Occasionally during the past few days, I’ve been overcome by a momentary sense of panic and dread, as if I’d forgotten something I was supposed to or as if something terrible was about to happen. It’s not a big deal, more of a frisson than true panic, but I can’t think of anything that is currently happening (or not happening) that would prompt such a feeling.
Although I would have thought I was long past the time of grief-related body memory, this feeling seems like something being resurrected from the past. Twelve years past, to be exact.
At this time twelve years ago, I was dealing with Jeff’s various end of life issues, such as terminal restlessness and confusion. Some people, toward the end, can’t sit still, and so it was for Jeff. Because of the cancer that had spread to his brain as well as the potent pain killers he needed, he was unsteady on his feet, and he tended to fall. So, sleep-deprived me stayed with him all night, pacing with him, getting him to back bed in the hopes he could fall asleep, and then pacing again.
I didn’t talk about any of this back then, at least not here on my blog, because it seemed such a betrayal of him, but after he died, which seemed to me to be the ultimate betrayal, all bets were off, so I wrote about what I felt. Until then, I had hospice to talk to.
Many people are leery of hospice, perhaps confusing them with the Hemlock Society, but I only have good things to say about the hospice in western Colorado. Although they were scheduled to come once a week (we were settling in for the three to six months the doctors said he had left to live), he deteriorated so fast that I called the hospice nurse every day with some issue I had not previously encountered, and she always responded, first by phone, and then with a visit.
During the past twelve years, I hadn’t thought about that time very often — his death and my grief were such traumatic experiences that they overshadowed everything else — but if it hadn’t been for hospice, I have no idea how I would ever have known what to do for him. Would never have known what was happening.
Next week, it will be twelve years since we admitted him to a hospice care facility. Although hospice is mostly an at-home program where they help the family and give them the tools to take care of their loved one, this particular hospice also had a nursing facility to take care of the patient for short stays to give the caregiver a rest. Oddly, although his admittance was for my benefit because it had been many days since I slept more than an hour or two — I’d been staying up all night with him and was totally exhausted — I didn’t sleep any better when he was away, knowing he was with strangers, and he was dying alone. (He didn’t die alone, though. I was with him when he took his last breath.)
There are a lot of things I can barely remember from five and ten years ago, but that whole month from twelve years ago is seared on my brain and in my body, apparently for all time.
Instead of exacerbating my grief (and despite the momentary pangs of panic), these memories today are accompanied by gratitude for the nurse and social worker who helped me through the worst time in my life.
[Hospice helped with my father, too, but by then I knew a lot about dying (from an outsider’s point of view; obviously, I know nothing about dying from the point of view of one who is dying), so although I was grateful for their help, they weren’t quite the angels of mercy that the first hospice people were.]
I wasn’t so far gone in grief after Jeff died that I neglected to thank the women who helped me with Jeff — I did, sincerely — but over the years, I haven’t often thought of that time.
And now, twelve years later, I am remembering with love and gratitude, and also, apparently, with panic and dread, though it seems silly since there is absolutely nothing I can do to change even a moment of the past.
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Pat Bertram is the author of Grief: The Inside Story – A Guide to Surviving the Loss of a Loved One. “Grief: The Inside Story is perfect and that is not hyperbole! It is exactly what folk who are grieving need to read.” –Leesa Healy, RN, GDAS GDAT, Emotional/Mental Health Therapist & Educator.
Bertram's Blog 
March 15, 2022 at 2:01 am
Recovering from Covid with other health issues, five anniversaries in February and March regarding with my soulmate and now war and destruction in Europe.
Body memory helped to understand better of my grief. Some how I am still exhausted and confused. I continue to read your blogs and news in French and English.
At any topic your way of thinking, expressing, your personality and your style of writing always interesting and continue to help me learning.
I consider every blog of yours as literature for me.
I admire your gratitude for the hospice.
First time after four years I started to get some peace. But honestly I am still lost and confused.
Your love and gratitude for hospice a great homage for them.
I hope for the coming anniversary your will get calme, pleasant and peace.
March 15, 2022 at 7:44 am
I am mostly at peace. There are moments of feeling lost and confused, as well as the moments of panic and dread, but they are truly just moments, and would probably get lost in the shuffle of activity if I weren’t spending so much time alone. Thank you for the compliments on my writing. Sending you wishes for peace.
March 15, 2022 at 7:33 am
My late wife was quite involved in the local hospice and palliative care organization, and it’s something I believe is underappreciated and underfunded. It’s heartbreaking to think of all the people who die in miserable, over-medicalized settings for want of more suitable hospice care. We seem to focus on quantity of life to the exclusion of quality.
I wonder if the feeling of dread (or frisson) is related as much to the future as the past. I have a theory that the changing of seasons at higher latitudes prompts people living there to be more fully aware of the passage of time, and to get on with things. Although the winter here has been colder and snowier than usual, and as such will likely last longer than usual, the days are getting notably longer and spring is obviously coming. The coming change of season is making me a bit more motivated to get on with things, even though the getting-on fills me with more than a little dread.
March 15, 2022 at 7:51 am
That’s an interesting point about the frisson being related to the future. Not necessarily the near future (later today or tomorrow), but the more distant future as I have even less control of my life and my aging body. The upcoming anniversary of Jeff’s death could be a reminder that I will be dealing with that future alone, though to be honest, I don’t need a reminder. I am very aware of being alone. Not lonely. Just aware.
I got a insight into the way people are forced to live longer in my grief group. So many of those people were given hope of cure by the doctors, and so they kept their spouses alive and in pain, and they died anyway. It was their biggest regret, especially since so few of those people were able to say goodbye. Why would you if the doctors said there was hope? So yes, hospice is a better alternative.
March 15, 2022 at 8:13 pm
It’s next week for me, too, that anniversary. 5 years now. As I may have said awhile ago, we were not offered hospice at an appropriate time, until it was down to the last day or so, after he went downhill rapidly, and yes, I felt and still feel cheated. Things did not need to go to such a medicalized extreme, as Estragon says above. Be that as it may, I’m glad it’s over and glad he’s not around for this current thing. I just regret and resent the fact that these so-called professionals failed him, me and us, when a simple call to hospice could have averted all that traumatic chaos.
March 15, 2022 at 10:01 pm
It’s been five years, now? Oh, my. It’s hard enough to deal with death and living without that special person, but it’s a whole other thing having to live with the knowledge that you were so cheated by the medical professionals. My father’s doctor was the same way — he refused to prescribe hospice until the very end. I still don’t understand why he was so insistent on keeping that 97-year-old man under his care. Hubris, probably.
Take care of yourself this week.