Getting slightly desperate

Oh, luckygirl, grumble away, you are allowed to. Making a fuss? Of course not. It sounds as if your PD nurse just hasn't grasped how difficult it is to live with such paranoia. I don't have any suggestions to offer other than please tell your family and every medical person how difficult this is to manage and how worried you are. Can someone be with your husband for a few hours to give you a break and allow you to re-charge a bit? Sending you hugs and love with a hope that someone will take the need for a proper medication review seriously, tinkering doesn't sound the way to go.

This sounds awful, maybe one of those cases where the side effects of the meds are just as bad as the condition they are aiming to control. Psychotic symptoms have long been known as a side effect of PD medication, and you should continue to draw the attention of those prescribing his medication to this unwelcome side effect. Hopefully you can get some respite to help you cope.

Don't feel you have to apologise for 'grumbling' Luckygirl, you are having to give out so much. Very disappointed for you that the nurse seemed so unsympathetic and worse!

Some close family members have suffered from paranoia. The unpredictability and feeling of vulnerability that it brings to the supporter are just horrible. You have all that to contend with and a natural sense of grief too. You need to be supported better.

I don't mean to pry, but I hope you do have people who are more helpful around you. If you do not feel 'safe' with OH, you need to make sure that you are heard and take advice. I think we can put up with so much because we love and we want to do all we can, but there is a line where your own safety and well-being need to be put first.

So sorry you are facing such hard times xx

PD nurse wasn't very helpful was she.

You say they're tinkering with his medications - I think you need to press the Neurologist to have a complete review of all the medications. Many patients, not just those with Parkinson's, are over-medicated particularly if they have co-morbidities.

Thanks for the support. I am lucky in many ways as I am still able to leave him on his own for short periods - I ring him to make sure he has taken his meds and is OK; and I have the kindest and most loving of families, who are sad alongside me and support me in every way they can.

He was a highly respected professional and this decline is painful to watch. I have a wee GS for the day today and that always brightens me up - and OH too - so I have that to look forward to.

Gransnet can always be relied upon to bolster me up - hooray for that!

Luvkygirl my heart goes out to you.
You are dealing with far me than me but not knowing where the man you married is the one thing we have in common.
It is so difficult living with, and caring for someone who seems like a stranger.
Your PD nurse was unkind and uncaring.
I hesitate to say this but I was on a course with a woman whose H had PD and the dementia that went with it and I pray in your case it is the meds.
You must persist in trying to get it it sorted with the medics to know you are doing everything you can
As Maw said on another thread, we didn't sign up for this, and I know we took those vows all those years ago, we are now being tested to the limit to keep them.

His consultant is an age care specialist - not a neurologist. We are in a rural area, and a neurologist just visits. I wonder if he should see a more focused specialist. He has AF as well which increases the meds load. I think he is over-medicated; and TBH just getting the right stuff down at the right time of day is a massive sliding block puzzle.

There is an appointment with the cinsultant in two weeks and I will broach this subject.

Think you may be right. luckygirl and different expert advice is needed. Pleased you are able to get out and a grandchild always lifts the spirits, if adding to the workload . I don't suppose there's any chance of a change of PD nurse? That might help as well. .

luckygirl I really feel for you, it has to be akin to "losing" someone to dementia and the more cerebral the person, perhaps the greater the loss.
That nurse was entirely out of order and I agree entirely with you. Sadly paw now needs personal care and I admit I thought that would be a no go area but it is perfectly bearable. However his confusions and disorientation when he was (more) ill some weeks ago were a million times harder to bear. Seeing the brain just not function threw me into a total panic. So stand your ground if you can and insist on an assessment by a neurologist. Sadly too much tinkering can go on by even professionals who are not specialists and while they think they are doing things, it may well be masking the true problems (or the right way to deal with them)
I can only wish you good luck - you need it

First my thoughts go out to you luckygirl it's so very hard to watch someone you love change which in turn has such a huge impingement on your own lives and those around It's a ripple effect
Most thoughtless ( I would hope) by the nurse but she should have known better what a discouraging thing to say
Sorry to be ignorant but what is AF
I too think over medication is a huge problem for many people I hope you can get somewhere with the consultant
Do take care ?

