7-29-2021 A rough night

(Tricia's perspective)

Besides seeing your loved one struggling, perhaps the most difficult thing about situations like this is being powerless to help when needed. We had one of those moments last night. When Ed and I arrived at around 6:30, we walked into the room to find Linda sitting up in her wheelchair. At first, this seemed like a good thing, until we realized that she was exhausted and needed desperately to lie down. After trying unsuccessfully to lean the wheelchair back to give her relief, I went to find a nurse for help. I was told that they were understaffed, with only two nurses on duty that night, and that they were working as quickly as they could to check every room and get everyone settled.

We waited for another 40 minutes, while Linda continued to slump over. I held her up as best I could, and we also tried to give her pillows to lean on. During moments when she was able to sit upright on her own, I massaged her shoulders to offer some distraction. We talked with her, although she was so tired that she couldn't say more than yes or no. We had put on one of her favorite British shows, and when we asked her if she liked it, she said, "Yes," even with her eyes closed. We know that this is a show that she often listens to as she does other things around the house, so we hoped that it would help, even if only a little.

Finally, Ed went out once again to find the nurses to let them know Linda simply couldn't hold out any longer. At that point, they came in to move her and get her situated back into bed for the night. Once she was lying down again, she immediately closed her eyes and relaxed. When we asked her if she felt better, she said very clearly, "Much better."

At one point, the nurse told me that Linda had been seated in the wheelchair since her physical therapy earlier that day, after 1:00. That seemed too long, given the circumstances. When I called the facility this morning, I learned that patients will be positioned in wheelchairs so that they can move about, or sit in the doorway to watch people go by. It is policy for staff to check on them every two hours, and I was assured that staff had stopped and spoken with Linda at intervals.

Even so, it was incredibly frustrating not to be able to help Linda lie down last night when I knew that was what she needed. Linda, too, tried to lift herself out of the chair in an attempt to help herself, but she did not have the strength (we told her she had to wait for the nurses, but she still tried!). I understand that the facility can do only so much with the staff on duty, but while I'm sympathetic, it is difficult to be at the mercy of those limitations. We are navigating how to advocate for Linda in these instances, and I think last night showed us how important that advocacy is going to be.

We are very much hoping that today will be a good day.

 

 

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