JOAN’S BLOG – JANUARY 28, 2009 – TIME TO MOVE ON?

Sex, companionship, love, and the lack thereof, when living with an Alzheimer’s afflicted spouse is an extremely important, relevant issue for the “well” spouses. One look at the 108 posts on the “No sex” message board topic since it was begun 2 weeks ago, will attest to that. These topics, although always in the minds, hearts, and consciences of spouses of Alzheimer patients, have not been discussed openly until this website gave these concerns a voice. I have written many blogs on this subject (check previous blogs- # 9,10,11,32,33,44, 80,166 ), and a “search” of the message boards will bring up other discussions relevant to the topic.

Only another Alzheimer spouse has the personal emotional knowledge to understand what it is to be a widow/widower with a living spouse; to struggle with concerns such as – how far should an Alzheimer spouse go when starved for closeness, affection, and companionship? Is it a repudiation of the marriage vows to enjoy a dinner date? To enjoy adult conversation with a member of the opposite sex ? To engage in sexual relations(Click here for article - "Is it Adultry when it's Alzheimer's")? How long do you exist as a widow/widower with a living spouse before the desire to move on with your life supersedes marriage vows to a spouse who ceased “living” years before?

A year ago, I met a man whose AD wife had been in an assisted living facility for more than a year. Although he made sure she was cared for, he came to the decision to “choose life” for himself. His children were hurt and angry. He wrote a letter to them, explaining his decision. At that time, he gave me permission to print the letter. For those who have joined this site since that letter was printed, I am printing it again, as its relevance has not diminished. Please post comments under the existing “No Sex” message board topic.

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

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