THE SLIPPING-AWAY TIME
While aiding his mother with Alzheimer's, a caring son seeks help for the two of them.
BY:ANNE HOSANSKY
Photography by Fran Collin
"I'm in a countdown situation." That's how Carlos Figueroa describes being the primary caregiver for a mother with Alzheimer's.
A 50-year-old New Yorker, Carlos works for the United Nations as an Information Technology Manager. Actually, the UN has been an integral part of his family's history, for his parents were working for the organization when they married over half a century ago. His Cuban father, Godofredo, was a UN meeting planner. His mother, Myra, whose parents were Panamanian and Jamaican, worked in the printing department, "stripping in" corrections on negatives "I was a stripper," the petite 85-year-old jokes with a flash of her former humor.
When his father died in January of last year, Carlos moved in with his mother temporarily to help her through this time. But he was unprepared for her behavior. "She'd get up in the middle of the night, get dressed, come downstairs where I was sleeping on the couch, and say, 'Let's go.' When I refused to get up, she'd get angry. Finally she'd go back to sleep, but two hours later she'd come downstairs again, dressed in different clothes."
Her cardiologist told Carlos he suspected Alzheimer's. When Carlos took her to a specialist for an evaluation it was confirmed that she was in the middle stage of the disease. The doctor said Myra could remain at home, but someone had to come in every day to give her a hand. He also advised against telling her the truth since it would be both distressing and, because of her disease, incomprehensible to her.
For Carlos, the responsibility was overwhelming. Divorced, with no children, he had no one to turn to except his sister. But she was still too devastated from the loss of their father to be of help. "She told me she couldn't deal with this," Carlos says. "I respected her for knowing she had to take care of herself, but I resented having this load dropped in my lap."
For several months he stayed with his mother, but the constant care and lack of sleep made it impossible to go to his job. He had to apply for special leave without pay. "I talked to my mother about having someone else stay with her, but she told me, 'I'm not interested in having a stranger here.'"
Carlos's cousin knew a woman she thought would be a good companion. "I introduced them and they hit it off perfectly, because my mother didn't know the woman was there to take care of her.
With the woman willing to come on a daily basis, Carlos moved back to his apartment "to get some sleep." He was also able to get back to his job. "Working is the best thing because it gives you something else to focus on."
But there were constant battles between his mother and the woman who lived with her. "I told her, 'You don't argue with someone who has Alzheimer's,' but she did it anyway. This wasn't working out, so I got a social worker to help me find a professional aide. That didn't work out either. There were arguments and threats. At work I was on pins and needles, because my mother kept phoning to say, 'Get that b---h out of here.' She never used to talk like that. We went through three different professionals. The last one, my mother locked out of the house."
Asked if he was angry himself, Carlos says, "No. What I felt was desolate and helpless. I can't find words to describe how frightening it is to see someone you turned to for advice and guidance all your life become an emotionally disturbed person. I had to adjust to the fact that I was dealing with someone who has a very short memory span, and try not to get irritated when I have to keep repeating things, or chastise with, 'I told you that.' I understand that my mother feels trapped in a very scary place."
He was still taking her for monthly evaluations. "Around the time the third person was sent packing, the doctor told me we had to get my mother out of the house. It was devastating to hear that. He suggested I look into a place called Hearthstone Alzheimer's Care. It's in Manhattan, part of an assisted living center. I checked it out and was impressed by the facilities."
The challenge was to persuade Myra to move there. The director suggested bringing her on a weekend when there was going to be entertainment and big band music. "She was the life of the party, dancing, helping to serve cupcakes. Everyone was charmed by her. It was the first time in a long while that I saw her smile."
Afterward she kept asking when they could go again. Carlos told her she could live there. Myra refused. "It's a typical reaction, but the doctor said once she moved there she'd love it." At this point Carlos' sister said she was ready to take over, and was adamant about their mother not going into any kind of facility.
In an ongoing situation, he and his sister "more or less" share responsibility. Carlos comes to the house twice a week, visits he says his mother doesn't remember an hour later.
"She's slipping away from me, so I try to give her as much affection as I can. I compliment her on how she looks, her choice of clothes, because that's always been important to her. And I play old songs for her, like Nat King Cole. The minute she hears the first notes she remembers all the words and sings with them. It gives her a sense there are still things she can remember."
Carlos, these days, is training to be a grief counselor with the UN's support staff. "We'll be counseling personnel going through all kinds of things, like family problems and stress-related illness." The ironic thing, he says, is that he probably couldn't have done this without the "acceptance and tolerance" he's learned to have while caring for his mother.