The time has come to say goodbye. When I started this website 13 years ago, I was in the midst of Alzheimer caregiving for my beloved husband of 37 years. The day of diagnosis, we wrapped our arms around each other, and I promised him that I would always take care of him. Neither of us had any idea what that really meant.
Just nine months later, I found myself standing in the ruins of what had been a near-perfect marriage between two people who adored each other; who were partners; lovers; friends; each other’s cheerleaders. Now, the shattered pieces of that rock on which our marriage had been based, were littering the ground at my feet. The man who had taught me the art of marital compromise, who had been the wind beneath my wings for every project I attempted, whose soft touch had calmed me through any crisis, whose very presence could send scorching desire through every bone in my body, had turned into a mean, vile, unreasonable, unreachable, monster. Alzheimer’s Disease was about memory loss, wasn’t it? No one told me it involved drastic personality changes. Where could I turn for advice? Who would talk about this? No one. And so I started my own support group because as we have all come to know, spouses of Alzheimer patients deal with emotions that are completely different than those who are caring for parents, grandparents, siblings, and other relatives. We spouses needed a place where we could go for the truth. We needed a place where others understood what we were going through. We needed a place where we could talk about our issues. I knew there was a need for such a place. And so I built it. And you came. You came in such droves that I was shocked. You came from literally around the world. We had members from Maine to California; from the United States to Canada, Brazil, England, Amsterdam, and beyond.
As soon as this massive response showed me how great the need was to discuss strictly spousal issues, I tried to provide a forum where previously taboo subjects could be discussed in a respectful, dignified, manner. We talked about the sorrow of losing intimacy; the lack of desire for a spouse who no longer exhibited any of the qualities we had fallen love with; the dilemma of sharing intimacy with a spouse who was childlike; the desire for companionship with someone other than our spouse, i.e., a functioning adult, as opposed to the difficult child our spouses had become.
If there was a topic related to marriage and Alzheimer’s Disease that we did not discuss, I am not aware of it. We tackled every subject with what I hope was dignity and respect.
Initially, it was a difficult decision for me to go public with my personal problems and emotions, but in the end, I feel that sacrificing my privacy was worth the good that was accomplished. I am very proud to have my name forever associated with this website.
What has astounded me more than anything is the connections and friendships among strangers that have been formed because of this website. People who never would have known each other existed, met in person in many instances, and became friends, traveled together, helped each other emotionally and even financially.
So many of you have written to tell me how much my website helped you through the most challenging time in your lives. But let me say, unequivocally, that you have given me so much more. Your support of my endeavor carried me through my Alzheimer Journey. I could not have made it without your advice, validation of my efforts, and emotional, as well as financial support.
My plan for the website after Sid’s Alzheimer journey was complete was to continue it for those still caring for their spouses, with an additional section for Alzheimer widows/widowers. The idea was to write about my new journey as a widow and provide a forum where Alzheimer widows/widowers could discuss their issues, and support one another.
However, I had not anticipated how emotionally paralyzed Sid’s death would leave me. I thought 12 years of caregiving had prepared me for it. I was wrong. Very, very wrong. When he died, all the years of Alzheimer marital destruction fell away, and I remembered only the wonderful, kind, sensual, loving, supportive partner I had married.
We had always been a close couple, taking joy in simply being together. We could not imagine life without each other. And now I was alone. The love of my life, the man I had fallen in love with at first sight, when I was only 10 years old, was gone. I was unable to function. Emotionally, I could not handle reading or writing for the website. I had to distance myself from the Alzheimer World or I was going to break down completely.
Then the unanticipated happened. As my emotional health was at its lowest point, my physical health began to deteriorate. Three years of back, sciatic, and nerve pain so severe that I was barely able to stand and walk, culminated in my collapse last August with blood clots in my lungs. According to the ER doctor who saved my life, the lung doctor, the heart doctor, and my primary doctor, I am supposed to be dead. They all said that they very rarely see survivors from the severity of the blood clots that I had.
