JOAN’S BLOG – THURSDAY/FRIDAY, FEBRUARY 21/22, 2008 – THE DIFFICULT SUBJECT OF SEEKING COMPANIONSHIP – ONE COUPLE’S STORY

Before I begin, I would like to make it clear that I make no judgments . I always believed, but do so much more now than ever before, that no one can know ANYTHING about another’s situation unless they have walked in that person’s shoes ; lived that person’s life.

But I also believe that it is time for discussion of this controversial topic of forming a romantic attachment while one’s AD spouse is still alive in body, but long ago gone away in spirit. Oh, I danced around it a bit delicately in a previous blog, but never really explored it in depth. Countless spouses of AD patients struggle with this dilemma every day, torture themselves with guilt, bear the brunt of their children’s hurt and anger, and are the target of tongue wagging everywhere. 

My Message Boards are overflowing with tales of unbearable loneliness and despair when your partner and lover of “forever” cannot communicate with you; does not know who you are; cannot share life with you anymore. It doesn’t happen overnight, and it doesn’t last a day. It is a long, slow, deathly process that can and often does, go on for years on end.

Many would never consider even a dinner date for companionship. Others find support, conversation, and respite in sharing a movie, a lunch, a day at the mall with a friend of the opposite sex.  For some, support, sharing, and discussing common difficulties develop into romance. It is a choice each individual must make for themselves.

I would like you to meet “Tom” and “Mary”. The names have obviously been changed to protect their privacy, but if anyone would like to offer feedback to “Tom”, he has generously agreed to answer your questions through me. E-mail them to me, and I will post a blog with the questions and answers. I trust that your responses to him will be as dignified and respectful as you have been with each other on the Message Boards. Both Tom and Mary’s spouses suffered from Alzheimer’s Disease. (Tom’s wife still resides in an Assisted Living Facility, where he oversees her care. Mary’s husband has since passed away.) They provided comfort and support to each other, and eventually, their friendship blossomed into a romance. It was not a situation taken lightly by either of them. Mary still struggles with her decision.

The anger and bitterness directed at Tom by his children, prompted him to write this letter to them. We share it with you, not as an excuse, but as a look at one’s man’s struggle to live beyond Alzheimer’s Disease:

Choosing Life
Letter to my Children
July 2007

After the great day at the assisted living BBQ last Saturday with Diane, Jean, Bill and Paul joining mom and me I had a very difficult evening.  When trying to understand why I felt so bad after such a good day I determined that it was all about the strain that Alzheimer’s has put upon you, my children.  I believe that it all had to do with your different levels of understanding of what this disease has done to your mother and me.  You appear to have widely varying degrees of understanding of the fact that this disease has been and continues to be a painfully slow dying process of your mother while, at the same time, pulling me into this slow death spiral.

My wife is no longer the wife and mother she has been for most of our married life.  Although there are wonderful sparks of her old self in her persisting personality and especially in her smile she is not really there.  She can no longer have a meaningful conversation with us; understand your and my hurt, your and my problems, your and my desires, and your and my constant and everlasting love of her.  She does, however, appreciate the moments with us, our touch and our hugs - as she does the hugs and touch of the Assisted Living staff.

I am not sure how much several of you understand how close I came to being consumed by my caring for your mother, my wife.  I was also dying a little bit at a time.  I was in a death spiral.  But I was awakened - by the support I had from others in similar circumstances, from my journaling and from my knowledge that I could no longer care for her if I could not take care of myself.  Seeing a new close friend being consumed by the love and caring of his wife made me realize that I did not want to be that way.  I also recalled how Don, the husband of Ron’s son’s in-law was not only consumed from caring for his Alzheimer wife but suddenly died a short time after her death at least partly from his intense care giving role.  This also made me chose life.

When Mary came into my life in a new way last March after being one who shared experiences in our support group and as we consoled each other in our respective care giving roles and became good friends for the last several years I started to have a new reason to live.  I did not know then how much and how fast our relationship would grow as we found in each other unbelievable compatibility, wonderful sharing of both new and old experiences, honest and complete communications and yes, an ever growing love for each other. 

I know that it is hard for you to understand how I can both love and care for your mother while I now have another love.  But the fact is that I can and I do.  The romantic, yet fatalistic idea that one must die with their spouse when their loved one dies is one that is not adhered to by people that truly love each other.  Love is when you want the best for your loved one.  Honey has often stated that she would rather physically be put to death (often talking about carbon monoxide death in a car in our garage) rather than live the living death that she is now in.  Now that she is in the Assisted Living clearly not knowing the state of her condition any more, smiling much of the time; I am happy that she is in the best place that she can be given the evolution of the disease.

I will always love her and care for her.  Mary fully understands and appreciates that as she will always love her now deceased husband, John.  Honey would want me to have a new love and I know that she also knew and was very fond of Mary.  Both Honey and I were very fond of John.  

I certainly would have wanted Honey to have the joy of a new love if our situations were reversed. 

I will always love all of you no matter what your level of understanding of my situation.  I do not want you to be distressed by you seeing my love for Mary but I know you want me to be happy.  I know it is your love for your mother and the fact that you think she is in some way hurt by my actions that gives you your misgivings.

I can only hope that time will give you the ability to more fully understand and appreciate that I have been able to partition my life into the wonderful life that I had with Honey, the caring that I will continue to give to Honey and the new life that I am having and will have with Mary.  I can only hope that you can partition your feelings in a similar way by relishing in the wonderful mother that you had, realize that in her current and future state you can only connect to her in a different way and be happy for me in my new life by welcoming my new love, Mary, to whatever degree you are able to.

Love,
     Dad

I thank “Tom” and “Mary” for their courage in allowing their story to be told. This is an important issue in the Alzheimer world, and one that needs discussion and understanding.

MESSAGE BOARD TOPIC: Tom and Mary's Story

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