Hi Joan, It has taken a while to answer your question. It is so hard to see a leader struggle with issues we face. Like at the weight loss center, we want to see leaders as having tackled the problems and carrying baggies of good choices wherever they go. We all know the pat answers, look for something beautiful, help another,do something you love, recognize depression, get medical help, talk with a therapist. But underlying the loss of positive attitude seems to me to be disappointment. By being hopeful so we can be more helpful to our AD spouses, we keep our expectations. We thrive on the things they still can accomplish. We count on them to flush the toilet(or find it in time), to remember what they could do just yesterday. We tolerate picking up the soiled clothes because we have been doing so for weeks, months or years. A new loss of skill is devastating. Not because there is just that more we have to do. That is also true, and gets to be a real problem in itself, as we get older or infirm ourselves.But this sense of loss of control, of our expectation that the AD spouse will still perform the activity, disappoints us so much that we lose our sense of accomplishment, and thus our positive attitude. So what can we do to recoup our positive attitudes? REDUCE YOUR EXPECTATIONS! Rejoice at anything our AD spouses do. Get help from the outside sooner, as the loss of positive attitude may indicate that the caregiver has "gone as fur as s/he can go".Phyllis9
read your blog from October: http://www.thealzheimerspouse.com/Thankful2.htm I think that was a wonderful message, and good advice. My mother always taught me that no matter how bad you think you have it, there are always people who have it much worse off then you (think Haiti). This is not to diminish the overwhelming challenges and burdens that everyone here is experiencing, but I find that sort of perspective is always a good way to help me put one foot in front of the other and carry on... I know you'll bounce back quickly - you've got all of us rooting for you!
The Big Tree Murphy site refers to the losses as "little deaths" which I think is an absolutely appropriate term - the death of a function or skill which will never return. Phyllis9 is correct - we expect our LO to continue at the level they are current at, but truthfully I personally have difficulty lowering my expectations. Perhaps telling yourself that although he can no longer do x he can still do y. Celebrating what he can still do might help. I really don't have any concrete advice because I am devasted and heartbroken everytime he loses a function. My devastation has made it clear to me that although I have "intelluctually" come to terms with his disease, I have not come to terms with it emotionally. May the support you get from your cyber family help you through this difficult time and and lead to a return to peace.
Oh Joan, since shortly after you began this site I've followed your journey so closely because DH seems to be just behind the stage if that's what we are to call it Sid is in. And the emotional frustraitons you share so mirror mine so often. I'm now seeing just the glimpses of what you're describing is happening with him and know I have to start heavy duty emotional preparation. Reduce expectations. That is what has helped me more than anything and yet with every loss I seem to go through the process all over again. I get lulled into the current plateau and them wham! Emily is right though. After the down comes the up.
Some wise responses here. I am taking them all to heart.
I sure can relate to my having a negative attitude sometimes about my husband's decline. When I first came on this site, I had been going through about three years of having a very sweet husband for 40 years that had turned into a mean, hateful, cursing man. It iwas almost more than I could take. One more year of that and we finally got the right doctors, the right meds and the right schedule for him. He will still have short bouts of those behaviors, but it is so much nicer now that he is pleasant most of the time.
I think I am getting better as in the beginning, I used so much energy being beside myself about his behavior. Last week he had an episode of losing his temper at me and loudly cursing ongoing in the grocery store. He looks normal to most people. I guess the folks that kept witnessing this had interesting dinner conversation that night.
I didn't like what happened, but I kept trying to figure out in my head what happened and what to do next. For us, it was turning one of those new "corners". I realized that I was expecting more of him then he could do. I had my list and was running thru as fast as I could while he was off in his own world where hurry doesn't exist. I came to the conclusion that if he can't behave in that situation, then I need to make his environment one where he will be able to succeed. I will shop in the morning before he gets up and will not have a day full of errands which apparently he can't handle.
I didn't castigate myself, was calm, didn't get angry, gave the issue several days of serious thought before I came to a conclusion. One of the things I HAVE learned is not to try and discuss it with him. One of my problems in the past was thinking that "this won't happen again". I have come to see his behavior in a different light and I am trying to face the reality of AD.
I have been seeing a decline since the summer and I guess we are now at a new normal for a while. But, I am such a slow learner.
I have often called myself a slow learner as far as Alzheimer's Disease is concerned, but I've come to realize, I'm not a slow learner, I'm a slow adjuster, and maybe that applies to you too. Although, I have to say, as the disease progresses, it is taking me less time to adjust to each new bombshell. I hate it, but I adjust.
Dr. Teena Cahill writes and speaks all of the time about - "finding what is RIGHT, and focusing on that, instead of focusing on what is WRONG". It is the way she keeps her positive attitude most of the time. I'm trying.
So much of what you said is true for me as well. I like the phrase "in a world where hurry doesn't exist." I'll be sure to remember that one because "hurrying" is a problem in this house. I know it's all part of what is happening to him, but it is so frustrating getting him ready to go somewhere. I just cannot rush him or he won't go at all. This "being quiet" while you feel so stressed is one of the hardest things to get adjusted to with this horrible disease. We spouses have to change as much as they are changing so that there is no "me" anymore. My "me" is long gone.
I've found that the words I use to describe a situation say a lot. If I use words like "lower, "reduce" that tend to have negative conotations then I feel worse and have a harder time adjusting. If I use words like progressed on the journey to a different point and see that they are now on a different page, adjusting is faster for me. There is so much about the journey that we have little or no control over, it is good to figure out what we realistically can control and work with that.
With each change, I have had to adjust. Depending on where I am, how much is changing and what else is going on in my life outside of him and the disease, it can be a short time adjustment or a longer one. If the change hits one of my OMG points (like needing a wheel chair and no longer walking or needing thickened liquids), those adjustments on my part sometimes took longer.