong, August 2025
“We have so many individuals — over 63 million caregivers in the U.S., an increase of over 20 million from ten years ago — dealing with complex medical issues that they have no training for.” — AARP CEO, Dr. Myechia Jordan, interview with CBS News, Jul 24, 2025
The Beginning
The courtship with my husband centered around the sharing of music and the sharing of dreams. We tracked our growing friendship as it morphed from agape into eros through our dreams and finally came to recognize each other’s basic personalities — the shadow we both carried, his anima (a redhead), my animus, (a booted man with black beard), and our animal spirits — the most useful insight. He was Bear; I was Cat. We used these as terms of endearment and gave each other the wide birth that each species needs for different kinds of emotional and experiential situations.
We also had our semi-affectionate/semi-exasperated nicknames for each other. He was “the quartermaster” with his obsessive need for planning and lists and extra provisions. I was “the absent-minded professor” who destroyed so many pans left on the burner (because I had wandered off and gotten my nose in a book) that after replacing the kitchen stove — the pot had melted all over the cooktop! — I was given an electric kettle, an air fryer, and strict instructions.
I tell you all this because what unfolds next requires that you understand the role of temperament in the love relationship.
The End
My husband died of cancer after a four-year struggle, four surgeries, multiple hospitalizations and ongoing chemotherapy treatments. In the spring of year four of the ordeal he started having dreams that signaled that things were winding down. When he had the dream of Siegfried’s farewell — the iconic moment in Wagner’s opera where the hero says goodbye to his sweetheart and sails off to the otherworld in the swan boat — we both knew that things had gone beyond the point of no return. So, when he stopped responding positively to the chemo, we made the decision to choose a few months of peace at home, rather than have him die on the medical battlefield, and requested that he be admitted to hospice care.
I had asked hospice for as much help as they could give since we lived alone in our rural home with no family or close friends nearby and in no financial position to pay for outside home care. In response to this request the hospice aid came for 30 minutes on Monday, Wednesday and Friday, and the nurse came for 15 to 20 minutes on Tuesdays and Thursdays. They didn’t send anyone on the weekends. That’s a total of just over two hours of help for the entire week and never on a weekend; a reminder that some people are entitled to get time off but not the primary caretaker — and this was the highest rated hospice in the three counties in which we were eligible to look for help.
The hospice nurse was a kind, competent, older woman with years of hospice experience and no-nonsense attitude. She informed me of all the names of the drugs my husband was supposed to take and left lists for me to follow. Dutifully, I tried to arm myself with as much information as I could and did what absent-minded professors are trained to do — I researched! On a daily basis I tracked possible drug interactions and signs or symptoms to watch for as the cancer progressed. I didn’t rely on Reddit or Quora or even Medium but went straight to the medical journals and downloaded the most recent and most cited peer reviewed articles to pour over. That’s what thinking types do in the face of an alien enemy like cancer.
On one particular Tuesday morning I was excited to share with nurse “P” a dream that my husband had had the night before. Nurse “P” was excited to show me a new type of blood pressure gadget that we could use since the older version was getting hard for my husband to work with. I watched her demonstrate the device and then took my hand at trying to read it. I read off the numbers and she carefully and gravely wrote down these numbers in her notebook. Then I opened my notebook and shared the dream with her.
When I looked up it was the expression on the nurse’s face that stopped me cold — a combination of surprise, pity, annoyance, and incomprehension. It was a look that said, “Why in the world are you telling me this and what possible purpose can it serve?”
It was then I realized that I was harboring exactly the same feelings about her demonstration of the medical device and her endless scribbling of marginally higher or lower numbers in her little black book. My husband was going to die — that’s why he was in hospice — what possible purpose could that measuring and scribbling serve?
We stared at each other across an abyss infinitely wider than the four foot span of the hospital bed now standing in the middle of the living room. Two intelligent, kindhearted women caring for the same man, each feeling that the other was holding the end of a string that led nowhere. Utter bewilderment.
After my husband’s death this was the fugitive moment that kept popping up and disturbing me by its discomforting insistence.
Dream of August 9
The morning of my husband’s passing was a blur of phone calls, arrival of nurses, doctors, undertakers, forms to sign, relatives to inform, medications to dispose of, and more forms to fill out. By late afternoon I was so exhausted that I fell on to the couch in the study and had the following dream:
Strange sensations are disturbing my midriff. It feels as if something tightly bound around my midsection is loosening in very tiny increments. Each time the binding loosens, my interior shifts like glass fragments in a kaleidoscope, falling into a different pattern with every tiny turn of the wheel.
I glance down to examine this binding and am surprised to see that I am wearing a military uniform. There is a thick, wide black belt tightly cinched around my waist. I’m also wearing big, heavy, black combat boots.
