In celebration of the tenth anniversary of the first printing of Finding the JOY in Alzheimer’s – When Tears are Dried with Laughter, we publish “What makes caregiving rewarding?” by Phyllis Major. (TCV Ed.)
As a young child, I would run to my mother to complain that once again I was a victim of some new injustice. She would hug me and wipe away my tears. The pain was gone. She always comforted me with the same advice. “Now don’t worry, darling. This is good for your character!” My character? What did that mean?
After fifty years of marriage to a wonderful man and forty-five years of mothering four sons, I thought my character had been improved just about as much as it could be. Wrong. Wrong. Wrong.
Over ten years ago, when my husband, Sam, began to exhibit significant and persistent signs of memory loss, I didn’t pay much attention. After all, I told myself, everyone is plagued with “senior moments” as they age. He too made light of his condition as he struggled valiantly to lead a normal life. But the process of his mental impairment was inexorable.
What a teacher he is! As my caregiving responsibilities increased, I came to understand and accept many lessons as blessings in disguise, blessings that were indeed “good for my character.” I had experienced them previously, but not under such trying conditions.
Learning to be more patient—I, who was born under the bright star of Impatience, began moving more slowly, in harmony with his s-l-o-w rhythms.
Letting go of my stubborn need to be right. Ultimately, as I discovered, my being right makes absolutely no difference.
Enjoying humor as a great ally, a healing solvent for stress. Lightness often saves the day.
Learning how to better nourish myself emotionally and physically. When I ignore these basic needs, I am diminished in my caregiving ability.
And, the biggest lesson of all: Refusing to cling to the past. Remembering what was then only brings me anguish now.
Most of all I came to realize that caring for Sam is life itself—that nothing I can read or study—nothing I can talk about—is as important or real as simply being present with him right here, right now.
Each day brings its own blessings in disguise. And each day, in fantasy, I share with my mother what is going on. I imagine her hugging me. This time we embrace as woman to woman. She no longer advises what is “good for my character.”
We just smile at each other.
Phyllis Major
Palm Desert, California
“What makes caregiving rewarding?” is one of the stories in Finding the JOY in Alzheimer’s – When Tears are Dried with Laughter, p. 24, © 2003, 2010 by Brenda Avadian, MA, Editor, North Star Books.
My husband has Lewy Body Dementia. Most people have never heard of it, even in the medical field. It is very hard to diagnose, so it is misdiagnosed many times. It has sometime taken years for someone to be properly diagnosed. We were lucky in that my husband did have an evaluation in 2009 by a psychotheripist, who tested him and said she thought he had frontal lobal dementia. Then ins January of 2011 I took Jim to my Neurologist who is really “up on things” and she correctly identified him with Lewy Body Dementia. Unfortunately Jim has been in a hospital bed, home bound since July, 2011. LBD has parkinson like symptoms. He can hardly move himself without physical help. His short term memory is just about completely gone. We have good days and bad days. I have learned a lot about LBD from their books and great website LBDA.org. Thankfully, I have a Certified Nursing Assistant, who helps me 3-5 hours a day, 6 days a week. My mother had alzheimer’s and Parkinson disease for 10 years and died in a nursing home at 90. That means I do have an understanding of the disease, which does help. Your article hit all the very important parts except being sure to take care of yourself, The CAREGIVER! I almost “lost it” before I realized how important that is. Fortunately, I have family and good friends who constantly remind me of giving myself “Betty time” each day and get away from the house for several hours every week! Sense of humor is really one of the most important. It really helps if you can laugh at many of the funny situation that can arise with a dementia patient. Thank you again for the great article.
Thank YOU for taking time to share, Betty. I hope you do take some “Betty time” for yourself. Caregiver cannot be reminded ENOUGH to take time off from caregiving. Thank you, again.
Brenda Avadian
My mother would have pushed MORE buttons!!! The dementia also brought out a very sweet and loving side of my mother that I had never experienced before. I became her “Mommy” and she even called me Mommy many times. I was able to experience the young and innocent little girl that she once was. When I saw what was left of her mind after the stroke, I honestly asked God why He didn’t just take her! She wouldn’t have wanted to live without her mind! I have no understanding of the mind of God and I just could not figure out WHY this happened. Over the course of the next 7 years, I discovered why. Had she died from the stroke, I would have never experienced the loving and sweet side of my mother. I would have never seen her look at me with adoring eyes. I would have never heard her tell me how much she loved me. She became the center of my life….and with that came so many blessings. In that period of time, we created memories that will last me for the rest of my earthly walk and probably beyond that. God had a plan and we were so blessed by that wisdom.
This article most definitely resonates with me. My mother’s dementia was brought on instantaneously by a cerebral vascular attack. One minute she was Mom, the next minute I got to meet ET. The Evil Twin. The invasion of the body snatchers came and took my MOM!!! She used to say things to me that would just make my blood boil. My girlfriend said something to me that I never forgot. I walked away and said to her, “boy does Mom know how to push my buttons!”. Without hesitation she said, “Well she should…she installed them.” Oh my. Truer words were never spoken! It was then that I realized I didn’t have to be right because all that did was start an argument. Part of my lesson. Learn to be creative in my answers to her. Whatever it takes to make her happy. The reward was a happy mother. They can’t possibly disagree if you are in complete agreement! It was a long road with Mom. I look back and I am so happy I chose to take care of her myself. Her quality of life was infinitely better than if she had been institutionalized. I was able to create happiness and health for her. There is nothing that could ever give me greater pleasure than knowing I was able to do that for her. It has changed my heart. The lesson was gratefully learned.
Caregiving is a LIFE-changer, Carmen. No doubt. I agree.
Naomi Feil made famous the idea of Validation. Whatever our loved ones with dementia say, we go with it and move forward.
After all, would your mother have “pushed so many of your buttons” had she not had a stroke?
Brenda