Although I engaged the services of a home care agency over three years ago, Kate’s recent decline and then her bout with COVID have led to a radical change from the past. Previously, her caregivers had little responsibilities other than being with her. That is why I have always referred to them as sitters rather than caregivers or CNAs. They engaged Kate in conversation and helped her identify people in her photo books. I always had her meals arranged for her before they arrived. Frequently, they spent time with her as she ate, but they never had to fix a meal. Neither were they involved with toileting or getting Kate dressed or ready for bed. Much of the time they were here, Kate rested.
It’s a different story now. She has been bedridden since arriving home from the hospital. They need to change her underwear, try to keep her turned (which hasn’t been successful so far), bathe her, feed her, and, if we can, to get her out of bed and into a wheelchair and back again.
Since I have been home most of the time (8-hour shifts) they are here, I take note of the things they do for Kate and the skillfulness that training and experience provide. Although some people have encouraged me to bring in more help in the past, I had relatively few challenges that I felt I couldn’t handle. That is not so anymore. In the past, I never looked forward to having the caregivers. Now I am eager to see them. So far, I have been an assistant to them while they are learning more about Kate, but in the future, I envision their functioning pretty much on their own. When that happens, my role will be that of a manager/supervisor. That will be more comfortable for me.
It is too early in this new phase of in-home care for us to have anything like an established routine. Kate has been sleeping a lot. We monitor her via an iPad connected to the web cam that I’ve had a couple of years. We frequently go into the bedroom to check on her as well. When she seems to be awake, we make an effort to turn her, change her and/or get her up.
As for meals, I take responsibility for getting them. I’ve purchased a variety of soups, yogurt, fruit as well as bread and cheese for her cheese toast. I also bring in some of her favorite takeout meals. The caregivers generally put the meals together and feed her. So far, this is working although Kate is not eating as much as she did previously. The bigger issue is keeping her hydrated. We are depending heavily on apple juice and Dr. Pepper. She likes both of those.
From time to time, I have mentioned that as situations change, I am required to think about solutions to new problems. Usually they come one at a time. Since coming home from the hospital, the problems have multiplied. It’s not that they began at home. The hospital was having the same ones. That is why they never got her out of bed until her release after eight days.
This new world does lead to creativity. The caregivers and I have tried a variety of things without much success. One thing I thought of last night involves her lift chair that I bought this past spring. I am thinking about replacing her chair beside the bed with the lift chair. If we were able to get her from the bed to the lift chair, we would be able to get her up rather easily. Then it would be only a step or two back to the bed. Since the chair reclines as well, she would still be able to rest or sleep in it as she desires. It might be of more value to move her from the bed to the wheelchair. That is also under consideration. Of course, both options depend on our getting her out of bed in the first place.
I spoke with Kate’s nurse at her physician’s practice a few minutes ago. They ordered an Hoyer lift for us. That would also facilitate getting her out of bed. That might still require a fight, but her doctor has called in a prescription of Seroquel to ease her anxiety. I will pick it up as soon as the caregiver arrives.
I am obviously in a learning mode right now. As I suggested above, my personal skills and my “toolbox” have been up to all the earlier challenges, but it is time for some new tools. That is exactly what I am doing. It’s just that some tools can be difficult to access at a moment’s notice.