GILFORD — There are times when Denise Sleeper glances at her husband, Scott, and it looks like everything's back to normal. Tall, trim, 49 years old, with short gray hair and blue eyes, he looks like the man she married 22 years ago, the father of their two sons. It's more mirage than reality, she has to remind herself, because there's little left of the Scott she loves, and less every day.
"We were just a normal family, living a middle-class life, and the unexpected happened," Sleeper said. The "unexpected" came in the spring of 2014, when Scott began to show signs that something was wrong. He was forgetting important dates, perplexed by anything electronic, and got a poor performance review at work. On Denise's urging, he went to see his doctor, and after a series of tests that culminated in August 2014 at Brigham & Women's Hospital in Boston, he received a diagnosis of early-onset Alzheimer's disease.
In the 17 months since his diagnosis, the disease has progressed rapidly. On bad days, Scott doesn't recognize his sons – he thinks they're roommates – and requires care and supervision around the clock. Even during the night, Denise has to be on constant guard, in case Scott should wander from his bed or suffer a hallucination. Denise has taken a leave of absence from her career, and after downsizing their home, they are living off of retirement savings.
They can't afford to pay out of pocket for a caregiver. She could place him in a group setting, such as adult day care, but she doesn't want that for her husband. By staying with him, she gives him the best quality of life possible; however, there are times when her role as a caregiver takes its toll.
"The stress is so high, there's very little out there to support the caregiver," she said.
The Sleepers are in an uncommon, but not unique, situation. A middle-class family, they don't qualify for assistance that would be available to them if they were poorer. If they were older, their friends would be retired and able to help. But all of their friends have jobs and families of their own, leaving Denise to be the sole caretaker, every hour of the day and every day of the week.
Even the support groups for caregivers don't offer much for someone like Denise. They're scheduled at times difficult for her to attend, and when she has gone, she doesn't find the shared experience she's looking for.
"Support groups for caregivers are populated by older people. The challenges faced by younger families are different."
"It's emotionally, physically, intellectually draining," she said. "You can only do so much for so long." Adding to her stress is the knowledge that, as difficult as it his for her now, it will only become more challenging in the months and years to come. Her husband is still as strong as he ever was, and there will come a point where his delusions make him afraid and unpredictable.
If Denise could have anything right now, it would be a simple break. A few hours to herself, something regular and scheduled.
"Because it's so taxing, the caregiver needs something to look forward to."
Denise was a city girl from New York when she met Scott, a young man from Tilton. The two first crossed paths in an unlikely place – Aruba – where both of their families were vacationing. For two years, they maintained a long-distance relationship, then got married 22 years ago. Looking back, she is glad that they indulged in life's joys when they could, instead of putting things off.
"We've had a great life," she said. Their sons are now 18 and 20, and, ironically, are now helping their father in many of the same ways that he guided them not too long ago.
Scott, who was always a handyman around the house, now needs step-by-step instructions for everything he does, and has more old memories than new ones. The family has to get used to seeing him afraid, agitated that he doesn't know where he is. Yet, there are still pieces of the old Scott there: he still loves music, he's kind, sweet and has a good sense of humor. Denise is trying to acclimate to the new reality, though she knows that it could all change tomorrow.
"It's a whirlwind," she said. "How is your family going to stabilize now that your circumstances have changed?"
On Feb. 5, the Gilford High School Unified Sports Program and InterAct Club are hosting a spaghetti dinner to help the family with their expenses. "We are very touched that they would think of our family," said Denise.
"I'm not a victim and I'm not a martyr, I just love my husband and I want the best for him," she said.
Joyce Cameron, caregiver specialist at ServiceLink, a part of the Lakes Region Partnership for Public Health, said she's aware of a few people in Denise's shoes.
"It is a small number, but they all face similar circumstances," she said. "The physical and emotional stress alone are very difficult for them, and to maintain a semblance of a normal life."
Cameron agreed that the best remedy for the caregiver is respite, a chance to be something other than a caregiver for a short time. She said her agency offers a fund to provide such respite, though it is limited to $1,500, and the Sleepers used their allotment while they were moving into a smaller home.
"The key is respite care. But, as she stated, it doesn't take long for that money to disappear." There may be other options, she said, such as the Home Assist program offered by Lakes Region Community Services. She urged anyone in need for help to contact an agency such as the Lakes Region Partnership for Public Health to learn what support might be available.
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