YOU AS THE PERSON WITH PARKINSONS RELIES MOSTLY ON THE HELP OF YOUR PARTNER WHO HAS A FULLTIME JOB, IS GOING 2 BE LEFT ALONE IN THE HOUSE FOR 1 WEEK. AT TIMES YOU STAGGER FROM ROOM 2 ROOM AND FALL OVER, WHEN YOU ARE ABLE TO GET UP WITHOUT HELP, BUT U ARE UNABLE 4 VARIOUS REASONS TO DO SIMPLE TASKS THAT WE ALL TOOK 4 GRANTED B4 PARKINSONS BECAME PART OF US, WOT DO YOU DO????
IS IT BEING TOTALY SELFISH 2 POINT OUT 2 THE ABLE BODIED PERSON HOW MUCH YOU NEED THEM AT HOME EVERY NIGHT?? IS IT UNFAIR THAT THE ABLE BODIED PERSON HAS 2 HAVE IT POINTED OUT THAT, ON OCCASIONS WHERE IN THE PAST THE PERSON WITH PARKINSONS HAS BEEN SO UNABLE TO MOVE THAT THEY HAVE SPENT DAYS LAYING IN BED UNTILL BEING ABLE TO GET UP, UNAIDED AND STAGGER 2 THE TOILET AND TAKE MUCH NEEDED MEDICATION 4 PAIN , WHAT WOULD YOU DO IF FACED WITH THIS????
SHOULD THE PERSON GO OR STAY AND INFORM THEIR EMPLOYER OF THE PRESSURES OF BEING THE CARER/PARTNER OF SOMEONE WITH THIS PROGRESSIVE ILLNESS??
PLEASE ANSWER HONESTLY;- YES TO GO... OR NO TO STAY. THANX 2 EVERY1 HELPING WITH THIS QUESTION AND IT IS NOT HYPATHETICAL, IT IS FACT...

Hello Sandra 01,
I have to admit that I am confused as to whether you are asking the Q from the point of view of a pwp or a carer.
As to the "rights or wrongs" - it is my belief that there is nothing wrong in asking for the help that you feel you require.
Neither is there nothing wrong in feeling that you are unable to provide the assistance required.
It would seem to depend upon the relationship between the people involved in this difficult situation as to what is the best solution .
There are other avenues to explore - help via social serices or other agencies.
I am sorry that I do not feel able to give you a definitve answer. There is no "right" or "wrong".
Perhaps you could consult your GP, PD nurse or ring the helpline to talk about this?

I wish you all the best

I hope I don't end up offending anyone, here goes.

It seems that both people pwp and carer have been trying to do too much without outside help. Taking that step of help from strangers is a very hard one for the pwp and I know from friends that the carer can feel that they have failed in some way.

Parkies is destructive to both pwp and carer, the pwp can't get a break from it but the carer can and needs to, so they can better help the pwp to cope.

There may also be a problem with the attitude of the employer, it sounds as if the carer is being torn in two, trying to provide the practical support and the financial support.

I do think it is time to bite the bullet and seek outside help. So easy to sit here and type those words for someone else, it is one of the things I dread most for myself and I know it has to come.

Best wishes

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For what it's worth I think the carer/partner should go, because:

1. Not to do so could cause work problems, and possibly deprive them of whatever experience they'll be missing out on (whereas colleagues/subordinates WILL gain this experience);

2. Not to do so could give a false impression of disinterest or non-commitment, and adversely affect their future job prospects and any promotion opportunities. Ultimately this could lead to a lower income (which I presume you share), low morale and lower status;

3. From what you say this carer seems to have been working like a Trojan, and MUST have a break from such a heavy workload - including from looking after you (however close and loving your relationship) and your awful PD. Without a good break (of at least a week) they will be heading for a breakdown. Then where would you be?

4. Your agreement to (and enthusiasm for) such arrangements, and the implied consideration you'd be showing for THEIR well-being, will almost certainly be very much appreciated, and help the relationship between you both no end;

If you genuinely can't cope during this period, see if anyone else in the family may be available. If not you can get in touch with the social services, or contact a nursing agency for a private or dedicated nurse/carer. These can be hired at an hourly rate, at times to suit. Many on this forum use them. Your GP or Health Centre may have some ideas too. They may even have staff available.

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My post above assumes that the carer is being asked to go away for a week on business, or a training course, etc. If they're just going away on holiday or the like the issues about career, etc obviously won't apply.

