David and I spent a few days around New Year with my brother Jim. We enjoy spending time with him and Jo Lynn. They’re a fun couple who always has neat ideas of interesting things to do, and they are excellent hosts. That alone would be enough of an incentive for a visit, but they also live three miles from Southridge, the assisted living facility where Mom lives. If you’ve been following my blog for a while, you know I had a major caregiver burnout a year or so ago, and Mom moved from my home to Southridge. I miss her a lot, but in the last 12 months I’ve begun to recover my sanity and my health and to remember how much I enjoy spending uninterrupted time with David. But this visit confirmed that it’s a good thing she lives almost 300 miles away, because I’m just a step away from relapsing into addiction. Hi, my name is Linda and I’m a caregiver.
We arrived at Jim’s around dinner time on Wednesday, too late to visit Mom. Southridge serves dinner early, and she usually goes to bed shortly after she eats. In addition, she suffers from Sundowner’s Syndrome along with her Alzheimer’s, so as the sun sets, so does what little coherency she has left. Thursday morning, my addiction kicked in, and I was ready to go see her as soon as we finished breakfast. When I walked into the day room on Mom’s wing, I saw one of the residents at a table, asleep over her unfinished breakfast, and Mom with her hand in the lady’s plate. A staff member was trying to gently coax Mom away from the table and over to the sofa to watch “The Price Is Right.” This was my chance to slip back into my role, and the staff member, recognizing the gleam in my eye, gladly relinquished her charge.
“Hi, Mom. It’s Linda.”
She looked at me in confusion for a moment, and then a flood of emotion filled her eyes. It would be stretching it to say that she recognized me, but there was enough familiarity to trigger a response, and that was enough for me. We hugged for a long time, and then I led her to her apartment where we could sit and visit.
“Where are your glasses, Mom?”
It was obvious from the blank look on her face, that she had no idea what glasses I was talking about much less where they were. Later when I asked an aide about them, she said they had been missing for a couple of months. I imagine keeping glasses on a 90-year-old Alzheimer’s patient is like trying to keep them on a toddler, so I put it out of my mind and focused on enjoying my visit.
As I held Mom’s hand, I realized how sticky it was and how dirty her nails were. Grazing off other people’s plates is dirty work. If any of my caregiver persona was still in hiding, it sprang forth in full strength. I found some wet wipes in the bathroom and went to work. But one small taste just makes you want more. I noticed that her nails were a little ragged, so I found a nail clipper and evened them up a bit. Then I mainlined, pulling off her shoes and checking her toenails. Before I knew it, I was sitting on the floor at her feet surrounded by clippings. All too soon, it was lunch time, so I hugged her good-bye with promises of another visit tomorrow.
Friday was the day of the big New Year’s dinner, so we waited until 5:00 for our visit. I didn’t have to wait long for my caregiving fix once we got there. Mom was already seated at our table, and the table was preset with salads and desserts. She has always been an eat-dessert-first kind of girl, and she was wrist deep in a chocolate cupcake covered with fluffy white frosting and chocolate sauce. I wiped her hands and face the best I could with a napkin, but left it to a staff member to clean her up with a wet wipe. There were plenty of caregiving opportunities left for me, though: salad to be dressed, prime rib to be cut up, baked potato to be prepared, wine glass to be filled with apple juice. By the time we finished eating and had our famous photo shoot, I was flying high. When Jo Lynn and I walked Mom to her room, I didn’t even feel the need to dress her for bed. I was satisfied with sitting her down in front of the TV, covering her with a lighting blanket, and leaving the night time duties to the paid personnel – a victory of sorts for an addict like me.
Saturday was another story. David and I went for a visit around mid-morning, planning to spend an hour or two before lunch. I expected to find Mom with her friends in the day room, watching TV or having a snack, but instead I found her in bed. She was napping in a t-shirt and her underwear, so I woke her gently and went into my best caregiver mode. I took her to the bathroom and started to help her get dressed. When I took off her shirt, I was horrified to see her stomach, shoulders, and back covered with red welts and scabs where she had scratched herself raw. I battled similar problems when she was with me, going through countless tubes of cortisone and antibiotic cream and reminding her endlessly not to scratch, but it was never this bad. I felt the familiar pangs of guilt and doubt, wondering once again if I should have kept her with me, if she was being neglected.
Sunday was a repeat of Saturday except it was afternoon and Mom was napping fully dressed. Monday morning we left for home, and we stopped by Southridge for one more visit. I went by the nurse’s office before going to Mom’s apartment and asked about the things that concerned me.
“Are we supposed to clip her toenails, or is that something you do here?”
“If you’ll tell the CNA on her wing and be sure there are clippers in her room, we’ll take care of it.”
“Do you have a lost and found where we might find her glasses?”
“Not specifically, but I’ll put a note in the communication log to check again and see if we can find them.”
“Are you aware of the terrible rash she has on her chest, stomach and back?”
“Yes,” she said as she pulled Mom’s file. “The doctor put her on an antibiotic about 6 weeks ago, but that didn’t help. He thinks it’s more nerve related, so he put her on Risperdal on December 10. I’ll be sure he looks at it again on his next visit, and I’ll note all your concerns in the communication log to be sure everyone is aware of the situation.”
Satisfied that I had done all I could, I spent an hour or so with Mom, brushing graham cracker crumbs off the front of her shirt and guessing prices along with Drew Carey. When it was time to leave, I gave her one last hug.
“We have to go now, Mom. They’ll be coming to get you for lunch in a few minutes. I love you.”
“Okay. I love you, too.”
She smiled contentedly and turned her attention back to the TV. As we headed toward Texas, I felt the pangs of withdrawal, worrying about her toenails, her glasses, her rash, not knowing if or when I would see her again in this life. I once again pried my fingers off the controls, knowing that Jim and the Southridge staff were perfectly capable of caring for her. I thought about the Serenity Prayer that is often used in twelve-step programs to help those in recovery let go of their addictions. I also thought of a poem called “God’s Boxes” that someone brought to one of our caregiver support meetings.
I have in my hands two boxes,
Which God gave me to hold.
He said, “Put all your sorrows in the black box,
And all your joys in the gold.”
I heeded His words, and in the two boxes,
Both my joys and sorrows I stored,
But though the gold became heavier each day,
The black was as light as before.
With curiosity, I opened the black,
I wanted to find out why,
And I saw, in the base of the box, a hole,
Which my sorrows had fallen out by.
I showed the hole to God, and mused,
“I wonder where my sorrows could be!”
He smiled a gentle smile and said,
“My child, they’re all here with me..”
I asked God, why He gave me the boxes,
Why the gold and the black with the hole?
“My child, the gold is for you to count your blessings,
The black is for you to let go.”
I focused on the blessings of my visit, the momentary recognition in her eyes, the constant smile of contentment that lights her face, the moment when she cupped my face in both her hands and said You’re beautiful. I let all the sorrows fall through the hole in the bottom of the box, and by the time we got home, the anxiety had lessened and my addiction was once again under control. I’m learning to let go of the caregiving without letting go of the caring. It’s slow going, but I just take one day at a time.