Denial, anger, bargaining, depression, acceptance: all the classic stages of grief. As a caregiver, I’d add another stage: burnout. My mom’s memory started to fail about 15 years ago, and my role as her caregiver started with an occasional offer of assistance, “Here, Mom, let me help you with that,” and progressed to a cry of despair, “I can’t do this anymore.”
Honestly, my first reactions to Mom’s first symptoms of Alzheimer’s weren’t nearly that gentle and understanding. Denial takes many forms, and sometimes those forms are not very pretty. Her first obvious symptom was what I call conversational loops, telling the same story or asking the same questions 3 or 4 times in 15 minutes. My mother had a history of contracting every disease she read about in the newspaper or saw on TV, so when she started the loops, I told myself she was just acting the way she thought a person of her age should act.
My friend Mary, Mom and Dad’s second daughter, made a game of it.
“I see how many different ways I can answer the same question truthfully,” she said.
I wasn’t nearly as compassionate. Denial and anger are not a pretty pair. I was frustrated and scared, and since I couldn’t get to the disease, I vented at Mom.
“I just told you that two minutes ago, Mom,” or “You’ve told me that 3 times in the last ten minutes.”
Not my proudest moments. I remember one afternoon when Dad was in the hospital and I was helping her get ready to go see him. I snapped at her about some trivial irritant. She was still aware enough at that point to understand some of what was happening but was powerless to control it. She looked at me with hurt in her eyes.
“You don’t have to make me feel bad about it.”
I don’t have to tell you how small I felt and how much I wished I could take back all the harsh things I said to her during those months. But I couldn’t, so I bargained. I didn’t do the “God, if You’ll heal her then I’ll…” kind of bargaining; I tried to fix it. If I could just find the right doctor, get her started on the right medicine, offer her the right kind of assistance. But as all Alzheimer’s caregivers know, no matter how good a job you do, they won’t get better. This insidious disease will wrap their minds in plaque-covered nerve tangles until they forget what you told them, they forget who you are, they forget how to care for themselves, and eventually, they forget how to breathe.
Depression? You bet. The doctors didn’t help, the medications didn’t help. I continued to watch my mom slide down the slippery slope into forgetfulness, and there wasn’t a thing I could do about it. But my caregiving duties continued to increase. First I made occasional visits, I checked to see that there was no spoiled food in the refrigerator, I reminded her to change clothes. Then I made daily visits, I prepared and served meals, I laid out clean changes of clothes. Then she came to live with me, I cut her food and reminded her which utensil to use and how to hold it, I changed her clothes. I could no longer deny what was happening, I was still angry, bargaining didn’t work, and I was in despair.
Then one afternoon, after a particularly trying morning, I sat in the swing on the lanai with my Bible, looking for solace. I came across this verse in Hebrews:
For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin.
Yeah, I thought, but Jesus was never a caregiver!
“Oh really,” said that Still Small Voice. “Are you sure?”
I thought about Joseph. We don’t know a lot about him, and he’s never mentioned after Jesus stayed behind in the temple when He was twelve. Some people think he was quite a bit older than Mary and that he died before Jesus began His public ministry. If he died from a lingering illness, who cared for him? Jesus, as the oldest son, may have helped Mary, especially with the more physical aspects of caregiving. He may have bathed Joseph even when he didn’t want a bath. He may have insisted that Joseph use his cane even when he insisted he didn’t need it. He may have stood by Joseph’s bedside, holding his hand and comforting him as he breathed his last breath. And what about Mary? One of the last things Jesus did before He died was to give over the care of mother to His disciple John.
One of the greatest things about the caregivers’ support group we had in Florida was knowing that you weren’t alone, that there were others going through what you were going through, who knew how you felt. We empathized with each other and drew strength from each other. In those few moments on the lanai, I accepted the possibility that maybe Jesus had been a caregiver, that He really did know and understand what I was going through. I also accepted the verse that says, “I can do all things through Him who gives me strength.”