Guests for 4 days

Thanks corner - his family were a bit dysfunctional and he just used to pretend they were not there. But it is not easy to hold a conversation about it now as he has PD - I just feel a complete rat if I try and talk to him about something like that - that's why I am talking to you lot!

It is very hard - I am torn between the wife/carer roles and normal relations in terms of treating him as a grown adult responsible for his own actions are difficult to sustain - and it fluctuates. I am finding it very stressful. Is he my OH - an equal partner or not?

Our DD had an experience some years back. She was living in a one bedroom flat with her at that time boyfriend. They just returned from skiing trip when an aussie relative rings to say can they pick up her son from Heathrow in 2 days and put him up for a couple of days. This couple of days turned into 6 weeks and she had to tell him to go in the end. All that time he slept on their sofa and had the habit of ringing his girlfriend in the middle of the night (time difference) waking them up.

Sorry, lucky, had forgotten the PD. Wondering now was your OH the same before onset of PD? If he wasn't then I guess his behaviour is illness related. If he was then it's habit. Mr C doesn't have illness as an excuse reason! Either way would he be OK with some simple and very clear 'instructions' about how he can be more helpful next time round? Along the lines of 'it would be better if.....'. Yes, a lot to adapt to and keep adapting to as time goes on. I was lucky, my Dad had PD but mildly and although he became more definite about things he remained himself. Rant away here if it helps. It is a difficult path to tread. Your current hosting will soon be over, maybe think hard if you can accommodate some guests in the future. Nearly there.

Then tell him Lucky before your resentment explodes. It's quite rude to watch TV or read when guests are there, except possibly in the evening if there's a programme you all want to watch, together. And it's a bit much to expect all the burden of conversation and entertaining to fall on your shoulders.

Only today to go, Lucky. You sound as though you are between a rock and a hard place with DH. As corner say - rant away on here.

Thanks Gransnetters - your support is much appreciated.

Rock and a hard place indeed. The truth is he has always been a bit inclined to want to just sit at home and do nothing - going out anywhere, even to family, is a major production now. He always left his family to me to deal with but there is only his sister left now, so it does not arise so much. I guess one of the reasons I was so anxious about this visit was that things are pretty strained here anyway and adding someone else into the mix is a problem.

It is as if the PD has just furnished him with an "excuse" to become more and more reclusive - I feel a real bitch saying this as he is not well I know, but it is just more of the same only with knobs on.

We went to DD's yesterday (10 minutes away) and he gets very anxious in the car and just goes on and on - left hand down, you are not doing as you are told etc. Then when he is there he says he feels ill and just wants to come home - goes on and on about it. Then when I finally give in and bring him home he is right as a trivet when he gets back. Or as right as he ever is.

The dilemma is that I am tossed from carer to partner role from one hour to the next and I do not know what I am meant to be doing at any moment. It is a weird situation.

But really he just wants to close his life off and I don't want to do that yet - I know that sounds selfish and makes me feel awful, but I cannot share this decline into doing nothing and going nowhere without going steadily nuts.

You are not being selfish Lucky, you need to care for yourself too.

Is there any help available from a Parkinson's charity? (Showing my ignorance there) I think you have mentioned Parkinson's related dementia (sorry if I've made a huge leap there) but you could contact Alzheimer's Society for strategies to help you cope.

And, of course, GN is brilliant!!

It is indeed!

Our guest has just left and it feels like a relief - I can stop pretending all is well now - a bit stressful that!

I do not think he has active PD dementia, although there are early signs of problems; but they are difficult to disentangle from his overwhelming anxiety which has become massively worse recently. I think the anxiety slows him down mentally as well as physically - he is sitting shaking and some of it is PD and some anxiety.

Things look a bit bleak at the moment; but no doubt I will pick myself up when the strain of the last few days subsides and be better able to do the right things.

I have only just read the last couple of posts in this thread but just want to say luckygirl I am there with you all the way, I know exactly how you feel,
Some days I don't even feel like a carer, I feel almost like a old type nanny looking after a very difficult child.
I certainly don't feel like a wife as I don't know this man I share a house with. Moan away, I can actually tell my H off and be quite awful to him as he doesn't take much in and has forgotten anything said to him as soon as the conversation is over.

Oh ann - thank you for your post - I know you are going through far worse than me and you have all my sympathy. I just think your "old type nanny looking after a very difficult child" hits the spot - it truly does feel just like that some days - well, most days really.

I do know this man I share my house with, as many of the problematic traits have been there a long time - they are just hugely exaggerated now by his PD. Some days I don't know who he is - I know that sounds mad, but is he a rational person? - is he going crazy, or might it be me? I want to help him all I can, but I also need to retain some normality somehow. The children are wonderful, but even they do not know what is really going on - they have their own lives to lead and I want them to enjoy themselves, not worry about us both.

