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.
4 Replies to “Current Thoughts on In-Home Care and Caregiving”
Hi Richard, sorry I missed all these posts since our first crisis. You’ve been on a rollercoaster of anticipation, anxiety, relief, problem solving & more. So glad that you found good home Carr & work g with them & doctors to get the right equipment. Homer lift (hoist) will make it easier to get her in/out bed, but you’ll probably face resistance in getting the sling under her if turning her is an issue. But once down a few times I’m sure she’ll build a memory of it. It’s hard time but I love your positive outlook seeing these are challenges that you’ll overcome. Take care so glad you’re both well.
I can empathise with all you are going through. Ingenuity is the order of the day. I am blessed with great support but like you the carers are generally here so that I can go out . I tend to do all the washing, feeding personal care . We have just had ceiling hoists installed but waiting to be trained in their use. Hopefully it will save me a pulled back in the future . And like you, food is ok, if he is awake he will eat but it’s liquid intake which is problematic for us. I tend to go with the flow and offer it up but if he refuses I don’t persist . It’s a tough life but there is no alternative . Got to crack on .
Thanks for your response. It sounds like we share some of the same experiences. Wishing you well with yours. I have been checked out on our lift, but we haven’t tried it yet. I am sure Kate will be frightened.
Thank you for hour response. I apologize for not responding to you right away.
I haven’t tried the lift yet for the very reason you mention. I think Kate will be frightened, but she seems to be settling down a little each day. I hope to try it next week with one of he caregivers who has more experience than I (who has none).
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