As Mom Fades Away

Ninety-two years, five months, and twenty-three days. That was the time span of mom’s journey through this life. Countless numbers of ordinary people complete their life’s journey every day. Only a few family members and friends really take notice. Of that group, only those closest to the deceased experience a profound sense of loss and the challenges of the grieving process. Time marches on. The days and weeks subsequent to mom’s passing roll by. A wide variety of memories and emotions ramble through my mind. Some are simple while others are quite complex. It takes some time to even begin to sort it all out. In the Introduction, I said that my life was forever changed by being thrust into the variety of roles I accepted as part of my commitment to mom’s care. This could be considered an understatement. My experiences with mom and her battle with debilitating vision loss, dementia, other illnesses, and the nursing home environment, go far beyond the realm of normal memories. These experiences are ingrained into my very being. This has been the most intense and difficult overall experience of my life. With that said, this experience also included many intangible rewards that are difficult to explain. I can’t even begin to imagine what it was like to live in the world mom endured during the last three to four years of her life. Living in her own world of confusion, she often didn’t know where she was or why she was there. She gradually lost her ability to understand that with which she was familiar. Her vision issues exacerbated the situation by providing unintelligible images. There were good times when her mind interpreted her thoughts and/or these visual images as something familiar, and put a smile of her face. During hospital stays, she found herself in another unfamiliar place. I have to wonder if some of the sundowners episodes were born of frustration, and a longing to get back to a familiar place. Was that why she often said she wanted to go home? Mom was a fighter, and it showed. Her sense of determination continued, even as her physical strength faded. I believe that had a lot to do with why she made it to 92. As I sat with mom and watched her mostly sleep through what would be her last few weeks, I couldn’t help but reflect on all of this. Mom lived a good long life and I was privileged to have her around for well into my 65th year. At 92 and growing weaker every day, it was obvious that her time was drawing near. My role in mom’s life was almost over, and there was nothing more I could do. Also, mom’s role in my life was almost over. It’s important to remember that this works both ways. Every caregiver walks a long hard road, as I did. I also believe that the farther you go, the harder it gets. This is contrary to other things we do that can get easier as we learn and grow in a given role. Does it get harder because of the physical strain, or some cumulative effect on your psyche from dealing with the constant sense of loss and unrelenting decline of your loved one? I believe it’s both. We sometimes look back and think of things we could have done better. That’s only natural. I know that I dropped the ball at times. After all, caregivers are only human. We need to give ourselves credit for what we do. Dwelling on mistakes may be counterproductive to the wellbeing of our loved one. When things go wrong, it’s best to regroup and move on. After all, that’s the way I felt when someone very important was still with us and depending on me. Despite the hardships of being a caregiver, I believe this role can also be seen as a privilege. This idea may be difficult to accept, especially for a person who is currently consumed by both the daily trials of the role, and its typical lengthy duration. I always felt good about being able to do things to enhance mom’s quality of life, especially during her declining years. After considerable reflection, the caregiver role has taken on a new meaning. When a person is in decline, and as time goes on, they can do less and less for themselves. Isn’t it a privilege to be able to do something that puts a smile on their face, gives them comfort, or provides companionship, just to let them know they are not alone? We can easily do any of those things if we just take the time. By themselves, they can’t. Not helping a loved one through their final years is a squandered opportunity, with no second chance. A family caregiver works in relative obscurity, often isolated, frustrated, and enduring high levels of emotional and physical stress. The caregiver role is truly understood only by those who have endured the experience. Our only reward comes in knowing that we have enhanced the quality of life of a parent, spouse, other relative or friend.