April 5
He’s very thin here - this was taken at Hayley’s wedding not long before the transplant. He was dragging an oxygen tank behind him.
On this day a year ago the first caretaking hospice nurse came to provide home health care. Randy had been up in the night and I struggled to help him in the bathroom - he weighed less than I do but he was hard to maneuver. I had given him morphine after he went back to bed and when I woke up in the morning he was non-responsive. I was terrified that I had given him too much.
When the nurse came into the room she said, He looks peaceful. And instead of pausing to ask her about that word - which might have sounded like he was about to die - I ignored what she said and told her my worry that the morphine I had given him had caused him to fall into this state. She told me, in the same way you would reassure a child, that the doses were too small to cause any problems.
She went on to take Randy’s vitals and so on and the phone rang. I left the room to answer it and it was the hospice social worker. So now Randy is unconscious, he’s in the hands of someone I don’t know, I don’t know what’s going on, and I’m talking to the social worker and unable to see what’s happening with Randy. I think she asked me how things were going and I was so overwhelmed that I was almost panting with the effort not to cry because I can’t talk and cry at the same time. She could tell I was close to breaking down and she asked, Can I come? And I was so relieved to have someone focused on me for a moment that I just said, Oh god, yes.
So she arrived and I answered the door and we went upstairs and I felt very busy and crowded and pressed to make decisions when I didn’t even know what the questions were. I told them both that I was worried about being able to manage Randy’s weight and described what had happened the night before. The nurse said, Maybe he won’t get up again. And, once again, I didn’t really respond to that: Why do you say that? What do you mean? What do you see? What I thought was, maybe he will get up again - I was completely focused on what I would need to take care of him and realizing that I did not know what the fuck I was doing.
The social worker said, You’re probably going to have to hire someone 24/7 to help with his care. And I was amazed - I had truly never thought of this. And I realized that instead of having him in the hospital with medical people who DO know what they are doing, paid for by health insurance, Randy was in my hands and I would have to figure out what to do with him. I asked the social worker if she knew anyone I could hire and she said she was not allowed to recommend anyone, but she gave me a list of people who had done this work for other patients she knew. The distance between me and professional care seemed to grow with every moment.
The nurse gave me a bag of drugs and things and told me about other things we would need - like a hospital bed - and I told her to go ahead and order them. So she got on the phone with whoever provides medical equipment and the social worker gave me more information. I wonder now what I would have been doing if they hadn’t been there making phone calls, knocking on doors, talking to me. Would I have been on the bed with Randy, holding his hand, talking to him? But I felt like I had to oversee everything, make decisions - none of the daughters were with me yet so I felt very much like I had to manage every detail.
Eventually they left and at some point I called Daughter Hayley - or maybe that was the day before - and asked if her husband could stop by on his way home from work to break down the computer and move it for me. The bedroom is very large, but part of it was taken up by a big table with Randy’s huge computer, second monitor, speakers, and external hard drives. Everything was held together by cords and I knew if I took it apart I would just have to put everything in a box - I would never be able to put it back together. I wanted to be able to make room so that when the hospital bed arrived it would be in the bedroom - I hate it that so many patients end up in the dining room looking completely out of place and on display in a weird way.
Hayley’s husband Chris - who, fortunately, is big and strong - arrived at the front door. When I opened the door he told me that his mask had broken and asked if I had an extra one for him. I just shook my head and told him not to worry, that we were way past Covid concerns. I was so grateful I hugged him, which I don’t usually do, but I needed someone to hug, someone to hug me because I needed some strength to get through the rest of the day. He took the computer apart, reassembled it in the office, took the table apart and took it to the garage. He left, and I told him I would call Hayley later.
And then I started making calls to home health aides. No one answered - I just had to leave messages and hope for the best. And then I called Hayley to give her Randy’s condition and ask if she wanted to be with him. I probably called the other daughters too - I don’t remember, probably because I felt so badly about having to tell Hayley.
After Chris left, the hospital bed arrived and the driver had to drag it upstairs and set it up. The social worker had told me that to get Randy into the bed I should call the fire department and they would come out to move him (I live in a small town). I asked the driver about this, and he confirmed - just call 911. Which seemed crazy to me - this was not an emergency. So I called the non-emergency line and asked about firefighters moving someone to a hospital bed. I was so apologetic - I couldn’t believe firefighters have nothing better to do than move old sick people from one place to another. The person who answered the phone went away to ask questions and when she came back she told me to call 911 to make the request. I felt ridiculous, but I called and asked for a bed lift (?).
While I waited for them I looked at the bed and thought about it - it looked uncomfortable. I found a down comforter, folded it in half, laid it on top of the mattress, and I tucked a sheet over it. Three firefighters showed up and looked down at Randy. They said that having a sheet under him would mean he could be moved without jostling, so they lifted him in a sheet sling and set him on the mattress, and that was where he stayed until he died. Lots of times when he was in the hospital I would climb into bed with him, but now I worried about hurting him and I kept my distance. Which I wish I had not done. What if I had just doubled his morphine and climbed into bed with him?
And what if I had asked daughters to come and be with me? I just didn’t feel comfortable doing that, which, in hindsight, was probably not good for me or for the daughters.
It was a long hellish day and so little of it was focused on Randy - I regret that more than I can say.