By Sherry Amatenstein, LCSW
If there is an “up” side to Alzheimer’s, it is that this horrific disease gives Boomers the opportunity to grow closer to an afflicted parent after years of enduring a difficult relationship.
That is what happened to Martha Stettinius. Martha, 47, an editor, former communications coordinator, and the author of Inside the Dementia Epidemic: A Daughter’s Memoir, explains, “My mom went into treatment for alcoholism when I was 14.” Two years later Martha left home for good. When she’d visit, things were strained.
Then, in 2005, Martha could no longer deny the mounting evidence that her 72-year-old mother was no longer competent. Once fiercely independent, Judy lived alone for the past 25 years in upstate New York. A former teacher, she now couldn’t balance a checkbook or heat up a can of soup. Her lakeside home was overflowing with garbage, she was unable to cook, and living on crackers…
Two frightening truths: one in 8 people over 65 has Alzheimer’s and dementia, and in the United States, over 15 million family caregivers provide 17.4 billion hours of unpaid care to family members with a form of dementia.
For Martha the initial decision was to have her mother move in. As with many Boomers in this predicament, the choice proved problematic. At the time Martha, her husband and children, 10 and 8, were living in an “intentional community” aka collaborative housing in which families have private homes yet share many common areas and decisions with residents.
“I was so naïve," Martha laughs. "I thought my mother would be more involved with the community. But she was incapable of making friends and horribly depressed. She’d snap at my daughter, then forget she’d snapped and not understand why my daughter was upset.”
Understandably Martha found it “difficult to be a superwoman - caring for kids and an infirm parent.” Fortunately, Judy had savings. “She’d always been good at balancing every penny,” Martha says. Thus there were alternatives.
The next step was placing Judy in an Assisted Living facility and finding her a part time aide. Martha says, “I knew mom wouldn’t remember our conversations so I wrote her a 7-page letter explaining why this option was best for her.”
This solution worked…for a while. But Alzheimer’s never stands still. It creates small and sometimes large earthquakes, causing caretakers constantly to seek new and higher ground as sufferers need more levels of care. Indeed over the years, Judy, who is now on Medicaid, has lived in five different care settings.
Though this journey Martha has morphed from estranged daughter into an advocate for the needs of family caregivers as well as a New York State volunteer representative for The National Family Caregivers Association.
Judy spent two happy years in a "memory care facility" for people living with dementia. This is an assisted living center with a special wing devoted to daily games and therapies aimed at helping stimulate the memories of the residents.
Alas the day came when Judy deteriorated too much to remain at the facility. For the last two and one/half years she has been in a nursing home. She needs to be spoon-fed, and speaks in halting language.
And yet the quality of her life, especially her life with her frequently visiting daughter, has moments of clarity and beauty. Martha explains, “I learned to slow down along with her. I can just sit and be with mom and do what she finds enjoyable - for instance, listening to music and sitting outside. “
It’s been important to help Judy feel useful as well. Sometimes Martha tells her, “Mom I could really use a hug,” and the older woman will stroke the freckles on her daughter’s arm.
In the years they were estranged, the two would say “I love you” but not really mean it. Now when mother and daughter voice the phrase – even if, in Judy’s case the language isn’t always clear – it’s a heartfelt, truthful declaration. Martha insists, “Having a parent with dementia or Alzheimer’s doesn’t have to be the long goodbye. For us, it’s been the long hello.”
Sherry Amatenstein, LCSW is a NYC-based therapist, speaker and author of 3 books, including "The Complete Marriage Counselor: Relationship-Saving Advice from America’s Top 50-Plus Couples Therapists” (Adams, 2010). Her website is www.marriedfaq.com.