I think there is not much time left.
The feelings are complicated, not simply one way or another. There is a part of me that seeks the relief of this being over with — this is natural, it will be natural to feel relief afterward too. All of the feelings are natural. Human relationships are complicated, our interactions throughout my life have had many sides to them.
Grandma was diagnosed with lung cancer in 2016, however she was showing serious symptoms in 2015 — not from the lung cancer in her lungs, but the bit that threw off and started growing a tumor in her brain. Symptoms were, on paper, similar to that of a stroke, however their onset and progression were entirely different. The loss of her personhood and connection to reality in that time was somehow the scariest part of all of this. Scarier than a stage IV diagnosis, scarier than the reality that this was likely to be the end. It was losing her.
Shortly after admittance to a hospital nearby — the one I was born in actually — Dad had called and ask that I come spend some time. While unable to piece together a sentence, Grandma seemed very happy that I was there, and that the three of us existed within a space while her favorite show (Two and Half Men) was on. I found the moment then very hard-hitting, and even now it wrenches me apart. We came back from that for a while, some temporary steroid use in addition to the gamma knife to cut down this brain tumor some had her return, mostly, to herself. Some little bits of memory and function were gone, a likely result of brain damage.
— this is referred to as an “ABI” rather than “TBI,” an Acquired Brain Injury, resulting from illness ala brain tumor. I do not know the exact mechanisms but it makes sense that something squishing important bits for a bit can damage them.
Still, for a while she was active. She and I would go places and do walks and talk a lot. It was nice, probably the closest to what I perceived as the ‘good’ relationship we had in my childhood.
It was the point where Grandma passed 5 years of treatment, wherein the staff gave her a thank you card. At the counter, she was done. For the day. In her mind, her seething hatred for treatment as it was inconvenience (and unsaid by her, but obvious to me, gave her anxiety), she decided that “you’re done” meant forever.
5 years is certainly nothing to sneeze at. Much of this can be attributed to newer treatments. You see commercials for Keytruda and you may think it’s just another mess of nonsense being pushed on you but I am witness to it helping, and my Grandma carries the evidence. Her first doctor — someone I should really reach out to and thank — really pushed for it as she was actively doing research into it. I thank her for that.
Regardless, Grandma’s treatment really wasn’t done, and although we attempted multiple conversations, at times with help from a social worker, Grandma went back for one more treatment some 9 months after the last one then refused from there.
Her health has since declined.
Grandma’s health declined in patterns. Getting significantly worse for a spell, then plateauing. Sometimes, if we are imagining a graph, her health would improve slightly from this plateau, but it mostly just stuck there, a straight line, waiting for the next fall. Plateaus would last for some time, becoming the new normal, the new degree to which either my Dad or I could handle.
She had a sharp decline in health leading up to Oct 2022, and it was a moment where, although Dad and I had previously discussed getting help, it became evident we needed it. Grandma had gone to the bathroom, using a tripod walker, only to somehow fall into it in the tightest part of the hallway, becoming sandwiched between the sides of it.
Dad was furious with me, as though I could have stopped this.
Certainly, her decline in mobility was worth noting, but there was also no stopping her from her attempts to do things herself regardless, even after this point. She had a number of falls while doing these things, all the while, shouting at us to leave her alone. Frustration.
But it was the tripod walker incident that had him finally contact Hospice. Whether or not he’d been given their information through insurance, or Grandma’s former doctors, I have no idea. I thought in-home hospice would offer quite a lot for us. It did not.
In-home hospice is not what you imagine it to be.
Accent lists a great number of people who can come in to help in their pamphlet — aides, social workers, the nurse and/or doctors, musical relief, chaplains… family and friends… volunteers…
Then you throw in a family that is emotionally immature — why bother with a social worker? — not interested in music (or perhaps ‘embarrassed’ by whatever they perceive a music therapist to be) — not religious, and then top it all off with one loud person who decidedly does not want a great number of strangers in the house. You end up with a shower aide twice a week, a nurse most weeks, sometimes a doctor, and all of the care falling instead on the “Friends and Family.” And I am the person who does not want volunteers in the house — pay people? just pay them?
