A CAREGIVER CONFRONTS HIS FEARS
As a long time admirer of Eunice Kennedy Shriver, I made a special effort to watch her televised funeral from Hyannis, Massachusetts in August of this year. While I watched the members of this remarkable family eulogize this wonderful woman, known mostly as the founder of the Special Olympics, among other things, I was drawn to another member of the family. It was her husband of many years, Sargent Shriver.
I have also been a long term admirer of Sargent Shriver. His many accomplishments include being Ambassador to France and the first and most effective leader of the Peace Corps. I have always appreciated his soft spoken sincerity and his quiet goodness. I remember him over the years as a handsome and gentle man. He has lived his life as a “gentleman” in every sense of that word.
But as I looked at the funeral that day, the first thing I noticed was that Sargent Shriver is no longer a gentle man. I have known for some time that he has Alzheimer’s disease but I had not seen him in that condition. Gone was that gently smile and quiet dignity. It was now replaced with a distant and harsh look of desperation along with the constant look of confusion. He was obviously not to be trusted alone by the family. Someone had to be at his side at all times to guide him.
There is one scene from that day I cannot get out of my mind. It takes place from outside the church at the end of the funeral. As Eunice Kennedy Shriver’s body is placed in the hearse, something happens as it is getting ready to pull away for the cemetery. Sargent Shriver is being led out of the church by his son-in-law, Governor Arnold Schwarzenegger of California. In his abandon and forgoing all decorum, Sargent Shriver attempts to break loose from Schwarzenegger’s grip and chase after the hearse. It is clear why the Governor had been elected by the family to stay by the side of Mr. Shriver. He needed a former weight lifter to contain him and his unpredictable behavior. Unlike his wife, Sargent Shriver is alive, but the quiet, gentle competent man is gone, like her – forever.
I walked away from the television that day deeply saddened. Even though the Kennedy family has plenty of resources to take care of a family patriarch, I know what they are going through.
I know because for the past seven months I have become the primary care giver of my 91 year old mother who has come to live with me because she has Alzheimer’s. I can identify with a frustrated Arnold Schwarzenegger trying to run after and control a confused and demented family member. Unfortunately, more and more caregivers in this country can identify too.
This past year it became clear that my mother could no longer live alone. Confused and unaware of so much going on around her, we were fortunate to be able to sell her house and the family farm in North Carolina. She absolutely refused to go into a nursing home under any circumstances. It became abundantly clear that we would have to tie her up kicking and screaming to make that happen, and neither my older brother nor I could stomach the thought of that. Besides, it is very debatable as to how long we could keep her in any facility at a minimum cost of $6,000 per month. It is even more shocking when you remember that this is at least $72,000 a year.
We decided to have her come to live with me. After working with a local contractor, we built a new addition onto my home in South Carolina. It contains about 380 square feet with a modern handicapped bath, large closet, small kitchen (without a stove!) and an outside deck for watching the birds and growing flowers. It is a beautiful room with its own heating and air conditioning system, new furniture and the best equipment in the house. After seven months, the room (verses being in a nursing home) has paid for itself. My mother seems happy most of the time. I am doing what a good son does – taking care of his mother. We have some good times and I even took her across country this summer in my RV to see her grandchildren and great-grandchildren. She loved it and had a good time – and she immediately forgot that she had been on the trip at all. I have wondered at times if I am a good son or simply a stupid one for undertaking that 6,800 mile adventure.
I do not know what the future will bring but I am not looking forward to it. As Alzheimer’s goes, she is in the beginning or early stages of it. Some say she probably is just senile or has dementia. Whatever you call it, I, as the caregiver, still have the same problem. She does not wander away from the house as Alzheimer patients often do – yet. But we have other problems to deal with on a daily basis.
