Demented and homeless

[Louise.D]

I’ve not posted for a while as I’ve been busy with mum.

Anyway, I’ll give you a quick update.

Mums just gone into an assessment unit to be assessed for NHS continuing care (but that’s another story) I was told yesterday that the nursing assessment strongly indicated that she needs full nursing care. Her current residential home has stated that on this basis they cannot take her back.

The assessment unit have said that she must go back to the residential home by 25th January, the home has refused.

I’ve written the assessment unit a strong letter. There are no nursing home places within the PCT so what’s to happen?

Any ideas on what to do? I can see the residential homes point, I’ve had warning bells ringing in my ears for quite some time now, but to expect me to find a nursing home in two weeks. Impossible!!!

Any advice?

 

[Doreen99]

Hi Louise

looks like she'll have to stay in the Assessment Unit until you can find somewhere suitable.

If you read this, you'll see that there is quite a large problem when it comes to finding appropriate social care for people who are fit to be discharged from hospital.

It's an awful position for you to be in, but it's not your fault that the home won't have her back - neither is it their's, if they can't provide the care she needs.

 

[Skye]

Louise, you need to get your social worker involved in this one.

The assessment unit cannot possibly discharge your mum unless there is a place for her to go. Unless she has been assessed as needing continuing care, in which case the NHS are responsible for finding something suitable, the onus is on SS to find a place.

Your mum has to stay where she is until you and SW can agree a placement. Your SW should ring round and find which care homes have nursing places, so that you can go and look at them.

hey can't give you a deadline like that, stand your ground!

 

[connie]

Louise, just sending you ((((hug)))). Think you need it.

Know the situation in your county (Essex). Not good. If you think I can help in any way, please pm me.

 

[Kayla]

Dear Louise,
I'm sorry to hear about your Mum. My Mum was in a Care Home until she broke her hip and was in hospital for three weeks. The Care Home did take her back, but they couldn't cope as she needed EMI Nursing Care.
I asked them if they could recommend anywhere, as the Nursing Homes I knew about did not take EMI patients. They helped me organise a place at a local private Nursing Home and a mental health nurse came to see Mum to make an assessment while she was still in the Care Home.
We organised the transfer ourselves and the Matron suggested a local taxi firm, which would take a wheelchair as Mum couldn't walk any more. The driver was very helpful and charged less than we were expecting to pay.
After two weeks they moved Mum into the general nursing part of the home, as she was still quite lucid at times and could talk to the staff. Mum received excellent care and started eating again, so she put on a little weight.
Although the home was private, they also took Social Services patients and people came from a wide area of Kent, London and Essex.
I should think that the Social Services would be obliged to help you find a home, if your Mum doesn't have enough savings or a house to sell. If they won't help at all, then it might be better to stay in the hospital until a suitable place is found for her.
My Mum was self funding, but her Attendance Allowance, Registered Nursing Care Allowance and State Pension contributed nearly a third of her weekly fees. She also had two private pensions and rental income from her house, so we only had to take a modest amount from her savings each month to pay the Nursing Home.
I hope you manage to find a place in a good NH, as there are some excellent ones around with very caring staff.

Kayla

 

[Louise.D]

Thanks for your replies, I've written the assessment unit a letter tonight concluding what's been said over the phone with a request for them to confirm in writing.

The trouble is we do not have a social worker as mum does not require funding from social services. Social Services have made it quite clear that they will only become involved when her funds run out. Today I have looked at homes in the area, one is a no goer as it's under POVA investigation, the other's CSCI report is terible and the last bed in my preferred home was taken this morning. I've gone over the border to another PCT and they have said that they cannot meet her needs. All the others have no beds.

I suppose it's like musical chairs, the person with the bum on the seat wins. I'll insist that she stays at the unit until a placement is found.

With regard to continuing care, the staff nurse told me that the application for continuing care could only be made by a nursing home and not an assessment unit. I'm at the stage I don't know the difference between the truth and a fobb off. They have also told me that as she does not present any challenging behaviour then she probably would not qualify.

I've got to get some sleep, I was awake last night worrying and have been really upset today.

 

[Westie]

Louise, you have my complete sympathy and understanding about all this. I am in exactly the same position with my husband who is in an assessment unit.

Team meeting yesterday and I have 14 days to find him a placement. We are not self funding and therefore do have a SW involved, but she is absolutely useless and I have no faith in her at all.

I have exhausted possible homes locally and am now searching further afield but it is so time consuming. I may have now lost a possible suitable bed somewhere as the SW hasn't confirmed any funding details with the home and now seems to have 'lost' my details.

