When Alzheimer’s strikes … twice

OAKLAND – “Have you seen my pocketbook?”

“It’s on top of the refrigerator, Gram, where it always is.”

Fifteen minutes later, the same question and the same response from another sibling.

As a young child, I watched my paternal grandmother slowly deteriorate to a vegetative state with what is now called Alzheimer’s disease. My grandfather cared for her for years until she progressed to the point where he could no longer provide the level of care that she required, and he was forced to place her in a nursing home. My father never talked about Gram’s condition but it became evident to me on my last visit to see Gram before she passed, just how very difficult it was for my father to watch what was happening to his “Mum.”

Fast forward 30 years. After my father passed away, I stopped to check on Mom nearly every day after work. The questions during our conversations would often be repeated, but I just brushed it off, thinking she had a lack of things to talk about and was trying to keep the conversation going so I wouldn’t leave. After all, she was barely 60 years old. What else could it be?

The repetitive questioning progressed steadily over the next few years from once or twice weekly to once or twice a daily and eventually every couple of hours. I knew then that our family was entering round two with this dreadful disease.

Mom’s Alzheimer’s disease seemed to progress relatively slowly over the next few years as compared to others afflicted with the disease. The repetitive questions continued, and I used the frequency thereof to gauge her progression. When the frequency of the repetitive questions reached about every three to four minutes, it became very frustrating at times to hold a conversation with her.

After answering the same question with the same answer a dozen times in a row in a 30-minute time span, I couldn’t help but change my responses! Needless to say I felt guilty doing so, but it became a way for me to stay in the conversation with her without showing frustration.

Mom continued to live alone for a few more years until the disease progressed to the point that it was unsafe for her to be unsupervised.

It was now time to place Mom somewhere, but our options were limited, as she made us promise her we would never allow her to be placed in a “home.” Fortunately, my sister Julie and her husband, Mike, took Mom into their home. And over the next three years she remained there under their devoted care until it became clear to them that they could no longer safely provide the level of care that Mom required.

Our family now realized we had come face to face with the inevitable. Yes, the time had come for us to begin searching for Mom’s new home. We consulted with Peg Soucy, an elder-care planning specialist and our safety net. We also researched online, visited facilities and spoke with others who had recently placed a parent afflicted with the disease.

We finally chose a facility that we thought would be a good fit for Mom and marked the calendar a few months in advance in an attempt to prolong the fated inevitable, as if a miracle was going to happen and Mom’s symptoms would somehow disappear. Anxiety built as the day neared and eventually arrived.

Anxiety, guilt, sadness and relief are just some of the feelings we all experienced that day. Seeing the frightened look on Mom’s face and tears in her eyes was especially difficult, as she clearly knew what was that we had let her down. We broke our promise. Needless to say, it was very difficult to walk out the entrance and leave Mom behind. This was a new chapter in all of our lives; however, we had all read that novel before, 30 years earlier.

The very next day Mom had a fall and was taken to the hospital. Fortunately, she was physically fine, but we were all emotionally wrecked and returning her to the facility proved to be even more difficult the second day than the first. A shadow of doubt now hung over us. Did we make the right decision? Two weeks later another fall and another trip to the hospital. The shadow of doubt now became an overwhelming storm cloud that brewed aggressively within. With our minds spinning like that of a cyclone, Julie and I made yet another promise on that very night to Mom. We would open our own Alzheimer’s care facility for her and other families’ Moms and Dads.

So the idea of running our own Alzheimer’s care facility was born that night in the hospital. But how could this ever become a reality when considering facility design and construction, obtaining the required licensing and certifications, as well as operating a new business that we knew little about.

Conceptually, our facility would be different than your typical larger, institutionalized facility. We wanted a smaller, warm and comfortable facility, so residents would feel more at home. A high staff-to-resident ratio was a must to provide more individualized care to each and every resident. Treating our residents with dignity and providing them with personal care and daily hygiene would be a top priority at our home.

It seemed from the very beginning that this was meant to be. The very next week after making the latest “promise” to Mom, Julie and I stumbled on a former foster care home that had been vacant for several years. Looking past the purple and pink paint, the broken doors, the holes in the walls throughout and the general disrepair of a vacant building, we knew we had the perfect facility. Within two weeks we had the property under contract. The process had begun!

Six months later, Bedside Manor, a 10-bed Alzheimer’s care facility located in a beautiful country setting, was open. From concept to completion, this was truly a family effort established out of love and respect. Our brothers, husbands and wives, sons and daughters, nieces and nephews and family friends all contributed in some capacity to make our dream a reality. Mom and others afflicted with this dreadful disease now have a place to call home where they will be well cared for, safe and treated with dignity. That promise, we kept.

When someone in your life has Alzheimer’s, the questions keep coming. We help you find answers.

Long-term residential care respite care, adult day service, 207-465-2527, www.BedsideManorCare.com