JOAN’S BLOG – THURSDAY, OCTOBER 9, 2008- ALZHEIMER’S DISEASE AND HOPE

In yesterday’s blog, I spoke about being frightened for the future because Sid was dropped from the drug trial. Although I knew that he had placed a lot of hope for improvement in the trial, I did not think that I did – until he was taken out of it. Many of you responded that my fear was due to loss of hope, and that one of the most devastating aspects of Alzheimer’s Disease is that it removes all hope for improvement and a future together.

As you can imagine, I have been doing a lot of thinking about this. Isn’t life all about hope for a better future? Depending on our ages, we hope for a fulfilling, lucrative career; a soul mate with whom to travel through life; healthy children; good friends; decent health in our elder years, and a financially secure retirement with our life partners.

Life is never smooth – we all encounter bumps, bruises, and disappointments along the way, some more than others. Even when life threatening diseases strike us or our loved ones, there is usually hope for a treatment, remission, or a cure. When there is not, there is death, but unlike Alzheimer’s Disease, it is a one time death. I am not, and never would suggest that the death of a loved one from a disease other than AD is easy, or that the mourning and grieving simply stops. We know that is not the case. But as we are all aware, Alzheimer’s Disease is a series of deaths, a disease that robs the essence of our spouses, one piece at a time and forces us to mourn and grieve over and over again .

So where is the hope when living with Alzheimer’s Disease? There is no cure; the treatments slow down the progression for a time, but do not reverse the disease; the outcome is death; and the in between is Hell on earth for both AD afflicted and well spouse.

As some of you alluded to on the message boards yesterday, it is my nature to try to find the positive in any situation, and try to expend my energies in that direction, rather than the negative. My hopes for the future have obviously been altered from what they were 5 years ago, but I still have hope:

That another drug trial will help Sid.
That the drugs he is on will keep him stable for at least another year.
That we can enjoy together whatever activities in which he is able to participate.
That I have the patience and ability to handle the next stage.
               
It is not what I expected to hope for at this stage of my life, but it is better than focusing on despair.

MESSAGE BOARD TOPIC: Alzheimer’s Disease and Hope

©Copyright 2008 Joan Gershman
       
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