Desperate for some advice please

[Beannie]

Hi

It is a long time since I have posted anything. It has been a very difficult 12 months and I now find myself in a position I know very little about so any advice would be welcomed. My OH who has had early onset Parkinson's Disease and Early onset Alzheimers Dementia for the last 8 years and is 64 was moved to a Nursing Home last May as his Care Home couldn't cope with him. We have been having problems with him for some weeks now and he has been given several warnings about his unacceptable behaviour.

This afternoon I had a call from his Nursing Home to be told he was being given formal notice that he had to go and our Social Worker has been informed. I asked the Manager of the Nursing Home where he would go and she said a Mental Health Unit as no other Nursing Home would take him because of his behaviour. The final straw has been that he assaulted a member of Staff and has been performing sex acts on himself in front of Carers and other residents!! Previously he has stripped himself naked and walked about the Home until the Staff could get to him, poohed on the floor because he wants to tread in it and urinated wherever it takes his fancy.

I feel as if I am living in a world of 'make believe'

Is a Mental Health Unit the same as a Secure Unit? Who pays, the NHS or The Council/me as happens at the moment. I am really scared for him now and worried for myself as well as this is a situation over which I have no control. Does anyone out there have any first hand knowledge of a Mental Health Unit. If so some advice please.

Thanks for reading my post.

 

[marionq]

That's a bit of a horror story for you but I'm certain someone will have been down this road and can advise you.

Good wishes.

 

[love.dad.but..]

I don't have any experience of this extreme challenging behaviour although dad got very close to a warning for peeing often and in inappropriate places so with what you describe if medication has already been tried and mental health team must already have been referred to...then most probably other dementia nursing homes would not take him.

However I just wanted to post to say as terrible as the situation sounds and must be a horrible situation to be in for your poor dear OH and you...he needs to be where he can be kept safe and also managed so if that is a secure unit to meet his needs then it can only be a good thing. Others on TP will have experience of similar or have more knowledge and will give you guidance on that and finances or who to ask.

You as his OH can't even begin to control his behaviour caused by his illness so although it must be really distressing please try to not upset yourself. He deserves more help than his NH can provide. One of the residents at dads NH who was aggressive was moved to a secure mental health unit as part of a hospital and probably because the staff ratio was greater and more daily mental health expertise was evident the pwd actually calmed and that gave her family great relief and peace of mind.

 

[SnowWhite]

Oh dear, that must be terrible for you. I dont know for sure but I feel that he should get this placement paid for.

Let us know how you get on. Xx

 

[Kevinl]

My wife spent 6 months in a Secure/Assessment/Mental Health Unit, call It what you will and it was one of the best things that happened for her.
For six months the NHS (our was NHS) had doctors, psychs, occupational therapists and all the rest doing everything they could to get her a stable as they could trying different medications...just everything it's about the only time someone seemed to make an effort to do something other than a few tests and give you Aricept, then send you home.
My wife and 4 others (that I know of) have, over time moved to the same EMI nursing home and the kind of behaviour you talk about, while not an everyday occurance does happen and only violence isn't tolerated and by that I don't mean slapping the staff that happens quite often but if someone could be a danger to the other residents then they get shipped back to the unit.
Sometimes it's just a matter of time then the behaviour stops but if he does go in there I'd expect it to be months not weeks that he's there for, based on the time others seem to be there.
As he's only 64 then he'll probably be one of the younger ones in there, my wife was 62 when she was admitted and is only 64 now which often means they're more mobile than some of the older ones so more of a problem for a nursing home to deal with.
K

 

[Beannie]

My wife spent 6 months in a Secure/Assessment/Mental Health Unit, call It what you will and it was one of the best things that happened for her.
For six months the NHS (our was NHS) had doctors, psychs, occupational therapists and all the rest doing everything they could to get her a stable as they could trying different medications...just everything it's about the only time someone seemed to make an effort to do something other than a few tests and give you Aricept, then send you home.
My wife and 4 others (that I know of) have, over time moved to the same EMI nursing home and the kind of behaviour you talk about, while not an everyday occurance does happen and only violence isn't tolerated and by that I don't mean slapping the staff that happens quite often but if someone could be a danger to the other residents then they get shipped back to the unit.
Sometimes it's just a matter of time then the behaviour stops but if he does go in there I'd expect it to be months not weeks that he's there for, based on the time others seem to be there.
As he's only 64 then he'll probably be one of the younger ones in there, my wife was 62 when she was admitted and is only 64 now which often means they're more mobile than some of the older ones so more of a problem for a nursing home to deal with.
K

Hi Kevinl

Can I ask if these Mental Health Units are funded by the NHS or would I still have to pay my share as I do now along with my local authority? This might seem a mercenary question but it is important to me.