Nonetheless the carer is still working like a soldier, and undoubtedly must need a break from the long daily grind, and you'd both benefit from the change. I'm sure, too, that they'd be really pleased about your concern for their welfare.

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It is impossible to give a definite answer without being aware of every fact.
But here are some things to consider.
a) the person is going off on work related business. What would your situation be if the became unemployed? How much do you rely on their income? They need to balance your demands and their employers. If they always favour you it may in the end rebound on you with a loss of income. Jobs are not easy to come by now.
b) the person needs a break. If your carer has a nervous breakdown and needs care themselves where will you be? Or worse- what if they leave altogether - if they really need a break and you try and prevent it they might be driven to make the ultimate break. What is one week without them compared to years?

So is there some compromise - where you get the care you need and they get the time they need? Put your heads together to thing of strategies for coping - because the same situation will come up again and again.

that was basically a repetition of what Ray said. I should read the other answers more carefully before jumping in!

thanx 4 all the help, and support- ish....
i am the person with pd, and have had it since my late 20 iez, now i am 45yrs however i have never relied upon my partner to deal with any of my needs on a daily basis untill recently, as 4 him going away 2 work and , working like a soldier he has only recently completed 22yrs service in the airforce however, i have and still do maintain an independant life, however at no time would i expect my partner 2 give up work and i have never totaly relied upon him untill recently as my condition has become more progressive , he would be away for months at a time whilst he was in the raf and i managed 2 muddle on, but now i do need not only his emotional support but his help, he is the one who maintained that his employment, would ensure he was home at nights but that has changed now due 2 the lack of ppl working in his feild of work in england, and the point i was trying 2 make is why should i have 2 wait for his support when i need it now, i cannot get up out of bed dureing the night at times and do not have a carer or pd nurse, and this is not me being selfish or wanting him 2 lose his job, all i want is 4 him to realise that he should inform his work of his commitments 2 me and the fact i do need some1 at home with me dureing the night.

Hi Sandra
sorry for only being support-ish. As I said its impossible to give an answer to your question without knowing all the facts and the people involved (and even then it would be very difficult), particularly when there are moral and emotional elements of what someone should do rather than just practical advice. So he has left the RAF after 22 years and has started working for some other organisation and has not told them about his commitments to you? On the face of it he should, but presumably he has given a reason why he hasn't?

Hi Sandra.

It seems the times they are a-changin', as Mr Dylan once warned, for both of you.

For many years the two of you mastered the sometimes complicated but nonetheless stimulating and evergreen range of activities and lifestyles available to you. This I suspect enabled you to put the inevitable PD decline onto the back burner "to be discussed at a later date."

Naturally the more you could block the future's inevitability out of your minds for the time being, the easier and more pleasant life was for you over that long period. Now, however, it seems various chickens are coming home to roost, for both of you.

Your partner will be going through many concerns, worries and doubts:-

Will he miss his previous leisure activities and friends/colleagues?
What will his new colleagues/bosses be like?
Will the new job be difficult?
Will you be financially ok?
Will there be more stress?
How can he ensure YOUR proper care and happiness?
Will he be able to fit it all in?
Should he tell his boss about you?
If so, would this harm his job prospects?
If his employer had to lay staff off, would caring increase the redundancy risk?

On top of all that (AND getting on with his job) he now has to decide WITH YOU on how to handle issues such as working away, respite time (for both of you), back-up carers (family? nursing agencies? NHS medical centre? au pair? etc).

You should both start to consider, together, the implications both of your current physical abilities and shortcomings AND of any possible long-term "further decline" issues. These topics should take as long as it takes to resolve, and MUST be agreed by both of you in a calm and mature way. You ARE a happy and secure couple, don't let some piddly medical condition spoil that.

There is NO ROOM in these discussions for provocative or insulting questions and statements such as:-

"Is it fair that....?",
"You ought to....",
"You once promised me that....",
"So-and-so is more important than so-and-so....",
"Over the years I've done more than you....",
"That's selfish...." or
"You'll have to give up work....".

You WILL be able to sort everything out, but it may well take a long time and require patience, respect and a willingness to give way from time to time!

And don't forget, it's NOT his fault you have PD, but he's stuck by you, just as YOU would if it were him. You love each other, THAT is what matters. Keep close. Lots of hugs are mandatory.

Good luck!

Ray.

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