This week has been a most profound journey. Last Sunday it was clear my Dad, and more importantly, my Mom needed more help. The Waters staff and hospice were suggesting that we move my Dad into the enhanced care unit where he could be watched over 24/7. They showed us the room which was a small sterile studio apartment on the other side of the building. We had been resisting moving my dad for a few months, but it seemed like we were going to have to cave.
Later that afternoon Joanne from hospice came to help my Dad with a shower as she has been doing every Monday. Sometimes he would be cranky and send her away, like the prior week. She had heard about his 5 falls in recent days and did not think a shower was a good idea. The Waters has a bathtub for transferring a person from a wheelchair into this amazingly great tub with whirlpool. She and I gave Louie quite the spa treatment.
When I mentioned to Joanne that we were getting pressure to move him to the enhanced care unit, she very strongly said she thought that was a bad idea. He was already so confused and agitated, that would only exasperate the problem. I felt exactly the same way. She gave me a phone number of her friend who used to work for Allina hospice and has just started her own business with her friend. They do in-home help and overnight care.
Tuesday we met with hospice and our nurse at the Waters. We told them we did not want to move Louie and we would do whatever we needed to keep him in what has now become their home in the last year. Scott and I agreed we would trade off nights until we could get some more overnight help in. Scott stayed on Monday night and I stayed on Tuesday.
Tuesday was a long hard night. Wednesday morning he couldn’t walk at all. They managed to get him into the new easy lift recliner chair and we started him on oxygen. Hospice had been trying to get my dad to start using oxygen about a month ago, but he refused. Now that he was practically comatose, we were able to get oxygen in him to ease his labored breathing. Transporting him to the bathroom was easier than to his bed, but by the end of the night they had to use a lift rather than a wheelchair. He settled in, seemed more comfortable, so we left him to sleep in the chair overnight. It was my night to be off but I stayed. Scott slept on Louie’s bed and I slept on the sofa. The hospital bed was coming the next day to make life easier for everyone. Radar was on his lap all day, all night as Louie slept for 24 hours straight. I was certain he was going to die that night.
Thursday morning he was a new man. Still quite confused, of course, but was chatty and awake most of the day. The dining room staff sent up breakfast for all of us and Louie ate more than I had seen him eat in a long time. We also had dinner that night of sandwiches from Broders and Louie ate half a caprese sandwich. We had a party in his room with his new bed.
In the afternoon I gave him a blueberry muffin left over from breakfast. I asked him how he liked it and he said it would be better with butter. We had one more muffin left so I loaded it up with butter for him. He loved it!
All seemed well until evening when he kept wanting to get out of bed to go to the bathroom. This required two people and a wheelchair ride. He expressed intense anger that we wouldn’t just let him get up and go. “I can do it myself!!!!” By the time they would come, he would say he didn’t have to go. Five minutes later, repeat. On and on.
It was a very long night, and we knew we needed to do something different. Another hospice meeting and new drug schedule. Scott and I both stayed Wednesday, Thursday and Friday night working together with the Waters staff. Wednesday night was another horrible night. I don’t remember how many times we called the nurse. Apparently, Thursday night was 11 times. Last night, not even once. They actually came up to make sure we were all ok since they hadn’t heard from us.
The video baby cam was a GREAT suggestion. We could keep an eye on him at all times if we had to leave the room for a bit. Thank you Scott Adams!
On Wednesday night, I thought sure my Dad would pass by morning. Instead, he woke up after 24 hours and was almost his old self. The “energizer bunny” that has been Louie’s nickname for several years was appropriate once again.
I knew this was probably his surge day. I told my Mom what that meant. I said this day is a gift to take this opportunity we’ve been given to say whatever we all needed to say to him. I also explained that we all needed to let him know that we were going to be OK. She is being a strong champ these past few days.
Today he slept most of the day. We had two good days after Wednesday with many special moments. Today I had a bath at home and a pretty good nap. Tonight we have our new overnight help and I sent Scott off to sleep at home and have a good break. It’s almost 4 a.m. and all is calm. Nothing but love and gratitude on my plate right now.
And my rock, Radar, is the one taking care of all of us, most especially Louie.