I'm at my Wits End


#1

Hello,

My husband (82), who is a lot older than me (20 years older!), was diagnosed with Parkinson's about three years ago but it is obvious, with hindsight, that he has had it for a lot longer than that. I am finding it increasingly difficult to cope with his moods and it is becoming almost impossible to speak to him without him flying off the handle and accusing me of starting arguments! For example, he will watch 'fly on the wall' police programmes over and over again, swearing blind he hasn't seen them before, and when I point this out, he gets angry and storms out. I try not to say anything but it is causing me a lot of stress. I am disabled myself and feel so alone. All my friends say what a lovely man he is (he is really but this illness is changing him?) and say I must be exaggerating. None of my family can see anything wrong and think it must be all my fault!

He also has Addison's disease which doesn't help the situation. He won't let me go in to see his GP with him but he is waiting to see the neurologist again, though we could wait a long time, and then I will insist I go in with him. The trouble is that he always presents himself impeccably when he is out, it is just when he is at home here. I know it must be so frustrating for him and I include him in anything I do but it is all making me so ill now and I just don't know what to do any more.

Does anyone have any suggestions for coping mechanisms? I do go to my own groups once a week but I am always worried about him at home. He forgets things, like leaving the gas cooker on, or putting things in the microwave with no liquid. 

I am sorry this is so long, I could write so much more, but I have been in tears after another outburst from him. Thanks for reading. It really does help to write things down.

Maggie


#2

HI maggie

Sorry to read this, it's awful how Parkinsons impacts on the nearest and dearest. Try to remember :  its not him, its the disease. My dad has had it for nearly 10 years and it took several major setbacks before he was willing to admit to himself that there was something wrong and accept the help that we were offering. In fact it took hospitalisation. And still he came out asking to drive, when he was not AT ALL fit for it! I hope lots of people will post supportive comments here and share tips on how to cope.

You are not alone!

Lyn


#3

Hi Maggie, I'm sorry for both of you to hear this. particularly as i was accused today of being sharp. And I know I can fly off the handle at the drop of a hat (if you don't mind the mixed metaphor).

My thoughts are personal - I've got no professional experience - and based partly on seeing myself, partly on helping to care for my mother in law. So, it's really difficult and unfair, but you're probably going to have to make the running. Is your group social only? Does it have anyone with professional knowledge of family caring (which I think is just *the* most difficult task; look at your anxiety at leaving your o/h just for an evening on top of everything else)? If not, try to find out what family caring support might be available and ask their advice about coping mechanisms.

For the arguments, my experience is that you need to break the pattern as soon as you realise what's happening - it's too easy just to continue the scrap (especially if you're right!). Take a deep breath rather than responding, physically break away, whatever will break the rhythm.

I notice I never take my own advice, so I'd better stop here. Good luck and let us know how you get on. But i can probably speak on behalf of your husband when I say we don't mean it . . .

Semele


#4

Hi Lyn,

 

Thanks so much for your words of encouragement. I was so upset last night. Today he has been a bit better, more like my lovely Johnsmile

I just hope his appointment with the neurologist comes soon. I've told him to ask his GP to chase it up when he goes to see her on Monday. A simple medication change could make all the difference. He gets upset as well as I do. He doesn't want to be so angry but he can't help himself. As I said before, his Addison's doesn't help. He was a farmer and is used to hard work so being restricted must be so frustrating.

 

Thanks again

 

Maggie


#5

Hello Semele,

 

Thank youbig grinYou are right, walk away, which is what I always try to do but sometimes just a small comment makes him fly off the handle.

I wasn't clear about the group I go to. It is for one of the disabilities I have so they aren't very knowledgeable about Parkinson's. 

We have recently moved house so we need to call the OT to assess the needs we both have so I will ask her about caring support. There may not be much, they always plead poverty but may be able to point us in the right direction.

By the way, I love your cat! 

 

Thanks again

Maggie


#6

Hi Maggie, 

I'm a PWP, not a carer, but I care.

I really felt for you when I read your post, as, like your husband, I can be incredibly difficult to live with.

i can experience such powerful anger, that I feel afraid and ashamed of, and I don't always  know what to do with it. So it's usually my poor old Mum that bears the brunt of it. She's elderly and not well herself.

I moved in with her about a year after splitting up with my husband, when both of us were more able.

however, as my PD progressed, the medication increased, and so did my mood swings.

i would say or do something that would really hurt mum,I would then give myself a hard time, resulting in me getting angry with  myself  resulting in anther round of anger that mum felt was directed at her. A really vicious circle, spiralling out of control.

I was lucky enough to eventually spot what was happening and could take steps towards dealing with it.

I knew it was a combination of the disease and side effects of the drugs that was causing it. I managed to talk to friends and my PD nurse about it , and found that very helpful, coming up with creative ways to deal with it.

Mum still doesn't understand why I get so angry, and she will not speak about it with anyone as she is a very private person. I feel that if she could talk with someone who could try and explain things better than I can, it would make things easier for us both to understand each other.

I'm wondering if you or your husband may recognize any of this, and if so, whether you could approach someone to help you both with the awful state you both must be experiencing?

I do wish that you could  both  find a way through this together.

 

good luck to you both,

 

Equa

 

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#7

I sympathise completely with other PWP's and their carers who suffer because of the irrational anger expressed by the PWP. I recently went slightly mad when, with my wife and two grandchildren, I visited a crowded French market. They decided to have some fast food; I decided not to. My wife asked the children about ketchup and they said they didn't want any. Five minutes later, after we'd found somewhere quiet to sit down, one of them said she did want some ketchup. My wife asked me if I'd do her a favour and take the food back to get some. I said no, so she went. While she was away I decided I'd had enough and when she returned I said I was going back to the house, where I enjoyed some brief peace and quiet until they all returned. The next bout of moaning on the part of the grandchildren (about two hours later) had me going completely over the top. It all left me feeling ashamed and completely inadequate. My way of coping lies in benzodiazepines and the fuzzy detached feeling they produce. The trouble is they come on top of my two medications for Parkinson's, my medication for bi-polar and my dose of lithium. As a result I have serious concerns about what I'm doing to my brain.