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Topic Musing about behavior Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2012.01.04 17:05
I over the years have read many posts about behavior problems with dementia. About memory loss and the exasperation of those dealing with it. About the maddening repeating of answers or explanations. I believe when this stage is reached We have to step back and review how We handle it. Most of Us are conditioned in the use of rote or repetition in learning. We learned that way and taught our children that way. Two and two is four, ABCDEFG..... hot don't touch, HOT DON'T TOUCH! etc,etc. In dealing with dementia we fall into repeating and automatically expect at some point the light bulb to go on and the ah ha moment. It won't, I think of dementia as unlearning. The forgetting and not being able to relearn and retain. Loss, the loss of that ability to grasp and hold a concept. One with dementia might grasp and idea or concept but then it's gone...lost! Upon repeating they may again grasp only to seemingly instantly lose it and this is the problem We have the most trouble with, We can't understand why just after "getting it" it's gone. This can lead to the frustration and Distrust, suspicion and resentment voiced so often by those caring for or involved with them.

This is where and when We have to say time out...okay? What is happening here and now? What built us up to this moment? I told (*insert name*) yesterday and ** got it and understood but today ** is trying to get their own way anyway!

The sky is garbage! Blue smells nice! Now I've got your attention huh?

What the hack is he talking about? Al's gone over the edge! No just an example of what We might as well be saying to someone who can't grasp and hold the concept. I can only go to that place once a month......the sky is garbage. Blue smells nice........remember I told you why yesterday? Nothing is making sense! Extreme perhaps but if it gets you thinking.....effective. Take a moment to figure out what's going on. It will make you feel better to at least try instead of taking that time to think of manipulation, being mean or spiteful which many, many Patients aren't doing, in fact it is the furthest thing from their diseased minds. Some Posters have said They just say it's Mr. Parkinson's fault. Maybe they are the wisest of us all! In so doing They lay the blame squarely where it belongs and try to go on living as good and functioning life as they can. They don't waste precious time upon ideas of manipulating or selfishness. They don't dwell upon what might have been, they deal with what is to the best of their ability.

Now if I'm not in trouble yet this might get me there. In many posts of complaint about manipulation or meanness there is a theme of not having other family members pull their own weight and help. Of being alone to deal with it all and exhaustion. Many times this situation is called transference, it is a natural reaction. We resent no help, we resent being so alone caregiving. We resent loss of friends or social lives we were used to having before Parkinson's Disease invaded our lives! But and this is a big word but We now have to stop for a second and take a deep breath......We couldn't! Why? Not because of (*insert name*) being manipulative or selfish! Because of the Disease. The sky is garbage and blue smells nice! Is someone who can't grasp and hold the concept really plotting against Your plans? Damn you! You knew it was important to Me! You're mean and spiteful! We have to stop and think .....Cousin Bill said if I was in a pinch call him or Harry from the lodge told me he'd be glad to come over and sit with him for awhile if I ever needed.....Whoever, however if We'd planned ahead just incase ......we could have gone but......they planned and fouled it up again on Us.

I'm not singling out anyone it is human nature at work. We, those not demented are the ones who have to step back and look at what is happening. Along with everything else Parkinson's throws at us and does to our loved ones we have to look at what it is doing to us too! We have to say not today you're not doing that to me Parkinson's not today! Many caregivers might say you don't know anything about what we go through, perhaps you're right as everyone has a different journey with Parkinson's Disease. I do know what it is like from the inside of Parkinson's Disease and reaching out from here inside I can tell You life is too short for this. Purple really isn't dirt, We're not plotting. Be good to each other! Take care, best of luck and hang in there.

By LotsaBob On 2012.01.04 23:02
Good post AL. The last paragraph really hit me and brought a couple tears to my eyes. I see my wife trying to cope with me and I don't understand why she gets so upset. Then I get upset trying to figure out what I did wrong. I don't get mad at her but at myself.

By sunshine On 2012.01.04 23:59
Thank you for your post! Until I came on the forum I was very upset a lot of the time thinking all the thoughts that you have described and after having read some of your posts Al, I am very appreciative of you for your honesty and perspective from the person with PD. I find now, since reading your posts, that I am a little more detached from feeling like I'm beating my head against the wall, and realizing that I can choose how I react to most things. I feel somewhat detached, I can't explain it, and more able to "observe" rather than react right away. Definitely seeing it as coming from the disease, or the meds being off, or my hubby having an off day, certainly makes a huge difference in how "our" day goes. And I also have to be selfish and make sure I get the rest I need. A luxury I realize for me right now as I am able to do this if I need to. I read the other posts and feel blessed that we aren't where others are on this journey. I worry that we will run out of funds to pay for help when we need it. That part is all too scarey and real now. But I am trying to be in the now and cherish the good that we have in our lives at this moment.
Not an easy task at times but very helpful when I implement it.
Thank you Al for your honesty and your perspective. I feel that you are a light that beams at the end of this tunnel my hubby and i get into at times. As a matter of fact this forum and all who post have a story to tell and insights to add that help us all along this challenging journey, as you have expressed very well Al. Thanks! :)

By shakydog On 2012.01.05 04:00
Another wise post. I'm glad you have the energy to keep up with all this. I don't.

Hang in there brother. Sorry I'm not more support

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