I have had a busy morning. CBS reporter Barry Peterson's story of his wife Jan, and his new relationship has been a very hot topic. If you have not seen it, please log onto the home page - www.thealzheimerspouse.com - and click the link under Breaking News. I was contacted by a reporter who is writing a piece for AARP on the topic of secondary relationships in an AD marriage. Please log onto the home page and read today's blog - some of you may be in a position to be interviewed for her article.
The article will be interesting to read. I know here some are totally a 'no' while others are a definite 'yes' they would if the right person came along. the rest of us are: we won't know for sure until the time comes. I did like how Barry handled it in his story.
Barry's story is bittersweet. If you recall, he reported that Jan began showing memory problems in her 40's, was diagnosed in her 50's...and after years of him caring for her..and then brining in a caregiver.. she was placed in an assisted living facility. She is now in her early 60's. This has been a very very long road for Barry, who has spent over a decade caring for her. I watched the video over and over, and am touched to the center of my heart as he sits with her listening to her describing Mr. Happy to him...in the third person. He loved her dearly and she isn't aware that HE is the wonderful man she is describing to him. It was heartbreaking and much toooo familiar with my prescious husband. He would tell others that I was the love of his life, the sweetest person on earth, his love.... and then when asked, would say my name was (XXXXX),, his first wife.
It is easy, thinks I, to loose a bit of the point of this story. There may be some sexual overtones in the story that is scaring the beejeebies out of us. But to me it is mostly a companionship issue. I have a friend (male) who is so close that I can be very open with him, but alas he has moved away. It can be durned lonely out here. My 3rd daughter wrote this line about this piece: "This is what my short life has taught me: EVERY path is tough. Every choice has it's prices. Who is anyone to judge another person for what price they feel is the lesser and more acceptable." What will I do when this reality is mine? I don't know, but I am not building fences that I may later wish I had not built.
As to Barry's story: People who don't walk in our shoes can not understand the loneliness we feel after our loved one is gone, yet still requiring care - over years and years.
All those who do NOT walk in our shoes see only the companionship issue. NOT the loss of memory, the loss of abilities, the anger and rage issues that kept him from being able to keep her at home.....
My attitude has altered towards others since I began my journey. My heart remains the same (as long as he is alive, he is my one and only), but I have opened arms to all of you and to everyone in our situation - I say freely and without reservations - "whatever you need in your life to live and be happy, go for it!"
There is NO way I would be interviewed by anyone. I'm sorry. I would become a preacher - an angry preacher - trying to talk to the nation and world about what this disease does to the victim and the family and that is not what I want for the rest of my life. I will share everything here with all of you in the hopes that what I write helps someone to cope better, easier and not have to learn the hard way, and also know that what the spouse is doing is part of this disease.....and more, to prepare others for what could be coming. I love this family we have created here and will stay here, but I will want a life away from AD once this is over......while I have the time and energy!
Time for me to check in here, I guess, trouble maker that I am. I sent an e-mail to the reporter and volunteered to be interviewed. My relationship is and HAS been different than the one most of you share with your spouses. Don't get me wrong....I've always been the faithful wife, good mother, even though he's accused me of being less. Part of the disease process that started the wall between us, the calloused heart of mine. I have been very lonely out here on my own. I have dated, had my feelings hurt (if not my heart slightly broken....or was it my ego squashed?) and right now, just don't have any energy to give anyone any of my time and attention. BUT, when the right person comes along, YES, I WILL go for it. Some people are fine without ties to another, a mate, a partner, but that is NOT what I want for my future. For me, it is NOT right for me to continue alone, even when John is still alive. Even my parents, daughter understands this. The problem will be finding someone who will understand my "unavailability" (for marriage, that is) while my AD spouse is alive. Still, I don't know what's in store for me.....maybe that wouldn't be a real issue. I'd probably choose not to marry again, anyhow, unless someone really knocked my socks off.
My parents live in a retirement community that is kind of a step-down model.......cottage, to apartment, to smaller efficiency, to assisted living, to health care (and AD facility, too). They have several acquaintances that have spouses in the Alzheimer's unit. They maintain an active life in the community with new partners.....one gentleman and woman have even moved in together. People have needs. I couldn't judge anyone.
I became a caretaker rather than a partner to my spouse 10 years ago. The worse part has been the loneliness. I am lonely for my best friend, my partner, my advisor, my lover, the person with whom I could share everything and who always knew the right thing to say. I cried for two years and then moved to a different bedroom which has helped ease the pain of the loss. I have cultivated friendships with single women friends and this has helped a lot. But I would so love to again have male companionship in my life. But how do I find such a person? I am still married so no single websites for me! Maybe we need a dating website for Marrieds with ill spouses....
Did you read the blog to which this discussion refers? It is still on the home page - www.thealzheimerspouse.com - it is the next to the last one on the page - titled SECONDARY RELATIONSHIPS IN AN ALZHEIMER MARRIAGE – YOUR CHANCE TO BE INTERVIEWED. You may want to contact the reporter - I know she would be interested in hearing your point of view - you can remain anonymous. Her e-mail is Reportercynthia@gmail.com
Yes, she does, but I think she'd also be interested in viewpoints from those who understand the need for a relationship, even if they are not in one yet. Won't hurt to write to her and ask.
I had a call today from Cynthia Ramnarace who interviewed some of us for her story on "Secondary Relationships When A Spouse Has Alzheimer's Disease", and she said the article is done and will be available online on the AARP website beginning Monday. That's all I know -- don't know whether you have to be an AARP member to access the article on the website or whatever.