As a caregiver to husband who has PD with... - Cure Parkinson's

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As a caregiver to husband who has PD with Dementia, how do you handle him saying things that aren't correct?

16 Replies

Correct him or go along with what he is saying? He thinks he still works and has jobs to do and people to call on phone. He has tried calling people back who haven't even called. He gets agitated if I say he's retired.

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16 Replies
Carrigan profile image
Carrigan

Hello it is difficult, what I (we) my colleagues do is the best we can, whatever reliives his agitation at the time, this may vary. You need support from others to talk these things over with to find things that work and triggers. Have you been in touch with any other services other than PD networks. Age concern, Alzeimers etc. It is very draining for you both.

ElaineMay profile image
ElaineMay

I have a book called "coping with dementia - a practical handbook for carers". I think that this can be obtained free from Demetia helpline on 0808 808 3000. If you have problems getting hold of it please let me know and I will give you my email address so that I can get your address and post it to you.

This is a most distressing illness as the person you have known for such a long time has gone into a world of their own. The carer should seek as much assistance as possible. You should find out about respite care, if only for a couple of hours a week. Give yourself a break!

ElaineMay profile image
ElaineMay

Hi again. The book I have got was issued by Alzheimer Scotland so you may not be able to get it. Try the Alzheimer organisation. Here is the link for the free dowloadable leaflets.

alzheimers.org.uk/site/scri...

Best wishes

Elaine

in reply to ElaineMay

Thanks for the info. I did sign up for the Alzheimers newletters and am reading things they have posted. Haven't found the coping with Dementia handbook yet but still searching the website. Will contact both the Parkinson's and Alzheimers offices and see what they offer as far as the dementia.

Joealt profile image
Joealt

Politely correct him.

wifeofparky profile image
wifeofparky

I hear you loud and clear. My husband just started on Azilect and this seems to have had an effect already as he states it helps him think more clearly. Unfortunately he seems to be having auditory and visual hallucinations and gets angry when I don't hear or see what he thinks he does. I will be discussing this with his neuro. There is no correcting him as he gets more agitated and says I never believe him. PD is a terrible disease and unless you have personal experience with it you cannot understand what we both go through every day. It is hardest when he says he would rather be dead than endure this.

in reply to wifeofparky

My husband gets extremely agitated and angry if I try and correct him and also has the auditory and visual hallucinations. He is on Seroquel but that isn't helping .We see neuro end of month so hope he can suggest something different to try. It hurts so badly to see him like this and wondering what he feels inside and if he knows what's going on. The tremors are easy to deal with but the mind issues are extremely hard. Sometimes I get so upset I start crying and then he starts apologizing for being sick and we both know it's not his fault. Blessings to you and your husband!

FeeBee profile image
FeeBee in reply to wifeofparky

I totally agree - mine says the same sort of thing occasionally. Mine has no meds at the moment as everything has such a bad effect on his mind. It is Parkinsons with Lewy bodies, which I believe is difficult to medicate.

FeeBee profile image
FeeBee

My husband has what I call an "episode" every afternoon when he wakes up from sleep and is very out of it, shouting and ranting and seeing things that are not there. I tell him that he has just woken up and will come round and when he says rubbish I tell him it doesn't make sense. I then have to coax him to come upstairs or somewhere familiar, even if it is to go to the loo, and then slowly he comes round and we have a cup of tea. This afternoon he half came round but is still getting muddled and saying horrible things. He is upset because I have found a carer to stay with him tonight whilst I go to my singing class from 7 - 9. He keeps thinking he is going with me etc etc. His swallow is not so good as it was and it makes him dribble a bit and to see him ranting and dribbling is not nice. I feel bad about going out but I HAVE to.

in reply to FeeBee

My husband does something similar but his is just more confusion rather than the ranting. After a few minutes, he seems to be o.k. I am so glad you have a carer to come and stay with him occasionally as you need to take care of yourself. I haven't gotten to that point yet, but it is coming soon for me. I pray that you find some stress relief with your singing classes, keep them up!

FeeBee profile image
FeeBee in reply to

It is only in the last three monts that I have had to make sure there is someone there when I go out. Hope your husband's problems are slow in coming on also as it is a great effort to get in the cover, and of course pay for it on top of paying for the courses I am going on. I'd rather do that than just go out and gossip with the girls - anyway I don't have much to talk about except u no wot, which they don't really need to know! Miy husby is 74 - how old is yours?

in reply to FeeBee

Today has been extremely difficult as husband having trouble walking and his language skills are worse. We can't understand each other and we are both so frustrated and don't know what to do. I have been using a dry erase board but he is having trouble reading that now. My husband will be 70 yrs. in August and it is so sad to see someone you love who was once so active and vibrant become what he is today. It's like living another life with no where to turn. You continue to go out when you can so you don't wear yourself out. I know it's expensive to get a carer but you need to take care of yourself so you can be there for husband. Blessings!

wifeofparky profile image
wifeofparky

I goofed. He is on Aricept not Azilect. I was speaking to the pharmacist who works in our office and he says he can stop the progression of the confusion but not restore anything. I am more concerned about the hallucinations and his fixation that he is right and I never believe anything he tells me anymore. Thank God I have friends to talk to.

in reply to wifeofparky

My husband tried Aricept but had too many side affects so they took him off it. Hope this works for your husband. The Parkinson's Assn. is having a phone and Internet program on Parkinson's medication on Tuesday April 17th at 1:00 and I'm hoping that I can listen to see what new meds are coming out to help treat the disease. If I can't listen in, they will release it on a tape about a week later so can catch it then. Glad you have friends you can talk to as that helps.

wifeofparky profile image
wifeofparky in reply to

He has had some diarrhea but compared to constipation, it may be better. I posted about the PD Foundation internet program earlier today. I have to work that day so I will look for the archived version.

Flyingcarousel2 profile image
Flyingcarousel2

If it is with others, I simply say, “and I might add. . .lso they will know the real score on something but know we can all be gentle and when it is just us . . .i don’t correct unless he is going to harm himself, son or myself

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