 

[Kevinl]

Ours is NHS funded, everything is free other than they don't do a laundry service, never figured out why but most seem not to do this.
The question is do you give the current care home notice that he won't be coming back?
My story and that of others on here is that these places never seem to give straight answers, when my wife was sectioned I was told it was for 28 days, then she'd be there for a few more weeks but it turned out to be nearly 7 months before she was finally discharged.
Some people were in there when we arrived and still there when we left, others though did come and go although some I believe were respite care and others not what I'd class as severe.
If you want to keep the place at the current home they'll expect you to keep paying even when he's not there, give it up and when he is discharged you'll have to find somewhere new that is better able to meet his more challenging needs.
If he goes in there and is put under a section 3 then when he is discharged the LA will fund his on going care and you might only have to pay a top up, it's all hard to second guess what will happen, if he is section 3'd then that would take some of the financial burden off you.
K

 

[Beannie]

Ours is NHS funded, everything is free other than they don't do a laundry service, never figured out why but most seem not to do this.
The question is do you give the current care home notice that he won't be coming back?
My story and that of others on here is that these places never seem to give straight answers, when my wife was sectioned I was told it was for 28 days, then she'd be there for a few more weeks but it turned out to be nearly 7 months before she was finally discharged.
Some people were in there when we arrived and still there when we left, others though did come and go although some I believe were respite care and others not what I'd class as severe.
If you want to keep the place at the current home they'll expect you to keep paying even when he's not there, give it up and when he is discharged you'll have to find somewhere new that is better able to meet his more challenging needs.
If he goes in there and is put under a section 3 then when he is discharged the LA will fund his on going care and you might only have to pay a top up, it's all hard to second guess what will happen, if he is section 3'd then that would take some of the financial burden off you.
K

Hi Kevinl

I have been to my husband's Nursing Home today and I don't need to give notice as they have said he needs to leave asap. Our Social Worker has spoken to the Nursing Home Manager, although to date she has not contacted me. They will not take him back and because of the seriousness of what he has done Carers only go to him in twos and if there is a male member of staff on duty he deals with him. The Carer he assaulted has been very bruised apparently he pushed her up against a fire door!!! I cannot quite take in that the mild mannered man I married has turned into this monster!!! Will post again when I know where he is going. Do you do your wife's washing or do you pay her home for the service?

Thanks

 

[Kevinl]

In the NHS assessment unit my wife was in (others may be different) and based on what others have said on here, NHS assessment units don't do the laundry and paying for it wasn't an option.
They did do laundry for people with no relatives or visitors but that meant taking a member of staff out to do it so they weren't that keen on doing it. There was a laundry for bedding, tablecloths and the like but that was done by a contractor not on site.
If it is NHS then I wouldn't expect to gat a laundry facility, as I say other have said the same on here, it seems to be standard practice.
In the nursing home she's now in laundry is a part of the service included in the price.
K

 

[foodie888]

please ring the Admiral nurses number. They are not available to visit all areas but they will advise via telephone and I cannot recommend them highly enough.

You should not be going through this.

Please ring, they are brilliant . Good luck

 

[Shedrech]

hello @Beannie
here's the link to the Admiral Nurses website
https://www.dementiauk.org/get-support/admiral-nursing/
do contact them as they are there to help the carer
and there's the AS Helpline - the folk there have a lot of knowledge of all sorts of matters
0300 222 11 22
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[Beannie]

please ring the Admiral nurses number. They are not available to visit all areas but they will advise via telephone and I cannot recommend them highly enough.

You should not be going through this.

Please ring, they are brilliant . Good luck

Hi foodie888

Thanks for answering my post. I feel so ignorant as I do not know what Admiral Nurses are or what they do. How can they help me as my husband is already in a Nursing Home and as said in original post now has to leave asap. I have visited him this morning as he rang me in a very distressed state, his speech is now so bad it is difficult to know what he is saying. I eventually found out it was because he thought someone had taken his CD player. It was on his table when I got there.

I did get very upset and to my shame I cried in front of him (something I try not to do) one of the Carers must have seen me and on the way out the Home Manager and one of her Nursing Staff asked me to go in the office. I did and I said I was so fed up with everything and in particular the not knowing where my OH will end up. They said they had spoken to our Social Worker and she was now urgently reviewing everything. They did tell me where he was placed wouldn't be like where he is now!!! I said do you mean it will smell!! and was told probably, great!!!

