I wasn't sure I was going to share the story in this blog with you, but since I have been honest about everything since I launched this website in 2007, I decided that maybe my story will help those of you who are going through the same thing, deal with it a little better. Alzheimer's Disease is ripping through my life and taking away my husband and our life together at a faster and faster clip. I invite you to log onto the home page - www.thealzheimerspouse.com - and read the blog. How did you feel when you went through the type of loss I describe? How did you deal with it? Please post comments here.
Joan,please try to remember that even tho he doesn't remember your first date you do,hold on to those memories and remember the happiness you shared and all the good times.Someone just asked us how we met, and when I looked at Sonny,I realized he had no idea.I remembered he had told me he had been at a birthday party when we were 8 or 9 and he never forgot me,even tho he had moved away until he was a teen.I certainly didn't remember him but he was determined to meet up with me.I actually ignored him but he was persistent. Those are good memories,hold on to your good memories,they will see you thru this horrible time.
Oh, Joan, yes I know. Well into the disease, there was the time we were sitting on the couch and DH slid over to me, blocking me so tight I couldn't move. "Will you marry me?" he asked, and, of course, I said 'yes.' He was giddy with delight. "Won't the children be surprised?" he said. "Indeed, they will, indeed they will," I agreed. I dealt with it by letting him have the moment, no explaining that we were long married with grown children. By then I had achieved a certain comfort in acceptance and expectation. That did not mean I had stopped crying and grieving.
Yesterday I won a small claims case. But there was no one to come home to and talk about it. Yes, there are my children who will have the proper interest when I call to tell them, my gentleman friend who will indulge me, but no one to meet me at the back door. Still, I have a good life, I am really happy and all those sweet memories of love live comfortably with me, maybe a little twinge now & then, I don't really want to forget, we were so lucky.
I am crying with you Joan. Though Dado and I have only been together 12 years, I love him so much. Only just over 2 years since diagnosis, and he has totally forgotten how we got together during the 9/11 episode.
These are the things that tear our hearts out, Joan. Most of the time, DH doesn't even know we are married. I keep a wedding picture and license close by to show him sometimes. We were working for the same company, but he was working in RI and I was in S. FL. He flew down for a meeting and I picked him up at the airport, we went to dinner - and, as they say, the rest is history. Been together ever since - so I know what love at first sight is!
These things do flummox us in the most unnerving, upsetting way. Even as helpless as Jeff had become over the years, nothing prepared me for the moment he began mistaking me for other people...his doctor, sister, childhood nemesis. While there's nothing "good" about it, those precipitous steps down the cognitive cliff at least forced me, emotionally, to become prepared for a life of moving on.
I can understand Joan. I believe my husband knows who I am but he hasn't said my name in probably 18 months. Hasn't been able to hold a conversation in much longer. We met, got engaged 2 months later and then married...all in less that a year. We had our 34th anniversary last Sunday and he had no clue. But I do!
Oh Joan, this just breaks my heart. It's so hard to read what is happening to you, knowing that it is coming for us, and yet not be able to do anything about it. Jim is still concerned about helping and keeping holidays and for Valentine's Day he spent several hours trying unsuccessfully to write in a card. He finally wrote something very sweet on the computer, but it started ... "On this, our xx anniversary ..." He had forgotten it was Valentine's Day.
But still. At least he still knows who I am and who we are. I know I should cherish this but everyday is still so hard and so demanding that I find it very difficult to appreciate where we are in the journey. It feels so unfair ALREADY even though I know it's only going to be worse and that I should be grateful now.
This horrible, incredibly personal torture of a disease. **Insert a thousand expletives here**
I can't think of anything comforting to say except to deeply thank you for sharing your experiences so freely.
I think of Alzheimer’s as a perverse sculptor who sits on a stool in front of perfectly molded statue of a loving couple embracing. The sculptor takes his hammer and chisel and just starts chipping away at the statue. He keeps chipping and chipping, until there are still two figures, but you can no longer tell there was an embrace. And he keeps chipping, until one of the figures is barely recognizable. And he keeps chipping and chipping until the second figure is pitted and worn. And he keeps chipping…
That wicked sculptor has reached deep into the core of your statue, and is chipping away at the essence of your love story, the earliest glimmers of your romance.