Yesterday was all too much. Nothing new but somehow it all got to me and I just felt utter despair. I broke down in the meeting and couldn't stop crying, on and off, for the rest of the day. I do feel better today though, and hope you do too. Sometimes I think it just helps to get all the anger, grief and frustration out of your system.

A lovely member of staff at the assessment unit told me that as long as I was actively searching for somewhere, then Peter wouldn't just be discharged. He would have to stay there for as long as it took. I should think it will be the same for you. So let them know about the homes that are unsuitable or full up. Tell them about the hours you are spending researching places. It should keep them off your back.

I hope you find somewhere suitable soon.

Mary-Ann
x

P.S. Forgot about the continuing care bit. P doesn't qualify for CC either as not challenging enough at the moment. I too have been told that a NH will assess his needs on an ongoing basis and they can apply if they feel he then qualifies. Fact or fiction? The line is so blurred it is impossible to tell any more.

 

[Skye]

Louise and Mary-Ann, no advice, just sympathy, love and hugs.

I hope you're both feeling better today, and someone comes up with a solution soon.

Love,

 

[Grannie G]

.

A lovely member of staff at the assessment unit told me that as long as I was actively searching for somewhere, then Peter wouldn't just be discharged. He would have to stay there for as long as it took. .

I wish these people would tell you that from the beginning and not put you under so much stress. It`s as if you have to get to the point of breakdown before you get any understanding.

They are withholding information.

 

[Louise.D]

Still in a crisis. Er well sort of. Don't know really.

Have not found anywhere, still looking. Mum has to be placed in a high dependancy chair during the day so a couple of the homes I've looked at today cannot accomadate this and various other excuses as they don't want to take her as she's too frail/malnourished. One home that has a vacancy will take her but costs a small fortune so she will run out of money and have to be moved anyway so I cannot see the point. There is a vacancy in a large chain of homes about a mile from me but it does not have a good reputation and the decor is rather offensive. I guess I can decorate her room and give her sunglasses while she sits in the lounge. That way I can visit everyday, even twice a day. And the staff nurse was nice. My family won't like it as there a bunch of snobs and only interested in what the place looks like. But hey, they only visit every two months so why should I care. She's my baby and I guess it's nothing to do with them (Ha, they got her some body scrub for Christmas, should work wonders on the grade 3 pressure sores)

The assessment unit have told me that she will be transported back to her residential home who have told me that they will refuse to take her in. The assessment unit have told me that unless I find anywhere she will be placed in emergency accomadation untill I have found a home for her OR she will be deposited back to her 'offical residence' my doorstep.

To make matters worse my mother in law passed me an article out of her local paper. The chain of care homes that mum was in have been 'done' for manslaughter as they have failed to feed an elderly person (4 in fact) My mother has lost 6stone in 6 months but since she has been at the assessment centre she has gained a kilo. The residential home never had a dietician visit nor did they inform her GP, nor did they follow recomendations from the speach and language therapist.

Bl**dy Hell am I trying to look at all the negative things that are happening and have happened. But I cannot rest, the assessment centre told me that the residential home should of requested a nursing assessment earlier and that their method of hoisting mum was completely inappropriate and has probably damaged her back/shoulder.

I just want to find her somewhere really nice now so I can enjoy visiting her with my children. I have not seen her for two days as I'm busy trying to find accomadation. I suppose now she's in the assessment centre I don't have to worry about her care. No wonder why there are so many bed blockers.

Going to drink a bottle of wine and have some crispy duck from the takeaway. Eat myself happy.

Mary Ann - How you doing. Sending you some virtual wine slurp slurp.

 

[germain]

Hello Louise D

No sure why you think she will have to be moved once the money runs out - Local Authority has to help with funding once capital drops below £21.5K and they pay totally once its down to £13.5 K

Can you get an emergency financial assessment done so that you know exactly what the costs will be when this happens and who pays what ? We're very lucky here (frozen North) in that our LA doesn't allow homes to charge top-ups - and they don't move people at all because of funding problems.

Regards
Germain

 

[jenniferpa]

That's correct as far as it goes Germain. Unfortunately though, most LA's set an upper limit or standard amount that they will pay. Now from what Louise says there is a home that will take her and is cheaper and a home that will take her and is more expensive. I think it's extremely unlikely that the LA would cough up for the more expensive one when the time came if there's a cheaper one that fits the bill (mind you "fits the bill" is relevant - if the only home suitable is more expensive they have to pay up).

 

[Grannie G]

Louise your post is deeply disturbing. I can`t offer any help or advice, I only wish I could, but it`s as if your mother is now of no importance to anyone but you.