3 years down the line from when he first went into a Care Home I still feel the guilt monkey land on my shoulder and start giving me guilt trips. Added to all this I also have to look after my 95 year old Mother who has mixed dementia. She has 4 Carers a day but I have to do her washing, ironing, shopping etc as well as try and find time for me. When I do manage to have some downtime I feel that Damm guilt monkey land on my shoulder making me feel I do not deserve to do 'normal' things.

Alzheimers and Parkinsons have completely ruined my OH's life and mine as well and until I know where OH is going I cannot put my mind to anything.

Sorry to ramble on.

 

[Beannie]

hello @Beannie
here's the link to the Admiral Nurses website
https://www.dementiauk.org/get-support/admiral-nursing/
do contact them as they are there to help the carer
and there's the AS Helpline - the folk there have a lot of knowledge of all sorts of matters
0300 222 11 22
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Hello Shedrech

As I have just said to foodie 888 I do not know what Admiral Nurses are and how they can help me. My OH's fate is going to be decided by Social Workers and other professionals. I do have POA for Health and Wealth for my OH so my understanding is they cannot put him anywhere without either my say so or telling me prior to him being moved. Is that correct?

I don't want to contact the Admiral Nurses and waste their time in particular if it is too late now he is being moved. I can honestly say I have never felt so isolated or lonely although I have a daughter and two very close friends as well as a brother who lives about 150 miles away from me.

I have also had 5 weeks of Counselling and thought I had thrashed out all my worries but that was before the phone call last Tuesday I have been dreading for about 3 months telling me what he had done. We had so many plans for our retirement and then Alzheimers and Parkinsons destroyed all our hopes and dreams as well as depleting a lot of our savings as well as my OH having to stop work 4 years before he was going to and all the financial implications that had.

Thanks for reading my original post.

 

[Shedrech]

hi @Beannie
ramble on here as much as you need if it helps to get things aired - you have so much to deal with, I wish I could offer more support
as I understand it Admiral Nurses are there to support the carer whatever their circumstances - I haven't contacted them myself but some other members have commented that they have and found the Nurse helpful and knowledgeable - not all areas have a nurse available but there is a helpline to call for support - I just thought it may help you to be able to talk n real time with a person who actually knows about life with dementia and also recognises the situation you are facing - I very much doubt that any call you make will be seen by them as in any way wasting their time
same goes for the AS Helpline
dare I suggest online shopping for your mum and a cleaner who will wash and iron also, just to take some of the physical tasks from you - sorry if that's so obvious as to be insulting
I hope the social worker will find somewhere to help soon
sorry, whatever I write seems inadequate

 

[foodie888]

Hi foodie888

Thanks for answering my post. I feel so ignorant as I do not know what Admiral Nurses are or what they do. How can they help me as my husband is already in a Nursing Home and as said in original post now has to leave asap. I have visited him this morning as he rang me in a very distressed state, his speech is now so bad it is difficult to know what he is saying. I eventually found out it was because he thought someone had taken his CD player. It was on his table when I got there.

I did get very upset and to my shame I cried in front of him (something I try not to do) one of the Carers must have seen me and on the way out the Home Manager and one of her Nursing Staff asked me to go in the office. I did and I said I was so fed up with everything and in particular the not knowing where my OH will end up. They said they had spoken to our Social Worker and she was now urgently reviewing everything. They did tell me where he was placed wouldn't be like where he is now!!! I said do you mean it will smell!! and was told probably, great!!!

3 years down the line from when he first went into a Care Home I still feel the guilt monkey land on my shoulder and start giving me guilt trips. Added to all this I also have to look after my 95 year old Mother who has mixed dementia. She has 4 Carers a day but I have to do her washing, ironing, shopping etc as well as try and find time for me. When I do manage to have some downtime I feel that Damm guilt monkey land on my shoulder making me feel I do not deserve to do 'normal' things.

Alzheimers and Parkinsons have completely ruined my OH's life and mine as well and until I know where OH is going I cannot put my mind to anything.

Sorry to ramble on.[/QUOT

Hi foodie888

Thanks for answering my post. I feel so ignorant as I do not know what Admiral Nurses are or what they do. How can they help me as my husband is already in a Nursing Home and as said in original post now has to leave asap. I have visited him this morning as he rang me in a very distressed state, his speech is now so bad it is difficult to know what he is saying. I eventually found out it was because he thought someone had taken his CD player. It was on his table when I got there.

