Note: This post is a part of a series detailing my family's fight against dementia and elder abuse.
My grandfather entered Memory Care for Thanksgiving of 2019. The nurses and staff fed, cared for, and entertained him for the next five years. Through the Covid-19 Pandemic, lock-downs, countless flu shots and falls. Through holidays and summer visits, podiatrists, dentists and wound care, he thrived. And then, slower than expected, quicker than one could have guessed, he was gone.
The intervening time wasn’t stasis. He entered care being able to walk. But he started shuffling, and the doctor said this was dementia-related aphasia. Then he was using a walker. But after a fall or two, he switched to just a wheelchair. A frank conversation with a physical therapist made me realize he wasn’t going to gain back any more function. There was no more strength in him. The bed alarm was the last change. Nurses and techs were trying to keep him from falling without hampering his ability to move around, so they set a pad under him that would go off when he tried to get out of bed. And with that, the staff at the care home felt he had turned a corner. Once the home health nurses let us know they agreed, we had a discussion with his doctor and amongst ourselves. It was time for hospice.
Hospice was a mixed bag. My grandmother lasted only a week or two in a hospice center after a stroke, but this was different. Rather than moving him, he thankfully stayed in place at Memory Care. The familiar setting helped him as he slept more and slowed down. Hospice evaluation got a hospital bed so he could be more comfortable for longer, and they could add rails to keep him in place at night without restraints. The nurses were wonderful and came almost daily. Like all nurses, they were overworked. Shuttling between care homes, I could tell they had a lot on their plate. But they listened patiently as I asked about the bed alarm. Where was that damn thing, and did the techs hear it go off? Even the grief counselor was just the right touch, never pushy. They were all amazing as I tried to make sense of this new phase.
The hospice administrators were not my favorite. Every bad thing John Oliver said in his segment on Hospice was bouncing around in my head. We got multiple calls from providers asking us to pick them. A particularly scummy one called us to get information for a Veterans Day ceremony. They tacked an appeal to consider them at the end of the call. I discovered the certificate they handed out in my grandfather's personal effects and saw they had misspelled his name. There were a lot of complicated emotions around that time, but it felt like my grandfather was just another billing to them. I would honestly rather have chopped my own arms off than give any of those vultures money. I wish I could have billed the nurses directly. Or that we had a national healthcare scheme like a normal country.
I had planned a quick visit before any of this happened. Living remotely, I usually picked something between holidays so it was cheap. I moved up the trip as he had a few more falls and nurses were seeing signs that this time was different. Once he went into hospice, I moved my flights once more. At 1AM the morning of my flight, we got the call that he fell again and broke his hip. It was time. One more booking modification, my brother booked his, and I arrived as soon as I could.
As to why he fell again, no one could say exactly. Basically, dementia robbed him of the ability to remember that he could no longer safely transfer to the wheelchair on his own. A bed alarm was ordered, installed, and in use according to every person I talked to. He was as safe as we could make him, but he still fell. And that brought on his end. The call with the doctor from the airport was frank and informative. He was in pain. No surgery would help him heal and recover. He might never wake up from an operation. Again, it was time.
For those without hospice experience, pain is the one thing they handle incredibly well. Slow decline has no timeline (my biological mother languished in hospice for a year and a half), but a painful fracture has a procedure: make them comfortable. Blocks on opiates and pain management regimes are pulled back in favor of less pain. Nurses came in the middle of the night to start medication, mostly morphine and anti-anxiety meds so he wouldn't get restless and shift, causing more pain. The nurses were there daily to guide on-site caregivers and techs to reposition him when he tried to get up. And, not understanding where the pain was coming from, he did try to get up! It took 4 people to get him settled again. I’m glad I was there to see him, even though I couldn’t help. After the fracture, his pain required medication every four hours, then two, then hourly. We could tell his body was shutting down. He never got up after the first full night and slipped away in the early hours a few weeks after Thanksgiving.
The last five years in Memory Care were the best we could give him. More importantly, they were what he needed to be safe and free of anxiety that so often characterizes dementia in a non-specialized environment. I certainly couldn’t have handled him, family issues, and a job to care for him. But he had the resources to provide that for himself, overseen by his grandchildren thanks to his sound financial planning. We could all be so lucky.
My brother and I cleared out his effects over the next week. We hung out in childhood haunts and visited friends and family. From the care home and a small storage unit, we divvied up his remaining belongings. Some went to Goodwill, and I shared a tender moment with the worker that took them from me and could tell I was bruised. Others went to family. And some were packaged up for the flights home top opposite sides of the country. My brother and I cried and reminisced, and it felt more restorative than anything in the previous five years. We took the time to savor his memory and his passing.
In his bedside drawer, I found the last piece of the puzzle: a noisy buzzer box with a red light. The pigtail was unplugged. The battery case was broken open, and the battery was inserted backwards. The bedside clip that held it in place was bent and broken. In some midnight hour, I would guess he got tired of the beeping of the bed alarm. Or was anxious not to alert the nurses. Or just wanted to get up on his own to assert his independence. Whatever the inscrutable reasons, he disabled it and placed it tidily into a drawer for me to find. A testament to his tenacity, to do things his way until the end.
