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Advanced Lewy Body dementia and care homes in Exeter area

LizzyL

Registered User
Oct 9, 2013
3
0
Dear All,

In April of this year my father was sectioned under the mental health act and admitted to a local specialist hospital ward for Dementia. He is now under a section 117 which provides for his continuing medical care costs, however, the hospital is putting pressure for a home to be found for him - Dads condition is extreme, including aggression to other patients and staff, incontinence but refusal to where pads or even clothes and little to no sleep at all. Medication is not helpful and he has extreme reactions to any form of sedation. We are strongly of the opinion that only the specialist hospital ward where he is currently has the resources to cope with him, however, as you are aware it is not the NHS policy for long term care to be supplied by themselves.
Since his admittance in April, Dads condition has deteriorated still further and in their own words is the most extreme case of Dementia they have come across.
A nursing home was arranged via his care worker and social services, however he lasted less than 24 hours before the manager admitted that they were unable to cope with his condition and called for an ambulance and re admittance to the hospital.
We have now been suggested another nursing home in Taunton, which is over an hour away from my parents home (Honiton) and will be very difficult for my mother (70 plus) to visit on public transport.
Any help or advice on nursing homes in the Honiton, Exeter area would be greatly appreciated (or any legal way that we could enforce the hospital to continue his care there) Clutching at straws.............
 

BeckyJan

Registered User
Nov 28, 2005
18,972
0
Derbyshire
Hello and welcome to Talking Point.

Sadly I cannot help with any knowledge of homes in your area. Anyone who has hopefully will send you a private message as we cannot quote names or recommend them on the Forum.

My thoughts are that over an hour journey for a family member is just too far away. I think you have a right to insist on a more suitable place nearby - its the problem of Social Services and/or the Mental Health team if they cannot find one. In the meantime the hospital has an obligation to cope, however difficult.

Have you thought of discussing this further with the M H Consultant? They should be kept fully informed of your views and maybe they could try a little harder with medication for him.

My heart goes out to your family - its so hard emotionally without all the hassle of finding a suitable place.

Best wishes
 

Bumblegirl

Registered User
Nov 17, 2012
86
0
Hi Lizzi,
Sorry to hear about your dad. I can't help about care homes in Exeter but your dad sounds very similar to my mum.

She was on a section 3 and was in a MHU from January until last month. She too would not sleep, would attack other patients/staff and scream all the time (my poor mum - I feel terrible for her and just wish I could make it better for her). It is heartbreaking and I feel for you.

We wanted her to stay in the hospital too as we doubted any care homes could cope with her behaviour. However, the assessment unit said that they were not geared up for long term stays and if it was felt she needed that she would end up going into a long stay unit which would be miles from us (and prob not a very nice environment, although this was just implied by the SW).

Consequently, we looked into a care home. I looked very carefully at ones that did nursing and EMI and met with the managers. We went over mum's history and I could tell the ones that were never going to be suitable. I went for one that had explanations as to why mum may behave that way and tried to see the person rather than the behaviour. They were the most expensive by far and also the best staff ratios. They also held their own when I spoke to them about how they would deal with mum's behaviours. They were not put off and believe me I gave them the full story and they assessed mum.

She has been there a few weeks and by and large is as settled as we might expect (or indeed, dared hope). The future is never certain but I can honestly say they are better trained than the hospital. Sometimes, the hospital environment is a trigger as there is always a turnover of patients (often challenging) and visitors and it can get really unsettled.

Just ensure you tell the homes exactly how your dad behaves and ensure you are fully reassured (as much as you can be). You have already tried one which went wrong so perhaps look at the reasons for that before trying again. Make sure the hospital are being honest with the home when they go into assess.

We found 1:1 funding was an option if we needed it but so far have not. If you don't have this please ensure you ask for it as this may be the only way a care home may be able to manage.

Good luck with things - I feel for you and please don't get rushed into finding any old home. I found a lot of them would agree to take mum but it seemed to be more a case of filling a place (and getting funding) than actually appreciating how hard it is to care for mum and her complex needs.

Mum has improved since she left the unit - something I never thought would happen. Don't be afraid to try the care home route again.

Good luck.
BG
 

LizzyL

Registered User
Oct 9, 2013
3
0
Many thanks

Hi Lizzi,
Sorry to hear about your dad. I can't help about care homes in Exeter but your dad sounds very similar to my mum.

She was on a section 3 and was in a MHU from January until last month. She too would not sleep, would attack other patients/staff and scream all the time (my poor mum - I feel terrible for her and just wish I could make it better for her). It is heartbreaking and I feel for you.

We wanted her to stay in the hospital too as we doubted any care homes could cope with her behaviour. However, the assessment unit said that they were not geared up for long term stays and if it was felt she needed that she would end up going into a long stay unit which would be miles from us (and prob not a very nice environment, although this was just implied by the SW).

Consequently, we looked into a care home. I looked very carefully at ones that did nursing and EMI and met with the managers. We went over mum's history and I could tell the ones that were never going to be suitable. I went for one that had explanations as to why mum may behave that way and tried to see the person rather than the behaviour. They were the most expensive by far and also the best staff ratios. They also held their own when I spoke to them about how they would deal with mum's behaviours. They were not put off and believe me I gave them the full story and they assessed mum.

She has been there a few weeks and by and large is as settled as we might expect (or indeed, dared hope). The future is never certain but I can honestly say they are better trained than the hospital. Sometimes, the hospital environment is a trigger as there is always a turnover of patients (often challenging) and visitors and it can get really unsettled.

Just ensure you tell the homes exactly how your dad behaves and ensure you are fully reassured (as much as you can be). You have already tried one which went wrong so perhaps look at the reasons for that before trying again. Make sure the hospital are being honest with the home when they go into assess.

We found 1:1 funding was an option if we needed it but so far have not. If you don't have this please ensure you ask for it as this may be the only way a care home may be able to manage.

Good luck with things - I feel for you and please don't get rushed into finding any old home. I found a lot of them would agree to take mum but it seemed to be more a case of filling a place (and getting funding) than actually appreciating how hard it is to care for mum and her complex needs.

Mum has improved since she left the unit - something I never thought would happen. Don't be afraid to try the care home route again.

Good luck.
BG

This is really reassuring, thank you for taking the time to reply - yours is the first positive response I have had of Dad entering a nursing home.

In the meantime, i have requested a copy of Dads care plan and printouts of his latest behaviour reports from the ward but have been told that i am not entitled to hard copies of either due to reasons of the 'Trust Policies'. Whilst I could understand this being the case for his behaviour reports I am amazed that the same could be said of his care plan. I only wished to be familiar with the contents of this so that I was not completely at sea for next weeks meeting.

Thank you everyone for reading this and I wish everyone all the best with their families and loved ones in attempting to deal with this cruelest of conditions.