Advice for continuing care?

[dawsbird]

I am now 2 years and a bit on from my original post. and my mum has been in a Rehab center for just over a year,

Her condition mentally in terms of emotion has improved greatly from her glum and depressed and sometimes angry demeanour in the hospital ( where she was kept in a geriatric unit for a year and a bit with little or no stimulation and no one willing to acknowledge the fact that she had a brain injury and was not geriatric)

However, the bodies who fund her stay at this centre are now pushing proceedings to move her. They have done this to her before as well as many other patients even younger than her.

They are taking my mums case the board where the two current funding bodies for my mums case will battle it out - so to speak - over who should pay for her care.--- Once this has been determined we will know a budget and once again be advised of a list of local care homes to visit that she should/ could be moved to.

The reason for my update and plea for advice is the following.

1. If we don't pick a place in the given time frame, there has been a threat she will be moved into "emergency accommodation". -- IS THIS ALLOWED?

2. Once again the list of places provided will be care homes - This is not suitable for her, we have a report which states she needs 2 carers for personal care, constant supervision when moving around, eating, using the toilet and person care, and drinking.

3. Most of the local places we have already seen all of which said they could not accommodate the above.

My Mums condition is one of confusion and she often speaks in jumbled sentence and can seldom answer straight forward questions. She is happy and content and has build up good communication with the current employees at her centre she is in now. She is mentally stimulated through activity and outings which helps with her emotions and lessens her confusion.

I find it difficult to explain what she is like but I can only say that although in terms of rehab she may not have improved greatly, she is certainly in the right place for her state of mind, safety and her care needs are met with staff and care.

She is 60 years old and has had a brain injury - she is not a 80 year old with dementia or Alzheimer's. I find it hard to believe the bodies who govern the care funding, would be happy to put her into a care home where she would not be meeting her care needs and would have no stimulation.

The initial reason her rehabilitation has been lessened is due to the amount of time it took the NHS to make a decision meaning she was left in hospital (as already mentioned) FOLLOWING her brain injury for over a year. Any of person who has had an identified brain injury has been out within a month and into slow stream rehab. (including another person I know) and are on the mend.

I feel due to this her case should be re considered and due to negligence , she has not had the opportunity to get better and come home.

Has any one had a similar situation or any advice?

[razyheath43]

Not direct advice iam afraid,look up the mental health capcaitcy act,i know you're mum has B.I but i should think that would be the nearest thing. Keep fighting and i wish you and mum all the best.

[dawsbird in reply to razyheath43]

Thank you That's great I will look into it!

[razyheath43 in reply to dawsbird]

Pleasure

[razyheath43]

carersuk.org/mental-capacity

[razyheath43 in reply to razyheath43]

Hope this link helps

[StrawberryCream]

It is a difficult situation because no rehab centre is ever going to be an indefinite long stay place because then they would become effectively bedblocked to others in need of a rehab service to help there recovery. I am guessing that the rehab centre and the 'funders' will have been assessing the amount of recovery she has made since sustaining her brain injury. How rapidly or slowly that recovery has taken and therefore the possibility of whether or not more significant recovery is likely to occur. The significant bi recovery largely happens in the first two years and then it slows right down. That doesn't mean that more recovery won't occur but it won't usually be as significant. Unfortunately most care homes are going to be predominantly elderly people with dementia etc as there isn't enough need of people who are younger to have places specifically for younger people. These days lots of younger people with 'care needs' are supported at home in a variety of ways. I have a friend who has early onset dementia (in her 50's) and all the services are for older people with dementia. At the moment she is supported at home with careers coming in 4 times a day but if she gets to a stage where she requires residential nursing home care likewise she will be placed in a situation of the only younger person with the elderly. It sounds like your mum needs nursing care home rather than a residential care home.

[dawsbird in reply to StrawberryCream]

Thank you for your advice -Yes I agree. Unfortunately we do not have the capacity to have my mum at home. ( for various reasons) at this time which is frustrating for us as it is definitely an option for a lot of people.

I know that she cannot stay in the rehab place for good (as much as that would be great because the people and location are perfect) We are fine with her being moved - providing the places suggested are suitable and can care for her complex needs. (all of which so far have told us themselves they could not accommodate for her)

[Misi_moo]

I could be completely wrong but unless u have power of iterny then they can do as they please .

My mother is also 60 and spent 6 months in a mental unit she has brain injury , depression and anxiety and vascular dementia , at first the shouted about residential care however we spoke to social services and together arranged a care plan to rehabilitate her into her own home - granted it is proving difficult at present but as you can imagine ... she would be a fish out of water in RC and we believers it would make her deteriorate much quicker .

Stick to what you firmly agree xxx I hope you get it sorted xx

[dawsbird in reply to Misi_moo]

Thanks for the support. My Mum could not go home at this time for various reasons with regards to my dads health and capacity of the home. - I feel the same about My Mum, she would deteriorate and go backwards particularly in her moods and things. - My dad has power of attorney which is useful

[Sem2011]

Hi

I am not sure, but I would go with your gut feeling. The fact your mum already has a year in hospital before rehab, I am would have thought there is a case to answer your mum would need ideally need an environment, which understands brain injury. Improvement post two years can be attained, and your mum is only 60. I would advise contacting adult social care for assessment, and contact Headway to see if there is an appropriate accommodation/or care at home for your mum. A rehab centre in Kent has sheltered housing as part of their service.

Would it be useful for your mum to attend Headway day centre (we have one in East Sussex)? Too often I have heard/seen BI people residing in accomodation, which is wholly unsuitable for their needs, often worsens emotions and anger because of their environment. I think now would be a time as another ,ember of forum said to ask if not already. For power of attorney.

[dawsbird in reply to Sem2011]

Exactly how I feel. Im not sure how or if she would benefit from a group. she is often dis orientated - I didn't mention in the post above she also have very reduced vision due to a hereditary condition which hinders her greatly. What do the groups do? I know it certainly wouldn't hurt her - she just wouldn't know where she was and I'm not sure her reaction. - worth looking into. - I guess I feel hard done by on her behalf due to the NHS's lack of urgency in getting her into rehab. - this has certainly hindered her recovery permanently.

[Sem2011 in reply to dawsbird]

I believe day care provides activities chess, painting , pottery etc . I have never attended. With your mother's visual issues this may not be valuable, but you could ask.

Good luck.

[Candace8]

Sounds were she is it not the place for her. Check other places, I'm sure you have but , for example, we have a place up her called "the shearer centre" don't know how that's spelt, the Newcastle footballer up here and I didn't know about that till a friend told me. It's amazing and will help her through everything she could ever need so check for something like that down there. T must OF caught on ts so amazing. It's as amazing as shearer was 😘

[dawsbird in reply to Candace8]

Thank you I will look into thi