4-24-2022 Still settling into a difficult situation

(Tricia)

We now have had Linda at home for five days, and it has been so very stressful, primarily because we are not medically trained to do many of the tasks required for her care. The hospice agency has been good for providing equipment and for checking in twice a week, but they offered no training on how to clean or reposition someone confined to bed, or how to use the lift to move her to a chair. We also are trying to care for a painful pressure ulcer that she developed while at NHC (another “wonderful” outcome of that stay....pressure ulcers are so serious, and are caused when providers do not turn a patient often enough. Yet another thing I know now that I wish I had known then). So, thank you, Google; thank you, YouTube; thank you, all the very many nurses we have observed and sometimes helped these many months—we at least have a little information to go on.

We have been able to use the Hoyer lift provided to get Linda into a specialized reclining wheelchair (called a Broda chair) both yesterday and today. Linda has said that she enjoys getting out of bed.  But it is breaking my heart that she lost so much muscle mass over the course of her last hospitalization. She can still lift her arms (when she is so inclined, which is rarely), and she can barely lift her legs. She no longer wants to move at all, and I know the less she moves the less she will move. Even though we are now at the hospice stage, I still had held out a little hope that she might improve a little, just to stay with us a little longer. But I also realize that keeping her with us at the expense of her comfort is no real consolation.

We have had a few bright spots. Two of our three cats—Hopscotch and Davy—have taken a liking to sleeping with Linda. And Linda, who has never liked cats, says that she actually enjoys their company.  Although she refuses to believe that Hopscotch is actually named Hopscotch.  She insists that his name is “Uvitity.”  When I ask her what that unusual name means, she says, “How do I know, it’s what you named him!”  We most certainly didn’t. :-)  She is also starting to a call Dave “Ufata.” This whole situation has been tragic start to finish, but the way her “different” brain now works is also a little fascinating.

She has gone back to asking for Mother quite often. When we respond by saying something like, “Linda, you know where Mother is—she’s not here,” she reorients very quickly and remembers that Mother is gone. But later she still will call for her or insist that she’s at “Mother’s house.” 

This afternoon, when she was talkative for a little while, she said, out of nowhere, “I spent so many nights at that Holiday Inn, I just couldn’t believe it.”  I decided to go with it, and asked, “Oh, why were you at the Holiday Inn?” And she said, “Because Tricia and Marilyn put me there!” I realized that she was talking about the hospital!  Ouch.  I asked her what it was like at the Holiday Inn, and she said, “It was really sore.” Finally, I asked her if she liked it better here, and she said, “Oh, yes.”

Now, that’s not what it seems like sometimes. She gets angry when the caregiver and I help change her or get her ready for bed. Today, Ed wanted to check her oxygen levels using a pulse oximeter on her finger, and she looked him in the eyes and said “No!” When we asked her why she was objecting to such a small thing, she said, “Because you’re telling me I have to.” That reaction—of refusing to do anything that she perceives as someone else’s bidding—has really been the driving force of this whole 10-month journey. That said, she has lost almost all of her autonomy, so I can fully understand why she wants to gain even a little more control over her situation.

We have had been able to have two caregivers stay with her during the night—one comes to our house three nights a week and the other comes here four nights a week. That offers a little peace of mind, but this is still the hardest thing I’ve ever done. I’m hoping that we find our way and it gets at least a little easier. We’re not sure exactly what the future holds at the moment, and the emotional weight of what’s happening is brutal—I just can’t imagine life without Linda, or not having her to visit in Mountain View. But as Ed tells me, we just have to take each moment and each day as it comes, and not think too far ahead to the future. I know that’s good advice, and really the only option, but it’s just so incredibly hard to do.