Sick and Tired
All the experts advise caregivers: "Take care of yourself. Don't overdo it. Meet your own needs."
I do that by keeping my mother in an assisted living residence and by hiring a personal assistant for her six days a week, 22 hours a day. On Sunday I care for my mother, and on other days I try to visit her from 4 to 6 pm.
But this week I came down with a virus, about the same time as I finally located a flu shot for myself.
By Sunday morning, I was dragging. Instead of being at Ocean View by 9 am, I was still home eating breakfast, deciding to take Mom to the 11 am church service instead of the 9:30 service.
The phone rang loud and demanding in the quiet house, where John was still sleeping.
"Anne! Where are you? You're not here yet."
I reassured her and promised to be right over, reminding her that I have a cold.
But I felt angry. I know it's foolish to get upset with the behavior of someone who has dementia, but her phone call had pushed some old buttons from twenty or thirty years ago: the time I went on a hike and returned to the trail head to find her sitting in a car, furious, waiting for me. The time Emily drove across the country and did not call daily, only to have Mom report her to the highway patrol as a missing person.
When I got to Ocean View, everything was fine. Mom used a walker to walk from the dining area to her room. Then we went to a supermarket to buy a cake for the church luncheon and arrived at the 11 am service in time for the first Christmas carol.
We attended the TOPS luncheon (Terrific Older Presbyterian Something--Singles? Seniors?), where the entertainment was 45 minutes of Christmas songs.
Luckily Mom declined a bathroom visits, so we were on time to our next event, "Fa La La L.A.," a performance in Los Feliz of the West Coast Singers, the third oldest gay/lesbian mixed voice choir in the nation. All handicapped parking was taken by the time we arrived, but another spot miraculously appeared and I was able to get Mom into her wheelchair, through the will-call line, down the elevator, and into the wheelchair access area of the theatre by 3 pm.
Mom was stunned to be sitting under the noses of a choir of 60 as they sang their opening carol down close to the audience.
We got through the first half just fine, enjoying the rock 'n roll spoofs "Proud Mary Had a Baby" and "Giving Birth Is Hard to Do."
Mom was did well during the intermission and second half, until the closing number when the choir sang and signed "Silent Night," with some in the audience singing along.
On the last verse, however, they signed without singing as a cultural experience.
One voice in the theatre continued to sing until I clamped my hand over her mouth. I didn't try to explain this one to her.
Afterward I managed to get to the crowded bathroom, which was almost wheelchair inaccessible, without Mom knowing and demanding a visit. Her Depends would have to do their job.
I returned and mumbled something about having talked to a friend.
"Oh, you were talking to Grace Eggebroten?" she asked. Grace was her sister-in-law, who died earlier this year at age 96.
I didn't try to correct her. By this time it was 5:30 pm and my only goal was to get her back to Ocean View by 6 pm.
We would have made it, but I stopped at Sav-On to buy Depends and a few other things. I also called John and offered to buy something to make dinner, but he suggested going to Coco's. I accepted with relief.
At 6:15 pm as I loaded her out of the car into her wheelchair, hung the various plastic bags of Depends and Kleenex boxes from the wheelchair handles, and proceeded to the elevator of the parking garage, I was beat.
After the second elevator, we got to the third floor, where her evening caregiver was waiting.
"I looked for her lower plate but couldn't find it," Racquel explained.
"Thank you," I said. "I just don't know where it could be."
"It's a secret," commented Mom.
Racquel and I both did a double take.
"What do you mean?" I asked.
"I put it in the bathroom, in that little bag where you keep things," Mom answered.
I fell for this one and searched the various drawers and cupboards and bags of her bathroom before realizing she must have made this idea up on the spot.
Meanwhile, I realized I had left the foot supports of her walker in the car. Jona would need them to take her to physical therapy tomorrow at 9 am.
I walked back down the halls and took the two elevators back to the parking garage.
By the time I finally drove home, I was a wreck; my cold had become a sinus infection.
Nevertheless, I was careful to be cheerful to John when I walked in the door. He resents all the time I put into my mother, and if I return obviously tired and irritable, it makes things worse.
I sneezed a few times, however, and John quickly decided that I would not be good dinner company.
I ate a bowl of soup and went to bed, finally taking care of myself.
My brother Bill called an hour later and said he had talked to Mom.
"She sounded great, fairly coherent, better than six months ago. Had a lot to talk about. Said she was walking."
I tried to explain to him that when she gets out and about, taking part in things, her mind stays sharper, she's happier, and she's healthier.
I came across a quote to that effect tonight in a book I'm reading, What God Has Joined Together? A Christian Case for Gay Marriage. It came out this summer, written by my friend Letha Dawson Scanzoni and her friend David Myers.
"... social support--feeling liked, affirmed, and encouraged by intimate friends and family--predicts a lessened risk of ill health and premature death" (p. 19). If this is true for people of all ages, it must be true for older people with dementia.
I know exactly why Mom is doing so well. She has a personal caregiver to talk to around the clock, and she has a fair amount of contact with her family.
But I also know it's taking a toll on me.