When a family receives an Alzheimer’s diagnosis, life is never the same. Our worlds change dramatically, in ways not a single one of us can imagine until we’ve walked that path. When Alzheimer’s enters, we become different people, gaining an unexpectedly crystal clear perspective of just how fragile life is.
My mom retired in 1998 following a 30-year career with a Fortune 100 company. She worked hard, traveled extensively, and earned the respect of countless people over the years. She was an intelligent, witty, fiercely independent woman loved by all who came into her path. A loyal, caring, compassionate friend, she was often the life of the party.
And then, not even six years after retiring, we began to notice changes in her. They were subtle at first, and may have gone unnoticed in someone who hadn’t been as sharp and independent for so many years. Initially, I told myself these were normal signs of aging, but at barely 68, that didn’t seem quite right. She was repeating herself constantly, finding it harder and harder to find the words she was looking for, and seemed to be on the defensive more often than not. Always extremely outgoing, when she began to withdraw, it was immediately apparent.
Living in Denial
As my own frustration grew, I blamed it on the fact that she didn’t keep herself busy enough when she left the workforce. It made me angry, and no matter what I did to encourage her, it felt as though she wasn’t trying hard enough. Years later, I still think back on it as a chicken and egg situation of sorts. Was her rapid decline due in large part to the fact that she had slowed down so much? Or had she slowed down because she felt the changes occurring long before we realized it?
She lived independently until 2008, which in hindsight, was too long. But, as happens with so many families, we were in denial. We didn’t know how to address it so we did everything possible to keep the peace while preventing the wheels from falling off the bus. Any talk of assisted living was met with intense resistance, and as an only child, there was no such thing as strength in numbers.
Reaching a Crescendo
Those years were rough. Every day seemed to hold another crisis; I began to cringe every time my phone rang. It felt like we were at the doctor or hospital continually, until finally the physical and occupational therapists told us she could no longer live independently.
Ultimately, she lived with Alzheimer’s for about nine years, but the decline was swift. She lost her speech very early on and struggled with emotional upset and depression; meds would be adjusted and things would level out for a bit, and then it would start again. Paranoia, hallucinations, aggression, agitation, you name it. We were blessed, though, that she never completely forgot us – right up until the very end, she recognized my daughter and I as two people that she loved very much even if she didn’t understand our relationship. And in a sense, our bond strengthened inexplicably over those years.
Life After Alzheimer’s
This past weekend marked six months since Mom’s passing, and it’s a constant evolution. Life after Alzheimer’s is gradually being revealed to me, and while I know I’ll figure it out, I’m still grappling with my identity and purpose. It was all so wrapped up in caregiving for a very long time – now I wrestle with missing her more than words can say. I battle the constant fear of getting the disease myself, and with a firm grasp on my own mortality I really struggle with the mundane parts of life. I feel as though I’m perched on the brink of another major life change, just waiting to discover what the next chapter holds…
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