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The secret world of an Alzheimer's caregiver

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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.”

Many primary caregivers go into the situation believing they can handle it themselves; they can’t, according to Mark Pruitt.

“There are programs that offer help and as a primary caregiver, you have to take advantage of them. You have to tap into that support system. If you don’t have family members or close friends who can offer support, social services offers help and there are adult day-care centers where you can take someone.”

A few years ago, Della Pruitt’s sister, Nola, was diagnosed with early onset Alzheimer’s in her mid-50s. Even with a support group and being knowledgeable of the topic due to Della’s mom, the life of primary caregivers never really hits home until you’re living it.

“Time is irrelevant to (someone with Alzheimer’s) and they will get up throughout the night,” says Mark Pruitt. “Think about it. If they’re already struggling with their memory, think what it does to them if they have irregular sleep patterns.”

Wandering and falling are two of the biggest problems for someone with Alzheimer’s. The Pruitts say you have to have special locks on the doors because if you don’t they’ll get out and won’t be able to find their way back home. Once Nola started falling, however, they had to make the decision that every caregiver eventually is faced with — putting the loved one in a home.

“Some people are in denial,” Mark Pruitt says. “They don’t want to face that moment of placing them in a home. But it becomes inevitable when their loved one is a danger to themselves.”

The thing is, being a primary caregiver is not for everyone. When Pruitt talks to his aging clients in workshops he speaks forcefully to them and doesn’t hold back what it means to be a caregiver.

“I tell them, ‘Think of the most personal things you do. Would you want your child doing that for you? Mom, do you want your son to do those things for you? Dad, do you want your daughter?’ That’s where the disease winds up. The degeneration is all encompassing. The brain is a computer for everything: speech, emotions, bodily functions. All of it. And not everyone is right to be that primary caregiver.”

One of Pruitt’s best clients called him one night. She’d been married to her husband for over 50 years. She thought she could handle being the primary caregiver. And she could, to a point. But then as the disease progressed so did the level of care.

When she called Pruitt she was in tears: “ ‘I’m ready for some help. I’m so past ready if I don’t get out I’m going to kill someone. I don’t want to hurt him. But I need help,’ ” she told Pruitt.

Having the Alzheimer’s patient placed in care isn’t cheap. Unchecked and unplanned, long-term care is an estate buster.

See also: The real cost of (not having) LTCI

“For Nola, thank goodness, she and her late husband had invested in a great long-term-care policy. Where she is, it pays $72,000 per year. Let’s say, for a moment, that she lives there 16 years. How many years could your estate handle something like that? Talk about a health-care crisis.”

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