Feeling overwhelmed!!

[Folliott]

I don't get it. At night when I put in my earplugs he can get up, go to the bathroom, get back to bed, get back to bed, get up numorous times, get up in the morning, make his own coffee and as soon as I am awake he can do nothing. All I hear is help, cover, me up, change my tv, turn on tv, help me up. What the hell is this? He was out with friends last night and all was well. He was being spoiled and pampered. Everyone said he did great. Really!!! Spend a day. Response, I can't, , help me, undress me, put on my shoes, put on my coat, help me, help, me wait on me, be here when I call. Oh my God!!!. I realize this is hard but when is it too much not doing and too much demanding attention. Bad attitude I know.

[Yvonneandgeorge]

Hi it is not bad attitude I suppose you are tired, maybe you could get a couple of his friends around for the day, and see how he behaves? I think they like to be spoilt a bit, my husband can't make himself coffee, he's walking is not good he has me doing this and doing that, sometimes I wonder if he can do more for himself, but they are the ones with this horrible illness, I feel like my husband is demanding, maybe it is the PSP, our we are just tired, my daughter says there is worse to come, sorry could not be more helpful have a good day Yvonne xxxxxxx

[Heady]

I know, then he moans, "you are bad tempered, you don't do things the right way, oh and of course, you are taking all his independence away and fussing all the time!!!!"

I don't know what's right any more. All I do know is that S is falling all the time and can't be left for two seconds without some mishap!

You do sound tired. Try and get some time off during the day. Could one of his friends come and sit for a few hours. Are you in contact with the local hospice, they offer a day care centre and it's brilliant! Also Marie Curie offer a sitting service, well they call it a befriending service. A like minded person to your husband will come and chat with him for a couple of hours a week! (Sorry I am presuming you are in the UK) if not, look at your own charities and see what is on offer. Anything to give yourself some breathing space. Is he going to any Physio classes? Again, this will give you a few minutes rest, even if you stay to help. Contact your local Parkinson group, the exercises they do are extremely good! Could you get him to some adult classes during the day? I have failed on this front, but it's worth a try. Once you start thinking along this route, you may come across something that will work for you.

Best of luck, remember one day at a time and that you are not Superwoman! You have to employ her, money well spent!!!!!

Lots of love

Heady

[jzygirl]

I was at a carers group yesterday and this was one of the things that everyone was saying that the person they care for is very demanding when it is just the two of them but get friends round and they seem to be a different person articulate able to do more things for themselves etc.

we couldn't decide if it was they put on a show for there friends or is it a case of they know we will fulfil the request for a quite life. Its really a case of chicken and egg. Do we spoil them or do they take advantage. Still puzzled with it. J

[Mwick175]

I know exactly what you mean about your husband "perking up" when around other people. Mine does this too. Apparently he carries on conversations & is quite social. With me he just sits there! This is not fair!! And of course when I ask him what he did/talked about while out & about, his answer is always "I don't remember". Frustrating to say the least.

[PUTLAND]

Yes so many of us could relate to what you are dealing with. My husband is so different with other people around he tries to chat (his speech is bad) and is in great form. Everyone that visits and sees him say he looks well and is in great form. I could scream at times. When I am not around he can do things for himself, but like you as soon as I am around I am on duty. Please mind yourself, we all get days we could scream. Talk care xxx

[Tz2388]

My husband is farther along, but I have the opposite problem. He can do almost nothing, but thinks he can. Tries to get up and falls and breaks furniture, tv, windows....tries to fix things and takes them apart and doesn't know how to pu back together...(neither do I)....messes with gear shift when I'm driving and runs the heating and air-conditioning. He soon will be riding in the back seat! Aaaauuuuuugh!!

[gypsywoman1947 in reply to Tz2388]

Oh how I smiled at this , I can so relate to this situation, and so so difficult to explain to others why life is so difficult . My best wishes to you

[Tz2388 in reply to gypsywoman1947]

And you! Remember, one day at a time!

[gypsywoman1947 in reply to Tz2388]

I try hard to do one day at a time but my mind races on and on to the "what if" , I start to panic as to how I will manage , I'm not a very good nurse !!! Then I try to tell myself some of the issues may never come to pass, it's a roller coaster of emotions but it must be worse for the sufferer.

[Tz2388 in reply to gypsywoman1947]

We all have those moments, exactly as you wrote them, but everyone's issues come at different stages. You just can't foresee the course of events. It is good to be informed so that you can recognize problems. This site is a Godsend! I find I'm doing things I never dreamed of and being very, well, somewhat, competent. I become very busy just dealing with the latest thing, so that makes it easier not to worry about what's to come. Unless, it's something you can take care of now, like finances, etc.

[peterjones in reply to Tz2388]

hi t388 I think I would put him in the back seat now mate peter jones queensland Australia psp sufferer

[Folliott in reply to peterjones]

????? I guess I am thick but don't understand your comment.

[jimandsharynp]

You have to remember that he is feeling quite lost at the moment. He has an incurable disease that is going to take his life. Maybe he enjoys the interaction of you helping him through this difficult ordeal. He may just crave your attention and it gives him comfort in some way. As caregivers we've not walked in a PSP patient's steps and in no way can relate or even say for sure how we might react in the situation. Oh we THINK we know how we would react but I don't think we have a clue. Jimbo