OH so mentally unwell

Oh Luckygirl this must be hard to witness.

Same for you gillybob and as kitty said that was very kind of you to post in your own turmoil.

I hope both of you get some respite soon and that the cocktail of drugs your husbands are taking can be better tailored to bring some relief from this hell you are going through. x

Just come across this thread as I am away from home. This must be so harrowing for both of you Lucky and Gilly- I have no words worthy of what I am trying to say.

Lucky, not having access to the Head of nursing or the GP is just so wrong. Could you go and tak to your own GP and ask him to visit perhaps.

Just can't even begin to imagine what you are all going through, but am sending good vibes and hugs and courage. xxx

This is so hard for you to see and be unable to relieve the distress Luckygirl and Gillybob. There is no single answer to these problems as each person reacts differently to different drugs. All you can do is to keep prompting the medical staff and supporting your husbands. I wish there was some way we could wave a wand and ease their suffering, thinking of you both

Find out when the doctor does his regular rounds (and his phone number) then make sure that you are present in the room when he comes. You can then voice your concerns and speak for your husband.

Nursing and care staff in homes seem to be so desensitised, (immune?), used to things that it becomes normalised for them.

Gillybob, we had a voice recorder in Mum's radio and discovered exactly why she was so wary of two particular care staff who worked together. They shouted and scolded her just like a naughty child. The home's manager was most interested when we played it back to her!

Oh gilly - I am so sorry that you are going through the same thing with your OH - it is so distressing. If it is any help, my OH was like this after surgery and they said it was post-surgery delirium and not at all unusual - and it did resolve at that point. The paranoia now with OH is caused either by his PD or by the drugs. But please do not despair - my OH's problem really did resolve after surgery - I was told that it generally does when surgery is the cause - so please take heart and hang on in there.

OH now has a new GP from when he moved to the NH and the "surgery" is a massive conglomeration of about 6 practices - it is almost impossible to get through to someone - the nurse at the home tried yesterday morning and was told she was number 33 in the queue. If I even got through I would not know which doc to speak to - he does not know any and they do not know him.

Have just rung the PD nurse and she is going to speak to the old age psychiatrist for advice, and ring me back - who knows when? I was going out this morning but will hang about here to see if she rings back.

The support of all you kind people is so much appreciated. I am not really a miserable old woman; but it is hard to try and be jolly. I thought I had got compartmentalising my life sorted, but it would seem not.

Hang on in there gill.

Luckygirl firstly so sorry to read this.

Secondly, Do you have Power of Attorney for Health and Welfare for your husband? If so then you have a big say on how he is medicated. Bypass the nurse and talk to the doctor yourself.

PS I think you have to insist on seeing at least one of the GPs.

lucky I have watched your struggles over the years and admire so much your tenacity.

I can only echo the very good wishes on here to both you and your DH.

gilly I have noticed recently that you hadn’t been posting, and now I know why. Please accept my very kindest good wishes, and hope that your DH will soon be well.

Please don't let them fob you off or put you in the background. You can ring the surgery and ask for the designated GP to phone you at home (although speaking in person, at the home, would be better).

OK, the PD nurse will talk to the psychiatrist but still you should talk to the GP. (We did this without power of attorney.) You are the one who knows your husband best, you know his normal behaviour - and when things are not normal. I'm afraid that you have to be really loud and pushy!

It is really sad that Parkinsons and Lewy Body dementia are linked. Can I suggest that you join the Carers UK forum, where others have had similar experiences? Who is paying for his care? Are you aware of NHS Continuing Healthcare for those with the most severe symptoms, free care for the rest of his life?

How about seeing your own GP Lucky- who probably was your OH's GP too- and see if s/he can support you here, somehow.

lucky, can you ask for a gp visit and be at the home yourself to talk to the gp - loiter with intent in the foyer?

