Caring For Loved Ones is a Gift of Love, Wrapped in Thorns

James Tissot (1836-1902), "The Healing of Peter's Mother-in-law"
James Tissot (1836-1902), "The Healing of Peter's Mother-in-law" (photo: Register Files)

Old people -- and by that I mean very old people -- are funny.

They’re not funny in the sense of laughs. They’re funny in the sense that you never know from one moment to the next what’s going to happen.

Caring for a two-year-old is a piece of the proverbial cake compared to caring for a 90-year-old with dementia. My family and I have been doing our best to care for my 90-year-old-two-year-old for years now.

Her dementia started when she was in her high 80s. It was a late-comer to the aging party, but once it arrived, it went through her brain like a laser, cutting away pieces with every pass. Dementia never stops taking. It is an aggressive and remorseless beast that slowly, but inevitably, lops off chunks of the person you love.

Mama is my baby now, complete with diapers and the sudden medical crises that go along with the physical declines of extreme age. A 90-year-old going on eternity can slide straight down from doin’fine and being a pest to the brink of forever in one, breath-taking step.

Consider last night.

What we had was Mama, prattling along with her nonsensical word-salad talk-talking while changing into her night gown. With no warning, she stopped talking and slumped forward.

She was gone, gone, gone. As in unconscious. As in limp.

She could be roused enough to talk in slurred speech that made no sense. But rousing her was difficult. I sat on the bed with her and she curled up against me like a baby. The whatever-it-was deepened and we could no longer rouse her.

My two sons had to lift her -- she was so limp, she slipped through their hands -- and get her to the car. I drove her to the emergency room where they took her back immediately, thinking she’d had a stroke.

Hours and many tests later, they knew she hadn’t had a stroke. The only thing they could find -- we discussed this over her bed while she was deep in the unconscious state -- was that her sodium levels were out of whack.

That seemed crazy. How could anyone who insists on eating potato chip sandwiches and slurps down Coke like it was the elixir of the gods be low on sodium? But low sodium it was. They decided, around about what the Bible refers to as the “fourth watch of the night,” to admit her to the hospital. She’s there now.

I called this morning and they said she’d had breakfast and taken a walk, evidently all rested up after her … whatever that was. Me? I feel like boiled lettuce. My son who spent the night in the hospital with me (and who was supposed to have surgery himself today) is in the boiled lettuce column, as well. My other son, who had to be at work at 0500, is in about the same shape. My husband isn’t much better.

Caring for elderly parents is a great gift. It’s also tough. Mama can not be left alone, not for an instant. She can not even be out of line of sight. She asks the same questions at least a thousand times a day. She follows me from room to room and stands outside the bathroom when I go in. She won’t eat her meals, but demands food constantly. She wants to be taken for drives all day long, and she has to have her ice cream.

She must be bathed, changed, tucked in bed and cuddled, just like a small child. She wants her stuffed bear and a night light. Her nighttime prayers have become “Now I lay me” said together after I tuck her in.

No matter what I do, I end up feeling guilty because nothing I do can fix what’s wrong. And I grieve the loss of her, even while she is physically with me. In truth, I miss Mama more when I’m with her than when I’m not.

Guilt and grief are the twin dogs that snap at my heels. There is a lot to grieve about, and the guilt is an inevitable part of the fact that I am human.

Dementia is killing Mama by stages, so that she’s dying in plain sight, while she’s with me. Even while I am caring for and loving my precious Mama, she is leaving me, day by day. That sets grief along beside the guilt and they become so intertwined that it’s difficult to know which one I am feeling.

I would give anything to have a conversation with Mama. But I would also love it if she would just take a break once in a while and stop talking.

Does that confuse you? She talks, saying the same things over and over. But they don’t make any sense, and she doesn’t remember what’s she’s said. She forgets the beginning of a sentence before she gets to the end of it. It’s a word salad, a thought salad. Conversation with her is impossible.

One day, some thing or other will stop that old heart, still that chattery voice, end this long descent into the dancing shadows of dementia, and Mama will go home. I view what we’re doing as a relay race of sorts. When she dies, the baton will pass from my hand to the nail-scarred hand. Mama will be out of my care and in His. She will be home, really home. 

Until that day, my sons and I have the impossible burden and incredible gift of walking Mama home. That walk is comprised of love so deep it has no words, unending annoyances, exhaustion and on-going grief over the many little deaths of dementia. All this is punctuated by sudden drops into crisis like last night.

Walking Mama home is a gift of eternity work. Like all eternity work, it is a gift of love, wrapped in thorns.