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Topic Am I Demented? Go to previous topic Go to next topic Go to higher level

By onthinice On 2011.01.27 17:10 [Edit]
Bless all of you for being here, and for sharing yourselves with us. My hubby has PD, dx'd 10 years ago. He is 75, I am 52. He is still ambulatory, but is declining rapidly. He's maxed out on sinemet, taking high doses of Mirapex, Comtan, Neurontin, Wellbutrin. His memory is going pretty quickly - his Neuro has never given any indication of it, but I know that he is in the not-so-early stages of dementia. The weird thing is, my hubby doesn't know it. I don't understand - how can you forget how to get to the drugstore you've gone to for 30 years, and not see that there is something wrong? But he doesn't, so I "cover" for him, and take over as his "memory".

Sometimes, though, I seem to forget. Last night I became angry with him because he went back on an agreement we had made two days earlier. I still hadn't let it go today, and was curt with him on the phone (I'm at work). How can I do that, when I KNOW he does not remember the agreement, let alone the fact that we EVER discussed this matter? When I do things like this, I feel like I am the demented one.

We've been together for 20 years, by the way, and have no children. I try to stay in the present and keep it together, but my armor is starting to crack.
Jaycee

By karolinakitty On 2011.01.27 19:30
Jaycee....Welcome to the forum......

Dealing with dementia is a difficult road. There are things we can't do on a regular or normal basis. Making agreements is one of them, reminding them is another.
My guy makes fun of me when i say this: Don't you remember i told you.......
Of course he doesn't remember. ..duh!!! I laugh at myself because I don't think about what I say or how i interact with him in regards to the dementia.
Not everyone is the same about dealing with these issues but we/he uses it to his advantage sometimes......

We together have tried to work out "rules" in regards to remembering things. I post notes where i know he will find them, i put things back in place where he is in the habit of putting them....

The first time i knew it was more than just forgetting was when he took extra long coming home from his favorite fishing hole.... he got lost and didn't tell me until much later ......

Not only is it hard on us as caregivers dealing with their memory loss, but it is so hard for them too.... it makes them feel dumb and stupid according to my guy, he's only 54, so it makes it even tougher... not being able to handle things like you used to and up on everything like you were it's hard. It also makes us deal with our own mortality.... what's the first thing to go ... your mind... at least that is what has been preached to us forever and a day... so losing things, forgetting where the store is, not remembering someones names often puts us on the defensive as to our own mortality... Is it dementia or just old age... that is the hard question, but ...

I just got this book from John Hopkins Called Memory...if you have a few extra bucks, it might help.. it was $29.95 plus i get updates with my email... so far 9 pages in, it seems well worth the bucks. It talks about music boosting recall, using games hobbies and other things to prevent further decline... and antipsychotics and how they are major risk factors with dementia... Check them out on-line and sign up for the updates on memory... the updates are free and go to your email.... i find them very enlightening..

just "remember" ...what is normal for us to remember, someone with dementia probably just can't.......

By Michele On 2011.01.27 19:42
On thin Ice, I know how you feel. I sometimes do this with my PDr husband too. With me, it is when I can't understand him. His speech is affected and he speaks very softly. Sometimes there is no audible speech at all (but he thinks he is speaking audibly). It is so frustrating for both of us but it seems to bother me more. I get angry with him for not understanding that I can't hear him, keep asking him to repeat himself and expect him to speak louder (which of course he can't). His writing is very hard to read most of the time and sign language doesn't always work. Anyway, I feel guilty and ashamed that my anger gets the best of me. I know that I'm human and the stress and feelings of loss make me angry but I feel badly anyway in the moment. It's easy for me to say to you that "you are human, it's ok for you to get angry sometimes. You are under a lot of stress and you've lost a lot too" I know that this is true but I feel that I have to be perfect and never get angry with him. As I'm writing this I realize how silly this is. I believe that many caregivers feel this way. That is to say that because of what our loved ones with PD go through we should never get angry with them. Yes I sometimes feel like I am the one with dementia.

By packerman On 2011.01.28 10:30
Michelle, one of the best things we got from the Speech Therapist was "think loud". it works--he enunciates louder and clearer.

there is also "think big", which works for both writing and movements.

good luck,
Pat

By parkinit On 2011.01.30 08:44
On thin ice - Stress will make your mind foggy and thinking unclear. We are going through the last few weeks of my dad's journey with cancer and my mom said she knows she is not thinking clearly and I find myself going somewhere with a purpose and then that purpose quickly evades me.

Have you tried couseling or doing something healthy or indulgent for yourself to alleviate your stress? Make sure you do. I take daily walks and most of the time this helps, but right now things are at a such a high level of stress, I'm not able to "erase" it all with a simple walk.

Hang in there. Be kind to yourself and you'll be kind to others.

By onthinice On 2011.02.01 12:49
Thank you, everyone, for your kind responses and advice. I have found that my stress level has decreased a bit just by finding this forum, and reading the experiences of people who understand what I am going through. In my daily life, friends and family just don't get it, and I don't expect them to. I thank G-d for all of you, and your willingness to help!
Jaycee


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