I invite you all to log onto the home page - www.thealzheimerspouse.com- and read today's blog. I'm wondering if I am on target or just whining about my take on the "tragedy of AD". I'd like your comments and opinions.
Reminder- you may have to "refresh" your browser to see Tuesday's blog, as it was posted at 1:30 PM ET.
I told joang that she may publish my feedback but I decided to do it myself. Joan
You have been such an inspiration to many of us at times and now it is time to take a deep breath and know that it is more than OK to have a down day. I cannot afford to see my shrinks right now and you and your website have been such a mainstay for me to keep going. I am here at work reading your webpage and getting such inspiration from you and all the others. So go ahead and scream, cry, kick a tree (lightly) we all deserve it from time to time. Ben and Jerry have come to my rescue more than once. (humor) No lectures, only understanding and hugs from all who have come to be inspired by you.
Oh joang can I identify with all this. You have a way with words that I can not even come close to. But you hit the nail on the head. At first I didn't think I could make it through the shadowing, the sleepless nights etc. I don't know were all my patients comes from, I was never a very patient person. Now he doesn't know me any more. He wants to go home all the time to see his mother(who died 4 years ago) He paces almost all day long now, talks to visitors only he can see. At least they are good people. I guess if they were threatening him I would have my hands even fuller. There you see, I am glad they are not bad people. I would not dreamed in a thousand years that I would be glad about something like this. Well this is the live on Alzheimer's planet.
I don't think it's whining, and even if it is, so what? Everybody feels like they feel. You have to feel bad sometimes, in order to know what feeling good feels like. There are two words that I keep in my pocket, endure and perserve. When it is not going well, I pull these words out and remember, get through this. Everything will change, with or without your input. I am in an usually good mood because my wife and I are into the third day of things going well. I've got medications balanced out and I've actual slept several contiguous hours two nights in a row. It's not all peaches and cream, but all things considered, not too bad. So Joan, endure another day. Perserve until something good happens. It will eventually.
When he started asking me about putting out the garbage 5 days before it was due to happen, it drove me crazy. The first week he didn't ask at all made me really sad. Obviously it was better when he was asking.
One of the thing that I have noticed about many of us in our struggles is that we forget that sometimes we too are human and have bad days. Caring for our loved ones demands so much of us that our thoughts and feelings are not as important anymore.
So how about taking a deep breath, saying to yourself, "I am a beautiful human being with all the imperfections that go with the species. Sometimes I have good days and sometimes I have bad days and sometimes just surviving the day is a form of winning."
Joan, each day is a "good old day" as our loved ones continue to travel down the road of this disease. Some of their changes are easier to accept than others. Sometimes, we have to take time out to do something for ourselves, sometimes we need to take time out to grieve and heal and then there are sometimes when we really need to scream to get the anger and frustration out of our system. Sometimes the impact of the responsibilities that go with making all the decisions for another person's care and life can be overwhelming. We are all amazing people in that we not only survive these feelings but surmount them and continue to go forward.
My Earnie went through the shadowing, repetition, anger, psychiatric wards.....and during them all I didn't know what would come next as I wasn't able to benefit from a forum like this. I now wish I did know w hat would come as then I would have been more patient, and would have tried to live each day more fully. Now my sweetheart can't talk, can't walk, and s ometimes doesn't know me or his family. We stilll have our moments of connectiion of love and I stll can hold him and kiss him. But my man is no longer my husband as he was once. I hold on to what is left of him but only as a beloved stranger.
YOu are not whining Joan: you are mourning the slow death of yo ur Sid's personality and you realize that each new behavior is a sign of t he death of what was and won't be again. You are building your life in a healthy way, by fillling your days with helping others, and having an interest that is compelling and needed. The one aspect of the journey that each couple takes is that as the AD sufferer reaches the last stage, he/she no longer is a catalyst for emotioonal agony by the spouse. There is acute sadness sometimes but no longer is there strife between you. The realization that you are truly alone has been forced upon you and you still have moments of depression and extreme dejection but you are a strong , tough woman and you will survive.
joang: Hope this new day is finding you in better spirits and like dking said so what if you have a sad day or maybe 2. Just know that we are here for you. You have done so much for so many and it is more than OK. I went to see DH last nite and sat there and thought about you joan and your wish for the old back again and I started to cry. It was my sweetie who said come on now no tears tonight. Let me show you the pumpkins that they put up in the hallway that we colored with crayons for Halloween. I don't ever remember him coloring with the kids when they were little, just telling them to stay in the lines. It is the little things that mean so much at this time of their lives. In the movie "Steel Magnolias" I will not forget the line "My greatest emotion is laughter through tears" and since I don't seem to be able to stop crying there are quite a few times where the laughter is thru tears.
I always seem to find myself thanking you for making me feel normal. I, too, have begun to get a taste of yearning for my "old" husband. I used to get so frustrated until I thought I'd bite my lip completely off my face. I lovingly referred to my husband as living in "Glen Land"...sorta like the childhood game "Candy Land" where everything is colorful, beautiful, fun and no responsibilities...just carefree fun. I learned to appreciate and long for "Glen Land" when he went through a phase of clarity and my "old" husband came back to me. He could see he was slipping away and how much he was forgetting. The resulting depression was crippling for him. I hated seeing him like this and yearned for "Glen Land" promising God anything if he would just let my husband find "Glen Land" again. Now we are on a rollercoaster that mostly rides him through "Glen Land", but makes brief, horrible stops in reality. I try so hard not to complain, because I know it will get worse, especially when I read what most of you who are dealing with stages 6+ are coping with. It's all so hard for all of us.