JOAN’S WEEKEND BLOG –June 7/8, 2008 – COUPLES FACING THE CHALLENGE OF LIVING WITH A MEMORY DISORDER- from the Caregiver Conference – Part I

For those of you who have attended conferences of any kind, you know that you receive a program booklet listing the different subject areas covered in the various “break-out” sessions. You can imagine my excitement when I read, “Couples Face the Challenge of Living With a Mild Memory Disorder.” I made a beeline to Room 2C, anticipating a discussion of issues that concern me, all of you, and every couple trying to cope with the changes Alzheimer’s Disease and related memory disorders bring to a relationship. I WAS NOT DISAPPOINTED.

It is important to understand that “mild” memory disorder in this case is somewhat of a misnomer. They were NOT referring to someone who simply forgets names occasionally. They were referring to the  person who, although not  in need of full time care, and is still functional, but as with many of our spouses, is a long way from being able to remember, organize, plan, or fully process language and information.

The lecture, presented by Denise Sparks, licensed clinical psychologist, and Theris Touhy , an Associate Professor of Nursing, was centered around a pilot study that involved interviewing couples to find out what problems memory loss brought to their marriage, and what type of support they needed to help them through the challenge of living with a memory disorder as a couple. Well, now you can see why I was so eager to attend. I have been searching for this type of information and support since I started this website – the lack of interest, recognition, research, information, and support for spousal issues was my impetus for starting this website.

For the study, the spouse with dementia was interviewed alone; the “well” spouse was interviewed alone; and then they were interviewed together.

The prevailing themes that arose from the “well” spouses were those we have discussed in Blogs and on the Message Boards here on this website:
                       Living with frustration
                       Living with losses:
                              Loneliness
                              Not being a “couple” anymore
                              Profound sadness
                              

                              Breaking down of the partnership-
                              Everything is on my
                              shoulders                      

           
                      Widow/widower without a husband/wife
                      Hope that things do not get worse.

The main lesson learned by the researchers from the “well” spouse themes was the desperate need for GRIEF COUNSELING. I thought that was a monumental breakthrough – the fact that counselors, psychologists, doctors, and social workers, were going to learn, through this study, to provide us with the support we need.

The prevailing themes that arose from the spouse with the memory loss were:
The struggle to preserve their “self”  – something Richard   Taylor, Ph.d talks and writes about in all of his lectures and essays.
                      The desire to make sense when they speak.

      The desire to keep doing the things that they love – bike riding , DRIVING a car  .
     
The main lessons learned by the researchers from the spouse with the memory loss were that they are aware of their losses, and are trying to maintain normalcy. They want us to know that it is important for us to take time to listen to their concerns, and assist them only when necessary.

The prevailing themes that arose from couples were:
         They want to learn to do things that HELP their situation.

Although the main lessons learned from the couples were different for each couple, they all want and need help to adjust to the changing relationship, maintain a quality relationship, and find activities that they can still enjoy together.

Yes, we all are fully aware of the study’s findings. We live them every day, but my joy and excitement was that our issues ARE FINALLY BEING RECOGNIZED, and with recognition will follow resources and services to help couples cope. Instead of support groups in which the heartbroken caregiver spouse is told to “develop a thick skin” and not let the personality changes and relationship losses bother them, because it is the “disease’s” behavior, not the “spouse’s” behavior, I would like to see support groups in which couples can discuss their deteriorating relationships with honesty and be given workable suggestions that will help spouses maintain a peaceful relationship TOGETHER, rather than separately, for as long as possible.

My heartfelt thanks to Dr. Denise Sparks and Dr. Theris A. Touhy for their insightful, exciting work.

Next: Music Therapy to enhance memory and language

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