Written by Monica Vest Wheeler
When I wrote a book on coping with the emotional and everyday challenges of Alzheimer’s, dementia and memory loss in 2008, I had no idea how much I’d rely on my own words two years later.
In spring 2009, I noticed something peculiar about my father-in-law. A couple of family members agreed, but what was it. Hmm, I wondered if it could be dementia of some kind….
Worry about his behavior escalated a year later. My husband Roger, oldest of five, and I offered to move him from Florida to Peoria at age 83 where we could find assistance, as we were the ones with the most flexibility. We didn’t have a diagnosis yet, but he had slipped considerably in a year.
By this time, I had become involved in assisting Alzheimer’s Association support group meetings as a co-facilitator and engaged with many families. I knew we needed a thorough examination by a doctor familiar with dementia. Families must venture down that terrifying road first, because the longer you wait, the harder it gets….Denial will dig its vicious claws into everyone and disrupt families like nothing they’ve ever seen.
Within two weeks, we got that diagnosis: mid-stage Alzheimer’s. I stopped at the Alzheimer’s Association office in Peoria to fill out paperwork for a Safe Return bracelet. The staff member who I worked with saw my tears and gave me an extra big hug that day, commending me for doing the right thing by protecting my dad-in-law with that bracelet.
Over time, people would say, “What are you going to do? You wrote THE book.” Yes, I had collected the experiences of families coping with the disease, and it was all raw, real and relevant. As my own caregiving journey commenced, I found that when I took my own advice generously served in my writing, it helped tremendously.
But my heart often got in the way. Love can set up emotional roadblocks that seem impossible to conquer, especially as his abilities seemed to slip daily and his behavior became more erratic as we tried two different assisted living facilities. We attempted medicines and different dosages to even out his moods, but the day his angry fist came within inches of my face, I knew drastic measures had to be put into place immediately. This was a little over two months of moving him to Peoria.
Roger and I searched for Alzheimer’s care facilities, and one of my sisters-in-law was able to visit and help as she was also shocked by the change in her dad. I put him on waiting lists at five units, with no idea when an opening would give us the relief we needed. My husband and I endured the most stressful stretch of our 31-year marriage as we waited and made daily visits to pacify his dad and try to address this obsession he had developed about money and accusing us of stealing from him.
We could not lock him in his room or inside the building, and he would occasionally toss lit cigarette butts into bushes, once leave the microwave running for 40 minutes, and often scare fellow residents with warnings of God’s wrath to be leveled against the evil people of Illinois. Other than that, he was a nice, lovable guy.
Hindsight tells me maybe we should have brought him into our home while waiting for that magic opening. We were so emotionally exhausted by the stress that we honestly didn’t think of that option. The assisted living staff were beyond patient and supportive, understanding our predicament…but all of us knowing we had to place him in a locked facility for his and everyone else’s safety. We no longer had a choice.
The August day I drove him to the Alzheimer’s unit with an opening nearly an hour and a half away from Peoria…one of the hardest moments of my life, tricking him into checking out this nice place with me…moving his stuff in while a staff member kept him occupied…and walking away as he banged on the door to let him out. It still hurts my heart.
But we could and had to sleep that night…for our own health and sanity. I had already told many caregivers, “I don’t want to read on your tombstone what a great caregiver you were.”
Our rollercoaster ride was not over as we had to deal with more medications to calm him, diffuse his anger, survive two stints in a mental health ward…to keep him vital but not doped up. It took a while but he found calm and an outlet by endlessly “walking the rails” down the hallways. That’s where I’d find him when I visited. Sometimes he’d nicely ask me to get him out, but with simple redirection, there were no more outbursts.
He was home now, where the staff came to love him, his smile, gentle nature and trail of candy wrappers. These folks became part of my family, as we united to keep him safe and comfortable…until he passed away peacefully May 12, 2011. I lived at the Alzheimer’s unit at his bedside the last 11 days of his life.
We designated the Alzheimer’s Association for memorial contributions because I could not have survived those difficult early days without the skilled and kind souls I found there…a classroom of life I continue to attend because they recognize that everybody and every body is different. Families share the same emotions of fear and grief, but their experiences are unique.
Here’s the rest of our unique story: We made the difficult decision to donate his brain for Alzheimer’s research in hopes of helping other families avoid our heartache. To our surprise, he had no sign of Alzheimer’s, but vascular dementia, likely brought on by the brain injury he had suffered 30 years earlier after a fall. It all made more sense…and eased our worries about Alzheimer’s in the family.
The most valuable lesson? No matter how strong you think you are emotionally and physically, you can’t survive this alone. Thank goodness I learned that before my own journey began.