I need to just go out for a walk now and get some fresh air and birdsong - and I do know ann that you cannot do that and send heartfelt good wishes to you.

This is all so sad. Sending you both

I have two husbands. My lovely kind, smiley and sexy hubby on the week before chemo and a complete selfish git who is possessed the week after chemo. A side of him that has never existed before so I know it is the drugs but bloody hell!
I find it so hard as he can be really mean on the bad week but although I talk quietly about it when he's better to explain how I feel, it makes no diff. I have written it all down as well and still no diff.last kid just left home so our precious time now so it hurts more that time is wasted by being angry and upset.
Sorry gone a bit off thread here

Melanie it does work both ways, our visitor who expected his meal served in front of the television was English, his wife was Australian. Both as silly and lazy as each other. Years later when their marriage had broken up he was still the same.

Another friend who is English had a UK visitor staying at her house for three months. He had migrated to Australia and was able to work. He would ask what was for his packed lunch and never paid for one thing. He then moved on to Perth and set up a bed and breakfast type place and wrote to my friend that he was doing very well. She was not impressed, but she should have spoken up instead of putting up for three months feeding and waiting on an adult.

Well done luckygirl you have made it! I hope you are rewarding yourself with a big and maybe a croissant and the peace and quiet of a house once the guests have gone.
What you say about your DH not enjoying going out totally resonates with me (and my DH, while he has many chronic issues, does not even have the added complication of PD)
Trying to find an excuse for not going is par for the course and I sometimes have to turn a very deaf ear , also wanting to come home even when an early departure is quite impractical. It takes much of the joy out of planning any event or visit. Even a visit to the cinema to see a streamed performance of Twelfth Night yesterday (30 minutes away, easy access, comfy seating) was a bridge too far. I knew as soon as he woke up it was doubtful, the pained expression, the backache, the trips to the loo because of his diuretic, the grumpy reminder that I had failed to book him a podiatry appointment......
Saw it coming but tried to ignore it!! In the end I just went on my own, but got a chilly reception when I got back because he "had had to have a lie down" in the afternoon.
Some battles are worth fighting, with others I just keep my counsel, have a and try not to seethe inwardly.
I know I am not alone in this, just KBO as my dad used to say!

This reminds me of an old Jewish joke.
A man who had a big family went to the rabbi for advice - "I can't cope any more, too many people in the house." The rabbi thought for a moment then said - "take in a donkey."
Puzzled the man went off, took in a donkey. Soon he was back again "it's worse now". The rabbi said "take in a dog" again the man did as he was told.
Then followed a cat, a cow a few hens etc. At breaking point he returned " Get rid of the donkey" the rabbi said, which the man did.
Soon he was back, relieved: " Things are so much better now - so much more space!"

I am living with the donkey!

It is indeed hard having two husbands and I am sorry Menopaws that your OH is having to undergo all this - and you. And Maw - how I do understand the business of working up to an outing, however minor. We were only at our DDs - 10 minutes away - yesterday and it was time to go home straight away as far as he was concerned - I held off as long as I could as I was having a great time with the GC, but in the end I could not cope with the pleas to leave - it is such a pain. DD offered him a bed to lie down, but that was not good enough - he had to be home. Sigh.

I am out doing some gentle gardening today and that is very therapeutic.

I have a friend whose husband never wanted to go anywhere, just stay home and watch TV. She told him he could stay home but she was not going to put off friends and family to stay home with him. He has now developed Parkinsons and she takes excellent care of him but still keeps up her social life. At the moment he is OK to be left alone, although she does sometimes arrange for family to stay with him. She loves him dearly but knows she also has to take care of her otherwise she will be no use to him.

There are some unsung heroines here. Flowers gin cake and wine to you all.

I agree with your comment Stansgran....thank goodness for GN support!

Sorry i made the leap, Lucky!

I agree with Stansgran and will stop moaning about DH dragging me to two modern jazz concerts in one day!

Please feel free to leap!

TBH if I had to go to two modern jazz concerts in one day I might be consulting a solicitor!

Tradition but not modern

sorry, traditional

Currently having a lie down before dinner and the next one! This afternoon's was dire - even dh thought so! I will enjoy tonight's as it's Snarky Puppy!

Seriously, my lot in life is not difficult (for now!) and those of you really coping with dhs with difficulties have my full admiration.

Glenfinnan please "just say No"! Tell them your reasons, which are totally valid. They can stay nearby and visit for a meal or whatever. You're NOT being a wimp!