I’m so sorry to read this and can empathise with your feelings of frustration and anxiety. My only experience is with our eldest DDs schizophrenia and my Dads delusions when he had dementia so not identical. Both times I initially tried to argue with them and bring them back to reality, which was both cruel and useless in my experience. I didn’t play along either but learnt to see and say things from their perspective eg that must be really scary for you, however you’re safe now.
I will ask though if your DH has any signs of infection as this always made my DDad very delusional, or might exacerbate your DH’s historic PD? A long shot I know.
I remember how out of the loop I felt on my DD’s many hospital admissions. However it did allow staff to observe her better so is he poorly enough for admission? Nursing staff aren’t usually MH trained in my limited experience. If you can’t speak to the CPN then liaise daily with the nurse in charge of the home so there’s a more accurate understanding of the nuances of your DH’s mutterings. Hopefully this’ll be fed back to both staff and the CPN. MH is so complicated and poorly understood but I second your concerns of reducing/altering/increasing drugs almost ad-hoc as it doesn’t seem logical to know which one is causing an issue that way. Unfortunately it’s a regular thing in my experience. You are his best advocate But you must look after yourself too. There Will be a Carers support group close to you, maybe initially affiliated with the local MH hospital. Find other Carers and get support. Also take regular breaks and be kind to yourself. I was wisely told “don’t ride the waves. Instead learn to watch from the shore”. It meant I was riding every up and down with DD and soooo stressed out. I’m still trying to observe from the shore without getting so dragged in emotionally to the experience. Good luck x

Luckygirl this is awful for you! Sadly, about 50% of people with PD have a form of dementia, and are subject to hallucinations (see, hear and feel things that are not there) and delusions (fixed beliefs not based in reality). Unfortunately, some of the drugs to relieve the motor aspects of PD make the mental symptoms worse. It is worth trying different drugs and doses, so the medics need to do this liaising with the PD specialist nurse. However, you need to INSIST they do nothing without consulting you first! Acting after a chat with a care worker is not adequate, and we all know that care home records can be patchy, not to say inadequate. You can write to his consultant setting out your views. If that does not yield an adequate response, write to the Clinical Director of the trust for whom s/he works. That tends to concentrate their thoughts! Alternatively, contact PALS (Patient Advice and Liaison Service). The local Care Association can provide support for you. I've been there and got the t-shirt: it is awful, but you will get through this. Sending hugs.

My husband has dementia (PCA) and although we are only in the mid stages I read widely, concerned about the future course of the illness. I have followed your story with sympathy and concern. I have been wondering about the various support groups for better information on drugs. Dilly mentions the Lewy body link. There is a Facebook group that may have knowledgable experience apart from the official group. Rare dementia support may also have useful info. My best wishes for you finding some help.

Really sorry to hear this Luckygirl I can only imagine what he'll you are going through and what frustration with the inability to talk to the staff.I can only say 4 years ago my husband was in hospital on some very strong drugs which had a bad effect on his mental state.He accused me of sleeping with the doctor ,stealing his money and thought he was on a train.He was horrible when I went to see him and lost the ability to feed himself and kept trying to escape every night.Long story short he came out the other side after a month of hell that I will never forget.He appreciates what hell he put me through and it is behind us.I hope you find a solution and the support you deserve.

What a hellish situation. You poor thing. Can I just say that I think an ordinary GP, with the best will in the world, isn't an expert in every manifestation of every condition and drug response to it. The PD nurse contacting the specialist Psychiatrist is the best bet. S/he'll have experience of exactly this situation and should know the best way forward. Could you actually contact him/her yourself? Their secretaries can be helpful on your behalf prompting them to return calls? I do hope so.
Fingers firmly crossed for you.

Luckygirl
Gillybob
I wish I had some 'words of wisdom', I don't, but send kindest thoughts to you both

Which meds is he on Luckygirl and which is being reduced?

Oh dear. Maybe the poster comes from a country where young families have photos of there in-laws around the house? I know we didn’t when we were young. Also she’s spending her birthday with just her husband. So? My eldest daughter lives 80 miles away and works full time. Youngest daughter is closer but also has a demanding job. I would never expect them to come for my birthday unless it was a weekend and even then I wouldn’t expect but would be pleased if they did. Same at Christmas. Had a few years when daughter and son in law first married and they said they wanted to stay at home. Ok that’s fine. But now they do come which is lovely. You don’t own your children. Just accept their decisions

Jan16 I think you've posted on the wrong thread.

Lucky girl
All my love to you both, I have nothing else but this to give you[

Every sympathy.

My father in law had this with vascular dementia.In the end we just use to go along with it.When he was been nursed at home he thought he was a prisoner and his wife was his guard
We just used to listen let him get it all out and than he was clam. Sometimes we had a few lucid moments and they were priceless

So sorry for you Lucky, and for your DH as well.
My husband suffered from Alzheimers and vascular dementia for 6 years. He used to accuse me loudly in public, such as in restaurants, of trying to poison him or put a bullet in his brain.
Most upsetting.