 

[Louise.D]

Thanks for your reply Germain,

If she goes to the expensive home then her money will drop quite quickly. My mum is 76 and her mum lived to 96 and her dad 92 so I have to assume that she may need care for quite a few years.

Early December the doctor gave her between 3 months and 1 year depening on her catching a flu bug or sickness. Since she has been in the assessment unit her condition has improved so much it is almost a miracle and I feel that I have got a little of my mum back. When she went in she was in a semi coma and now she is drinking for a sip cup. She knows my name and understands what I say to her. She watches the TV and chats to the staff. She has not done this for months. We thought we were at the end early December but I don't think that we are. Yes I'm probably kidding myself but it maybe probable that she may get better. In fact it may be possible that after some period of time her needs may not be nursing but residential. But, they stated on the assessment that she had a rapidly progressive condition.

I cannot suggest that she has a financial assessment, my brother has EPOA. He has just sold her house in London so the funds are there but how much I have no idea.

If she were to require funding, our local authority only gives £570.00 per week for nursing care. The RNCC gives £110 towards making a total of £680. The less expensive care home is £680 per week. This does not even leave the £20.00 a week 'pocket money'. Not that my mum needs pocket money as I pay mostly for everything but her care home fees anyway clothes, toiletries, hair etc. I think that alot of families are in this position, my husbands good, he let's me buy what she needs out of his wages and he won't let me ask for reimbursement. It's not my brothers fault, he finds everything so hard and I don't like to worry him as he's got a megga stressful job and two young demanding children. The EPOA thing is a nightmare and we are both terrible with keeping accounts.

My husband and I are going to visit both homes tomorrow and decide which one.

I can't believe that in May I was telling her off for washing up dishes at my kitchen sink, I can't beleive that a year ago, last January we were shopping in M&S and in August 2006 I was sitting on the beach with her watching her dig sandcastles with my kids.

I can't believe how unprepared I was for all this.
Sorry I'm blabbing, it's the wine.... I'm going to bed now before I have a breakdown.

See link below for manslaughter article.

http://www.thurrockgazette.co.uk/search/display.var.1977737.0.6m_dividend_as_standards_slump.php

 

[jenniferpa]

God - it makes you sick doesn't it? No wonder people are so skeptical about care homes.

Louise - I'm absolutely appalled with what you and your mum are going through. Do these people not have any compassion at all? I simply cannot (or rather I wish I could not) believe that they can take this approach - send her to the residential home? Drop her on your doorstep? It's mind boggling it really is.

 

[Westie]

Louise, thanks for the virtual wine - I converted it into reality and added a curry for good measure. (Sylvia, sorry about the diet!)

I hope you are able to make a decision today about a home for Mum. That would be such a weight off your mind.

I too found a lovely, very expensive home but I knew it wasn't really right for Peter and we couldn't afford it anyway. The home I'm now considering looks shabby by comparison and I just know his family are going to recoil in horror when they see it. I'm clinging like mad to the fact that the manageress and staff are lovely and have showed me more compassion and understanding than I have received from anyone else at all - except all you lovely TPers. The CSCI report was quite good (all 3s) which compares very favourably with some terrible places I have read about and viewed.

The assessment unit have obviously done a good job in actually caring for your Mum and it must be such a relief to see the improvement in her condition, but I can't beleive they have threatened to send your Mum home to you. What an awful position to put you in.

Good luck for today and let us know how you get on.

Mary-Ann
x

 

[Louise.D]

Thanks for your support.

I've had good fortune on the back of a families saddness. Earlier today my husband and I decided to accept a place at a home that I had reservations about. I collected my mums stuff from her old residential home and loaded my car up.

On the way over I had a call from another home that I'd viewed and liked alot but didn't have any availability. Sadly one of their lady residents passed away last night and they have a bed. Her family knew of mums situation and cleared the room. I looked at it today and my mum moves in on Tuesday/Wednesday as soon as the appropriate mattress is delivered.

The reason the assessment unit wanted to send mum back to me as it my address she was admitted from on their paperwork and it's classified as her 'home' although she has not lived here for 7 months.

Westie - You have to go with the care and not the decor. My family too will recoil but I'm past worrying about them now. My mums room will take me no more than an hour to sort out as it's soo clinical. A trip to Paul Simon for curtains and Primark for throws and cushions. Could you not ask the family to come with you? I've invited my Aunt to view who can be scathing with her snide comments. She's refused.

Anyway it's all worked out for me and mum. Alot can happen in a weekend and I'm so pleased. I'm feeling more positive.

 

[Grannie G]

I`m so pleased for you Louise. I hope your mother settles well and you are able to wind down after so much stress.

Love xx