Getting slightly desperate

What a thoughtless remark the nurse made. I think it is totally understandable that you feel as you do. Paranoia is not only sad, it is frightening. I have no idea how you cope but you are doing an amazing job.

Thanks, luckygirl.
All we can do is be there for them when they need us, and keep telling ourselves it's not their fault that they behave the way they do.
And get as much help as we can from family and friends who understand. Even though it hurts, the rest doesn't matter really. We know they would be different if they could be. Remember the good times.

I was quoting kitty from fri 15 evening. Sentiment remains the same even though I hadn't "turned the page" which I posted above. It's rotten to lie awake worrying. I've caught up with the posts now and it's a very sad story Luckygirl. My heart goes out to you. No practical advice as I've no experience of PD, although it is in my family. I hope you will keep coming on here to share your feelings. It seems only recently thst you were thinking of moving house, and weighing up the pros and cons. Your poor OH seems to have deteriorated quickly.
Apologies for my somewhat muddled posts. A few problems here as well! My thoughts are with you and I hope you can find some solace with your choir meetings and other outings. X

I'm so sorry it's been such difficult day today amongst the many hard days you've been having recently luckygirl and tough times for you too maw
This stuff is indeed no respecter of persons and indeed sometimes it seems that the loveliest of folk have the biggest burdens to bear in life.That's certainly the case in our extended family.
Like others I wish I could do something useful but know in reality that all the support in the world can't mend something that isn't really fixable.
At this point in time I'm acutely aware of being one of the "lucky ones" with both of us still in good health but well know that could all change in a whisper. It sounds so trite to say I'm thinking of you, but yes I am x

It does feel like a bit of a tough life sometimes - some days I do not cope with it very well; others better.

I am sorry for all you went through with your OH durhamj - life can be grim sometimes.

Luckygirl, I noticed near the beginning that you wondered if being under a neurologist would be better.
Mu husband had cerebellar ataxia, which is a bit like motor neurone disease, so he was under a neurologist.
It's a very rare disease, so every time he went to see her, they were doing tests on him. They even sent taxis so he could be watched by students; it made him feel like a specimen rather than a person. It might be different with PD, I don't know.

A problem with going to hospital to sort out the meds is that they could put all symptoms down to the PD.
They did that with my husband, and missed the brain tumour at first.

Not easy, is it, being the medical dictionary, the nurse, the bottom wiper, the diary? You have my sympathy. Not much of a life, really.

Sorry, that was a long way back

As kitty says, Luckygirl. xx

Sending positive thoughts Luckygirl. Wish I could do something more constructive x

It is indeed the luck of the draw.

When I went out the other day for a short while I left my smartphone at home by mistake. It rang to register a missed call when I got back and it was from my home number. It turns out OH had been researching on the net how to block messages and had tried to stop a call getting through by wrapping the phone in foil - he thinks I send messages to potential lovers on the phone. It is such a trial. It sometimes seems as if all is well and then these things happen and you know it is all there simmering under the surface - such a pain. I find it very stressful.

Feeling for you Luckygirl I can imagine you sitting in the car outside your house summoning up the courage and strength to open that door.
No easy solution, no amount of comfort of others to ease that burden, but sending it anyway.
Don't you just sometimes think "Some people just do not know how lucky they are?" Because it is the luck of the draw if one develops PD or dementia or has a stroke or any of the other living bereavements

Bad day today - been out at a school govs meeting and came back to OH looking at me in a suspicious way - my heart just sinks and I feel sick. I have been on a small dose of anti-depressant for about 3 years since an episode after surgery and I fear that it is creeping up in me again.

But at least I can still go out and leave him, which I know others cannot. I do not feel as if I have a husband now - just a man I find very hard to cope with.

It is a grim situation which I can see no end to. I do not think I am very good at dealing with it.

Bloody PD.

I hope a restorative mooch and some successful purchasing has lifted your spirits luckygirl. Keep on looking after yourself, it's a must when so much of your time and emotional energy is focussed on your husband's needs. Good wishes to you and all who are treading that precarious and demanding path

My heart goes out to you Luckygirl. You were so helpful to me on another post, so thank you, it gave me confidence to cope. I don't have enough knowledge to offer advice about PD, but think that there is no excuse for the uncaring way the nurse spoke to you and think she needs feedback on how it made you feel. There's lots of helpful advice posted here already, but it so important to try and prioritise your own needs (difficult I know), by doing things for yourself as much as possible. Big hugs.

Luckygirl, enjoy your mooch and I hope it feels somewhat restorative. Yes, stress is cumulative and we need to learn to help ourselves to 'bust it' now and then. I feel a.n.other thread coming on...

Hope you have a more positive day xx

Perhaps you might need a little refreshment....a lovely cup of coffee and a cake may cheer you up, go on you know you jolly well deserve it!

Retail therapy, even only window shopping usually does the trick

The PD nurse told us about the problems at the hospital - it is not personal experience I am glad to say. She told us that if OH is ever admitted we must let her know so that she can go to the ward and kick arse to make sure he gets his meds at the right times.

Feeling quite down again this morning - accumulated stress I guess; but I may go to town once OH is safely up and about. I have a plan to try and buy a mix of vintage tiles to go behind our new wood stove. A mooch about will perhaps do the trick.

When you have no confidence in a hospital I agree you fight tooth and nail to keep someone out!
But that is a sad reflection of the PD awareness of the hospital - worth flagging up especially if you can give them concrete examples.
I found a bit of (extremely polite and pleasant) but nevertheless a**e kicking very useful on one occasion especially as they knew I had the facts ready in writing for a formal complaint if I felt it was necessary.

Unfortunately the local hospital has history in treating PD patients (who are admitted with some other ailment) on the ward inadequately - not understanding the need to keep the medication coming at regular intervals. The PD nurse has had to intervene to make sure that they are properly treated - so one of my aims is to keep him out of Hospital!

A previous poster said You may also want to consider requesting that your other half is taken in to hospital for a complete and thorough medication review.

This could be a good idea.
It is easier for hospital staff to deal with any behavioural problems caused by adjusting medication, than it is for you. That is why only 'tinkering' can be done for someone while they are at home, but a much better assessment of the situation can be done in hospital.

I feel for all of you whose husbands are suffering from these terrible diseases of a degenerative nature. You put up with so much, my grandmother had PD, and my mother, poor dear, cared for her until the end of her life. This was her MIL who had shown her no affection in all her life, how she cared for her is beyond me.
I suppose you take it one day at a time. I just hope tomorrow is a good day.

Sorry no help but thinking of you x

Like others, I admire your stoicism, Luckygirl.
Living in that kind of situation, couldn't you set a few hours aside every day just to think of yourself?
For your own sanity.
Same to others who are living with similar trials.

Lucky, it must seem so unfair that your husband harbours all the awful thoughts about you when we know that you g Ave always been a huge support to him.