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Alzheimer's Effects on Caregivers


Title: Alzheimer's Effects on Caregivers
Subject: Meryl Comer

For me to take care of my husband, I had to leave my career right in its prime, but I made a decision that family came first. I always made that decision. It took a toll. We had two adults in their prime out of work and my husband had no long-term care insurance. So, I had to confront the reality that it was a straight financial bleed. It was overwhelming, which is why, quite frankly, I did a 12-hour shift. I was the cook. I took care of arrangements. I did everything behind the scenes to make it work and treated the nurses in the house like family, which they became over the years. The doctors would not let me do it alone after, five or six years, because they were afraid that I would wear out. I was afraid we would be going bankrupt, which is why I just kept going.

I’ve often thought that as caregivers we try to do what they call palliative care. You play to any strength your loved one has for as long as you can. And for my husband it was the physicality of exercise, tennis. It was to play the music that he loved. He came from the rock and roll era. It was to figure out what might hold the attention. We watched television together. I played music. And then, my husband became agitated, so I had to turn off all sound in the house. But you do whatever you need to do to get through the day. If you get something to work, you don’t want to give it up. And that to me was something that I learned early on, because I was able to, in my mind, stabilize his situation. But basically, there was nothing in terms of a treatment plan.

I was by my husband’s side all the way through. He had long forgotten me. But I was his copilot. I was his guardian. Everything about the disease affected me as well. I mean the demons and terror of his world defined my world. Any challenge is self-defeating. I didn’t even consider what was happening to me. I don’t think I would have done anything differently. In fact, I don’t even take the time to think about it. But I know that the intensity of care over years takes its toll. You never start out as a caregiver. You're a spouse. You’re an adult child. But it’s the years of caring that has to take its toll. So, I lived each day and put on the best face I could. You really lose who you are in the process. You forget who you are. You are so consumed with the hypervigilance, running interference, making sure they don’t get hurt, cajoling them to bathe. To bathe him every day took at least an hour and a half. To feed over time became longer and longer. But the world revolved around my husband. It’s an exhausting journey. It was very intense. Part of it is a blur. The paranoia at night is not, the lack of sleep is not. That's why they say that caregivers are six times more likely to get incipient dementia themselves

We are the invisible second patient, because we are getting sick from the hypervigilance and intensity of care. As caregivers, we forget who we are and that our health and wellbeing should matter too. But there just isn’t time for everything. Unlike other diseases, in Alzheimer's we have no survivors, and the natural advocates are the caregivers, but we’re by the bedside just trying to get through the day and too tired to protest. I had no idea how long our journey would be. What I did know is that no matter what I did to take care of my husband, the disease was going to win out, and that’s a very demoralizing feeling. And it was then that I decided that I needed to fight it outside and help level the playing field. So, I like to say that advocacy saved my life. It helps you find your voice, find a community that shares your passion in the fight for a cure. It empowers you to face the daily burden of care with a purpose to make it better for the next family, for the next generation.

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