Alzheimer's can be, to say the least, a trying ordeal for a patient suffering from the disease. Oftentimes, it can also be almost as big of a struggle for the friends and family of patients who take daily care of their loved one who's been diagnosed.
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For one South Jersey woman, the news that both her parents had been diagnosed with Alzheimer's led to a journey that has been at times a hardship, other times an adventure, but almost always a lesson.
Elizabeth Wolf was recently profiled by the New York Times for her care of her 81-year-old dad and 65-year-old mom. She moved back into her parents' Mount Laurel, New Jersey home after the two were diagnosed, and has been blogging about the experience at upsidedowndaughter.com.
In her Times profile, which reads as a personal essay from Wolf, she notes what was expected to be a short stay has essentially turned into a full-time job.
Her parents' memory loss and inability to perform daily functions have forced her to change her entire life. Helping her mother go to the bathroom and giving medicine to her confused father are some of her daily activities.
Despite how hard being her parents' caregiver has been, she refused to let them stay in a facility after a bumpy experience three years ago. From the Times:
There was a point in May of 2013 — we’d been here two and a half years — when we had plans to move my parents into a facility. We were going to do a respite stay, and if they fit in, if it went well, we’d sell the house.
We did everything we could — we brought couches and furniture from their bedroom — to make the place feel homelike. But it wasn’t home. For my dad, it lasted three days. He started having panic attacks, to the point where he was throwing up.
He was still with it enough to call us. I remember getting a message from him, weeping. “It’s Daddy. Please, me and Mom want to come home.”
Everybody, including his doctor, said, “You have to leave him, you have to let him adjust.” I couldn’t do it. I would never judge the people who do, but I couldn’t.
They’ve been here 40 years. All my dad ever wanted was this home. Who am I, if I take my dad from his home?
The Times essay is a snapshot of Wolf's daily musings about her and her parents' journey. At her blog, she semi-regularly updates readers on the highs and lows of being a caregiver.
This includes posts about learning more about her mom through the disease and the feeling of knowing your own father doesn't recognize you. From a March post:
Home. And feeling exactly this way. My love for them is crashing through me. The tide in my chest, like I swallowed the ocean. I walked in the door 2 nights ago, reunited with them after 10 days away, and took in the sight of my father in his chair. “Hi Dad!” I cried. “Hello,” he answered, detached. Knowing enough to hide what he didn’t. Me.
Wolf will eventually lose her parents to the disease, she writes. But for now, she continues to provide inspiration and insight to families impacted by Alzheimer's. You can check out her blog here, follow her on Instagram to learn more about her journey, and check out the Times essay here.
To find more information about Alzheimer’s disease, you can visit the Alzheimer’s Association’s website: www.alz.org.