Predictably unpredictable

[Platinum]

I thought I was managing in difficult circumstances but have lost confidence in the way forward. My other half is currently in hospital having been forcibly removed from his second care home and their dedicated separate dementia unit. He has no mental capacity but can be very cooperative, pleasant and funny. However at night he wanders and becomes aggressive and lashes out which has involved hitting a carer. He is predictably unpredictable but the aggressive side now defines him. He is currently in a short stay ward in hospital but the pressure will be on to remove him. He was sleeping when I visited yesterday but on waking he asked if he was dead; so sad. I have visited about 10 care homes but what they promise and what they deliver seem to be two different things. He has gone from home to hospital to 1st care home, 2nd care home and now hospital in the space of three months. We are self paying so social services don’t really engage (when seeking advice one told me I would have to pay for an assessment?) and he now has no GP. His aggressive mode could well be linked to untreated UTIs as he has an indwelling catheter and the 1st care home had been giving lorazepam but stopped it suddenly on the day of transfer to 2nd care home substituting Trazadone. I keep a complete medical file but any information from me has been largely ignored. I do use the help line and CHS who are helpful but they can’t help with decisions.
I’m hoping his current stay in hospital will address his medication but NICE guidelines seem to disallow lateral thinking. He has had four courses of the same antibiotic without much effect. Care homes and their trial periods work in their favour (some contracts clearly flout Consumer Law) and some groups take eye watering fees but still only pay their carers minimum wage, the people who deliver the service. How do you choose? Any advice would be very welcome. Happy New Year to everyone. 2019 looms large for so many.

 

[kindred]

I thought I was managing in difficult circumstances but have lost confidence in the way forward. My other half is currently in hospital having been forcibly removed from his second care home and their dedicated separate dementia unit. He has no mental capacity but can be very cooperative, pleasant and funny. However at night he wanders and becomes aggressive and lashes out which has involved hitting a carer. He is predictably unpredictable but the aggressive side now defines him. He is currently in a short stay ward in hospital but the pressure will be on to remove him. He was sleeping when I visited yesterday but on waking he asked if he was dead; so sad. I have visited about 10 care homes but what they promise and what they deliver seem to be two different things. He has gone from home to hospital to 1st care home, 2nd care home and now hospital in the space of three months. We are self paying so social services don’t really engage (when seeking advice one told me I would have to pay for an assessment?) and he now has no GP. His aggressive mode could well be linked to untreated UTIs as he has an indwelling catheter and the 1st care home had been giving lorazepam but stopped it suddenly on the day of transfer to 2nd care home substituting Trazadone. I keep a complete medical file but any information from me has been largely ignored. I do use the help line and CHS who are helpful but they can’t help with decisions.
I’m hoping his current stay in hospital will address his medication but NICE guidelines seem to disallow lateral thinking. He has had four courses of the same antibiotic without much effect. Care homes and their trial periods work in their favour (some contracts clearly flout Consumer Law) and some groups take eye watering fees but still only pay their carers minimum wage, the people who deliver the service. How do you choose? Any advice would be very welcome. Happy New Year to everyone. 2019 looms large for so many.

Thank you sweetheart, and what a difficult time you are having. Look, can you afford the services of an independent social worker? Google them in your area. I hear good things but am not sure what they charge. That's one way. Also, while he is in hospital, you can ask if the hospital social worker can help you, paying or not. I am self funding but when my OH was in hospital, the social worker sorted everything out for me, including finding a suitable care home. I had reached the state I could not do any more, even sorting out care homes (which is a hell of an ordeal, isn't it). And of course, the quicker this is sorted, the quicker he will be out of there. Of course it is hard to choose, of course it is. Some nursing homes do cope with high levels of aggression, but I think we need a bit more social worker input on which ones.
Warmest, Kindred.

 

[karaokePete]

In the hope that it helps, here's a link to a site that has reviews of CH's and has an area search facility.

https://www.carehome.co.uk/

I can't vouch for the accuracy of the reviews as I only have experience of one CH but the reviews for that one seem accurate enough.

 

[karaokePete]

BTW, I wonder if a change of approach(literally) may help with the lashing out.

I once read a case study where this was an issue until people, even family, approached from the front and as they approached introduced themselves and explained what they were going to do.

Apparently many people approach in silence from the rear or side and, in the moment, this is interpreted as an attack and the person lashes out to defend themselves as they don't know who is there or what is happening.

 

[Platinum]

Thank you sweetheart, and what a difficult time you are having. Look, can you afford the services of an independent social worker? Google them in your area. I hear good things but am not sure what they charge. That's one way. Also, while he is in hospital, you can ask if the hospital social worker can help you, paying or not. I am self funding but when my OH was in hospital, the social worker sorted everything out for me, including finding a suitable care home. I had reached the state I could not do any more, even sorting out care homes (which is a hell of an ordeal, isn't it). And of course, the quicker this is sorted, the quicker he will be out of there. Of course it is hard to choose, of course it is. Some nursing homes do cope with high levels of aggression, but I think we need a bit more social worker input on which ones.
Warmest, Kindred.

