The devastating effects this disease had on our marriage was a total shock. I had no idea what was going on. All I knew was that the pain of what this disease was doing to a passionate, loving, caring, partnership of a marriage was piercing and unrelenting. No one told me. I didn't know. I was blind sided. My view of the Alzheimer spouse was Nancy Reagan gazing adoringly up at her husband. No one told me that I would be living with a different person, one who bore little resemblance to the man I fell in love with and married 37 years before.

All I knew was what I had seen in the media - a helpmate writing notes for the forgetful spouse; a helpmate driving the spouse to appointments; a helpmate reminding the spouse to take their medication. The Alzheimer patient's spouse as a quiet, background helper. I didn't know, no one knows, what is really going on in that background unless you are living it. 

I found myself married to a stranger; a special needs child; a man who threw temper tantrums because his dinner was 5 minutes late; a man who threw temper tantrums because I was asleep and couldn't fix his laptop computer while I was sleeping; a man who caused scenes in stores when the clerk could not meet his demands; a man whose thinking was so irrational, he saw nothing wrong in his behavior, and it was impossible to reason with him. This was a man with whom reasonable discussion was not possible anyway, because the next day he forgot what we had discussed.

Does this sound familiar to you? Have you experienced similar problems?  How was I to handle this? How was I to relate to someone who was so different from the husband I knew? Who could I talk to about it? Where could I go for help? What could I do with the guilt and shame I felt about not liking this stranger, who bore no resemblance to my precious husband? There were few resources for this, because no one ever talked about it. I didn't even bring it up in our Alzheimer's Support Group. I suffered in silence, until one day, I had a complete emotional meltdown, throwing my arms around my husband and sobbing to him - "I miss you! I miss you! I miss you! Who are you? Where is my husband?"

The next week, after the group session in my Alzheimer's Support Group was over, I discreetly asked two women about their "marriage". They immediately took me under their wing, made a date to get together, and subsequently spent 3 1/2 hours one afternoon with me, discussing everything related to how Alzheimer's changes the marital relationship. It was a no-holds barred discussion about marriage, intimacy, and sex. They validated my feelings; let me vent; and even offered some solutions. 

Over the course of the last few months, I came to realize that the issues confronting the Alzheimer spouse are different from those faced by a daughter or son caring for a parent or grandparent. I knew there was a need for open and honest discussion about our issues. And so I have developed a place for us - a place to feel free and comfortable to discuss your conflicting and changing emotions, including the guilt, related to your spouse.  

And there is HOPE. In each stage of the disease, there are techniques that will help bring you closer together. No, the relationship will never be the same - that will have to be grieved and mourned, - see "relationship repair" to the left - but you still can work toward a better relationship than you have now. 

This is your place - fill up the message boards; e-mail me - the address is joan@thealzheimerspouse.com. Talk to each other. The first step is to admit that the breakdown of the marriage exists. Of course you knew it; you just didn't have anyone to talk to about it. Now you do. 

I will be writing a weekly (maybe daily) blog detailing my story; issues I've faced; solutions I've found; questions about problems for which I have yet to find answers. I invite you to join me in my new venture. Let's gather strength from one another.  

This web site is in the development process. In the coming weeks, I will have much more information; ideas; and suggestions, and I welcome yours.   Some of the links on the left are not yet operational. They will be soon - The e-mail and relationship repair are working right now. The message boards should be up and running late on Monday, July 16th. In the meantime, I would love to hear from you. E-mail me.

LET'S NOT FORGET HUMOR A little bit of humor in every dark situation can keep you going. As soon as my husband, Sid, was diagnosed, the neurologist immediately put him on Aricept. He gave him a sample package. I left Sid at home with the package and its accompanying literature while I went out to do some errands. When I returned, he was sitting on the couch, looking quite depressed. He told me that he had read the pamphlet, and then said, "Well, I guess it's downhill for me from here." Trying to be as gentle as possible, I said, "But you knew what Alzheimer's is, didn't you?" He looked at me in all seriousness and said, "Well, yeah, but I forgot."