Struggling to Care at Home for an Aunt with Alzheimer’s

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A notepad from Snoo’s home reminding her of a visit. Photo credit: Jenn Director Knudsen

Author Jennifer Director Knudsen’s grandmother died of Alzheimers; now her family is struggling to care for her aunt living with the same disease

By Jenn Director Knudsen/Portland

Mom always described her older sister as the smarter, more talented, more attractive of the two of them. That was the narrative I heard growing up.

However in adulthood, Aunt Susan — whom my little sister and I affectionately referred to as “Snoo-Pooh” or “Auntie Snoo” — seemed to get the short end of the stick.

Snoo had a crummy first marriage that didn’t yield children, though I’d understood that she’d wanted to be a mom. She then lived alone for years, with her loving and loyal dog, in a multi-story Victorian in a Seattle suburb. She worked for the public transit company in a complicated job that demanded cerebral and solitary work. A divorcee rattling around her very spacious and slightly creaky home, my aunt always seemed lonely, or, at least, satisfied with solitude.

And, she was both very set in her ways and loath to make a decision. (If she did manage to make a decision, it was very long in coming. As a teen, my mom and my aunt’s friends used to tease her, calling her “Flash.”) While her sister and her two nieces — my younger sister and me — lived in Portland, she remained three hours north, stubbornly and fiercely independent.

A Second Take on Life

Flash-forward decades. A family friend sets up Auntie Snoo with a divorced doctor in Portland, and they hit it off. So in love was my aunt that she contemplated moving to Portland and living with her boyfriend. Years later, she at last decided to relocate to Portland, and eventually she committed to living with the good doctor. And years after that — once my sister and I had become mothers ourselves, and the doctor’s children also had become parents — my aunt and new uncle recited their vows in a moving service in the local county courthouse.

About the time her life’s love was stricken with a first bout of cancer, Aunt Snoo seemed to be slowing down, too. His physical decline mirrored her cognitive slide. My uncle rallied and his doctors said he might live three more years. Then, a second and more virulent bout of cancer hit, and he was dead within weeks.

 Alzheimer’s in the family

My uncle had rather cleverly covered for what to immediate family was Snoo’s obvious cognitive decline. She started to look and act increasingly like her own mother had, who, to me, always seemed kind of out of it and slow to keep up with those around her. My mom — not my aunt — had become their mother’s de facto caretaker. For at least 10 years, Mom frequently schlepped the half-hour to my grandmother’s house to ensure she was well taken care of. It took decades for my grandmother to completely succumb to Alzheimer’s, and eventually, a wonderful care facility became her home and my mom’s respite.

Agreeing that it was time to move her mother into a facility was a very long road for my mom. She worried constantly the guilt of “institutionalizing” her mother would mark her end. And yet, once my grandmother was ensconced in her facility and had a part-time caretaker, Mom was able gain back more of her own life. Toward the end of my grandmother’s nearly 95 years, she remained capable only of hitting certain musical notes in lieu of speech. Da-da-da, she’d intone.

And, now, two years a widow, my aunt, now 75 years old, is following her mother’s decline.

Snoo’s Alzheimer’s

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Snoo’s pillbox      Photo credit: Jenn Director Knudsen

It’s frightening to behold, and the memories of their mother’s Alzheimer’s haunt my mother. The feelings of guilt have returned, as has the fear, all exacerbated by my aunt’s rapid decline, much faster than her mother’s.

Mom has taken to placing increasingly fraying bandages over the proverbial wounds around Snoo’s condo. Snoo has a huge calendar pinned to one wall near the telephone. She used to be able to write events and appointments into the big daily squares, but no longer. So Mom does it for her, wanting to believe her sister will remember to consult her calendar and understand what’s written on it. The microwave now has written instructions taped to its keypad. They go unheeded; just recently a long-forgotten meal rotted, having sat well beyond its expiration date in the unused microwave. Mom wrote a pill-instruction chart for her sister, but Snoo doesn’t remember where it is — taped to the inside of the cabinet where her pill bottles are located. Mom has tried to remind Snoo she has a closet full of clothes, but my aunt wears the same thing every day.

Together, Mom and I have toured facilities that I believe would be amazing for my aunt. But Mom isn’t so sure; she remains stymied by fear of guilt for “putting her sister into an institution.” Fortunately, Aunt Snoo has a part-time caretaker and their adoration of one another is mutual. Snoo frequently tells me about what a wonderful cook she is; when she forgets her name, she’ll refer to her as “this little angel.”

So while she can enjoy the companionship and assistance both the caretaker and Mom offer, Snoo remains her mulish self. As the dementia has clamped down with increasing force, so, too, have Snoo’s most difficult personality characteristics. Stubborn, yes, and also snippy. Snippier than she ever was before.

Mom shared with me recently that once their own mother’s decline had reached a certain, terrible level, she used to leave her side, get behind the wheel of her car, and cry all the way home. She confessed that pattern has begun all over again, this time with her sister the one left behind.

 Where do we go from here?

I hate seeing my mom suffer like this, always believing her genetic clock is ticking toward dementia just like her grandmother and mom’s — and now her sister’s — had before her. She keeps fighting for her sister to live “independently.” That’s what Snoo says she wants and she insists she can pull off. Until another day without food and her thyroid pill go unswallowed.

Where do we go from here? All signs lead to the same one or two excellent facilities for people just like my aunt: those who are loved and desperately need the scaffolding that family members struggle to shore up without realization or recognition or respite.

And I worry that as I lose my aunt, the stress of caring for her could mean prematurely losing my mom, too.

–Jenn Director Knudsen is a freelance journalist and editor in Portland, Oregon, and co-owner of 2B Writing Company.

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