10 Years of Caring for Her Mother: A Daughter’s Love Helped Her Through the Roughest Times
By Yuridia Peña
CSA has partnered with the Alzheimer’s Association/NYC Chapter to raise funds for research as well as to promote the services the Association provides caretakers and Alzheimer’s victims. As part of that partnership, the CSA News is highlighting five members who have cared, or are still caring, for a spouse or parent struck by the disease or related diseases. This is the second in a five-part series.
‘When you’re caring for someone with this you’re not sure if you want to kill yourself because it becomes a 24/7 job,” said Karen Rabinowitz, a retired Assistant Principal who, for a decade, cared for her mother, Lillian. Lillian was striken with, and ultimately died from, vascular dementia.
The risk for developing dementia increases, as a person gets older. “There are always signs but we tend to believe – oh, we’re just getting older – that’s it. And in the early stages of dementia you either cry a lot or laugh a lot – my mother laughed a lot,” Ms. Rabinowitz, told the CSA News one morning earlier this spring at her Queens home.
Tragedy Triggers Symptoms
She’s had a lot of tragedy in her life since her father, Arnold, died in 1999. Two years later, her sister, Rochelle, died of a rare cancer in 2001 only a month after her diagnosis. Her mother, Lillian, meanwhile had begun showing small signs that something wasn’t right around the time of her father’s death. Ultimately, she was finally diagnosed with dementia in 2005.
“When my dad died she told me: ‘You always lose those you love’ but my mother was stronger during my father’s death than with my sister,” Ms. Rabinowitz said. The death of her husband, and especially the death of her daughter, triggered the worsening of Lillian’s dementia.
Ms. Rabinowitz promised her mother that she would not place her in a nursing home. “After visiting some of these places, I would rather someone put me in a dumpster,” she said. “They might be losing their minds, but the last thing they lose is their emotions. They may not know what world they’re in, but they feel,” she added. [Editor’s Note: Some nursing homes provide excellent care, but they are the exception and usually far from where the family lives making regular visits nearly impossible. As important, they are also prohibitively expensive for many families.]
Ms. Rabinowitz lived with her mother for 11 years and vividly remembers sun-downing episodes. “During downtime, I played games on the computer, but, when sundowning arrived the games were over,” she said. Lillian became verbally abusive and would scream: “I want to go home”.
(Sundowner’s syndrome is the name given to an ailment that causes symptoms of confusion after the sun goes down. These symptoms sometimes appear in people who suffer from Alzheimer’s Disease or other forms of dementia, and why it occurs remains a mystery.)
“There were days I wanted to run away from home,” Ms. Rabinowitz remembers. It was difficult for Ms. Rabinowitz to watch her mother turn into a stranger. During her last couple of years, Lillian was unable to feed herself or swallow food. Ms. Rabinowitz pureed all her mother’s food; “It was a complete role reversal,” she said.
Ready to Die
Lillian died on May 1, 2010. After her death, Ms. Rabinowitz naturally had mixed feelings. “I loved my mother very much. In a sense, it (her death) gave her some relief.” Ms. Rabinowitz explained that just 10 days before her mother died, Lillian had a lucid moment and told her daughter, “I really want to die … I’ve had enough.”
Despite the solitude and frustration she endured while caring for her mother, Ms. Rabinowitz says she has no regrets with her decision to become Lillian’s full time caregiver. “I [would] do it all again, because I know if something was wrong with me, my mom would not have given up,” she said.
Today, Ms. Rabinowitz leads support groups for caregivers of individuals with Alzheimer’s or other age-related dementia at Selfhelp’s Alzheimer’s Resource Program (SHARP). (See story below for more information.)
She’s also recovered her own life after spending so many years caring for her mother. She enjoys going to the gym, catching a movie and reconnecting with old friends. On this particular day, as she told the story of her mother’s disease, she was waiting for Time Warner Cable electricians to replace her dial-up modem for a wireless one with high-speed Internet access, a project she finally had time to get to.