My boss told me it would be like this. He quoted a friend of his who said, “You lose your parent twice with Alzheimer’s.” There was little else that he could say to comfort me when I initially told him about my mom, and he was right. I lost her twice.
My husband and I went to visit Mom not long after she was diagnosed with Alzheimer’s. At that point none of us knew very much about the disease and we were not prepared for the stark difference in her memory and behavior since having seen her just a few months before. As we drove up into her driveway, she stepped out of the garage door leading into the house and looked puzzled as we got out of the car. There was no look of welcome… no smile… just a blank stare. She hugged us both without looking us in the face and immediately began giving us a tour of her little cottage as if we had never been there many times before.
Bill and I looked at each other over her shoulder and politely commented on how lovely her home was. She was the perfect hostess and invited us to sit down in the living room to visit after offering us iced tea. It soon became obvious that Mom had no idea who we were. My heart sank as I answered all of her getting-to-know-you type of questions about how long we had been married and when we would have children. Even when we said goodbye a few days later, I am still not certain that she knew I was her daughter. That was the first of many goodbyes, and I cried all the way back to the airport.
Every phone conversation or visit after that was a form of seeing Mom pass. Every odd question or strange comment was a kind of death to who she had been and to our relationship as mother and daughter. I was slowly losing my mother - ever so slowly – and just as slowly, I realized that I was in mourning.
I had experienced grief before at the passing of my grandmothers and my beloved father, but this was different. With their passings, acceptance came much more quickly and I was able to move on to a place of healing. With Mom, each passing – each death of some part of her – was so painful and was revisited many times as she continually forgot people, forgot how to live, and even forgot her own history. Her body was still with us while her mind was slowly being erased. Grief became a part of my daily journey.
Thanks to the encouragement and support of many, I gave myself permission to mourn. Like the water rushing up on the shore, grief came in waves, sometimes completely washing over me and other times just barely touching my toes. I tried not to resist any of the feelings, for like trying to stop the waves on the sand, my efforts would have been futile. Instead, I followed the advice of a pastor who told me that if I must have an overwhelming feeling of emotion, to give it all I had.
If you are reading this blog, chances are you have begun your own grief journey and have moved beyond the initial feelings of denial. Denial is often just a sharp and numbing feeling of shock. While I moved rather quickly out of the denial stage, other members of my family did not move beyond this stage until close to Mom’s passing. They only let in bits of information about the disease as they were each able to handle it – nature’s way of preventing us from emotional overload. As we each accepted the reality of the changes in Mom, the denial began to fade away and we were finally released enough to begin coping with the sobering facts of Alzheimer’s.
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"A Bandaid for the Caregiver" is dedicated to all those families who journey with memory loss in their lives and the sharing of hope and joy and new possibilities. In each difficul moment there lies an opportunity for love.
Journey with courage,
Elaine
Author: "Conversations with Nora: a Family's Journal with Alzheimer's"
STAYING ACTIVE…
THE BANDAID BOX…
Grief is born out of love. One must care about another with such passion that the loss of them from our sight causes us pain. Mourn with a depth that only those who are loved can understand and when the grieving is over, the love we shared continues on and cannot die.
"Blessed are those who mourn, for they shall be comforted.” Matthew 5:4
“There is sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.” Washington Irving (1783 - 1859)
The physical body, the mind, and the heart are so intertwined that the health of one often depends on the other two. Keeping the mind and body active has a way of mending the grieving heart. Usually this section of my blog is reserved for activities for you and your parent, but today I offer ideas for keeping a healthy balance in your life as you walk the path of grief.
Whenever possible, spend time outdoors – whether it is to take a brisk walk around the neighborhood or putter in the yard – time spent outside clears the head and refreshes the soul. If it is bad weather, head for the mall!
Make time to play… with your dog, with your grandchild, with a friend. Get out a board game, go for a swim, or shoot some hoops. Play hopscotch, Gin Rummy, or sandlot baseball – but, PLAY hard!
Reserve time to enjoy a favorite hobby. If you don’t have one, begin searching online for interesting ways to engage your mind or body. Get out your watercolor paints, clean off the fishing tackle, or search for new coins for your collection. Reward your mind with activities which excite you.
TREAT YOURSELF…
When I am especially tired, I head for the nail salon. Treating myself to a manicure and pedicure makes me feel pampered and special. Choose a salon that has a no cell phone policy, plays relaxing music, and has a calming influence on your spirit.
One of my friends “treats” himself by browsing through an office supply store! He derives great satisfaction in discovering neat ways to clip things together and new ideas for filing and organizing stuff. Visit a garden shop, hardware store, fabric store, gift boutique – there are a myriad of ways to bring a small piece of orderliness back into your life.
Reminder:
Be gentle with yourself. Allow yourself the room and time to heal.
SAFETY TIPS…
It is awfully tempting to bury ourselves in unhealthy habits when our hearts are hurting or angry. I typically turn to comfort food, and only lately have begun to realize how futile that is. The wonderful sensation of having eaten a pint of chocolate chip ice cream usually lasts until the next commercial break on the television screen – the satisfying taste of melted cheese over shrimp nachos, only slightly longer. By indulging in unhealthy eating, I gained nothing but pounds and still had a heavy heart.
When abused, alcohol, tobacco, drugs, and comfort food all fall into the category of habits detrimental to healing and are often signs of depression and anxiety. When faced with the loss of a loved one to Alzheimer’s, it is difficult to stay alert to unhealthy habits in oneself. Our parent may be slipping away from us, but we do not have to follow after them.
ABOUT ALZHEIMER’S…
As Alzheimer’s progresses through its seven stages, family caregivers find themselves progressing through the five stages of grief. While your parent moves through a predictable pattern of symptoms, you may find yourself wandering from denial to bargaining, back to anger, before – if ever – reaching a peaceful place of acceptance.
There is no set pattern for mourning the loss of your parent’s recognition. Some of us receive that realization with depression, others with anger, and some bargain with God to remove this horrible disease from their family.
Some symptoms shown by Mom made me angry and others made be terribly depressed. I often found a whole group of emotions swirling around at once while Mom just kept her steady oblivious pace on into the sixth and seventh stages. In some ways, her progression through the haze of the disease was more graceful than my journey of grief.
However, the single most pervasive emotion undergirding both of our journeys, was the enduring feeling of love we had for one another. Mom could not express it, but in the end I knew without a doubt that the spark of love and affection was still there, hidden away for safekeeping somewhere in the fog. My mourning slowly subsided with that realization, and I rejoice now that she has been released from her prison and is whole again.
God is, indeed, merciful.
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