When Grandpa Started Fading Away

In this moving story from The Long Goodbye series, Sharon Mischakoff reflects on the love, loss, and lessons learned while caring for her husband Matthew through early onset Alzheimer’s.

Photo: Matthew Mischakoff reading to Skyla Widmayer and Samantha Phelps. Photo by Sharon Burkhardt McGill Mischakoff

The Sun Times News presents The Long Goodbye, a series sharing the journeys of three families who cared for loved ones with Alzheimer’s or other forms of dementia. Through their stories, we see the heartbreak, resilience, and transformation that come with caregiving

Matthew Mischakoff of Saline – 1946 – 2013

This is the story of Matthew Mischakoff as remembered by his wife, Sharon Burkhardt McGill Mischakoff.

A Life Well Lived

Matthew Mischakoff was a modern-day Renaissance man. He was a dentist, a skilled musician in both violin and classical guitar, a music teacher, a real estate agent/investor, able to rehab houses, a father, a stepfather, husband, son, brother, friend to all and lover of children. In love, the third time was the charm when he married the love of his life, Sharon. Together, they blended their families and made a life for themselves in Saline.

Matthew was active and physically fit. He had a successful dental practice in Clinton for years. Having additional interests, Matthew transitioned into real estate, buying and rehabbing starter homes for young families wanting to have a part of the American dream. Through the years, he represented buyers, sellers, and bought, rehabbed and “flipped” forty homes in twelve years. And it was in the real estate business where his early onset Alzheimer’s symptoms were first noticed. He forgot things. Simple things.

Early Signs and Growing Concerns

“It is difficult to pinpoint the exact moment when I knew or even suspected that my husband was suffering from memory impairment,” Sharon said. “The first time I questioned his memory was while I was visiting my sister in Alaska. In almost thirty years that she had resided there we had never been together to celebrate our birthdays and my gift to her in 2003 was to spend the week with her. When I spoke to Matthew, he sounded confused. Sometimes, about household maintenance, other times there were questions regarding our business. He would have automatically known the answers in the past, and I wondered if he was trying to make me feel guilty about being away.”

In 2004, there would be an increase in his reliance on Sharon for managing the details of their business. Even the lesson schedules of his music students were becoming a frustration to him. Gradually, more calendar cuing became necessary.

The Diagnosis No One Wants

Forgetfulness became regular. Medical appointments and tests finally confirmed the worst in 2006. Sharon purchased “The 36-Hour Day,” the encyclopedia for Alzheimer’s/dementia. She knew that knowledge would be power.

There are three golden rules in dementia caregiving:

1.  Don’t ask direct questions like “don’t you remember?”

2.  Listen and learn

3.  Don’t contradict…their reality is no longer your own

Sharon learned the three golden rules. So did Breeda and Mel.

“Somehow, when you finally realize what needs to be done is up to you, it’s motivation to take the first step,” Sharon said. “Matthew wanted to keep his diagnosis a secret, but I knew that I had to enlist the help of family, so I told them.”  Matthew’s sister resisted accepting the diagnosis because accepting the verdict of the diagnosis was just too painful.

Letting People In

Sharon was a day care provider, so she knew she also needed to share the information about Matthew’s diagnosis with the families and the children in her care; she knew that honesty was the only choice. She had already explained the situation to family, including her grandchildren. At that time, Matthew’s 5-year-old namesake offered the best explanation – “Grandpa is just fading away.”  Sharon used the same explanation with the day care children. From the mouths of babes.

Matthew applied for disability and was denied. The denial stated Matthew was a candidate for physical therapy and “retraining.”  The denial was appealed and upon review, after explaining that Alzheimer’s disease was the 6th leading cause of death and there was no cure and no effective way of slowing the progression, the disability claim was approved. Thankfully, since that time, Alzheimer’s disease has been added to those medical conditions that currently secure disability approval upon application without having to go through the lengthy appeal process.

The Final Years

“Living with Alzheimer’s Disease is like going on an amusement ride, one that varies in highs, lows, plateaus, and velocity,” Sharon said. “2008 was an especially volatile year. Just when I thought medications and medical staff were stabilizing, changes happened.”  Sharon described the process of retrogenesis. “It refers to the observation that the loss of life skills caused by Alzheimer’s Disease happens in reverse order of their acquisition. It is the sad part of the long goodbye when you witness a chronological reverse order taking place.”  

Matthew continued to deteriorate and died in 2013 from “failure to thrive due to Alzheimer’s”…he no longer knew how to eat or swallow. His celebration of life was just that, a gathering attended by family, friends and colleagues who celebrated with music and stories the Matthew that had been a gift to their life.

Former First Lady, the late Rosalynn Carter, said there were four types of caretakers. “There are people who have been caretakers. People who are caretakers. People who will be caretakers. And people who will need caretakers.”

Like the other families, Sharon and the children have all continued to move forward and live their lives. And like so many others, they are forever changed by the experiences along the path of the Long Goodbye.