This is a hard post. I'd value your honest opinion. I was dx 5 years ago and for a while continued to function 'normally' working 4 days a week, haing another child (we have two now), running the house. But lots has happened since the dx including losing my fatheR, having work problems on returning from maternity leave and a decline in my health. I ended up getting counselling to help me address the dx and as a result I have moved to a point where I want to make the most of what I have, cut my cloth to my means and try unto eventually give up work. My partner is resisting hard and seems to be having a very hard time in understanding and empathising with the dx. I'm trying to understand it from his perspective (the future, financial worries etc etc) but am getting little back. I've got more slapdash with house chores because I get to the end of the day and I'm whacked so he's taken lots more on. Which is wonderful in one way but he is so resentful its not really worth it. How have you managed to protect and adapt your relationships? I'm close to giving up tbh.

I also have to add that I recently went to visit a friend who has a similar but more progressive condition to PD. the care her partner gave her made me think I won't ever get that. It makes me really sad. What can I do to remedy this? Ideas?

Hi Quarkie

So sorry you are struggling at the moment.

I guess reality has caught up with him, while you are working, looking after the kids etc he could tell himself it is all ok, as you are finding it more difficult and need help it is probably frightening for him, he sees all the life you planned together going out the window.

He is feeling the burden of a huge responsibility on his shoulders of being the sole wage earner,having to look after the home after work, and becoming a carer for you potentially, and then there are the children. Men like to be in control and he can feel it slipping away.

Has he seen anyone about how he is feeling (Not always easy to talk to you partner if they are a part of the problem)

My husband went to a counsellor when he lost his mum and our little dog, then I got my diagnosis and it became all too much. It really helped him to talk to someone who was not directly involved, it really helped him and now we are closer together.

Caroline

I think that Caroline's analysis and advice are very very insightful and wise.

The only thing I would add is I would be very careful how you suggest he might need 'help'. Men can be rather touchy on that.

Hello Quarkie,

So sorry to hear you are having these problems, but you are not alone in this situation. My husband has had pd for thirty years and is still only 68years old.We had a young son and I was already disabled, we didn't have much money but we found a cleaner who came in to do the main cleaning and ironing so that my husband only had the garden and shopping to do, this was when I was housebound. I eventually got slightly better and we bought an electric wheelchair which has opened up my life, it is nothing to see me going around our small town loaded up with shopping and all the assistances are very helpful.
I agree with the previous comments, but I also think that you need to sit down together if you can and discuss what you both think would make your lives easier, therefore taking away some of the stress and concerns you both are bound to have.
We used to have two groups one of people with pd and one for the carer's this proved really useful for both groups knowing that others understood and it was all in complete confidence, but as you may not be ready for this or it may not be possible in your area, a counsellor/pd nurse would be able to help and possibly reassure you both.
My husband had to give up work at 46yrs old and of course I couldn't work anyway so we had big adjustments to make and a lot of worry, but life is all about changing to a different path for one reason or another and I am sure you will see this in time.
I have always felt that there should be more support for carer's especially in long term conditions as we want to do our best for our spouses, but we are on a long learning curve as well.
All my very best to you both and good luck.
vivian

I have suggested counselling for us both but he's said no. I think there could be some mileage in the PD related counselling though. It's so hard to know. Thank you so much for all your wise advice.

ps you could try 'I need to go to a pd advisor but i need some support, can you come along to help me get through it?'

turnip (traitor to his gender)

I totally understand how hard it is i stopped work 3 yrs ago and i was 36.I struggle keeping up with my 8, 6,and 2 yrs old kids. I always try to make sure i never shut my husband out and talk. If i struggle i ask my friends or try to get someone cheap to help with chores. Its awful at times especially tryiung to hide my symptoms from the kids just to protect them even though they know and are willing to help

i would just like to say that my wife me becasue of this illnesss yes 31years down the pan my doc said that he would see her 1 to 1 but did not want to said didnt want to kown so now at 54 years old it looks its going to be a long run in

thats very sad d1d2d3. my sincere sympathy.unfortunately not a rare event.
t