Looking up I realize that I am standing in front of a desk where an official looking military person is handing me a sheaf of printed documents: I am being given my honorable discharge papers.
Over the next six months I periodically had that strange sensation of something around my midsection being loosened, like a bandage knot suddenly slipping, or a belt buckle slipping out of its hole. I would gasp and realize there was another pocket of lung capacity that had just been returned to functioning status. I recognized it as my body’s attempt to return to “normal” after having been drafted into the military duty of primary caregiver. After this grueling four-year stint in “the war” I was trying to learn to be a civilian again.
Psychological Types & How We Cope
A full seven months passed after my husband’s death, and I was still trying to recover my own health and return to a place where I wasn’t feeling my stomach tied in knots. And then one morning I stumbled across a passage by the depth psychologist C. G. Jung that acted like a rangefinder in an old-fashioned camera — everything suddenly snapped into focus. Jung wrote:
“Adaptation to one’s environment requires an appropriate attitude. When a particular attitude is no longer appropriate, whether to internal or external reality, the stage is set for psychological difficulties… a splitting of the personality or disunion with oneself.”
[Excerpt from “On Psychic Energy” from The Collected Works, Book 8]
Of course! This was the root of the problem. My natural psychological attitude is one of the intuitive and the thinker. Being drafted into the role of physical caretaker by the external reality had set the stage for my becoming split off from my natural self. The dream image of that tight, thick, black belt that essentially cut me in half was the visual key. I was “at war with myself” and that’s why it was hard to breathe or find my heart underneath the military uniform. Four years of living this dangerously distorted existence had been thrust upon me by outer circumstance, not by choice, and I had been trying to work with tools I didn’t know how to use.
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The greatest sadness in all of this was that I had lost access to my feeling function. Being forced into the role of primary caregiver demanded that I attend to the physical world first and foremost which thrust me into my weakest attitude of Sensation, so I turned to my other two strengths — Thinking and Intuition just to get through the ordeal, leaving me no time or energy to attend to the function that should have been at its highest for this final farewell — the Feeling function. Instead, it was buried in the unconscious, beneath the army uniform, bound up under the heavy leather belt, sacrificed to the role of chief caretaker.
[For an overview of Jung’s insights on the four functions or attitudes, see https://frithluton.com/articles/type-and-typology/]
Does it feel this egregious for everyone? No, I’m convinced that typology plays a big role in whether one’s subjective experience of caregiving will be this profoundly disconcerting. I know there are many people — and this tends to be truer of women because of our cultural conditioning — who feel very at home in the role of nurse and caretaker and are happy to find their heart in that role. Some wives and husbands have a natural bent towards physical care — the Florence Nightingales of the world — God bless them! For these types, the translation of love into feeding, bathing, bandaging, medicating feels just right, natural, good. It’s an easy move and — yes — they ought to then be paid to stay home and care for their loved ones.
But for those of us who are the Intuitive and Thinking types, the demand that we move into what Jung would call our “inferior function” can have damaging psychological and physical effects. For the millions of spouses not engineered as Sensate Types — the other absent-minded professors, the thinkers, dreamers, poets, theorists, artists and other non-nursing types — the sudden shove into the unfamiliar role of physical caretaker is sheer torture, as we are ripped apart inside and our feeling function banished in the stress of trying to force ourselves into the unnatural role out of necessity. Yet we are all shamed into believing that it is our inevitable duty and destiny to play this role.
What is a Spouse?
I was caught off-guard by the eruption of emotion that followed this discovery of the reason behind my deep psychological stress. The terrible loss that I had suffered seemed multiplied by the ferocious truth that I hadn’t actually been able to be fully present with my heart during that entire final season of my husband’s life, because my body and mind had been commandeered by the medical establishment to do all of the heavy labor. At the very moment when I should have been allowed to be the one person who, in all the world, could be replaced by no one else — the beloved spouse — I was barred from that role by the necessities of physical care.
If I ask you to imagine the archetypal scene of the grieving spouse my hunch is that you will see someone crouched at the bedside, gazing tenderly into the face of the beloved, eager to catch any communication that may still wish to come through. Behind the spouse are the other attendants, the doctor, the nurse, the supporting family members. But it is clear that the chief concern of the spouse is — properly enough — to be present to the person to whom you pledged your love ’til death do us part. You ought not to be the person in the backyard rinsing the soiled bed linens with the hose and trying to figure out how to assemble the oxygen-concentrator nasal cannula!
I have been describing the subjective experience of someone who has gone through the ordeal of being the primary carrier taker for a dying spouse. My conclusion is that I was cheated out of those irreplaceable moments of my marriage. In short — I WAS SWINDLED.
