and gone

Yesterday night, just about an hour after my last post, my dad crossed over. I am sad, but glad that he is at peace now.

Nearer

Probably only a few more days now, if even that many. Or maybe only a few more hours. Can we learn about living from the dying?

Time passes

It feels like we are all in a holding pattern. Dad is still bedridden. I don't expect that to change. Some days he mostly sleeps, or naps, with short periods of wakefulness. Other days Dad has longer times of wakefulness, and we talk a bit and joke around. His sense of humor hasn't changed. Dad almost always recognizes us when we come to visit, but often later thinks we are somebody else from his life. Some days he eats and drinks a small amount and other days takes only the water he needs to swallow medications. The hospice nurses say Dad is "transitioning", a period before death that can last anywhere from hours to weeks. Nobody really knows what to expect.

Many changes

The last 2 weeks really got bonkers with my Dad. He slept only a few hours a night and would wake up believing strange things were happening. He threatened his caregivers, refused to take medication, tried to leave the house in the middle of the night, tried to call 911, sneaked medication he wasn't supposed to have. And then the hallucinations started. During all of this hospice would make changes in Dad's medications, trying to find something that would help him sleep during the night, and then also trying medications to reduce the delusions and hallucinations. I kept feeling like I was 2 steps behind.

Every time we, the family members, thought we had a good plan in place for dealing whatever the most recent craziness was, we'd just as quickly find out we were caught short. Again. Always hoping the next medication change would help. Wondering what might happen next. Wondering if the decisions we were making were the right ones.

We were all committed to keeping Dad in his home as long as practically possible, and keeping him as happy and comfortable as possible. Fortunately, Dad hasn't had issues with pain so far, ibuprofen has worked for any physical pain. The emotional pain is harder to deal with. Pain caused by delusions; of events he's imagined happening, or imagined happening in the past. No amount of discussion would convince Dad that those events weren't real. Much like while I'm dreaming, my dream seems real while I'm in it, and the emotions I feel in the dream and even when I wake from the dream are real. The events aren't really happening, but the emotions are. We finally stopped trying to convince Dad that those events didn't happen, and instead just let him know that we were sorry about how awful he was feeling. He doesn't like that so much either, because he feels we are patronizing him.

Throughout all of this, I've mostly felt unprepared and frequently felt inept and frustrated. With myself.  While I am, I think, ready to deal with my Dad's death, I see now that death is just an ending. Its the chapter leading up to the ending that is difficult and contains many surprising twists and turns. I've lumped it together with most of the rest of life, as in, there is no one right way to do this. We just do the best we can, seek advice from those who have traveled this way before, make mistakes, take our bruises and keep going.

The day before yesterday, because of Dad's unpredictable and sometimes aggressive behavior, we were wondering if we would have to move Dad to a facility instead of providing care in his home. Yesterday, things changed. Dad seemed okay in the morning, by our most recent standards, but then slowly started to sort of deflate. It started with difficulty in moving his left arm and leg, by afternoon he was in a bed, sleeping. We can rouse him to take his medications, talk a little bit, but then he just goes back to sleep. He seems very comfortable, and its like he's been waiting to take this nap for a long time. There is relief. For him, for me, for the rest of the family. We don't know what changes will happen next, even the hospice staff say Dad has surprised them at every turn. Right now, he is resting. We are resting.