Joan, I’m so sorry for you. I understand your heartache. I hope you had a good, cleansing cry. I think our bodies need that good cry now and then, or the stress will do us in for sure. I hardly ever cry, and when I do it’s a fairly pathetic showing – usually a sniffle at best. But last week I had a full throttle, bawling my eyes out, hyper-ventilating cry. I’d never experienced anything like that before. I was mourning my lover, my confidant, my partner in levity, my problem-solver extraordinaire, my confident, capable and brilliant husband. He is gone, though he is sitting right next to me.
This disease robs us little by little of all that we share with our spouse. It starts with the realization that our hopes and dreams of the future are shattered . Then everyday, we are faced with reminders that we are losing the essence of the person we love .
My DH always gave me beautiful cards with special messages he wrote for special occasions and sometimes just because.. Recently, I Was spending a night away and his Dd was visiting with him. He put an envelope in my suitcase and told me to read it before I went to bed.
So , I took it out that night. What I saw broke my heart and produced a flood of tears . On the envelope was the word LOVE which he had struggled to write since he can no longer spell my name. Inside , shakily written was a simple I LO VE and a heart. It was so simple and sweet but sooo very sad. Something like my first graders might have done.
You ask how did I dealt with it. I called a dear friend for comfort and cried myself to sleep. The next day I put it in my suitcase to take home and save forever. Because , who knows what will be next. Oh, I thanked him and told him it was beautiful . Because it was..
Thank you Joan for letting us know you were not a tramp. I think if we believed our parents many of us would fit that description.
Yesterday I was talking to a fellow co-worker who shared some of the lengthy conversation she had with hb. He was telling her how we met which was mostly true, but told her we sold our house by the airport and moved into the motorhome. We sold the house by the airport in 1979 - bought the motorhome in 2003. I find out from other what he is loosing.
Joan hold onto those memories...smile and remember how lovely it was back then. I'm sure my DH doesn't remember how we met. It was through a photo that mtual friends of my parents had of me....flicking through their photos, DH came across mine and asked who I was and if they could intorduce us. They came with a photo of him, I don't know what it was, he was so handsome, cheeky, it was like magic, an instant magical feeling I can't describe....yes, I wanted to meet him. 6 months later we were married. Next time I see him, I'll ask if he remembers how we meet...
Thank you everyone for your support and comments. It's been a rough weekend. I have been crying every time I think of Sid losing one of our most important memories. I don't want him to see me cry, because it upsets him that his memory losses upset me. The one thing that did help was talking to my cousin tonight. As I said in the blog, he and Sid have been best friends forever. Since they were 6 years old. Anyway, he (my cousin) and his wife, who became like a sister to me after she married A., are the two people in the world who were there that first date night and experienced the story with us. When we started to talk, I started to sob. Through the tears, I told him about Sid not remembering. He was empathetic, but I could tell by his voice, that he, too, was quite shaken. We talked a lot about everything, and I felt a little better after the phone call. At least I stopped crying.
Crying helps sometimes and is good for you. We all have our memories and that will be a blessing for all of us until we too pass. Now that I have my star...I thought Jim not remembering things we did was so hurtful to the core for me. But, now that I am alone I can think of these things and have a smile on my face because I had a wonderful man to share them with and he will never be forgotten because of the memories. You will look back dear leader and be so glad you have the memories and they will bring joy to you.
Joan, so very sorry to hear this....I read it and I can feel your emotional loss and grief. Please take care and hope that you'll find comfort in the days ahead .
