I hesitated before starting this post, because my feelings are still raw and I don’t want this blog to become an emotions dump. But it’s difficult to stay silent. Writing this blog has become one of the ways that I make sense of my life and the lives of those around me. So in a way I need to write it, and I’m grateful to you for reading.
The title above is ambiguous. It could mean “how to avoid dying,” something that most of us in our third age ponder from time to time. That is not the meaning I intend. Rather, I’m suggesting that there are better and worse ways to go. Our ability to make choices in this regard is, of course, limited. But it is not null. And as I’m now seeing firsthand, the stakes are high.
A friend my own age, L., died last Saturday after a long illness. She bounced around to four different facilities in the chaotic last month of her life, suffering greatly. At the very end she landed in an inpatient hospice that gave excellent care, but she died less than 24 hours later. Unable or unwilling to plan for the end of life while she still could, she left her affairs in disarray, in the hands of two people unprepared for this responsibility – myself and another friend I’ll call M. How did this happen? Could it have been avoided? I’ve spent hours since Saturday turning this over in my mind.
Who she was
Meeting originally through a book club, L. and I had maintained a pleasant, low-key friendship for nearly two decades. We weren’t exactly close, because L. was reserved and private and didn’t get truly close to anyone, but I was among perhaps half a dozen people she counted as friends. She never married or had children, was not in a relationship, and was estranged from her birth family, having cut ties with them many decades ago under circumstances that remained unclear.
Living alone in a small apartment, L. didn’t travel; in the years I knew her she never once left the DC area, so far as I know. Yet her intellectual horizons were vast. With a PhD in history, she read voraciously and had a library of perhaps a thousand titles spanning literature, history, biography, politics, and art. She had her special place that she loved, a nature preserve in her neighborhood, where she volunteered with others to tend flowers, trees, and walking paths.
The final month
L. was diagnosed in 2021 with an untreatable neurological disease that causes severe disability followed by death. By the beginning of this year she could no longer speak, eat, or drink; she communicated by tapping messages into a text-to-voice app on her phone and consumed formula through a feeding tube. She could barely walk and was losing the use of her hands. Yet she refused most offers of assistance and even visits. She didn’t hire a home health aide. She didn’t want to discuss plans for her future care. Despite the grim prognosis, she was determined to beat this disease – and to do so largely alone.
Five weeks ago, it all came crashing down. Unable to care for herself any longer, she called 911. She spent the next month in a DC hospital, not because they could do anything for her medically, but because she had no place to go. The few facilities that would take a patient needing that level of care charged at least $11,000 a month. Finally she was discharged to a small, privately owned assisted living home in the Maryland suburbs outside DC. We don’t know exactly what happened there, but after four nights L. called 911 again, saying she couldn’t breathe. She was taken to a Maryland hospital and stabilized, but as she refused to return to the assisted living, the hunt for a placement began all over again.
Throughout these fraught weeks, four of us stayed close or tried to, visiting L. when she would let us and bringing her things she asked for. M. and I worked the phones with hospital social workers and the assisted living owner and carted L.’s belongings around as she moved from place to place. Always distrustful of medical institutions and now understandably panicked and angry, L. didn’t make it easy for anyone. And in retrospect I see that we didn’t fully understand what she was going through. She made clear what she wanted, though: a peaceful death in hospice care. The problem was making that happen. Hospice is typically provided to a patient who remains at home, cared for by family, with visits from a hospice nurse. That wasn’t possible for L.
Finally her breathing began to fail – the expected fatal outcome of her disease – and she was transferred from the Maryland hospital to an inpatient hospice unit on Friday afternoon. She was already unresponsive when she arrived. I drove out to the hospice on Saturday morning and sat with her for about an hour. Forty-five minutes after I left the facility, the call came that she had died.
The aftermath
When L. was diagnosed in 2021, she had no will, no power of attorney, and no next of kin. L. viewed these legal niceties as unnecessary, pointing out that her retirement account had a named beneficiary – a charity – and beyond that, “there won’t be anything left.” But M. and I insisted that she make a will. So L. printed out a blank form from the internet and got it signed, witnessed, and notarized, naming M. as executor and leaving everything to the charity. We also urged her to do a POA for health care and a durable POA for financial matters. The health POA was done when the first hospital insisted she designate someone; the durable POA never did get done.
After she died, the hospice released the remains to M., who had to find a funeral home, arrange pickup, identify the body, and pay for cremation. She now faces the task of probating the will. Luckily, M. is a lawyer, although in an unrelated field of law, so she knows more than I do. But the fact remains that we don’t have L.’s passwords or even know for sure what accounts or insurance policies she may have had. We don’t know if there’s enough in liquid assets to hire a probate lawyer. L. directed us to give notice on her apartment and clear it of her belongings; several of us are working on that. The whole thing is confusing, exhausting, and deeply sad.
The take-aways
I’m devastated that all this happened to my friend. And I’m damn determined it won’t happen to me or to anyone I hold close. For starters, I can’t think of any circumstances under which I’d break off ties with my family, whatever their quirks (or mine). We all have wills and POAs that we update from time to time. We have access to each other’s passwords and keep our financial information in shared-access files.
Beyond that, I think an understanding of the institutional landscape is key. My dad is a huge fan of CCRCs, continuing care retirement communities, where you begin in independent living and progress to assisted living and skilled nursing as your needs change. I see the advantages of this model, if one can afford it. But you have to enter while you’re still healthy enough to live independently, and none of us can predict how long that will be. CCRCs aren’t the only choice, of course, and other choices may work better for some people. The point is to make a choice – or try to.
As for hospice, I’m a believer (see my interview with a hospice volunteer). But it doesn’t just happen by itself. Once you enter a hospital or other institution and start dealing with their bureaucracy, and with insurance companies and Medicare, you can get lost in a morass of rules and requirements. In L.’s case, the assisted living owner contacted a hospice but that hospice deemed L. ineligible because she had a feeding tube, even though she was within a week of dying. The second hospital’s social workers finally got her into a top-notch nonprofit hospice facility, but by then it was too late.
I don’t mean to depress anyone. But this has been a learning experience, and I wanted to share it. Once the weather turns mild, I look forward to sitting on L.’s favorite bench in her favorite spot by her favorite frog pond, reflecting on her life and on its end.
Thanks, all. DC in fact has a right-to-die law, and when my friend was diagnosed she stated clearly that she would take this option at the appropriate time. But as she got sicker, she stopped talking about it. And we didn't feel comfortable bringing it up. It would have had to be her own initiative.
Let me clarify, lest it seem like I'm blaming L. for her predicament - not my intention. Early in the progression of her illness, she did contact a few assisted living facilities. But the responses were discouraging. Most facilities won't admit new patients with her disease, ALS, because of the intense and costly care that they will need. She was diagnosed at 68, an age when most people haven't yet applied to any kind of senior living. And as soon as she had the diagnosis, the doors slammed shut. Once she lost her ability to speak and walk, doing further outreach to find out if she had any options became all but impossible.