THE BLOG
10/01/2014 08:31 am ET Updated Dec 06, 2017

Coping When A Family Member Has Alzheimer's

By Natalie Papailiou for KnowMore.tv

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I first knew my grandmother's Alzheimer's had gotten bad when she tried to feed my one-year-old black olives with the pits still in them. She thought they were grapes. We had moved in with my folks (my grandmother lives with them) for a few months before our new house was ready and the olive incident was a pivotal moment where I realized that my beloved Oma may look like the woman we've known for decades, (the loving lady with the tinkling laugh who adores opera, crochets stunning blankets and speaks six languages) but that she was no longer the Oma we knew.

Alzheimer's changes everything

Over the past 5 years since my grandmother's diagnosis, Oma has deteriorated -- seemingly on fast forward. She forgets everything -- names, places, what she had for lunch and even my grandfather, who she was happily married to for nearly 65 years. She was troubled to realize that I was pregnant again a few years ago, explaining, "You're only 16"( I was 34). She accuses my father, a Greek, of being a member of the Polish cavalry.

Once a force of nature who routinely cooked so many hand-rolled perogies that the table sagged under their weight, now she sits in a daze, often staring at the television, completely unengaged in the world. She refuses to cook, knit or go for walks which used to be things she enjoyed. When she does communicate, it's usually to ask what time her mother will be picking her up to go home. Home to Poland. She hasn't seen her mother in over 60 years.

Like a toddler

Oma lives full-time with my parents, which is a burden not unlike having a toddler. Both Oma and any given toddler can say crazy things that make no sense, barge into your room in the middle of the night, eliminate on the floor and be prone to upset for no particular reason. Unlike a toddler, however, there's really no upside. There's no tight hugs, sweet smiles or adorable milestones reached. Toddlers will eventually grow out of this challenging stage. Oma only keeps getting worse as her mind meanders further and further away from her.

Oma is taken care of by her daughter, Pauline, my mother. My father offers amazing financial and emotional support as well as picking up all of Oma's prescriptions, getting her in and out of the car and making meals for her on the rare occasion my mom chews through her shackles and leaves the house.

I have no idea how my mom is able to have so much patience with Oma -- who often has no idea who her own daughter is and is alternately catatonic or hostile.

Paranoia sets in

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Oma lives under the suspicion that there is always someone trying to steal her purse. So in addition to taking Oma to doctor's visits, bathing her, setting her hair, doing her laundry and preparing all of her meals, my mom spends an inordinate amount of time telling Oma she does not need to take her purse to the bathroom.

Caretakers are saints

My mom, and any other volunteer caretaker for an Alzheimer's patient, is nothing less than a saint. These caretakers express a kind of unconditional, unrelenting love that many people don't understand. i=It's a love with absolutely zero payback. After working her entire life, my mom has now given up the enjoyment of her retirement as well as time with her grandchildren, travel with her husband and involvement at her church to care for an ornery and indifferent mother whose body is still alive even though her essence is long gone.

When I think about the slog of exhausting daily tasks my mom performs for Oma, from cleaning up her accidents to reminding her, for the umpteenth time, how to get to her own bedroom at night, I mourn at the unfairness of a disease that leaves bodies mostly intact but robs mind and spirit. It's beyond cruel.

While Oma will often not acknowledge people coming into the room, she will ask anyone coming through the front door, "How was the traffic?" If you are with her for even a half hour you will be sure to get that question about fifteen times. She has no memory of asking it, let alone what your answer was. Alzheimer's not only steals the past memories that create our identities, it also takes away the ability to make new ones. There is no dignity in this slow and painful erosion of the self.

I can't help but be resentful

Mingled with the sadness, it's hard not to feel resentment and anger not just at this predicament but sometimes even at Oma herself. How can she not remember her late husband? Why won't she remember the name of her youngest great-grandchild when we remind her again and again? This isn't the loving, caring person we used to know. You have to remind yourself that Oma is not knowingly being difficult... it's just the disease.

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Shell of her former self

If you hadn't seen Oma in a while, you wouldn't be able to reconcile this lost shell of a person with the same one who used to get up early to cook eggs, bacon and pound cake for my sister and me when we were out partying the night before. While my mom would run the vacuum and play loud salsa music hoping to shame us into never drinking again, my Oma seemed to sympathize with our self-induced plight (as grandmothers do), whipping up ever more coffee and toast sans judgment and sharing the story of how she got blitzed on peach schnapps back in the day.

This compassionate, fun-loving woman is a far cry from the Oma we know today. My children have a game where they repeatedly ring the doorbell at my parents' house. After someone answers, they wait until the door is closed and ring the doorbell again. While most people have a tolerance of about three rings or so for this game, it never gets old to Oma.

Blissfully unaware

She doesn't seem bothered by the interruption and she is always glad to see these unfamiliar little people. It's never an annoyance for her since, in her perception, they are coming to the door for the first time. It's fun for the kids, but it's painful reality for the rest of the family. We all want to be witnessed, particularly by the people we love. When they are right in front of us, but don't see us anymore, it's simply heartbreaking.

More than the constant care that my mother gives to Oma, more than the fact that Mom is often housebound taking caring of her, for me, the fact that Oma doesn't see her loved ones anymore is the most painful part. She no longer relates to my mother as her daughter. My mom is just someone that meets her needs. I can't imagine how crushing it would be if my mother didn't know me anymore.

Silver Lining

The only silver lining of this impossible situation is that Oma herself often seems generally happy or at least at peace. In her mind, she's sometimes still a teenager. Her mother and her Aunt Dina are still alive. During her rare moments of lucidity, Oma once talked with fondness of her two pet border collies (that she never owned). While the rest of us are wondering where our Oma went, her mind is somewhere and, wherever that is, she seems to be happy there.

Maybe that's the saving grace. Oma was a refugee during World War I. She has seen death, lost parents and suffered extreme hunger and poverty. Along with the good stuff, all those horrific memories that haunted her have been wiped as well.

Perhaps there's a liberation for Oma in that, but it is not ours.

All photos used with permission from the author

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