Waking and Dealing with Alzheimer a Families Real Life Accounts

The first real clue that something was wrong with mother became perfectly clear to my wife, kids and me. During a family vacation trip, we all went to visit my youngest brother and his family a few summers ago. You see, it had been ten years since dad passed away.

Mother’s choice to remain in her home where we all grew up, came as no surprise to anyone that knew, respected, and loved our dear mother. The thing that did cause those of us that kept up want the goings on with each other’s families, and mom, sharing a concern for mother’s health, and well-being. Mother became increasingly reluctant, or in many instances flat out, refused to leave the house for any reason other than to pay her utility, phone and cable bills.

In the past, mother always felt the need to fill the role of caregiver. Looking after and caring for someone was her mission in life. Running friends and family to and from doctor’s appointments, visiting her sisters or grandchildren was mom’s joy in life. Although she would often voice her frustrations with stupid choices, many of the kids always seem to make. Mother always seemed to be on the go, or planning the next family gathering at Thanksgiving, Christmas or Fourth of July cook out and never forgetting a birthday of any our vast family members. She went as far as to call family reminding them of birthdays, prompting to call, send a card or the like.

Her choosing to live her life as a shut in, with no good reason any of us could understand for her to want to do so, had many of us disagreeing on what if anything was wrong with mom.

Traveling by train seemed like a good idea at the time. Think about it, with the promise of all the stunning vistas along the train tracks, surely the trip would be a memorable experience for mom and the kids, and just the ticket to get mother out of her house for a while. It was a trip of childhood dreams coming true.

Starting by climbing aboard the California Zephyr in Chicago Illinois, the Amtrak made its way through the Midwestern US states. Our trip would take us through the Colorado Rocky Mountains, on our way to visit my little bro and his family in Morgan Hills CA.

The first night of our family vacation train trip, was anything but relaxing for the wife and I. Our four kids, if you can imagine, were the least of our worries. Exhausted from the day’s activities they went to sleep as soon as their heads hit their pillows. Mother on the other hand, was quite another story.

Disorientated, mother actually believed she was in her home, and could not understand why there were strangers sleeping in her bed. Mother honestly believed the train car was her bedroom, and got extremely agitated with us, for stopping her from undressing while standing in the aisle between the seats of the train car. Making matters worse, my own mother did not recognize my dear wife or me at the time all this was going on. By the way, this went on all night, and every time the train would stop, mother would try to get off the train because she needed to get in her car and pick-up something from the store. After all, her youngest son and his family were coming to visit her, and she needed to pick-up a few things.

While making my way to the rear of the train, and the restroom, as I put my hand on the back of one of the seats. Someone gently touched the back of my hand, in a soft sympathetic female voice asked, is your mother a sundowner?

Taken aback and dumbfounded I was completely unaware anyone on the train was anything other than annoyed by the goings on with mom. Come to find out, several folks had silently been keeping a watchful eye on what was going on with mom, my wife and me, imagine that.

This beautiful human being without question had an emotional connection to the heartbreak of this form of Alzheimer’s disease and dementia. Having went through similar symptoms with her mother, who had recently passed away. The ensuing conversation seemed to be therapeutic for this woman still grieving not only her mother’s passing, but also the way in which the disease affected her and her mother’s relationship. Although happy to share her experiences and the things she had learned having to cope with the challenges of Sundowners syndrome, Alzheimer’s disease and dementia, I could not help but get the feeling; she had not yet come to grips with her sense of loss and the pain she felt as a result.

After all, I believe we can all understand how coping with the overwhelming effects of Alzheimer’s disease after sunset, and during the long nights of winter would exhaust us all.

Reading and hearing about how bad Alzheimer’s is and its effects on folks, and living with the pain and suffering brought about by Alzheimer’s are entirely two different things. First off living each day with the changes the disease brings makes understanding the debilitating disease a life changer regardless if we want to admit it or not.

For me meeting the lady on the train that night was one of those once in a lifetime chance encounters, or for those who believe, was it?

The thing for me was I had so many questions I would have liked to ask the woman who had obviously a better understanding of what lay ahead than I could have imagined. Nevertheless, as quickly as she had gotten aboard the train that night, she had reached her destination and got off the train. Now that I look back on it, that kindhearted woman did answer questions, I did not even know or have reason to ask until now, for that I am grateful. 

Alzheimer’s has altered mom in ways I will never forget. There is something about dear mother’s blank expression, the look of frustration and fleeting moments of clarity that are fewer and farther between that are crushing to both her and those who love her. That has me struggling with my intellectual understanding of the disease and emotionally accepting the mother that I once knew is now lost to me. The stories we once shared, the Christmas morning traditions, Thanksgiving meals at mom’s house and just wanted to catch up phone conversations we once shared of my memories are all I have left of the good ole days.

Mother although now just a shell of her former self, mom still greets people that visit her with a smile, and seems to be comfortable with her surroundings. No longer living in her home, mom is in the Alzheimer’s floor of a nursing home. Waiting for someone to help her in and out of bed, the bathroom and making sure she eats these days is as good as it gets. As my siblings and I learn to cope with the effects of Alzheimer’s disease.

Writing this article, Waking and Dealing with Alzheimer a Families Real Life Accounts, is no easy task. However, I do believe in doing so will help folks like you, and me, better understand our quality of life is precious let us not take it for granted.

Please feel free to post your thoughts, experiences or helpful suggestions in the space provided below. Anyone with something they wish to share privately, I welcome your private message  

Be well, Mike