Caregiving’s ultimate reward in Daydreaming on the Porch

Last year, the actor Rob Lowe wrote an impassioned opinion piece in USA Today about the urgent need to assist the millions of Americans who are caregivers for loved ones, a third of whom do it alone. Having been a caregiver for his mother at home when she had Stage 4 breast cancer, Lowe knows firsthand what a mental, emotional, and physical toll caregiving takes. I can tell you from my own experience as the primary caregiver for my mother who suffered for over ten years with dementia that it is a full time and all-consuming job.

Based on my experiences also I cannot even imagine how a person can do it alone. Mom had longterm care insurance, and because of that I was able to hire five part-time caregiver/home aides. They all worked for us a minimum of three years and some were with Mom five and six years. This was absolutely the only way I was able to keep working full time and preserve my sanity during the worst outbursts by Mom of dementia-driven fear, anger and paranoia. Without help I would have had to quit my job and stay home all the time, hardly ever getting out except for groceries, prescriptions, and other necessities. Since I had help most of the time except overnight, I was able to visit my favorite gardens and parks, take long, meditative walks and have some semblance of a normal life, as I struggled daily to retain my balance, patience and composure. And love for my mother, and her love for me, bound us together, even when she started to forget who I was. It was there to enable her to stay in her own home, which she dearly loved. I was able to move in and take care of her as she gradually lost the ability to do anything for herself.

Lowe wrote this in his article, “When you’re caring for a loved one, there’s nothing you won’t do (or sacrifice) to give them as much comfort and peace of mind as you can possibly provide. Often, that means you’ll skip your social obligations, wreck your diet, suffer sleep deprivation, and even risk your career, all to help a loved one through the most difficult time of their life…”

It’s so true. I did everything I possibly could to make her happy and comfortable. I researched. I learned by trial and error, and I benefited from the many years of experience of our home sides and caregivers,. Finally, I was helped enormously by the Hospice nurses who assisted us in the final months and days.

Lowe also had this important point to make. “I can assure you: The person you’re caring for needs you to be at your best. If you don’t take care of yourself, you won’t have the energy or the means to provide the reliable care that your loved ones need…”. .

This was absolutely crucial to my role as a caregiver. I made sure I got out for walks, I pursued my passion for photography, I wrote when I could, and I ate properly. Sleep has never been an issue. I’ve never needed more than five or six hours a night, and it could be broken up. I could be up all night with Mom if I had to and was never tired the next morning. I functioned fine at work. This was a real blessing. I tried to take care of myself as best I could. Prior to caregiving I also had lived on my own and was very independent, as far as providing for myself. This gave me a lifetime’s worth of skills for coping with stress, loneliness and anxiety. And full-time caregiving is one of the most stressful tasks you will ever be confronted with.

Like Lowe, I can say that when my caregiving experience ended, I felt confident that Mom had always known someone was there for her and loved her. And she was never alone in those gradually declining last 10 years of her life. To have achieved that for Mom, I am very grateful for my own strength and stamina, as well as for the emotional and psychological help from my brother and sister.

How can anyone go it alone? My heart goes out to those who try, but they shouldn’t have to. That has to change.