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OH so mentally unwell

(96 Posts)
Luckygirl Tue 03-Dec-19 22:08:40

I know I am always on this site with some tale of woe - so apologies for that.

Over the last few weeks OH has once again developed paranoia. No-one seems to know if it is part of the PD or the effect of one or more of the drugs being used to treat this illness. It is a problem that has recurred many times over the last few years, but we have always seen an improvement with drug changes.

He started to have serious paranoid delusions again a few weeks ago - screaming for help, calling the police from the nursing home as he was convinced he was going to be killed - but this was intermittent....very bad when it was happening but lucid and happier moments in between.

One of his drugs was halved to try and alleviate this problem, but shortly afterwards he became totally locked in the delusion that there is a plot to kill him - he talks about absolutely nothing else and is in a state of complete terror every waking moment - it is pitiful to behold. This has been going on for two weeks now.

The PD nurse seems to be mainly in charge of dealing with this and she advises the GP - her plan is to reduce another of his drugs, but it makes no sense to me to be changing another one - it will be impossible to make rational decisions about which is the best course of action if more than one route is being experimented with at a time.

But I have said this to her - well, by email, because she is so hard to get hold of - and part of the problem is that she is talking to the staff at the NH and basing her decisions on that, when in fact the staff are not fully aware of the severity of the problem because they do not cotton on to the back story of what he says. Some of the time they get it when it is very upfront; but there are times when he will say things that they just think are a bit dotty, but are in fact of much more significance - for example he will say "Where shall I sit for the process?" and they just dismiss this with a smile - but we know that he is asking when the slaughter process will begin - he believes he is going to be cut up and put down the sluice and calls this being "processed."

I did not go and see him today - I just could not face it. My DD went and was deduced to tears. If he was demented and completely out of it, that would be dreadful, but I think I might be able to begin to try and deal with that - I just cannot stand the sight of him in a state of terror every waking moment - it is so dreadful that he should be suffering in this way and no-one seems to be able to help him.

Luckygirl Tue 03-Dec-19 22:10:02


M0nica Tue 03-Dec-19 22:20:46

Luckygirl my every sympathy. Life really is so difficult for you at present. Post whenever you like, if it helps you.

I have never had to encounter the problems you have but I understand only too well the problems of dealing with medical and caring staff when you are constantly unable to contact them face to face. Could you write up the problems with his paranoia on a sheet, put it in an acetate sleeve and leave it near his bed to explain his problems to carers ad what his language means.

I did this when my uncle was in hospital. He used to get into a state whenever separated from his wife so I typed out a sheet explaining this and telling care staff and medical staff what to say to him when he started fretting about where she was and whether she was alright. It normally calmed him for at least 30 minutes and often longer.

Meanwhile we are always here to listen. Who knows when we may be in the same situation.

Alygran Tue 03-Dec-19 22:23:55

Lucky I’m sorry but I can’t help with any insights but I didn’t want to read and run.
Just to say I am thinking about you and hope you get some better support and answers soon.
flowers for you and your DD.

Doodle Tue 03-Dec-19 22:25:39

No words of advice luckygirl just praying for the situation to improve for you and your DH. So sorry you are going through this. Not sure how this works in a care home but could you ask for a second opinion on his drug care?

Alexa Tue 03-Dec-19 22:26:55

When my elderly friend was terminally ill and dying in hospital the ward sister told me if she became agitated there was medication for her.

Anniebach Tue 03-Dec-19 22:34:08

I hold you both in my prayers and send you love and hugs x

lavenderzen Tue 03-Dec-19 22:39:02

Thinking of you Luckygirl and hoping something is sorted out for your OH soon. I am so sorry to read this flowers

merlotgran Tue 03-Dec-19 22:46:17

Oh, Lucky. It just goes on and on. You have fought so hard for your DH. You must feel like you're trying to scale Everest in a pair of worn out trainers.

I wish there was more we could do other than just offer cyber support. You sound at the end of your tether.

It's all down to finding the right medication for the situation I suppose but it's hard when the powers that be are not singing from the same hymn sheet.

Hopefully tomorrow will be a better day.

Opal Tue 03-Dec-19 22:50:35

So sorry for your husband's plight Luckygirl, it sounds horrendous. I have no knowledge of PD but when my dad was dying in hospital from a brain injury and was becoming agitated, they gave him drugs to calm him and he slept most of the time in the last few days. I'm not a clinician, so have no idea whether this would be appropriate for your husband, but is it worth mentioning? Apologies if you already know about his meds, just trying to help. Thinking of you flowers

AllotmentLil Tue 03-Dec-19 22:57:20

Oh Luckygirl I’m just so sorry, you’ve had such a hard time. I’m worried about my husband’s confusion and forgetting things, it seems to have started so suddenly. So I can only understand and empathise with you about the worry but I do send love and best wishes.

