Hospice At Home Care: More Hints For The Caregiver
I am sharing what I have learned while caring for a dying loved one in my home. I spent 2 weeks caring for her 24/7 and had to learn a lot of things the hard way. If one of these tips helps you please pass along the information. The goal is to help our loved ones through this process but I found that I could use some help too. Check out my other blog post for more tips.
Tip #6: Don’t Chuck the Chucks
I have seen chucks used in the hospital for a variety of things. They are meant to be a “flat diaper” of sorts to protect the bed. I found out that while they are a little protection, I had to use a lot of them. Don’t chuck the chucks however! The first time the bed got soaked, I learned to layer the chucks. I put 2 under the bed sheet, 2 under the draw sheet and 2 under her. It is much easier to change the chucks than to change the bed.
Do not try and move your loved one using the chucks!
The chucks are pretty much padded trash bags for lack of a better description. I learned that we needed flat sheets. The sheets also needed to be all the way under her. No matter how I positioned the sheet, it always ended up around her neck after pulling her up in the bed repeatedly. Making the sheet as long as the bed and using it to move her, we saved her from enduring more pain and saved our backs.
Tip #7: TV is a Distraction
We all know that television is a distraction for kids but it can also be a distraction for me and my loved one. When the pain got really bad for her, it helped to have something else to focus on. She loved game shows so when she would wake in pain, we would turn it on and then would talk to her. Most of the time I had soft music playing in the background. I know that when I am focused on something unpleasant, it tends to make it worse. We learned to use whatever we could, including tv, to draw our attention away from the unending pain.
Tip #8: Blue horses? Who says?
The dying process for my loved one included a lot of medication to try and get ahead of the pain. Those medications have side-effects that sometimes included hallucinations. Several times she said there were blue horses running through the room. Who am I to argue? Trying to tell her that there were no blue horses would only agitate the both of us. There were times when she was lucid but often, she saw a lot of things that I could not. The important thing for me to remember was that this is her experience, not mine. I could not guess what was going through her mind, who was actually speaking to her or who might be visiting. Even when she was in a hallucination about being in a burning building, we were able to talk her out of the fear, NOT by arguing that she wasn’t experiencing it, but by giving her a cool towel and pointing out that the coolness put out the fire and she was safe. Arguing with her was not going to change her experience and only added to her agitation. It was her experience and my role was not to change it but to support it.
Tip #10: Go ahead. What are you waiting for?
One of the final steps in helping our loved one through her final days was finding out what would help her just let go. As hard as it was to talk about, it was harder to watch the suffering continue. By the end, communication was almost impossible as she was unable to speak. We attended to every physical and emotional need and still she held on to the suffering. We then decided to try, once again, to feed her Spiritual need. We called her clergy and he came. Once the ceremonies were over we assumed she would be done. She continued on anyway. We were all exhausted, afraid to sleep and didn’t want to leave her side.
We figured out that she was just scared. She was hanging on because she was afraid to go and in too much pain to stay. We sat with her, held her hand, caressed her head, prayed with her, tended to her warmth/cold and just held a space for her to accept that it was time. There is no way to rush someone through this, just as there is no way to rush childbirth. We all enter and exit this world on our own time table and by our own means. It was just like childbirth. Once we all relaxed, she made up her mind and gave up the fight. It was a beautiful time and a horrible time. It was hard and easy all at the same time. We had done all that we could and it was, after all, good enough.