This diary is about loss, and grief, and healing. And time travel.
My sister passed away on April 5th. She was almost 17 years older than me, and she had been in declining health for years, no more so than the past eighteen months, spending perhaps only two weeks of that time at home and the rest in and out of various hospitals and nursing homes. These hospitalizations were for UTIs….urinary tract infections…the bane of her existence just as they had been for our mother in the last years of her life. She also had several co-morbidities. The nursing home stays were for rehab...to attempt to regain the strength lost to the hospitalizations for the UTIs.
In March she was hospitalized for yet another one, which proved to be one infection too many. Within days her health, which had become a house of cards, collapsed in front of my eyes. Eventually my nephew, who lives in the Atlanta area (his mother and I in the Chicago area) came up and he and I spent three days speaking with doctors and meeting with representatives of a hospice company, weighing our options. Fortunately my sister and I had given each other POA for healthcare years ago, and had included advanced directives in those documents. By this point my sister had been rendered completely incapable of participating in this decision, all the more reason why everyone should have an advanced directive and a designated POA. And if you take away nothing else from reading this diary, make it that.
There was one medical option available that would have continued her life existence for an indeterminate amount of time. Until something else took her. It would have been like torturing someone because you were too selfish to let them go. And it would have been completely contrary to her wishes.
She entered hospice care and was eventually moved to a nursing home where she passed away four days later. I believe wholeheartedly that her son and I made the right decision, and I will always believe that. But the hospice experience was a nightmare. They utterly failed to keep her comfortable and out of pain. She spent the last week and a half of her life frequently in agony. I don’t feel guilt over this...at least I don’t believe I do...but I feel incredible anger and sadness over it.
The first two weeks after my sister’s death I was a dynamo...emptying out and then cleaning her apartment...and then giving my own apartment a cleaning the likes of which I hadn’t undertaken in years. I also began an exercise regimen, after a long period of neglect.
For years I had been my sister’s caregiver and advocate. It was a role familiar to me, in that I had been our mother’s caregiver the last seven years of her life, five of those live-in, a step I did not undertake with my sister, although without my increasing assistance she would not have been able to remain in her own place. And as a man in his sixties, with over two decades of worsening fibromyalgia as well as more recent heart problems, I often did not have the time, and I never had the energy, to attend to what could be called a normal life.
Immediately after her passing I threw myself into staying busy, fibromyalgia be damned, because the physical pain was a price I was willing to pay if this busy-ness kept away the emotional pain, a tactic which I was self aware enough to recognize I was using.
But that energy has vanished, replaced with near total immobility. While I do manage to drag myself out of bed in the morning, and I have continued with the exercise regimen that’s about all I do. I think of the things I should be doing, and the things I could be doing, and I simply can’t summon up the energy to do them. There are days I don’t leave my building, exiting my apartment only to dispose of garbage or check the mailbox. And there have been days I don’t even do that. In the daytime I often spend hours back in bed, feeling as if I weighed 500 pounds. Nights find me watching streaming television and binge eating. And occasionally getting mildly drunk.
I have been making inquiries with local psychologists, LCSWs, and other counselors, but so far have had no luck in finding one who accepts my secondary insurance.
UPDATE: I just received a call back from a local LCSW who is willing to waive the co-payment and just take the Medicare assignment. I see her on Monday.
I expected sadness, of course. For all the burden my sister’s care placed on me, I loved her dearly and I miss her. She was funny as shit. And smart. And of course a dyed in the wool liberal as anyone raised by our parents would be!
I remember a bumper sticker I saw when I was a kid. It said “I love humanity. It’s people I can’t stand.” That’s me in a nutshell. I generally think people are better in theory than reality. But not my sister. She loved people. And she had this extraordinary ability to connect with them. I can remember during a post hospitalization rehab stay years ago walking into her room in the morning and her saying “Oh, I hope you get to meet my new aide. Her name’s Maria, she has five kids, her husband’s a cop, and they just bought a new home.” “Oh, how long has she been your aide?” I asked. “Oh, I just met her!” That was my sister, making friends instantly.
Anyone who has lost a loved one will tell you that the grief blindsides you when you’re not expecting it. Because, of course, if you expect it you can steel yourself for it. Distract yourself. The day after her passing I returned home to find a beautiful flower arrangement, sent by my friend in Uruguay and her family, just as they had done when our mother passed. My sister had adopted my friend as her “little sister,” and time and again over the next couple days I found myself thinking “I have to tell (my sister) about the wonderful thing (my friend) did,” only to be hit with the realization that the very reason for the wonderful gesture meant that I couldn’t tell her about it.
But what I have wondered is, “Where is the relief?” For I had spent years not only dealing with the demands of my sister’s worsening health, but with the increasing anxiety over how much worse it might get before she passed, which of course I knew she would, as we all must. How many more hospitalizations would she have to endure? How much more pain would she have to feel? How much more of her autonomy, of her dignity, would she have to lose? And I knew this anxiety well, for I had lived through it the last years of our mother’s life.
And as bad as it had become for my sister...and it had become very bad...it didn’t get even worse. And it easily could have. But it didn’t, and now I know it never will. So with that, and the return of a normal life opportunity to try and have a normal life, why no sense of relief?
This morning, for whatever reason I don’t know, I went back and re-read the series of diaries I posted here when my mother passed. After eleven years it was like reading them for the first time. And I saw that at this point after her death, I also had yet to experience any relief. I also was depressed, and had begun the diaries almost exactly two weeks after she died, just like my current depression began two weeks after my sister’s death.
And as good and reassuring as it was to see that, it was the comments that this community left in each diary that have felt so incredibly healing. Reading these comments, eleven years after they’d been written, yet completely pertinent to today, has made me feel so much better.
Person after person shared their own experiences with caring for an elderly loved one, and often with dealing with their passing. I felt surrounded by friends. By support. By people who understood. They spoke to me today with all the power they had back then.
And so many people had kind words to say about me taking on the role of caregiver. I was reminded not to beat myself up over things I could have done better. That I am a human being and therefor imperfect. That I’d done the best job I was able to. About taking time to heal. About trying to get back to living a life for myself. Am I out of my funk? No. But I’m certainly in a better place than when I woke up.
This, I think is the unsung greatness of Daily Kos. I’ve said it before, and I’ll say it again, the motto of this site could be “Came for the politics, stayed for the community.”
I don’t know how many of the people who left such helpful and healing comments all those years ago are still active members today. Some, definitely. I hope they see this.
So let me thank you again. You helped me eleven years ago, and this morning you traveled through time to help me again. You are a wonderful community.
And I cherish you.
UPDATE: What can I say? I like to think of myself as having some skill with words, yet I find myself completely lacking in the ability to adequately express my reaction to, yet again, an outpouring of support and sharing from this community. The best I can come up with is simply a heartfelt thank-you, as well as a pledge to be as better and more involved community member myself going forward.