I did get very upset and to my shame I cried in front of him (something I try not to do) one of the Carers must have seen me and on the way out the Home Manager and one of her Nursing Staff asked me to go in the office. I did and I said I was so fed up with everything and in particular the not knowing where my OH will end up. They said they had spoken to our Social Worker and she was now urgently reviewing everything. They did tell me where he was placed wouldn't be like where he is now!!! I said do you mean it will smell!! and was told probably, great!!!

3 years down the line from when he first went into a Care Home I still feel the guilt monkey land on my shoulder and start giving me guilt trips. Added to all this I also have to look after my 95 year old Mother who has mixed dementia. She has 4 Carers a day but I have to do her washing, ironing, shopping etc as well as try and find time for me. When I do manage to have some downtime I feel that Damm guilt monkey land on my shoulder making me feel I do not deserve to do 'normal' things.

Alzheimers and Parkinsons have completely ruined my OH's life and mine as well and until I know where OH is going I cannot put my mind to anything.

Sorry to ramble on.

Hi Beannie,
Never apologise about rambling on this forum. That's what it's for !

Please don't think about wasting time for the Admiral Nurses. I first met our nurse last year when I was struggling even though I thought well, she can't do anything to help. How wrong I was. She is there to help you in any way you need. You can meet her at home or out somewhere for a coffee or talk on the phone. She can offer support with information about facilities, claims for allowances and many practical things. For me, she also lends a shoulder to cry on and I can tell her things I would not talk about with anyone else.

My doctor kept advising me to contact Admiral nurses and I kept saying we're OK thanks. His reply was if you don't use them you might lose them.

You have been left to struggle without adequate support. Don't give up and please let us all know how you get on.

Take care

 

[Reman]

Hi foodie888

Thanks for answering my post. I feel so ignorant as I do not know what Admiral Nurses are or what they do. How can they help me as my husband is already in a Nursing Home and as said in original post now has to leave asap. I have visited him this morning as he rang me in a very distressed state, his speech is now so bad it is difficult to know what he is saying. I eventually found out it was because he thought someone had taken his CD player. It was on his table when I got there.

I did get very upset and to my shame I cried in front of him (something I try not to do) one of the Carers must have seen me and on the way out the Home Manager and one of her Nursing Staff asked me to go in the office. I did and I said I was so fed up with everything and in particular the not knowing where my OH will end up. They said they had spoken to our Social Worker and she was now urgently reviewing everything. They did tell me where he was placed wouldn't be like where he is now!!! I said do you mean it will smell!! and was told probably, great!!!

3 years down the line from when he first went into a Care Home I still feel the guilt monkey land on my shoulder and start giving me guilt trips. Added to all this I also have to look after my 95 year old Mother who has mixed dementia. She has 4 Carers a day but I have to do her washing, ironing, shopping etc as well as try and find time for me. When I do manage to have some downtime I feel that Damm guilt monkey land on my shoulder making me feel I do not deserve to do 'normal' things.

Alzheimers and Parkinsons have completely ruined my OH's life and mine as well and until I know where OH is going I cannot put my mind to anything.

Sorry to ramble on.

 

[Baby Bunty]

Hi i cant offer advice..but i wish you luck on this horrendous journey and also please look after yourself. X

 

[Beannie]

Hello Shedrech

As I have just said to foodie 888 I do not know what Admiral Nurses are and how they can help me. My OH's fate is going to be decided by Social Workers and other professionals. I do have POA for Health and Wealth for my OH so my understanding is they cannot put him anywhere without either my say so or telling me prior to him being moved. Is that correct?

I don't want to contact the Admiral Nurses and waste their time in particular if it is too late now he is being moved. I can honestly say I have never felt so isolated or lonely although I have a daughter and two very close friends as well as a brother who lives about 150 miles away from me.

I have also had 5 weeks of Counselling and thought I had thrashed out all my worries but that was before the phone call last Tuesday I have been dreading for about 3 months telling me what he had done. We had so many plans for our retirement and then Alzheimers and Parkinsons destroyed all our hopes and dreams as well as depleting a lot of our savings as well as my OH having to stop work 4 years before he was going to and all the financial implications that had.

Thanks for reading my original post.

Hi again Shedrech

I have now contacted Admiral Nurses and Alzheimers Association who have put me in touch with my local Association and I have been in touch with the Advocacy Service as well and as they consider my situation urgent they are trying to allocate me someone so that when the meetings take place I will have someone with me for support. I have had so ,many messages from people and I am very grateful to you all. I will post again when I know what is happening.