The Imperfect Caregiver

One of the most common bits of advice for caregivers is to get a good night’s sleep.

“Goodnight.”

What wonderful images that simple word brings to mind. I close my eyes and see myself drifting off to sleep in the biggest most comfortable bed on the market. I’m covered with a whisper soft blanket. I’m hugging my pillow. A tiny smile hints at sweet dreams to come. When morning arrives I will awake refreshed ready to face another day caring for my loved one.

That is what I was supposed to do, right? That’s what all the experts said. Trust me, it’s what I would l have loved to do.

Enter reality:

“Goodnight, Rodger.” “Goodnight.”

It was eight o’clock in the evening and he had just had his last breathing treatment of the day. Only one round of medication was left to be taken. I had two hours to spend some time with my husband. We were exhausted and only half listening to each other. I kept one ear open in case Rodger needed me. Nodding at my husband to indicate I was paying attention, I was fighting to keep my eyes open.

At 10:00PM I got up and took Rodger his last doses of the night. He took it without complaint. Yea!

“Goodnight, Rodger.” “Goodnight.”

I was too tired to brush my teeth. Tomorrow was another day. I hadn’t had much to eat anyway. Did I take a shower that morning? I couldn’t remember. I’d do that that the next day too. After saying my prayers, I closed my eyes and waited for sleep to come. My thoughts looped and circled around on themselves. What ifs and why didn’t I competed with I should have until I finally lost consciousness.

12:15 AM – His bed alarm went off. He hated the alarm. He hated the bedside commode and he resented me for making him use them. I ran down the hall to discover he had scooted down to the foot of the bed and managed to squeeze through the space between the bedrail and the foot of the bed. He was clinging to the rail, trying to keep from falling.

“Here, let me help you.” I eased him over to the commode and helped him stand to pee. He refused to sit. “I’m not a girl!”

“Why didn’t you call me if you wanted to get up?”

“I didn’t want to bother you. I used my short cut.”

“Short cut?” It took me a few moments to understand he was talking about the gap between the bedrail and the end of the bed.

“You aren’t supposed to get up unless someone is with you. You could fall. That’s why the doctor ordered an alarm for your bed.”

“The doctor sent it?”

“Yes, last month?”

“How does he know if I go to the toilet? It’s none of his business.”

Five minutes later we were both back in bed.

12:45 AM– His bed alarm went off. That time he tried to climb over the rail and was stuck half way. “What are you doing?”

“I have to pee.” I got him up and helped him to the commode. He stood for a couple of minutes. Nothing happened.

“I thought I had to go.” We went back to bed.

2:00 AM – The bed alarm went off. He was stuck half way out of the bed again. We repeated the scene above.

2:10 AM – Alarm went off again. His foot is stuck in the rail.

3:05 AM – Alarm went off again. He had scooted down to the foot of the bed and was trying to get up. “I have to pee.” That time he did.

3:15 AM – Alarm went off again. “I’m thirsty.” I went to the kitchen and mixed some thickener in water and helped him spoon it into his mouth.

4:00 AM – He was calling for me. I rushed to room. His covers were tangled around him and he couldn’t move. I got him into a chair and arranged his bedding. Had him pee while we were up.

5:15 AM – The bed alarm went off again. I knew I was up for the day.

The next day, and the next, and the days after that? Repeat the above actions from the beginning. Sometimes it was the voices that woke him. Some nights he thought it was day and he was ready to start his routine.

Believe me, I followed all the suggestions, I kept him up during the day. It didn’t matter. I put him in adult pull-ups so he didn’t have to use the bedside commode. I’d find them torn to shreds the next time I went to his room. I followed all the advice about soothing music and quiet time before bed. I tried it all again and there we were night after night. Sometimes I made a bed for myself on the floor beside him so he knew he was not alone. Still the alarm went off through the night.

Get a good night’s sleep? I was ready. I even drifted off for a while, and then his bed alarm went off. Again.

Caregivers do need a good night’s sleep and they know your suggestions are well intended and sincere. What they want you to know is that it’s not that simple. Their days and nights are full, minute to minute, crisis to crisis. So if you are wondering what to give a caregiver for Christmas; one suggestion is a gift certificate for a few hours of respite each week so she or he can take a nap. If you do, drop me a note so I can thank you.

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