Oh, Joan, I have a great big lump in my throat after reading your blog. I know we all feel this way from time to time as our spouses' loses more and more of who they are and their memories - one long string of losses and grieving. I remember how heartbroken I was when I realized that my hubby didn't remember a thing about how we met or anything about our courtship (albeit short, we married 3 months later). We met on a ski trip to Austria during the Christmas holidays of 1982. Everything about that trip was incredible, so much fun and the MOST memorable occasion of my life. And he has forgotten. I think that many of us have spouses that don't really know who we are anymore. It's all so sad.
I hate this disease, too. And, my heart goes out to you
Thank you again Joan for your wonderful honesty in sharing your experiences with us. I read all these postings yesterday and have thought of little else. I too have stories of very important times in our relationship that my husband has no recall of. I often cry while driving, alone in bed, or walking down the street.
Joan you are so right when you say, "I am really beginning to feel the grief of losing my husband, and it hurts as only an Alzheimer Spouse who has experienced this type of loss can understand."
Thank you everyone who contributes to this site. I check it every day and it is a life line for me.
Thank you for sharing your experience. I feel so sad for you and so many others here who had affectionate, demonstrative spouses. The pain of that loss must be overwhelming. Sadly, my DH wasn't really like that. He was a wonderful provider and I could never take that away from him. But he was raised to believe that actions speak louder than words (which they do) and as long as he was bringing home the bacon it wasn't necessary for him to provide little affectionate touches.
Tomorrow is our 30th anniversary -- I will remind him and he will probably say, "Oh, really? I didn't know that" which is what he always says about things he forgets. I don't know how we will celebrate -- maybe just go out to lunch. We went to a movie on Valentine's Day (my choice) and that was good enough for me. I find it hard to even give him greeting cards now -- even the funny ones just don't cut it anymore. DH does remember how we met (through friends over lunch at his favorite restaurant). A more painful situation for me is the fact that he doesn't remember our third child was stillborn almost 23 years ago -- he doesn't even remember I had a third pregnancy. However, I do know that DH was a master at pushing aside and burying painful emotions. Several weeks after our baby died, I begged him to go with me to the cemetery so we could grieve together. I really needed his emotional support -- his response was that he couldn't allow himself to "lose it" because he had to stay strong to continue working. We did have happy times after that, but there was the beginning of an emotional wall on my part.
So, even though it is painful, be thankful you had a loving mutual relationship. If DH dies before me, I will be crying not for what we had together, but what we didn't have.
the irony here is that those who had a loving relationship mourn the loss of what we had. those who had so so or not so happy marriages also mourn- but for what they did not have and possibly dedicate their lives to caring for someone who is no longer or was the love of their life.
what is the common bond here is that we do expressly mourn the whole way from diagnosis to death- for something. loss of our spouse, or for losing or regaining our own lives. those of us who have had a good marriage say it so often that it is overwhelming to care for a spouse, much less one where there hasnt been alot of genuine love and passion. it takes a geninely compassionte person at heart to stick it out and care for a spouse where those bonds were not formed. either way is not easy but we all want to make it to the 'after' and a possible new way of life.
Yuppers, the tears are constant and the grief is overwhelming. I cry all the time and as the journey gets longer, it gets worse. thank you Joan for sharing with us. Maggie
ElaineK- I could have written what you wrote,except for the baby- so sorry that you had that tragedy in your life. But my husband has been very emotionally distant - actually, stunted. He grew up with a very screwed up idea of strength & weakness. Even his sisters felt that it was weakness to cry. Must keep a stiff upper lip, never let 'em see you cry. Simple affectionate gestures were not his forte'. Avoid unpleasantness, deny any wrong doing, never accepting blame (even for little things that everyone does sometimes). Sometimes I almost feel sorry for HIM because he has missed out on so much of the richness that a loving relationship could bring. As I wrote in another post on another day, he was faithful, honest, tried his best, but some things just weren't there. Our car had to go in for repairs, picked it up today - has asked me at least 6 times why it had to be fixed, feels that we were "robbed", not understanding the problems there were. I go to the same repair shop he always took our vehicles to, very trustworthy people, but I think that somewhere deep inside, he resents me taking the bull by the horns. Somebody has to do it!! Whew - I guess I got that out of my system!