In the six years since I quit work to care for my mother who has dementia, I've learned lots of things—including some I'd rather not know.
Letting go has been my hardest struggle. As Mom’s disorder has progressed, many things have changed. I don’t like change. There are always, as the saying goes, “claw marks” on everything I release. So I get to practice on an ever-changing set of circumstances.
So far, I have released thinking my mother could operate a computer, remember to take her medications, or drive safely without getting lost. At one time, she could handle basics like cooking, dressing, and showering, and I assumed that would continue to be true. I once trusted that she could understand choices or hold a rational conversation. Walking together was something we had done for so long; the possibility that we couldn’t do it anymore dawned on me slowly. It seemed obvious to me that she would remember her groundbreaking professional career. I assumed she would always understand a joke, sing with me, play simple games, and create art. In the most recent stages of the disease, I have confidently, and erroneously, based decisions on believing she could remember to use her walker or live alone with help. I have had to release all this—and more. But first I had to change my thoughts.
I would be “thinking” everything was as it used to be. Then something would happen, and I would be forced to face this new reality. Almost all the changes were emotionally wrenching. For instance, it wasn’t until Mom’s doctor told her she could no longer drive that I admitted how diminished her faculties and reasoning had become. I had been denying the signs of her confusion, not wanting to see, blindly assuming she was as clear and able to function as she had been in the past. Unwillingly, I was forced to change my thinking about her level of ability in this and all other situations we confronted. I also had to deal with the sorrow in my own heart at the loss of independence she rebelled against and grieve the increased isolation and fear she faced.
I wanted things to stay as they were—to laugh with my mother, walk with my mother, entrust the family finances to her without hesitation. I clung to these things. I wanted to hang on to the mother who raised me: the hiker, the professional civil engineer, the lady who taught me about faith and laughter, the painter, the flute player, the skier, the financial whiz, the dog lover. If I had my way, Mom would be condemned to a life that never changed, that couldn’t expand. She would never be free to make her transition, because I would need her, but the Universe knew better. Necessity forced me to let go as her disease marched unstoppably onward. When I lost each of these parts of her to dementia, I asked, “Why?”
A wise friend told me, “It’s like letting go of the side of the pool when you are learning to swim. Some people do it all at once, but others do it slowly, a finger at a time.”
Being There in the Best Way
This explanation helped, but who needed to let go? Her? Me? Or, most likely, both of us? I cannot see inside her mind. Is she relieved to let go? Is she fighting against the loss of her faculties? I don’t know. I do know, however, that I need to release old feelings and wishful thinking. Letting go of these thoughts and emotions has been tremendously difficult.
I did welcome one change. The decision to move Mom to a skilled nursing facility came easily. Intuitively, one would think this would be the most difficult choice of all. It wasn’t because I probably made the decision for the right reason.
After Mom’s stay in the rehabilitation center following a fall, I had planned on caring for her at home. She didn’t remember her house. She wanted to go home to her “daddy.” On the last day of rehab I was pushing her wheelchair around the facility’s walking path in the sun and feeling a peaceful, calm union with her. I realized this would be the last time we would share this feeling of well-being and harmony. If I returned to being her full-time caregiver, I would begin handling the constant demands of her daily care. I would be too busy feeding, changing, and getting up at night with her for either of us to be at peace, or to truly enjoy each other. The grumpiness brought on by lack of sleep would return. I wouldn’t have time to relax with her, to laugh or savor being together. I’d just feel responsibility and dread. That wasn’t, and isn’t, right. She needs love. Our family is small. I have no siblings, and my dad has transitioned. Mom’s mental health is in my hands. Others can provide help with her physical needs. My job is to give her the best quality of life possible, to be there for her.
After considering the possibility and expense of private care, I made the decision for us both to put her in a skilled nursing facility in a quest for peace. Instead of all the mundane head-based reasons I would usually have given myself, my heart instantly knew that this was the right decision. Normally, I am easily confused about whether I am acting from my head or from divine guidance. So how did I know the One led me? There was a feeling of calm and serenity, of relief, that came with the decision.
Release, Rinse, Repeat
I can foresee many other things to release. For now, we enjoy going outside together on my daily visits—Mom in the wheelchair, me pushing her. In the park next to the nursing home we soak in the sunshine, the clouds, the dogs, the kids, but the day may come when she doesn’t want to go out or is bedbound. Today, she recognizes me, my daughter, my daughter’s husband, and selected friends, although she often doesn’t remember our names. But maybe someday she won’t know us at all. Soon I will need to let go of her possessions, some of which have been with her since before I was born and are part of me too. Eventually the ultimate release will come, when she makes her transition.
Will I be able to let go of these things? I hope so. My track record is not good. However, I have made plans and have tried to prepare myself mentally and emotionally for both the final loss of my mother and the relief of knowing she is at peace and I am released from the responsibility of her care. I’ve come this far, walking through fear, trusting Presence. As the changes are increasingly fast and sad, more and more I seek Spirit in a quest for love and tranquility for me and Mom. I try to communicate my blessing and let her know that she is loved. Even when she changes form, relinquishes her worn-out brain and body, and moves on to better things, I will always love and be grateful for her.
I don’t have letting go perfected. For now, I continue to find my way, day by day, change by change. I try to remember to “listen” with all my senses and trust the still, small voice inside for guidance. I remind myself that release is necessary and can be positive. This lesson has been my greatest challenge and my greatest blessing.
Change happens, even if I resist it. Often my thoughts and emotions make release difficult.
So I kick and scream and let go unwillingly, relearning again and again that the One has my good, and my mother’s good, in mind.