OH so mentally unwell

My sympathies ! My late husband had PD, vascular dementia (could this be the case with your H ?) and then finally cancer. His behavious was erratic, aggressive and hostile. This is a a VERY difficult illness to understand and I found only those who had been through looking after someone with it had any comprehension of what is is really like …..I joined several forums for PD and it was SO helpful chatting to others in the same boat ….we shared the highs and lows , the sadness and the loss of a living person ...laughed and cried with the various progressive stages of the disease and without the support of those understanding people my journey would have been much worse ! Try to realise it is not YOU he is shouting at, (hitting, in my case sometimes) but the illness taking over, I used to try to keep a brave face on it and then cry on my own WHEN I had five minutest to spare. He refused any help whatsoever, and the lifting him after falls got too much for me, as well as the 24 hour needs when he yelled for me ...once he woke me up (he had a hospital bed in the spare room) by banging on the floor with his stick and asking why I wasn't up and getting his breakfast ,,,,,,although I was furious I simply said ;because it is 04.00am and I am trying to sleep …...but I got him some snacks and a hot drink, changed his depends, straightened the sheets, put the sides of the bed up and went back to bed. It is so hard …...I wish you all the very best. In the end I had no choice but to pay 3,500 euros a month for a care home which he hated ….c;est la vie unfortunately !

I am so sorry to hear this Lucky. As I said to Gilly it is often the relatives who suffer more than the patient. It is hard watching a loved one in such anguish.
My mother suffered delusions going through the change and made our lives very difficult. She recovered with help and unfortunately now at 99 she suffers from dementia but is happy in her own little world.

My husband is mentally unwell

You have my complete sympathy Lucky Girl. I experienced all these problems with my late husband who had Parkinson’s Disease and another serious health condition which meant frequent stays in hospital.
I have learned so much more about this awful disease in the years following his death. It is a very serious neurological illness causing the buildup of plaques in the brain (similar to Alzheimer’s) but known as Lewy Body dementia in Parkinson’s.
These dreadful hallucinations and state of psychosis are part of this dementia but can be exacerbated by the PD medication.....and in my husband’s case....undetected urinary tract infections.
My husband spent three months sectioned in a psychiatric unit (for his own safety) and his Parkinson’s Specialist Nurse and I had to plead for him to be given antibiotics. Once he was given these the psychosis and hallucinations cleared up quickly, but by that time he was so weak and frail, he had to go into a nursing home.
PD patients may have urinary tract infections which don’t show up in normal tests.
I recommend you insist your husband be tested for an undiagnosed urinary tract infection.
I understand doctors are reluctant to prescribe antibiotics if they are not sure they are needed. It would be worth investigating if this could be the cause of your husband’s problems this time.
I send you my very best wishes

So hard for all concerned! My MIL was convinced that “they” put her on the roof every time they cleaned her room. She got more distressed when people tried to explain that it wasn’t true. I told her that OH would speak to the staff and tell them to stop. This would calm her for a while.

We taped a photo of her in her younger days and also one with her, FIL and the grandchildren hoping it would help the staff to see her more as a person than a bed number. Some staff members used to ask her about the grandchildren which helped on her more lucid days. We did have to laminate them as one staff member claimed they were unhygienic.

It does seem to be one step forward and two steps back! Hope all settles down soon and you can find some peace of mind.

luckygirl probably impossible but can you involve the most experienced pharmacist as well as the PD nurse. A knowledgeable pharmacist, in discussion with the prescribing member of staff can sometimes make a difference. I learnt this myself with my parents a bit late in the day. Even a point where the timing of the meds, before, with, after food etc might allow a lucid interval each day. Agin, from experience. You are being bombarded with advice but maybe there will something that helps in all the posts. Most of all, I send you my kindest thoughts for the pain that you are both suffering.

Do insist on speaking to the doctor in charge of your DH. Ring the GP'S surgery and be persistent. Mention your concerns that he may have a uti and could he please have some sedation. I had this with my brother when he had dementia.
To allow someone to suffer like that is not on. Sometimes you have to throw the toys out of the pram to get results.
All best wishes.

Poor your Dh and poor you

Spot on, loopyloo, you get ignored until you make a great big fuss, unfortunately. We sometimes have to act loud and bossy when we really aren't that way normally.

My father had delusions in his last few months and was in a locked hospital ward (hell on Earth). Nevertheless, I'd take him out for some peace and quiet in his wheelchair. The staff would be 'too busy' to change him (and get him ready) so I'd do it.

They'd question whether I could 'cope with' a big, strong, difficult character - of course I could. He'd say that they were coming for us, so get the gun. I'd say 'Don't worry, Dad, I've got it - and I'm a very good shot!'

