For those who care for someone with Parkinson's disease
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Topic How do we handle this? Go to previous topic Go to next topic Go to higher level

By Cindy Bystricky On 2009.07.11 11:21
Lately my husband has been saying things like "I know I am so stupid!",said with disgust and alittle bit of anger whenever I tell him to slow down or uncross his legs before trying to standup. Like everyone here, I try to not sound like I am barking orders at him, but I guess he feels like I am. I have considered having a talk with him and just telling him straight, "No, you are not stupid, you never have been , but you are not like you used to be!" Do you think I should talk about his dementia with him or just continue to pretend everything is all right, I just like to "boss him around"," make him feel stupid" as he has stated?? And he thinks others think he is an invalid, his word not mine. I don't want to hurt him but he doesn't realize how he is, physically or mentally. He is amazed when someone comes up to him and starts talking about PD in their family. He asks me later, "How did they know I have PD?" I have tried to say things like "we ALL have changed over the years and we just can't do things like we used to" trying to explain some difficulty he is having. But I am getting sort of tired of always being the bad guy when I am actually trying to HELP and PROTECT him!!!! I know, I know you all are in the same boat. Just let me know if you have had any luck with a straight-forward conversation. My husband's dementia is best described as confusion and I believe he is capable of understanding.....Thanks everyone, Cindy

By caregivermary On 2009.07.11 16:00
I think you should have a talk with him. Consider saying things like; sometimes you seem confused and have short term memory issues. This does not mean you are stupid but it does mean there is some progression of the Parkinson's. Some days will be better than others and on those days I won't have to remind you to do certain things. It is not my desire to tell you what to do, to nag, or remind you repeatedly. It is just the way things are. I wish that it were not the case and I hope you will consider my position as your primary caregiver. I care-that is why I do everything I do to make your quality of life as good as it can be.

I make these kind of comments to my husband when I get a dirty look after telling him what to do, or nagging, or whatever Al & Bob want to call it. I'm not always as patient as I should be and the remarks I make are not always delivered in a completely positive way. However, I believe my husb sincerely understands I want him to be as comfortable as possible and enjoy the time he has left.

I don't think you should shy away from the dementia discussion but I think you can word it in such a way that it doesn't get you both down. If he does understand things some of the time, then that would be a good time to have the discussion.

By LOHENGR1N On 2009.07.11 23:46
Cindy, I won't even pretend to know how You should broach the subject of confusion with your husband, I'll leave that to others more knowledgeable than I on that subject. I will however give My two cents worth on the "He is amazed when someone comes up to him and starts talking about PD in their family. He asks me later, "How did they know I have PD?" I think I'd say because You do, they said they have family with Parkinson's so they recognize some of the symptoms. You know You have Parkinson's Disease and there are symptoms so anyone with loved ones who have P.D. will be able to tell. Many people won't know but those familiar with the disease will be able to tell. Nothing to worry over it's just part of having P.D. You can phrase it better as to lessen upset and worry He may have about it but it's time for Him to realize de-nile belongs in Egypt. Besides, He's got the chance to meet and make friends with others in the same situation when people do address him about their loved ones. Well that's My take on the subject wether it is any help or not I don't know. Take care, best of luck and hang in there.

By bandido1 On 2009.07.12 15:18
Cindy: How do they know he has PD? Hre is my short list of symptoms as of approx 18 mths ago. Ask if he would recognize just even a few. The operatve answer to you is just continiue to be patient.


This is the first of several offerings that will look at Parkinson’s disease from a patient’s point of view. My objective is to provide those dealing with PD with at least one peek inside my mind.

I am presenting the list in a sequence ranging from symptoms least bothersome to the downright worst of the lot.

1. Tremors: Fortunately this symptom does not, as yet, have a serious impact on my day-to-day activities. My tremors are quite mild, and occur mostly in the morning before I take my morning meds. They are nevertheless on this list because they affect such activities as buttoning and zippering as well as cutting food. I have also learned not to order certain items from a restaurant menu. For example, I can’t twirl spaghetti anymore.
2. Poker Face: Every so often I am aware of it. I first noticed “the look” when looking into a mirror at the barber shop. I also noticed that I have it whenever I am not involved in group conversation.
3. Turning over in bed and adjusting bed clothes. It seems like I am constantly making adjustments and, of course waking up each time. Though she does not complain about it, I am sure my spouse (caretaker) is affected.
4. Hygiene: Showering used to be a five minute event but now averages about fifteen minutes. All my movements seem to take much longer than normal and I often feel unstable. Without a chair to be used when toweling off, I suspect I would be taking an occasional spill.
5. Swallowing: Although I frequently take meds without liquids I find food particles often seem to stick in my throat. Also, if I fall asleep on my back, I frequently have a reflux reaction and often cough until I turn on my side.
6. Walking, falling or “freezing”: I call it “my shuffle”. I get up slowly, move cautiously and sometimes feel I am losing my balance and have actually fallen only once since my diagnosis in December 2006.
7. Intellectual Impairment: My short term memory is more often than not unavailable but long term memories are easy to recall. Old song lyrics, school chums names and long poems like Paul Revere’s Ride are a piece of cake for me.
8. Vivid Dreams: Dreams sometimes seem bizarre and have most recently involved violent physical movement which has recently scared the dickens out of my wife. I am concerned that they could result in an unexpected traumatic episode involving me or my spouse.
9. Handwriting: I hesitate to write anything and am embarrassed when asked for a signature. Printing is satisfactory but done slowly.
10. Speech and salivation: I have the combined these symptoms because they often occur simultaneously and are equally mortifying. Stammering, drooling and nose running are symptoms easily observed and you can only imagine how they affect my psyche.

By WitsEnd On 2009.07.13 10:12
Not an easy conversation at all. The only suggestion I would give is to ask if there is anyone he knows that you and he can relate to personally. Someone who has had some type of physical impairment or illness....and don't forget to talk about possibilities and not just limitations. What can he still do that he enjoys needs to be the balance when talking about things he can't do or is having challenges with. Also, if he can learn to laugh at himself and not take himself so seriously--the sooner he can forgive himself for not being "perfect" anymore. Nobody was ever perfect of course...but not everybody remembers that all the time. Also, laughter can ease a lot of pain. Perhaps laughing when you do something yourself that doesn't turn out quite right might be a start. If he can learn to laugh at himself at times that might help too.

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