Caregiving 101: Take care of yourself in Daydreaming on the Porch

…When caregivers continually devote most of their time, energy, to a person with dementia, it’s easy to lose perspective. Because thy are so intently focused on the needs of their lives one, caregivers may de devalue or even ignore their own physical, emotional and spiritual needs in order to stay focused on the person with dementia....

Deborah Barr
“Grace for the Unexpected Journey”

When I look back on my caregiving years, I appreciate more than ever the wisdom of this statement. I can’t emphasize enough how essential it is for caregivers to step away for a couple of hours and get out of the house to recoup on a daily basis. However you find a way, briefly leave the nonstop demands of caregiving, especially when your loved one needs someone with her 24/7.

My mother had dementia and diabetes when she passed away this past January. She was 96. I still live in her beautiful, house filled with the antiques she collected and cherished over the decades. Her presence looms large in this house. It’s so quiet and still now, and I continue to try to cope with my grief and loss. The solitude is in stark contrast to the daily comings and goings of five home-aides/caregivers who were with us for years, and who became like family.

My mother was indeed very fortunate that she had long-term care insurance, which enabled us afford the extra help that for a number of years enabled me to continue working full-time until I retired three years ago. Since retiring, and during Mom’s final declining years, it was absolutely essential that I get breaks, and because of the part-time caregivers, I could take my camera and head off to local gardens and parks and immerse myself in the tranquility that Nature afforded me, and which has sustained me all my life.

Even then however, I could not totally escape my responsibilities and worrying about Mom, as much as I trusted our caregivers. In the back of my mind I was wondering if she was okay, if she sleeping, or, was she agitated and berating any of the helpers? Until the last year she still had significant awareness of the fact that I was gone, and would often ask over and over where I was. The aides would occasionally have to call me to talk to her to calm her down. Most of the time I could reassure her. Sometimes I had to hurry home. Generally, however, I was able to be away for 2-3 hours at at times, always in the afternoon.

Leaving the quiet parks, I re-entered another state of mind, that of total focus and preoccupation with taking care of someone I loved so deeply because she was my mother. My thoughts on the drive back gradually shifted from looking after my needs briefly, to thoughts of what the coming hours and days would bring when I had to be on total alert for what could go wrong. By the same token, I also missed being away from her and that beautiful all-encompassing smile and a mother’s love which inspired even greater devotion and concern on my part.

The next morning would arrive and with it the elaborate rituals of getting her up and dressed, vitals taken and insulin given, cleaning up and getting her dressed and in her transport chair so she could rest on the sofa in her large, light-filled den. My caregiver/ helper would be there by then, and together we would try to make Mom’s day as pleasant as we could.

My plea for those now in a role similar to mine — caring for a loved one at home — is emphatically to get away for awhile, even if it’s just for an hour, or only a 20-minute walk in the neighborhood, or something as simple and basic as a trip to the grocery store or a favorite shopping destination. Hopefully you will have someone who can relieve you for short periods of time such as a family member, or a close family friend. If you find yourself doing it all alone, day after day with no or minimal help, I fear for your health, physically, mentally and emotionally. Caregiving full time requires that you eat well, exercise (for me it was always brisk walking), take Nature walks or go someplace you enjoy and which can distract you, and finally, if you can, get enough sleep and rest. Fortunately,, I’ve never required a normal amount of sleep and stayed up way into the night even before I was caregiving. This helped tremendously when I often had to be up with Mom in the middle of the night.

Try not to feel you are alone. Take breaks. Seeing other people and briefly interacting with them always changed my perspective. I could see that people were carrying on with life normally, even when the walls of my life seemed to be closing in on me. Find a way to prevent this.

My mother’s deep religious faith helped her surmount the ravages of dementia. She was a deep believer in prayer and she inspired me with her devotion. At times it was nothing short of miraculous, considering how much of her mind and memory dementia had robbed her of. This eased my burden considerably. It gave both of us hope when on many occasions I might have felt only despair.

Caring for someone you love, and especially if it’s a parent who gave you the gift life itself, became for me a sacred duty, whether I realized it or not.. Taking even a small amount of time every day to regroup, think, write, or work on my photography, helped me keep my sanity, because at times I I didn’t know if I could bear another day or night when things were going very badly, and there were, sadly, quite a few excruciatingly difficult nights. .

Caregiving doesn’t have to involve a “36-hour day.” It shouldn’t get to that point. The best way to take care of your loved one is to also take care of yourself, whatever it takes. Draw upon all your inner resources, but don’t try to do it alone.

Last updated October 11, 2020