So sorry for your sad situation. ?
Has ECT been mentioned ? Last year my husband was in a very bad way and was sectioned. He had totally shut down but a combination of medication and a course of ect improved him so much that he was -against all odds - allowed home.

I assume he is also being treated for urinary tract infections? Or is that stating the obvious. I apologise if so. My mother-in-law was actually sectioned for similar delusions before her UTI situation was under control and she was on permanent antibiotics just in case.
This does sound the most awful situation for you and I'm so sorry for all concerned.

Just asked OH how he would have reacted to a spouse asking for support and a visit to OAP home for a patients- he said 'of course, that would be my job to support- the fact the person is in a Care home makes no difference.

No advice to give, just my love and admiration for the way you are coping

That's odd, jura2, as we were told there was 'no funding' for a regular GP to visit.

The one who did visit the home was known locally as a good, reliable GP, yet (strangely) somehow 'useless' once in the home, leaving everything to the nurses. Why that should be, I have no idea, unless he didn't want to rock the boat (assuming a private contract was involved)?

Praying for you and your husband.

I dont know how I can help but I can share my experience. When I was a teenager my gran lived with us. She started having delusions. She would be up in the night wielding an umbrella at invisible intruders. She thought the house was full of animals and would scream at us that we were treading on them or sitting on them. It was sheer hell for her and the family. Then the doctor suggested taking her off one of her tablets. Within days she was back to normal. Just might work for your DH x

Lucky girl and Gilly, I'm so sorry you're having to go through this. There's nothing worse in seeing a loved one suffer. Lucky , I hope the PD nurse does get dr to assess your husband again as it seems cruel to let him suffer like this. I thought care homes had GP's assigned to them who did regular visits. I would demand to see whoever it is as this needs to get sorted ,for your peace of mind too. I really hope they get it all organized.

The care home OH was in for a while had his own GP as his Doctor , not that it made any difference , he was home and hadn't been seen by the GP for years , the GP said it was the Parkinsons Disease Consultant that had to change his meds . I was told this when I tried to get help

Yes Hetty it isn’t necessary to have LPA unless things go pear-shaped and you feel you, as the holder of the power, are being sidelined. Then with the correct LPA you have the law behind you.

We have had to exercise that power in the past.

Just returned from NH. Walked in his door and was treated to a string of obscene suggestions couched in the most foul of language. I said that I did not want to hear this and that I would go out and come in again in a minute. I did that and the obscenities stopped. But he then pursued endlessly the theme of being murdered. DD turned up and we both did our best with him. He was refusing food but we managed to get a bit down him.

A call came through to NH while I was there; it was a member of the psychiatric team to ask me some questions. They will send a CPN initially - I insisted that whoever they sent must have prescribing authority or there would be no point. They are going to ring me when they have a date and time; and the home is also primed to let me know if they hear the details, so I can be there.

It was once again a harrowing visit, particularly as he stares at me with a look of pure hatred, which is hard to deal with. Also his eyes look "blank" - it is very weird.

Luckygirl I have followed your journey with your OH and his PD for a while, and feel so sorry there are so many difficulties and nightmares that you have both had to face, and indeed are facing.
It is bad enough having to struggle with the practicalities such as funding and care, without the added stress of the increasing impact of his illness, and the toll on you must be enormous.

You are obviously a very capable person with a great deal of professional experience, Which must make you feel very frustrated at the lack of coordinated medical care.

Can you email the PD nurse and ask for a face to face meeting with her and explain what is happening and your concerns? There obviously needs to be more coordination between nurse, GP, care home, and perhaps PD consultant?

Another idea mentioned on this thread is that he may have a urine infection which may exacerbate his symptoms?

I hope things improve, try and give yourself a bit of space away from things too some of the time. Easier said than done I know.

Big hugs to you. Lots of support on here.

Sorry just seen your latest post about mental health team involvement.

Luckygirl - I don't know how you and your daughter have survived this. And others on here with a similar sick relative. I can't add to the comments above but will mention you all in my prayers.
Why can't we all have a peaceful transit into the next world?

It's so sad. I'm glad that you aren't having to cope with him like this at home. Its only a small mercy but at least you can walk away but I know you'll feel bad about that too.
I hope the psychiatric team can help. They certainly should be able to.

There is an acronym for other things that could be at play

P - are they in pain.
I - is there an infection (often UTI)
N - is the nutrition good
C - are they constipated
H - are they well hydrated.

I'm sure these will all have been checked by the NH staff and probably not a consideration in your dh's case, lucky.

Jura, things have changed since your DH's time.

This must be devastating for you - could you call your local mental health team and ask that he see a psychiatrist? Irrespective that it might be caused by a drug or combination of drug his fears are very real to him and they may be able to assist with monitoring treatment - worth a try perhaps