Hetty58 Tue 03-Dec-19 23:12:48

The GP should be in charge of this situation. Is it his usual one or a new one who does 'rounds' for the home? Get his/her phone number so that you can discuss things with them:

Ginny42 Tue 03-Dec-19 23:18:57

GoodnessLuckygirl this nightmare just goes on and on and is taking its toll on you and your DDs. You have been so very brave and I can understand why you need to take time away from the situation. Wish we could do more, but hope knowing you are in our thoughts helps. xx

Grammaretto Tue 03-Dec-19 23:22:54

I wish I knew how to help Luckygirl
It sounds horrible. flowers

Alexa Tue 03-Dec-19 23:31:45

What is a PD nurse? Has your husband's doctor been to see him?

grannyactivist Wed 04-Dec-19 00:17:18

Lucky I'm sure you know this already, but one aspect of Parkinson's Disease is that the drugs used to treat PD Psychosis often exacerbate the PD symptoms.

I don't know if you have the mental energy for it, but you could ask the nurse to write down the current treatment plan and give the reasons that inform her choice of treatment. You then have something concrete to discuss and it can provide you with an opportunity to explain the 'back story' in more detail and to propose any other course of action that you think may be appropriate.


SueDonim Wed 04-Dec-19 00:33:45

The poor man. I’m so sorry, Luckygirl. flowers

gillybob Wed 04-Dec-19 01:06:40

Oh Lucky I just came across this thread . I am so very sorry .

I totally understand and sympathise with what you are going through as my DH is going through very similar at the minute . He is taking about being cut open and experimented on every night when I leave . Apparently “they” come out of the ceiling tiles ( he knows exactly which ones ) and take him down the corridor . He pulls the dressing from his wound as proof of what they are doing to him . There are 2 particular nurses that he is terrified of and physically shakes and screams is they come near ( one is very passive/aggressive and I fail to think what she is like when I’m not there) . He then calmly asks which side they need him on tonight ? Will they be using a knife or a drill etc. I try to convince him it’s not happening but he just keeps on and on . It is breaking my heart seeing him so terrified it’s almost worse than when he was on life support .
Unlike you I am Very fortunate as I am able to talk to his doctors and nurses on a daily basis and they tell me that it is as a result if being in ICU and various drugs for so long and it will eventually pass . Sometimes the very sedatives used to keep someone calm are the worst offenders .

I’m so very sorry for what you are going through Lucky . I think it’s so unfair that you are unable to talk to his medical professionals directly . As his wife surely you know this poor poor man better than the carers at the NH ??? Not sure what else to say really .

ninathenana Wed 04-Dec-19 07:12:26

I'm so sorry to read of this awful situation Lucky
I have no advice to give but I wish you strength to cope.

cornergran Wed 04-Dec-19 07:20:12

Please share whatever helps lucky, such a hard time for you all. I’m sorry, I have nothing helpful to suggest can only send love and a hope your husbands distress lessens. Wishing the same for you gilly. Stay as strong as you can, you’re both courageous women.

kittylester Wed 04-Dec-19 07:44:28

I echo everything on here Lucky. You know you can post as often as you like - it helps to off load.

gilly so kind to post when you are in a bad place too.

GrannyLaine Wed 04-Dec-19 07:56:21

Luckygirl, I'm so sorry to hear this, it must be very frightening for your husband and so hard for you to cope with. flowers

EllanVannin Wed 04-Dec-19 08:05:56

So distressing to see. My father went through the same thing and spoke gobble-de-gook every time I went to visit as mum couldn't face it.

I do hope that the right medication can be sought to resolve the distress and agitation.
It's seemed like an everlasting worry over these months for you Luckygirl with one thing and another and sad that it's now come to this.
Thinking of you and sending best wishes and strength to cope.

MamaCaz Wed 04-Dec-19 08:12:58

Luckygirl and gillybob, I can barely imagine how awful life must be for you both - and your DHs - right now. I'm so sorry flowers

Nortsat46 Wed 04-Dec-19 08:19:17

So sorry to hear this Luckygirl.
I have no advice to offer, only sympathy and good wishes.

My one thought is that you need a discussion with your OH’s doctor. Surely the NH staff can help you to have that.

You are fighting bravely for your dear OH ... and GN’s are fully behind you in spirit. 💐