The Great Swindle
The great swindle perpetrated by the medical establishment and insurance industry has been the inexorable shifting of duties from medical personnel to the unpaid labor of family members — 75% of whom are wives — for the gravely ill, the disabled, and the dying. The value of care now handled by family members is estimated to be upwards of $3 billion annually, a sum which — if the work were to be shifted back to the healthcare institutions — would wipe out 80% of the medical establishment’s profits. We, the family caregivers, are essentially doing the work that doctors, nurses, and nurses aids would be doing — should be doing — if profit were not the main motive driving the medical industry in the United States.
Are we all just doomed to thrash around in our individual misery, or should we question whether it has to be this hard? What is the objective context in which all of this is taking place?
There are multiple external forces that have exacerbated the misery of the individual caught in unexpected caretaking. The two main forces appear to be decline in family size and proximity, and the increased offloading of critical care from professionals to the shrinking family. In the 18th and 19th century families tended to be multigenerational, close knit, and geographically nearby. There were expectations about one’s church community and neighbors that meant there were always extra hands to help out in such a crisis.
So much has changed in 100 years in terms of how families are arranged. Today more Americans are living alone or in 2-person households than ever before. These small households now make up the majority of all U.S. households, a major reversal from a century ago when larger, multi-generational homes were the norm.
But the most shocking change has been the profit motive in caring for the sick. That has changed everything.
To begin, I need to point out that there is still a great deal of money floating around. I discovered that the 2 1/2 hours of hospice care per week that I actually received was a tiny fraction of what the hospice provider was receiving from the insurance company. Medicare pays hospices a daily per diem rate of approximately $200–$300 a day to cover all services: medication, equipment, nursing, social work, and home health aides. This bundled payment model encourages hospices to minimize costs per patient so as to keep more of the per diem.
I know that the home health aide that came for 30 minutes three times a week was being paid $15 per hour because I saw an ad for that exact position from that same hospice online. That’s about $22.50 for the aide. Let’s say the nurse was making $50 per hour and be generous and say that she stayed for half an hour each visit. That boosts the personnel cost to $47.50 of the $1,400 that hospice was being paid by Medicare every week. That is around 4% of what the hospice was taking in from insurance.
Most of the money was actually going to the purchase of drugs — 90% of which my husband never used — but which kept coming with alarming regularity, suggesting that somebody was profiting off of this arrangement. That hunch was confirmed by studies showing that the current system incentivizes the use of drugs over labor-intensive home health aide services, largely due to differences in profit margins and reimbursement rates.
A change in policy where the family receives many more hours in direct home care and less of the things that were not asked for — like the endless flow of vials of morphine which ended up getting dumped into kitty litter and disposed of — would make a huge difference to quality of life for caregiver and patient alike.
When I think of how just getting half of the lower figure of that Medicare per diem, or $100 a day, could have changed that last summer of my marriage — hiring a local home health aide for $20/hour and getting five hours each day of extra help — makes me want to weep. It would have been a game-changer.
The Future
The purpose of this essay is not to beat the drum of despair and defeat, but rather to sound the alarm. Swelling ranks of aging baby boomers are on the way. Knowing the real cost of asking a family member to become the primary caretaker for a loved one during illness, recovery from a fall, joint replacement surgery, hospitalization, or end-of-life should make that request morally suspect on so many levels. The amount of sacrifice being demanded makes those who ask for it — i.e. insurance companies and the medical establishment — look like monsters, and the society that goes on allowing it to happen, blind or willfully ignorant.
If enough of us who have suffered greatly while being victims in the maw of this hungry beast are willing to speak out and express our anger and sadness at the way in which we were exploited by the system, we may be able to get some change for those who come behind us.
In the meantime, if you’ve been feeling curiously enraged and you’re not quite sure why, I hope this story about my own experience might provide some insight for you. You may be one of those whose feeling heart had to be banished at the very time you needed it the most; buried out of necessity, so that you missed some of the most important moments in the life you loved and lost.
It’s OK to be angry when you realize you’ve been swindled!
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Aldridge, M. D., & Bradley, E. H. (2011). Differences between for-profit and nonprofit hospices: Patient selection and quality of care. Health Affairs, 30(7), 1215–1223. https://doi.org/10.1377/hlthaff.2010.0459
Medicare Payment Advisory Commission. (2014). Report to the Congress: Medicare payment policy (Chapter 12: Hospice services). https://www.medpac.gov/document/report-to-the-congress-medicare-payment-policy-march-2014/
U.S. Department of Health and Human Services, Office of Inspector General. (2019). Hospice deficiencies pose risks to Medicare beneficiaries (OEI-02–17–00020). https://oig.hhs.gov/oei/reports/oei-02-17-00020.asp
Kofman, A., & Fresques, H. (2023, November 29). How hospice became a for-profit hustle. ProPublica. https://www.propublica.org/article/hospice-care-for-profit-medicare