Some days she wants to go “home”, the house we just sold where she lived for the past 60 years and her sons grew up. My reminder to her that the house is no longer there brings pain but silence until ten minutes later when she wants to go “home” again. She used to be the neatest and cleanest person I knew. The grandchildren would always note how “neat” and well dressed grandmother was. Now I have to almost force her to bathe. Her house used to be the cleanest place on earth. Now she leaves clothes, underwear, socks, shoes and paper all over the floor. I still find underwear in strange places where she hides it for some unknown reason. She can still remember the ingredients in her favorite recipes, but cannot remember if she added salt or sugar even ten seconds after she put them in the mix. She can remember the time of day all her sons were born sixty and seventy years ago but she cannot remember if she has talked to them five minutes after speaking to them on the phone. At times when we are talking during dinner, I think for a moment that she is completely sharp minded and perhaps not as bad as I think, only to discover that I am having a conversation in 2009 and she is stuck in 1976 or some other year when long dead friends are – in her mind – still alive. My mother, who taught me to say “thank you” for everything never says thanks for all the baking, cleaning, washing and caring I do each day. I am selfish to think that she would. She is simply incapable of it. I am not angry about that. I am sad that she is no longer, and will never again be, the person she once was to me or anyone else. The mom I once knew is no longer here but I still have daily care for the shell of a person that is left behind with this terrible disease.
Caring for an Alzheimer’s patient is teaching me a lot about patience and even more about how I view life. For example, I used to live in fear of dying from cancer. I do not feel that way any more. Having lost my father 35 years ago to a malignant brain tumor and my wife three years ago to the horrible disease of ovarian cancer I know the devastation of what that does to the human body. But as horrible as the ravages of cancer are, both my father and my wife died with dignity and with full mental awareness until the end. As awful as cancer can be, I have come to see it as a better alternative than my fear of dying with Alzheimer’s. No one wants to be viewed as “crazy” by their grandchildren, friends and family. At least I do not.
This summer, while my brother and sister-in-law took my mom for two weeks to their home in Georgia, I escaped to Maine to go sailing with a friend. While there I was saddened to hear of the sudden death of Philip Bolger, a well known boat designer. Mr. Bolger has always been one of my heroes who designed a staggering number of boats for the amateur boat builder like me. Among the boating community he has been a guru and genius in small boat innovation.
I did not know how he died until I got the October issue of Woodenboat Magazine and read the long and detailed accomplishments of his life. What caught my attention was this opening paragraph of his obituary:
Philip Cunningham Bolger, 81, May 24, 2009, Gloucester, Massachusetts.
Something of a philosopher, and an inventive, innovative, and prolific boat designer, Phil Bolger left this life as he had lived it – on his own terms and in defiance of convention. Fearing the onset of senile dementia with advancing age, something he had witnessed among earlier generations of his own family, he took his life by gunshot.
Volumes have been written about the ethical and theological morality of Mr. Bolger’s choice for ending his life. Volumes will continue to be written. We need to have that discussion and it should go beyond politically stupid phrases such as “death panels” in the present health care debate. Phil Bolger made a choice about his life – and death. Most Alzheimer’s patients are far beyond making rational – or irrational – decisions of any kind.
But what struck me about the news of Phil Bolger’s death was not how he chose to end his life. What struck me is that his fears are the same as my fears. After being a care giver for an Alzheimer’s patient and seeing other friends descend into that darkness, I, like Mr. Bolger, am not so much afraid of death as I am afraid of losing all control of my life and being considered crazy by my children, grandchildren and friends. I can think of no death worse than that.
When my mother talks of going home to paint her former quarter of a mile pasture fence or mow the two acre lawn or can and preserve another hundred quarts of beans, all of which she has done in the past, we don’t know what to do but laugh. We laugh, but it is a nervous laugh. She has indeed lost control of her thoughts and she is, for the moment, sounding mentally defective again. We laugh, but it is out of fear, not scorn. We laugh because deep down we are covering the fear that this could one day happen to us, her family and friends.
At the present time, I think I have the ability to take care of my mother until she is no longer here. I think, but I am not completely sure. At least that is how I feel today. Who knows how I will feel tomorrow. What I do know and feel for my Mother and myself is the fear of leaving this world without a clear mind and in some control of dignity and self determination. Is wanting that assurance of control asking too much?