OH so mentally unwell

I cannot imagine what you are going through or offer any words of wisdom as I have never had to deal with such a situation. However I can send you much love, sympathy and huge hugs.
Hang in there, Lucky, and I hope and pray that things will improve for you and your poor husband.

Jane10 ''Jura, things have changed since your DH's time.''

yes, we have been discussing this (and it was not that long ago- just 10 years). It seems that many Private Care Homes require the patient to de-register from their GP, and re-register with the one with a contract to the CareHome. Often- not always of course, to increase list size and income related to the elderly- but without real commitment.

Lucky - thinking about you, a lot - and everything crossed.

My older brother has been going through a similar situation, and he found it so so hard. xxx

Oh dear, I am so sorry for all of you. My husband has Parkinson's but we are not facing these problems, I should say "yet" because we have no idea what the future holds. Does your husband see a movement disorder specialist? Mine sees a consultant in geriatrics, and we are thinking of asking for a referral to a MDS as we don't feel he is receiving the best treatment possible. He sleeps very badly after dark, but can hardly stay awake during the day, and feels totally exhausted. His quality of life is really quite poor. Have you tried contacting Parkinson's UK or any of the Parkinson's groups on FB or locally? It does sound as if his meds need changing or could be possibly have a uti? I believe they can have a detrimental effect. I feel at a loss to suggest anything else, but sending hugs to you. X

I don’t know what to say, except your in my thoughts and I hope that there is some help to improve things. Watching someone you love suffer is so very painful.

So sorry to read things are so distressing for your husband and of course, for you and your daughter. I hope things can be alleviated x

I am so sorry for your situation Luckgirl. Pleas do not apologise for posting your troubles and worries on this site. This is what it is for! I agree with Hetty. Could you speak to the doctor in charge of your DH and ask about is medication and tell him all about your husband. The doctor will only get to know you if you speak to him, a lot if need be. We had a similar problem with an aunt. I probably made a nuisance of myself, in the home's eyes but it worked. They certainly kept me informed at all times about everything. They also took on board everything I said/suggested. Sometimes they just need telling. Sometimes I think they like to be told what to do. You are doing your best so hang in there and keep posting for support.

Luckygirl, this is the reason that my DH is in a nursing home. The paranoia was dreadful. He veered between seeming to be reasonably 'normal ' to having a knife at my throat. These periods came and went most days. I suspected that it might be related to his PD medication, but neither his psychiatrist or neurologist would concede this. He did become calmer after a change in medication earlier this year, but his mobility then decreased greatly. He now cannot move without support from two carers, and sometimes needs to be hoisted, sadly. He still has delusions, and I totally understand why visiting is stressful. It's actually heartbreaking. Maybe call the nursing home before you go, to find out his frame of mind. Unless your presence calms him, it's probably better that you aren't there at his worst times. I think we have to bear in mind that when people are caught up in these delusional scenarios, they are not thinking beyond their own situation. I can see that you probably feel that you're up against a brick wall in relation to the medical profession. I gather from what I have read that the meds that help the motor symptoms most, are the ones that cause some of the mental problems, hence the decline in my DH's mobility. I was told by the neurologist that we 'can't have it all'. If DH's GP can't help, try calling his consultant's secretary to see if you could have a review. I have e mailed both the psychiatrist and neurologist, with some success. I hope that the situation becomes more settled. Take care of yourself, first and foremost, and don't feel bad about not visiting ( says me ). Thinking of you.

I haven't read all the responses so don't know if this has already been suggested, but when my father was in a nursing home with PD some years ago with similar distressing symptoms, the lovely nursing manager suggested taking him off ALL his medication. Although he remained very ill, and sadly died within a few weeks, his paranoia and awful waking nightmares disappeared. He was able to recognise and relate to his family calmly towards the end, and died peacefully in his sleep.

Moving post teifi, thanks.

Yes they do sedate them in hospital it happened with my mother in law. She was crying help me constantly, pitiful to hear, when sedated at least she would sleep peacefully. But not sure whether it would be suitable in all cases. So sorry to hear this Luckygirl

luckygirl if you want to talk to a GP at your surgery, try phoning or visiting and ask to speak to one of the secretaries. Explain your problem and say you don’t know any of the doctors is there one she could suggest who might have more knowledge in this area and be able to talk to you then make an appointment with that one.

Luckygirl I am more sorry than I can say to read of this development. Your troubles seem never-ending. I wish I had some words of wisdom, but sadly I don't - only to reiterate what others are saying about trying to be at the NH when a doctor visits your DH. Surely, even in the dire straits our NHS finds itself, this must be possible?

Beyond that, I just cannot find any words to help or comfort you, but please know that you and your DH continue to be in my thoughts and prayers, as do you and your DH gillybob

Oh, sorry, I've just backtracked and read your post about the CPN visiting Lucky. I do hope that will happen very soon - and of course, I hope there will be something positive they can do to quickly alleviate your DH's terrible paranoia.

jura2- I think you have mistaken kittylester for me or vice versa.

This is a terrible situation for you to find yourself in. Is there someone who can go into hospital with you and speak for you.
Someone who can be strong and firm.
You need to see a Dr and demand his medication be sorted out . Your husband shouldn’t be suffering like this in his final years.
As others have said he who shouts loudest etc.
Can they not stop all his tablets and then reintroduce them and see what affects him ( I’ve no idea if this is even possible but I’m clutching at straws)
I Couldn’t stand this if it was my partner and would be making huge waves for my own sanity never mind his.
I hope something is sorted very soon

Jane10- yes I have- sincere apologies. The comment re the rôle of GPs having changed was from kittylester.

Additionally, jura, lots of people have to move to NH out of their GP's 'catchment' area. That happened to my mum.

Luckygirl I am so sorry to hear your update.
I have nothing helpful to add but just wanted to say thoughts and prayers are with you and I hope that the doctors can help your DH. It is not him staring at you like that, it is the horrible disease.
I wondered, too if a GP is the best person to help as a psychiatrist or geriatrician would have more specialised knowledge of what would be best for him.


And for you and your DH too, gillybob, it is so kind of you to post

Luckygirl
If it is the medication, which is quite possible Can you ask for it to be stopped in order to find out?
I have had an experience of pain meds changing mood and personality in someone close to me.
It is very disturbing and for some reason GP's often do not consider this.
Ask your DD to look up the side effects on Google or Facebook might have a Forum about Parkinsons and the meds

I do hope you will get the help you need.

I'd just like to add that you really need to take care of yourself (physically and mentally) to cope with this.

When my husband was very ill (at home) sometimes, the illness itself 'took over' and he was angry, hostile and cruel. I was often scared of him.

Mentally, I changed my attitude. At these times, the person before me was 'not really my husband'. It was as if he'd been stolen and replaced by a 'cardboard copy' - a very bad one. So, in my mind, I continued to care but detached myself somewhat. I took the attitude that I'd wait this out and look forward to the return of the 'real' version.

That probably sounds crazy to most people, but it helped me to cope and I never blamed the behaviour on him.

Going through an identical experience at the moment with a relative with dementia. Fortunately everyone who works with my relative in the care home is wonderful but obviously it's a struggle to find any solution. This thread, though heartbreaking, has given me some new ideas about how to proceed. Thank you all you GNers. Thinking of you Luckygirl.