As was described to us when signing on, most of the care would fall on our shoulders, and it has. We are both overwhelmed, and have been since the start of our tenure with Accent.
I recall, sitting in the living room on the floor that day we had the discussion with someone from Accent, feeling a bit blindsided by just how little they would do for us. It is obvious now, the difference between in-home hospice and in-home care, but we all went into that not knowing. I imagine a lot of people don’t know, as I’ve fielded a huge number of questions from friends and family about what Accent is offering…as well as the reaction to how little it is overall. They find it wrong, but it’s simply a matter of not having the knowledge as to what it is.
For the record, I find the shower aide to be my favorite hospice person. She is kind, timely, could inform me how to stop wasting my time in the shower, and is just overall an amazing person who is amazing at her work. I have digitally sculpted her an elephant, the print of which should arrive on the day I write this. Actually perhaps not, it appears to be at the post office but not on the truck. Hm.
My mental and emotional boundaries with regards to care for my Grandma have been far exceeded. Even physically it was a bit of a challenge, although got easier with time as I acclimated to it, and now…well…
It is 2023.
As Grandma’s mobility declined, so did a number of her other systems. Decline, plateau, decline, plateau. A couple months ago she had a decline that had me where I am now, on edge that the end is quite near. She had ceased eating for the most part and her bowel movements also lacked. However, she resumed eating and pooping following this and we had a little bit of improvement in her wakefulness.
It was, however, ultimately a slow decline. It has been a few weeks and she has eaten very little, she has spent a lot of the time sleeping. She has historically been awake most, and most agitated, in the morning.
I realize now this is a longstanding issue. Anxiety about Dad not being home. When I was a child, living some 300 miles north of here, and Dad would come to visit on the weekend, there were times he had to turn around and go home as her anxiety would demand he return. As he works now, she feels anxious when he is not home, and angry at him when he gets home over his…perceived abandonment.
I think this is his last week of work at this location. We have not discussed how I feel it important he spend some time at home now, but that is a personal perception of what may be good for him, and not necessarily an understanding of what truly is.
The last nurse visit on Saturday — someone filling in for ‘our’ nurse again — was with a woman who was a bit more proactive in certain regards, but lacking all of the continuity of what was happening. She was also incredibly bothered by the cigarette smoke…agreed. She palpated Grandma’s abdomen and found something strange that is a bit of a mystery, a mass approximately located in the curve of the large intestine just below the stomach. We debated what it could have been for a moment, constipation possibly, but ultimately left it as an oddity. I have to wonder if it may also be an obstruction by way of cancerous growth.
At this point, it does not matter.
Grandma’s decline this time has also led to a month of steady weight-loss. I am surprised when I help her change, or go to the bathroom, or anything else where I see her body, by the lack of any fat or muscular tissue. I describe what I see as similar to outdated depictions of dinosaurs: flesh loosely draped over a skeleton. It is unsettling, and sad, and unsettlingly sad. Last time I took her to the bathroom my eyes were drawn to seeing the front of her pelvis (skeletal) through her skin. The final reserves of fat she keeps — those in her thighs — are all but gone.
She does not want to eat. She sleeps.
She still is more present than when her brain tumor cut herself away from her physical being.
I grieve again.
I think there is not much time left. There are no reserves of fat within her, her coughing was noted as weaker — although I hadn’t noticed as it has become the background sound in my life — her trips to the bathroom are lessened heavily. She remains indignant, unwilling to accept help, and expresses her rage regularly, at least when she is awake. Any moment of sickness will be devastating, although it seems more likely she will just crumble into nothing.
I hope, beyond anything else, that it is a peaceful passing in her sleep.
I fear, however, that in her body shutting down, we will experience things that leave us with trauma.
It is complicated. Feelings one way or another — she has been decidedly rotten to us, Dad more than me, but there is still love there. None of her rage, agitation, anxiety, are new bits of her personality. Their presentation is different in rapidity nowadays, but it is not new. Love feels hard to find, and Dad deals with not hearing it from her but once that he can recall. We care, dutifully, but I know we are full of grief, we are exhausted, resentful. I know, I understand, that the feeling of relief following her passing will be natural. I am uncertain if Dad knows.
I worry. I sit in my sorrow, and I worry.
I think there is not much time left.