I spent 5 months in intense physical therapy and monitoring by heart and lung specialists. As I was finally recovering, I decided that since I had survived, it was time to start living again. I made the decision to attend diverse seminars, join groups of interest to me, and take short courses. Just as my calendar was filling up………………….. I fell in my house. Because of the blood clots, I was on a blood thinner. Falls and blood thinners do not do well together. In my case, they caused an explosion of blood vessels, resulting in a massive hematoma on my knee. Excruciating pain, four and a half months, two hospital stays, and a stubborn cellulitis infection later, I am FINALLY recovering again. With this recovery, comes the desire to tie up loose ends. I decided I had better do it now before another medical disaster blindsides me.
That brings me to the closing of the website. I have not devoted any time to it since Sid’s death 5 years ago. No, I cannot believe that it is 5 years, but that is a topic for a different blog. I applaud those of you who have remained in the Alzheimer World to fight for funding, support, and services. I cannot do it. For my own emotional health, I need to live in the ordinary, non-Alzheimer World. I feel that I gave everything I had to the Alzheimer cause during the 8 years I kept the website active. It is time for me to move on.
To those of you who have suggested that I turn it over to someone else, I respectfully decline, and these are my reasons. I built this site from scratch. I did all of the research, planning, designing, writing, and administering. Yes, I am a control freak, but I believe my attention to detail and single minded commitment is what made it so successful. As I said in the beginning, I am very proud of what I accomplished, and I would like to leave it as my legacy.
Many of you have carried over the information and advice to Facebook, and I encourage you to continue to do so. I hope you will reference me and the original thealzheimerspouse.com to new people who join your Facebook group.
The website will close down permanently on or about June 15, 2020. The exact date depends on technical issues. I will try to keep the Message Boards available as “Read Only”, as there is so much valuable advice to be garnered by anyone who wishes to access it.
I honestly do not know how to adequately thank all of you for your support and precious friendship during the last 13 years. We will continue to be able to stay in touch through my regular Facebook page.
AND………………..now the NEW NEWS:
Five years of health issues that incapacitated me, made it impossible for me to work, even from home. I have not been healthy or strong enough, not to mention, in and out of the hospital four times, this last year alone.
As you can imagine, this has decimated my finances, so now that I am stronger, it is time to return to work. I have always wanted to write a weekly newspaper column ruminating about everyday events. Well, this is the 21st century………… Blogs, video blogs, and podcasts have replaced the old fashioned newspaper column, so I will be going along with the times. When my new Lifestyle blog is launched, I will announce it on my Facebook page. I hope you will support my new endeavor as enthusiastically as you have done for all of my projects. Please spread the word that Joan is coming back………… with a new blog that will need your visits and support.
In case you haven’t been to my Facebook page, and haven’t seen my latest picture, let me say that there has been a bit of a weight loss. 120+ lbs. to be exact. This calls for a Video Blog about life after weight loss……………..emotions, reactions, changes, food…….the list is endless.
So yes, if I am physically, financially, and mentally able, there will be TWO new ventures for you to follow.
**Remember……… The address(s) of the new blog (s) will be announced on my Facebook Page.
Then there is the book………… I think I am finally emotionally able to write that promised book, based upon my Alzheimer Journey Blogs. Be on the lookout for it………. maybe by the end of 2021.
Do I think that I will be able to accomplish all of these ventures, especially without the support of my #1 Cheerleader, Sid? I don’t know, but if I hadn’t taken that leap of faith into unchartered waters 13 years ago, thealzheimerspouse.com never would have existed.
Until then, thank you from the bottom of my heart for all that you have done for me.
My contact information is:
Email: joang48@aol.com
AND:
Joan Gershman
PO Box 881363
Port St. Lucie, FL 34988
AND:
Facebook – Joan Stairman Gershman
