You may think a story about Alzheimer's begins with the person with the terminal diagnosis. I write the word "terminal" because it is a death sentence, but one without an accurate expiration date. Alzheimer's is a fatal sentence that clings to the person diagnosed, lingering for six years, 10 years, perhaps even an interminable 20.
You may think a story about Alzheimer's begins with the patient whose memory and motor skills are stolen as if in some cruel slow-motion magic trick.
Now you know me, now you don't.
But the story begins — if we really care about the person with the diagnosis — with the primary caregiver.
You have no idea
"You have no idea," says Mark Pruitt. Mark, his wife, Della, and I, are eating BBQ and drinking sweet tea in a suburban Dallas barbeque joint. Plaintive blues music wails from the restaurant speakers. Old, raspy-voiced troubadours, their lives headed down a tattered, inevitable path, reach back in their storysongs for a sweet memory, a respite from their broken lives, just a moment of peace and clarity.
"You have no idea," Pruitt says again. "No idea. Until you have lived it." Pruitt is talking about the life of a primary caregiver.
"When someone says they will care for someone with Alzheimer's, they have no idea," says Mark Pruitt.
Pruitt is a Dallas-based financial advisor who has consulted with clients who have Alzheimer's as well as dealt with it in his own extended family. Pruitt's wife, Della, has six family members, including her mother and a sister, who have been afflicted with the disease.
"It changes your life," Pruitt says, about becoming a primary caregiver. "It changes the life of your spouse. It changes the life of your children. Once you are in that situation, of being the primary caregiver, little things you took for granted, like eating out or going to a movie or getting a haircut — you can't just get up and do those anymore. You need planning, you need relief, to handle those little things."
Pruitt tells the story of an Alzheimer's caregiving situation. In the typical situation, one of the two spouses needs 24/7 care, the remaining spouse is doing all the caregiving, and the caregiver is aging right along with the patient.
"What people don't prepare for is they think, in an ideal world, I'll be the caregiver." But what happens if something happens to the caregiver?"
That's exactly what happened with Pruitt's in-laws when his 81-year-old father-in-law, who had cared for his spouse for eight years, had a stroke at 3 a.m.
"The paramedics literally carted him off and put him in the ambulance and a neighbor came over and said, 'Where's Ms. Martha?' And the paramedics were like, 'Who's Ms. Martha?'
"My dad couldn't speak due to the stroke," says Della Pruitt. "It was pure luck on the neighbor coming over in the middle of the night or they would have left my mom there still sleeping in her bed."
