'Most Times, He Doesn’t Know Who I Am'
East Manatee family tries to honor a father as dementia erodes his memories of them.
In roughly the time it takes to brew a pot of coffee, four Americans will be diagnosed with Alzheimer’s disease or other forms of dementia. A little over four years ago, one of those people was a father of three named Ed Singer.
There is no cure for Singer, 88, or the more than 540,000 other parents, spouses, siblings and other loved ones living with the disease in Florida — the second-highest of any state in the nation, according to the Department of Elder Affairs.
There are no survivors either. The Alzheimer’s Association estimates the brain disease that affects memory and motor functions kills more people than breast and prostate cancer combined. On average, a person with Alzheimer's only lives four to eight years after diagnosis.
The only thing Singer’s children can do is wait, help him and watch their father gradually disappear, like a ship slowly slipping over the horizon.
“My old dad comes back sometimes,” said Laura, 59, his second-oldest daughter. She’s the one who inherited his dry sense of humor and love of old Mustangs.
“There’s this moment of happiness, and there’s this gleam in his eye. But most times, he doesn’t know who I am. I know he wants to remember me, and all the other things, but he just can’t.”
And so another Father’s Day has come — filled with eggs Benedict for breakfast, medium rare steak for dinner, Outback Steakhouse gift cards, and children and extended family whose faces he can’t recapture.
At Laura’s dining room table in East Manatee County, he’ll smile over dinner. He’ll watch and listen. Mostly he’ll look to Sandy for help.
She is his oldest daughter and full-time caregiver. Sandy knows what he’s trying to say as the words stumble out of his mouth. To him, his 61-year-old daughter is his memory bank — she knows what he can’t remember.
So how do you honor a man who can’t remember the life he helped to provide for his three children, five grandchildren, and two great-grandkids?
Show him the mountains of family photos placed in albums and stuffed in drawers or closets, said Laura. Hold his hand to show him you care.
Make sure the candy bowl is stocked with dark chocolate, said Sandy. Follow Mom’s recipe for French toast on Saturday mornings. Quietly sit with him and watch the cardinals, blue jays, and squirrels in the backyard.
Move 1,600 miles across the country from Minnesota to live with and help a grieving father overcome the loss and then the subsequent loss of memories of Marylou, who died two days after their 57th wedding anniversary.
“You taught us well, Dad,” said Sandy, who because of her fear that solicitors might show up, or that he could fall or take a drive, rarely leaves the house. With few exceptions, she cares for him all day, every day.
She sat beside him as he flipped through a photo album full of wedding photos, baby pictures, family vacations. Most days, he only remembers his wife, children, and relatives when they were young.
“I taught you,” Singer said, trailing off. He looked to Sandy for help.
“You taught us how to be good people. You taught Laura how to whistle. You taught me and Bruce how to tinker around the house,” Sandy said, tears welling in her eyes. “And we weren’t that much of a pain in the butt. Right, Dad?”
“Right,” said Singer, smiling.
Waiting and caring
Singer has vascular dementia, a rare form of reasoning, planning, and judgment loss caused by brain damage from impaired blood flow to the brain.
Since last Father’s Day, celebrating Dad has gotten harder for everyone. Last June, Singer was back in hospice for the second time because of heart failure.
“We thought he was going to die,” said Sandy, remembering a time when doctors, nurses and occupational therapists streamed in and out of his house for months. “But he pulled through.”
What normally would have been a triumph left many in the family with mixed feelings. Maybe it would have been easier for him if he didn’t make it because his health and memory have since dwindled to the point that he needs round-the-clock care.
Sure, Singer can still move around with the help of a walker. He can still slowly feed himself. With some assistance, he also helps with the dishes, goes to the bathroom, and gets partly dressed.
But most everything else Sandy has to do. Eleven hours a week, a professional caregiver arrives to help bathe and watch Singer so that Sandy can get groceries, run errands, and attend a caregiver support group at Sarasota Friendship Centers.
Sandy worries about the future.
What if he falls and is bedridden for the rest of his life? What if he needs to move out and into a memory care or nursing home? He didn’t do well the last time they tried.
Could they afford it? They’ve scraped by mostly on his Social Security and the investments he made earlier in life.
“I’d much rather he die comfortably in his sleep than watch the disease progress even more,” said Sandy. “I hope for his sake that the future isn’t in store for him, but I know that there’s a strong possibility.”
Sandy is a former longtime physical and intellectual disability caregiver. Because she can’t leave the house, she also cannot work.
She recently left the health care data entry job she had from home because she could no longer do the work. She also does not qualify for Medicaid. She’s too young for Medicare.
“I can’t get sick,” said Sandy. “If I go down, what happens to dad?”
More than 16 million Americans provide unpaid care for people with Alzheimer’s or other types of dementia, according to the Alzheimer’s Association.
This year, these caregivers are estimated to provide 18.5 billion hours of bathing, cooking, clothing, and watching over thousands of other tiny tasks for their loved ones with the disease.
Numerous studies have shown that these family caregivers are often so immersed in their role that they often neglect their own care.
That can often lead to high levels of stress, depression, isolation, and other health problems, said Paula Falk, a longtime mental health provider who has worked with caregivers for 20 years. She is now director of caregiving services at the Friendship Centers.
For Sandy, joining the Friendship Centers’ caregiver support group a year ago was an act of self-preservation.
Although she gets some support from family and friends, sitting beside over a dozen other spouses and family caregivers make it all feel she’s not alone.
That’s because she’s surrounded by so many other lives that mirror her own. Once a week, she gets the tools she needs to get through the next seven days. She can get and give advice. She can just sit and be away from home for a few hours.
“I know this is not going to go on forever, that there is a future,” said Sandy. “But there’s no money for my retirement. I haven’t worked for a long time. I wonder if I’ll stay in this house, I wonder if I’ll go back to Minnesota.”
But for now, Sandy is focused on the present — making sure that Singer is comfortable and has everything he needs. She does it because she loves him, because it keeps him comfortable and at peace. She does it because she is one of the only family members who can.
Together to the end
In the days leading up to Father’s Day this year, Singer woke up to his daughter cooking breakfast.
“When did you get in?” he asked, just as he does most every other morning.
“Almost five years ago, Dad,” Sandy said with a smile.
“I don’t believe that,” Singer said.
“Time sure does fly,” Sandy said.
As the day progresses, Singer will often call Sandy by his wife’s name. Maybe it’s because Marylou also had a narrow nose and blonde hair, said Sandy. Maybe it’s because she does everything exactly the way Mom did it.
Those things don’t bother Sandy anymore. She rarely cries about the man who taught them about self-reliance.
After the kids moved out and went to college, their relationship with Singer grew into a friendship — he was someone they could share just about everything with. They’d talk late into the night about the past and hopes for the future. He gave great advice.
Shortly before Mom died, Sandy would come to visit. Father and daughter would spend hours near the pool, watching the ducks and anhingas. The moorhens don’t come around anymore.
Out on the patio is where Sandy learned the most about her father — it’s part of the reason why she’s so good at remembering for him. Singer has told her most everything.
Nowadays, once the chores are done, the father and daughter sit together in silence. Sometimes she’ll put her hand on his. There’s not much to say these days. There’s just a lot of time to spend together.
This story comes from Aspirations Journalism, an initiative of The Patterson Foundation and Sarasota Herald-Tribune to inform, inspire, and engage the community to take action on issues related to Age-Friendly Sarasota, Suncoast Campaign for Grade-Level Reading, National Council on Aging and the Suncoast Nursing Action Coalition.
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