Help, help,help

[petromany]

After waiting for ss to get their act together, have been told today that they have been unsuccessful in getting a respite/residential care home suitable for my hubby. The social worker asked the CC for extra care funding, but to no avail. My husband's needs are very complex, he has no cognitive score, and requires 1-1 care which very few homes have, and the cost is extortionate, anything from £1,800 - £2,000 per WEEK. We have been assessed and been told that they expect us to pay £422 per week for his care and the CC would make this up to their rate of £468 per week, but I have searched the area for CH's and their charges are approx. £750-£800 per week for usual dementia patients, but in our case hubby is so complex that their fees would increase to anything between £1800 and £2000 per week, (that is if I can find anyone to take him. He had a bad experience whilst in respite in July (breaking two windows and putting his knee through a garden gate trying to get out) now it looks at though this will remain with him for ever.

He has calmed down quite a lot now (only being aggressive to the dog) however he needs to have a watchful eye on him 24/7. The ss are now looking out of the area, but I am sure the situation will not get any better anywhere else.

I have applied for CHC but so far I have heard nothing, and perhaps if I get anything, I am sure it wont be enough,I believe their basic is about £109 per week so together with my contribution this will still not be enough. The CC will pay just £44 towards costs and my family cannot help, as you can imagine, they have children that are at Uni and they are financial difficulties themselves !!

I am at my wits end, don't know which way to turn, I am doing my best, but there is only so much I can take, and without getting any respite I can see myself going "mad".

I would be so grateful for any advice as to what I do next. Has anybody been in a predicament like this.......

 

[jeany123]

Oh dear Petromany it s certainly a predicament I am so sorry I can't help but I hope that you manage to get some advice,

Jeany xx

 

[malc]

i might be wrong but i always thought if you turned round and said you couldn't care for him anymore for whatever reason they had to take responsibility for the situation,might be worth a try to force their hand.

 

[Acco]

So sorry to hear of your dreadful situation. You clearly need urgent help and I suggest you make SS aware by stressing the impact it is having on your health and state of mind. As others have said in similar posts, lay it on heavy and sit on them until they take full responsibility which I believe is their legal duty. I sincerely hope the position is resolved speedily for you and your husband.

 

[benjie]

Dear petromany,

I so appreciate your problems and can relate to them. It was only earlier this year that I reached the end of my tether. I had carers coming in to help as hubby had other complex issues. His dementia deteriorated and I eventually called the SS and told her the problems. I didn't need to lay it on as she could tell by my voice. She came out, rang the mental health unit at the local hospital. Upshot was he was admitted as they saw that I couldn't cope at the time and his meds were reassessed. Whilst there I was preparing for him to come home but we went through CHC and it was awarded in full. Previously it had been rejected. The hospital mental health unit usually has a crisis team attached which you may be able to contact.

I wish you every success but certainly keep pushing GP and SS

benjie

 

[LYN T]

Hi Petromany
.

I know this won't show me in a good light but I phoned the SW and told him if I didn't get help NOW I would take my husband to A & E and leave him there.I didn't for one minute mean that but I was frightened of the violence and exhausted.

Remember you can;t be forced to be a carer

Take care

Lyn T

 

[Witzend]

Hi Petromany
.

I know this won't show me in a good light but I phoned the SW and told him if I didn't get help NOW I would take my husband to A & E and leave him there.I didn't for one minute mean that but I was frightened of the violence and exhausted.

Remember you can;t be forced to be a carer

Take care

Lyn T

All that shows to me, Lyn, is how desperate you were, and the lengths that people sometimes have to go to for help when they are absolutely at the end of their tethers.

 

[Helen33]

Dear Petromany,

I am sorry you are in this situation. It is a dreadful state of affairs. My suggestion is that you chase CHC. I found the CHC covered all of my late husbands needs and they were numerous.

I wish you every success.

Love

 

[Scarlett123]

I haven't any advice to give, but couldn't just read and run. I am so sorry for your situation and can feel your utter despair. I know as a carer that I am not a mixture of Mother Theresa and Julie Andrews in the Sound of Music.

I know I am a flesh and blood person, who often feels like screaming and does not have a never-ending supply of patience. I am shocked at the meagre amount you have been offered, and further shocked that anyone could be expected to be able to afford £2,000 a week!!!

As I have said, I have no advice, but I sincerely wish you all the best. How true is the saying "there, but for the grace of God, go I".

 

[FifiMo]

You are being spun a line by the LA! They have a duty of care and are required to provide care at a level that meets the needs of your husband. That is the starting point. The only point. In carrying out a financial assessment, that is to determine what your husband's contribution to his care should be. This calculation is the same for everyone. You are not concerned about the LA quite frankly. They have to pay whatever is necessary to get a level of care that your husband needs. Of course they try it on because vulnerable people who are desperate for support will try and stump up some more cash. Any cash they gain is a bonus to them.

Duty of care is what you need to remind them of. They have the legal responsibility to provide this, not you!

Fiona

 

[itsmeagain]

Just tell them you are at your wits end here and say you simply can`t carry on. That may shift them. Money grabbing authorities are the bane of so many people`s lives.

 

[sue38]

I have applied for CHC but so far I have heard nothing, and perhaps if I get anything, I am sure it wont be enough,I believe their basic is about £109 per week so together with my contribution this will still not be enough.

The £109 per week is the NHS nursing contribution, not CHC. If your husband is assessed as eligible for CHC then the NHS should pay whatever it costs to care for your husband. If he's not eligible for CHC then he may be assessed as entitled to the £109 nursing care contribution.

This factsheet explains the nursing care contribution.

 

[petromany]

Many many thanks for all your comments, I am afraid we haven't got any further because the CH themselves have turned him down .Still awaiting the outcome on CHC,thats my only hope now. Having a new bathroom starting next week, and still haven't got a placement for respite. (hubby dropped a mug into the sink, the mug stayed intact but I am afraid the sink didn't, so having to have all new. Every time I phone either the MHN or SS just cant get through,I leave messages but to no avail, no one ever gets back to me. (Big sigh......)I will keep on trying though. Take care everyone. Nighty night.

 

[chrisuz]

Hi I am in a very similar situation and have been told unless the situation becomes higher substantial or critical there is no help. We too have just had to have the bathroom refurbed, shower to wetroom plus broken sink - bottle of aftershave- and we got no help. The SS didn't even acknowledge my emails. Our salvation was our wonderful hospice where hubby goes once a week. They arranged for him to go to their day centre for a week . Last year we referred ourselves to the hospice, we had to have that endorsed by our GP which was a bit of a battle, he didn't think it was appropriate even though the hospice did. Without the support of the families team there I don't know how I would have got through the last year. It could be worth enquiring of your local hospice. good luck.