Caretaker Anxiety, The Sequel

The last 24-30 hours have been rough. I was notified mid-afternoon yesterday that the hospital planned to discharge my mom to a skilled nursing facility (SNF). I was only given two options and very little time to research them. From what I could find online, neither looked good – both have a substantial list of deficiencies found in their last inspection, so I went with the one that had the fewest published complaints from family members. I hate choosing between the lesser of two evils, especially when it comes to my mother’s health, so that caused a lot of anxiety for me.

I left work early and got to the hospital just before 5:00 p.m. I thought about stopping in the hospital chapel to meditate and pray a bit, try to center myself before I had to face Mom with the news that she was being moved… but they’d rushed the transfer so much, I was afraid they wouldn’t stick to their promise not to move her before I got there. So I just hurried up to her room.

 She was having trouble remembering things and our conversation went over and over the same ground. I explained at least four times about the transfer to a “step down” nursing facility. When her dinner came, Mom was only interested in the Ensure drink and commented repeatedly on how it was a good source of nutrition when she had no appetite. I ate her entrée, since I hadn’t had time to pick up any food for myself, and tried to interest her in the fruit cup. She took a bite, just to please me I think, then pushed it away. I was reminded of her rule when I was a child and a picky eater – you have to take one bite of everything before you can say you don’t like it.

The EMTs arrived just before 7:00 to transport her by ambulance to the SNF unit. One of them was a rather hunky Latino with muscular arms. As he was leaning over Mom to slide her from the bed onto the gurney, she commented on his muscles and I saw his teeth flash in a Colgate white smile. “You’ll need muscles to lift me!” she said, and he laughed. Was she flirting with him? I wondered, smiling as I packed up her personal belongings. I took my car and met them at the nursing home.

I was dismayed to see that there were not two but three narrow hospital beds in each room. Thankfully Mom was given the bed next to the window, which is also the closest to the bathroom. Further dismay: the tiny bathroom is shared with another room of three patients. What would happen if she were incontinent and the bathroom was occupied? In the next room, a patient moaned and cried loudly. Other patients sat half dozing in wheelchairs in the hallway. A woman cried out to me as I passed, waving a white washcloth. It was every bit as depressing as I’d feared, and it took all my willpower to keep a smile on my face and not let Mom see my anxiety. The night shift staff who got her settled seemed impatient and uninterested in a new patient adding to their workload. I had to ask at the nurse’s station where her call button was; it was hanging from a cord along the wall, far from where she could have reached it. When I asked about paperwork, they told me to come back tomorrow when the business office was open. I got Mom settled as comfortably as I could, kissed her goodnight, and left her already dozing off at about 8:00 p.m.

As soon as I was safely in my car, I burst into tears. It gutted me to leave her there. I felt that I’d failed as her advocate because surely a good advocate would have made sure she didn’t end up in such a dismal place. I got home and poured myself a glass of wine, but it did nothing to ease my anxiety. Sleep was a long time coming and was filled with restless dreams, including one where I called up her insurance company and said things like “Was she kicked out of the hospital and sent to that horrible place because you won’t pay for anything better? Shame on you!” I woke at 3:00 a.m. and lay awake for a long time, so anxious and afraid for her that I was half tempted to drive over there in the middle of the night just to make sure she was still OK. I fell asleep, finally, praying for her safety.

I’d planned to go to work today and just leave early to take care of the paperwork. But at some point in my restless night, I realized that my top priority had to be checking on Mom first thing this morning and making sure she was getting appropriate care. I called in some FMLA leave time and went to the SNF at 8:00 a.m.

When I walked in to her room, Mom said “Now my reality returns to me.” She told me she’d awakened from a night of bizarre dreams and didn’t know where she was or how she got there. She’d already had her breakfast when I got there, so she must have been awake and wondering for a while… but she had still eaten some, which I took as a good sign. I sat down on the edge of her bed, held her hand and explained about the pneumonia and being transferred from the hospital. Once we started talking about it, she did remember a little bit about the hospital and the EMTs who brought her in the ambulance. She told me that her dreams were very strange and unsettling because they felt so real but she knew it was too weird to be reality. She started quoting scripture to calm herself in the dream and said “You are a God of love. I know You wouldn’t create THIS!” It hurt my heart to hear that, to think of her awakening from frightening dreams to find herself alone in a strange place, with nothing familiar to hold onto. I knew I’d made the right decision to go there first.

I brought her Bible and a book of daily devotions, along with her pajamas. I read today’s devotional reading aloud to her; appropriately enough, it was about dealing with difficult days. I hoped the reading would give her some peace of mind and banish the last of the night’s darkness.

In the bright sunlight and bustling with daytime activity, the nursing home didn’t seem quite so depressing. All the staff I spoke with this morning were cheerful, friendly and helpful. The admissions director even apologized for the way the hospital social worker had handled the transfer, though it wasn’t in any way her fault. After speaking with the head nurse, I started to feel that this might turn out OK.

I stopped in again after work and found Mom sitting up in bed, knees bent, reading her book. The newspaper I’d brought her at the hospital the day before was scattered beside her. She was cheerful and upbeat. I brought her a super soft velour throw that I’d picked up at CVS, along with a get well card decorated with pretty butterflies. She enjoyed both, exclaiming “It isn’t even my birthday!” At the hospital yesterday she had told me that the Christmas song “Mary, Did You Know?” kept getting stuck in her head, only she couldn’t remember more than the first couple of lines. So while I sat visiting with her, I downloaded the song to my iPhone and then handed it to her to listen. She put the phone up to her ear and closed her eyes, and it looked like she was fighting back tears. Every now and then she would sing a line or two, softly.

I didn’t stay long because just getting up to use the bathroom wore her out so much that she needed to lie down and rest. She’s got a long road to recovery, I expect. I’m just praying that she won’t have to do it all at this SNF unit, that I can convince the doctor to send her back to her assisted living with home health care in a week or two. I know she would heal faster in her own comfortable room, with peace and quiet and privacy.

Twenty-four hours ago this felt like a disaster and I was a nervous wreck. Tonight I’m OK. Being responsible for her care is a big job at times like this and I’ve felt the caretaker anxiety keenly in the last few days, but I’m OK. One day at a time. We’ll get through this together.

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