Thanks for such a quick reply. I will of course look into this - I will look into anything!!!
They are very kind at the hospital which isn’t always the case.

 

[canary]

I hesitate to mention this, but has anyone considered Continuing Health Care?
I know its very difficult as dementia is considered a social need, but where there is unpredictable violence this seems to be one area that can swing it. You may find you have to look for a dementia nursing home for him

 

[Juniorjunior]

I have no direct experience but feel for your situation. Why does everything have to be so hard when trying to manage this disease in our loved ones.
Would it be possible to get advice from either hospital liaison psychiatry or community mental health team either in managing behaviour or suggesting appropriate placement locations. I would advise contacting social.worker and OT in hospital for advice for an updated assessment of needs to direct your search for care homes even if you are self funding. We carers are experts in looking after and fighting for our loved ones. We are not the experts in managing systems or care management with care homes.
I hope you are able to find more detailed helpful advice at TP.

 

[Platinum]

Since posting I have had two meetings with the ward discharge officer who has been very kind and supportive. She has applied for a Section 2 as a holding measure to get the right assessments and is going to start the CHC process. She has also arranged a transfer to a quieter ward which is welcomed but of course you get a new discharge officer and I’m not sure of the handover arrangements now, OH was moved on Friday evening and the familiar fit for medical discharge has been mentioned and the need to find residential care. I have continued to look and have two possible places but OH now has 121 care and I’m concerned assessments by both homes will want to continue the 121 with punishing fees. I have been quoted £3500 per week in the past for this arrangement. I visited yesterday and explained to the nurse in charge what the 1st discharge officer had started to arrange. Today will clarify things hopefully but as hopes are raised and dashed on a daily basis I’ve learned it’s best not to hope. I did find a private social worker, thanks Geraldine, who agreed I could contact her if I found myself in trouble if the hospital arrangements floundered. (For info £35 per hour 45p per mile). In the meantime my poor OH has “slept” in six different places in the space of three months. He continues to wander at night and exhibit challenging behaviour but is ok for the most part in the daytime although very confused. (I still want to say “get in the car we’re going home” - but we would get into trouble). I cannot fault the hospital care which is exemplary and puts the last CH to shame. Thanks for all the help and advice it’s so appreciated.

 

[Fullticket]

Continuing Health Care might be worth investigating - could you approach a local solicitor with your problem (one who deals with these medical/psychological issues)? You may get half an hour free consultation. I'm not an expert by any means but an assessment under the domains of care might not warrant payment for his care as he is living without the need of a registered nurse and I think you need at least three domains to be highest need (clearly continence would be high need as he is at risk of UTIs), but it might highlight the problems. I would investigate some outside legal advice even if it is only to inform yourself about the domains of care and how these are applied.
If they feel it is viable the solicitor may contact someone to assess your husband (you may have to pay for this) independently and produce a report.

 

[canary]

clearly continence would be high need as he is at risk of UTIs

Actually, plain simple urine incontinence is low, double incontinence or needing a catheter is medium. In order to qualify for high you have to have:-
Continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs/irrigation, manual evacuations, frequent re-catheterisation)
from the Decision Support Tool.

 

[Platinum]

Actually, plain simple urine incontinence is low, double incontinence or needing a catheter is medium. In order to qualify for high you have to have:-
Continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs/irrigation, manual evacuations, frequent re-catheterisation)
from the Decision Support Tool.

I agree that a urinary catheter will not cut much sway although frequent recatheterisation is an issue. I spoke to social workers yesterday who felt that his behaviour now would satisfy the Decision Support Tool for onward assessment but they are also talking about applying for a payment for a 121 in a suitable residential home, ie we would be self paying for the normal weekly rate which would be a relief - if it happens. OH is now on a different ward and continues to be alright in the day, although very confused, but really disruptive at night. Security have been called twice and last night he went into the sluice and threw buckets of water over anyone who came near. I am absolutely astounded as this is a man with a balance problem but he managed to do this. The ward staff are very understanding and a psychogeriatrician will review and more meetings with regard to CHC plus Mental Health. I’m frightened where all this is going and the fact that his aggression has progressed so quickly. I often wander if this would have happened at home had he not called the police in September whilst hallucinating which landed him in A&E and the path we are now on. What ifs consume and sadden me. I will be involved in any discussions but I wander if I will be allowed to disagree with any arrangements. I have an old EPOA which has been accepted so far. Thanks for all advice which is very welcome.