We have central heating on this morning and I have just said, the radiator in the bathroom isn't working.
H goes to investigate, do you mean the big one?
Me, there is only one radiator in there.
Do you mean the one on the wall?
Multiply this conversation by a thousand per day, 7 days per week and try not to get frustrated.

Luckygirl, I have no experience of PD, and it's problems, but I can only send you support through here. It's so good to know that you and others can come here and will be given good advice and help by people who are experiencing and coping, just about, with all the trials that it brings. You've gone through a lot lately, didn't you move recently as well?

Just wanted to send you ?luckygirl and echo what other posters have said. You are right to seek further opinion. Take care.

Could one of your family members support you to try and get specific help for the paranoia, luckygirl? Its a shame the nurse was so blase about your genuine concern. I think they sometimes forget that its people with emotions they are dealing with. I hope that things get a little easier for you.

OH was admitted when he last had his tablets changed , easier to monitor what was happening , I hope he gets to see a Specialist at least

He has been OK today as far as paranoia is concerned - little GS has been here and that always helps as he cannot brood on these strange thoughts with nappies being filled and water being spilt!

The problem is that although he does not always say what he is thinking, I find out later that he is harbouring these paranoid thoughts but just does not say them. Once he starts voicing them he finds it hard to stop.

ann - I am sorry you are under such relentless stress - it is so very hard I know. Those seemingly small and unimportant conversations are what grind you down.

When someone is taking a lot of different medications it can be helpful to have a meds revue with the local pharmacist. In a rural area he or she may be more accessible than medical consultants and may be more knowledgeable than your GP or nurse when it comes to possible side effects and iteractions of a cocktail of prescription drugs.

Sending kind thoughts your way

Gratefully received.

Life has just got even more complicated as I run a musical group that is open to all-comers; and 20-odd years ago it was severely disrupted by a sexually predatory female who broke up a family - and has gone on to break up several others since. She has not been part of it for decades.

She appeared and asked if she could join and I saw no reason to say no - she is older now and the males in the group are solid and not at risk. However, I have had messages indicating that some of the regulars are not happy with her being there, so I have taken the decision to ask her not to come - I have too much on my plate to be hassled with this and the group is one of the few really enjoyable moments of my week and I do not want to see it disrupted. Everyone is comfortable in each other's company and I do not want that upset. No doubt there will be some flak to take, but I just felt I had to nip it in the bud. Have I done the right thing? - who knows? OH is anxious about it as he thinks she will give us grief - I will have to wait and see.

Nothing useful to say, just sending sympathy.

Luckygirl - with regard to your musical group, you had a situation, considered it, and made a decision.

have you done the right thing you ask ---- Yes, you considered the situation and made what you thought was the right thing to do. That's enough, all that anyone can do.

If there is any flack - the lady can be told that her previous behaviour unsettled the group and that you had to reconsider the majority feelings.

Have you yet to tell her? If so, I hope it goes as smoothly as possible.

I emailed - a bit cowardly I guess but I simply do not need the hassle.

Thanks for being supportive. I had already had my fingers burnt with her previous behaviour and just don't have the capacity to deal with it again. We are such a happy group and have welcomed many people over the years who have gained so much from it. I just cannot see that blown out of the water.

Two of the groups I attend have recently been completely spoilt by new members. One I am considering leaving. Such a shame. You ate quite right to put the group as a whole first. The suggestion of a chat with the pharmacist is a good idea. I had a review with mine recently and it was still illuminating. They r more knowledgeable about side effects and drug combinations. You have to keep pushing now to get the best out of the health service. Keep strong!

I have nothing helpful to add, Luckygirl, but sending you love and support.