11-11-2021 An ongoing struggle to control blood sugar levels

(Tricia)

Yesterday, I took Linda out of the facility for the second time since she went there for a follow-up appointment with her endocrinologist. On the one hand, it seemed a lot of trouble for an interaction that likely could have been done via telehealth. But on the other, I thought it would be good for Linda to get out of that place for a little while, so I didn't push the issue. Unlike our last trip to the doctor, when the driver was an hour late to pick us up and an hour late to take us back, this time we booked our own medical transportation with a different service. Yesterday, our driver arrived early, stayed in the parking lot throughout our appointment, and took us back as soon as we were done. He was wonderful.

Although Linda's blood sugar readings have had a few outliers that were really low or really high, the overall pattern is seeming to stabilize, so Dr. Ramanathan was pleased overall. The main problem, she and I both agreed, was food: The skilled nursing facility simply does not offer a menu meant for diabetics, which means it remains extremely difficult to emphasize protein and vegetables while keeping carbohydrates on the low side. 

It is especially difficult when the staff continue to throw off our careful carb counting by, say, giving Linda the dessert instead of the fruit we ordered or giving Linda sweetened lemonade instead of iced tea. It's not all the time, but it's enough that it makes us feel as if we have to be there for nearly every meal, just to check that extra carbs haven't made it onto the plate.The errant blood sugar readings, which have been as low as 66 and as high as 438, are likely due at least in part to inconsistent carb intake.

For that reason, we still are looking for a new facility, albeit more slowly. If we move her to a new facility, we want it to be only once. So, we have to be certain that any place we choose will actually solve the problems we have at NHC. And that's no easy task.

After we returned from the doctor yesterday, I spent the rest of the afternoon and evening with her. Unfortunately, she is still living in a world where Mother is still alive and she can walk without difficulty. It's so frustrating. Luckily, we have learned good deflection techniques where the topic of Mother is concerned (when she asks where Mother is, often an "I don't know" will suffice to encourage her to move on). Plus, there are times when it's clear she does remember that Mother is gone. 

But she is growing more and more adamant that She. Can. Walk. She will insist adamantly that there is no reason why she cannot return home. When I ask her to show me that she can walk, she will struggle and remain unable to get herself up out of the bed or wheelchair, before looking puzzled about why she cannot manage it.

Yesterday, after another failed attempt, she asked if I was happy that she was where I wanted her to be. She looked at me as if it's my fault, as if she can walk perfectly fine but that there's something I'm doing to keep her from it. She told me that I was "full of bull" for saying she could not walk, even though she should have just proven to herself that she could not do it. Her inability to see the truth of the situation is downright alarming.

There are often a lot of tears in these moments, and yesterday was no exception. She was despondent for at least 30 minutes. I didn't know what else to say, so I turned on the latest Hallmark Christmas movie, which eventually captured her attention. After that point, the storm had passed and we were friends again.

There's some good news on the therapy front: She has now had four sessions of physical therapy over the last week, and the PTs say that she is stronger now than when they saw her more than a month ago. We are now asking the facility to resume speech therapy as well, to see if she can continue improving her cognitive skills.

The bad news: She still believes she doesn't actually need the therapy, which means that she is unlikely to put her heart into doing what she needs to do for her recovery. In many ways, she seems to view therapy as a means to an end. We keep telling her she needs to do it to become stronger, but that only encourages her to do the therapy simply to check a box. Sometimes she'll ask later, "I've done the therapy, so can I go home now?"

When she gets upset with us over this, that we are somehow keeping her from walking or that we do not believe her when she says she has no trouble, there is no comforting or reasoning with her. She believes we aren't "letting" her get up or do what she wants to do, and then cries inconsolably. While these moods often pass quickly, we are at an absolute loss as to how to engage with her during these episodes. She does not waver in this belief, even in her quieter moments, and nothing we say or ask her to do will convince her otherwise. Our only hope is that her awareness of her situation will return with time, even if only in part.

We have at least one reason to count our blessings though. Janet, another resident, is Linda's neighbor across the hall. If Janet is left alone for even a moment, she begins to call out, and if no one comes to her immediately, she will begin to scream. Janet, who is there recovering from a broken foot, has a form of dementia that has robbed her of having more than a second or two of short-term memory. Yesterday, she was calling out, and when she saw me, she wheeled up to me crying to ask me where she was and why she was there. I explained that she was in a rehab facility to heal her foot. She next asked if her family knew where she was, and I assured her that not only did they know where she was, but her husband, children, and grandchildren visited her often. She stopped crying and seemed relieved, and then thanked me for answering her questions. But when I went into Linda's room and closed the door, she immediately forgot the conversation. She began calling out and asking where she was all over again.

Watching Janet try to construct her world over and over again, based only on what she can see before her in the moment, is tragic and fascinating. She can see the boot on her foot and deduce that she has hurt herself. But the constant activity of the nurses and the presence of strangers is a constant mystery to her. One time she asked us how long the she had been "at the train station." Last night, she told me she thought she was at "a workshop." It is only when she is talking to someone that she seems at ease--conversation is the one familiar experience left to her.

Linda's situation is beyond challenging, but my heart hurts for Janet and her family. I can't even imagine the horror of looking around and at every moment not knowing where you are or why you're there. My biggest hope for Janet is that, when her foot heals and she can walk again, she can return home to a familiar environment where she will be able to live more peacefully.