It was a year ago that my sweetie entered into hospice care. His decline had been steady since late 2021, but in January of 2022 the slide became steeper. He was weaker, the hallucinations were more frequent and more severe. He would wake up many times a night, insisting that he was expected to “go somewhere and await instructions from the committee.” It was a trial keeping him calm, preventing him from leaving the house, or from falling and hurting himself in the attempt.
At the same time, the LBD was playing games with his blood pressure, rendering him so weak that he would pass out. He was dehydrated: it was difficult to get him to drink water, and he was falling constantly. I could not convince him to give up on the idea of walking without help, or trying to get out of bed at night. The separation anxiety got worse as well, so I could hardly leave him for a minute without him trying to get up to find me.
We were exhausted, and frustrated, and scared. Several trips to the doctor for IV fluids would give slight relief for a day or maybe two, but not much more. His blood pressure would drop to close to 80/50. And the hallucinations continued, but no longer benign. The Committee was constantly ordering him to go and await instructions. Or he would flinch and recoil from invisible blows. Heartbreaking stuff.
Finally, in mid-February, after a number of doctor visits, two ER visits, and more, our doctor, along with the head of the clinic pharmacy and a couple of other doctors, suggested quetiapine. We decided to give it a try. His first dose was given the evening of Friday, February 18, 2022. It took three doses for me to realize that he was having a severe reaction to the drug, and after a frantic text to our doctor, decided not to give him the Sunday morning dose. His body was spasming so severely that he could not sit in a wheelchair, could not walk, could not hold a drink or a spoon, or anything for that matter. Moving him was brutal on us both, as his body would spasm and become rigid, and every movement was a fight.
I took him off the quetiapine after only three doses, which isn’t a lot, but great damage was done. The spasms subsided, but not right away, and not completely. And the rigidity – that did not leave. His body fought involuntarily against every natural movement. It expended precious energy and made everything a fight; getting into and out of bed, eating, drinking, using the toilet, getting dressed. Everything was a fight. He wasn’t being belligerent. His body was. And it almost broke us.
During this time he was also exposed to Covid-19. Not just in the ER, but at home, when a visitor did not disclose a sick husband, despite rigorous questioning about everyone’s health before I allowed her to come. His illness, she thought, was “only a sinus infection,” I learned two days after her visit, when she texted to let me know he had tested positive for Covid. “You told me everyone was well,” I said. She didn’t think a sinus infection would be a concern, so didn’t tell me about it. But it is very much a concern for someone as vulnerable as my sweetie was. I am still angry and dismayed by the thoughtless betrayal.
Neither of us tested positive, but that doesn’t mean there was no damage from the exposure. Combined with the harsh reaction to the quetiapine, it was a monstrous precipice we faced. On February 25 the doctor ordered hospice care. By the 27th our house was filled with supplies and equipment, intake specialists, nurses, councilors, and binders full of information. It’s difficult, even now, to describe my state of mind as anything other than gobsmacked. Gobsmacked by the thoughtless actions of a visitor, by the guilt I felt surrounding the quetiapine nightmare, the exhaustion, the despair, the sorrow – all of it, while adjusting to having people come into the house after 2 years of Covid, of changing practices due to the new reality, and at the same time the devotion of those hospice carers, my family and a few close friends.
It was chaotic, yet at the same time leveling. I figured there would be an adjustment period as we settled into this new routine, with hospice help. But we never got the chance. Three weeks later, he was gone.
I will say this: Hospice care is wonderful. The hospice carers we encountered were wonderful, caring, compassionate, professional, and just plain good people. But there were limitations of what they could provide. My nights were still spent constantly addressing his needs, physical, emotional and behavioral. He needed constant care, with toilet needs, drinking, eating, calming, adjusting, encouraging, occupying. The hospice carers helped with hygiene, dressing, and nurturing two to three times a week, and I never wanted for supplies, never wanted for information, never waited more than an hour to get someone out when needed. It was psychological help, but it wasn’t relief.
Relief came from family, mostly our nephew, who would sit with John for a few hours on Wednesday, so I could get my weekly allergy shot and a few groceries. Others offered to spend time with him, but it was so hard on him. He was anxious if I was not right there with him. He was better with our nephew than he was with anyone else, but even then for only a few hours.
Perhaps if I had considered hospice earlier, we would have had more time to work into a routine that would have been easier for all of us. Covid complicated things, as did my own ignorance about qualifying for it. I find myself thinking “I should have started hospice sooner,” and kicking myself for not doing it. But I don’t know that it would have mattered in the end. We worked so hard to keep him going that I don’t really know when we crossed the threshold, and if it would have helped him to do so any sooner. And covid. Fucking covid. Balancing the hardships of isolation against the risks of exposure. Dealing with the limitations of an overwhelmed healthcare system for more than two years. Trying to make the best of any number of bad situations. And always wondering if I was doing enough, doing the right thing, the best thing.
It very often felt like I was expected to go somewhere and await instructions that never really came.
Lewy, Dewey and me 