What do I do???

[Judes]

I have cared for my mam for the last five year's - she was diagnosed with Alzheimers 3 years ago. She was placed into respite for 2 weeks last Monday. I was informed by social worker today that mam needs 24-hour care and that she has to leave respite home on friday by which time i need to have found a home which provides EMI nursing - highest band of care. I was not prepared for this and didn't want to hear this - I have struggled to care for mam whilst working full-time and raising a young family with the loving support of a good husband for the last 3 years. I really don't want her to go into a care home but have to admit to myself that she will be safer there. I just want to ask others on this site how on earth am I supposed to find a suitable home - one which i feel will fulfill all the requirements I have in 3 days!!! I have been told mam needs 24-hour care and when i asked the social worker what would happen if I can't find a suitable home by friday I was told well I'll have to see what my manager says about that.

Judes

 

[Kathleen]

How I loathe the attitude of so many social workers. Now I know why my late Dad was so adamant not to involve them when Mum was diagnosed 3 years ago.

What gives them the right to dictate what we have to do.

Our loved ones are human beings who deserve more respect than being put where total strangers in the "caring profession" decree.

Your experience is,unfortunately, not uncommon we seem to be told to do something they decree is the only way forward and are then left floundering about trying to organise it. If it is so important that your Mum is placed in an EMI home, surely they have a duty to find one or more for you to look at

If this social workers manager is adamant that your Mum has 24 hour care that they have decided you can't provide, send your Mum to their house, I bet they come up with a place in a heartbeat.

Sorry I can't be of any practical help, but I do feel for you. Stick up for yourself and your Mum, you deserve respect, not to be treated as if you have done something wrong.

Kathleen
xx

 

[jc141265]

Crossing my fingers for you

Like Kathleen I can't offer much practical help. But I'll offer my story that may give some hope, I hope we weren't just lucky and that something similar might happen for you.

We were very lucky, so lucky in fact it renewed my faith in fate...a little bit, still can't justify the rest of what fate has done..<grumble,grumble,grumble>.

Dad had gotten to a point where he just couldn't be looked after at home anymore, he was sent to 'respite' as my Mum was about to turn into a pumpkin from the stress and then the respite rang up and said that he was too hard for them to deal with and we'd have to take him home again! Them with multiple nurses & carers, training and incomparable resources!

It was then that fate took a hand, Mum desperate to find help decided to ring just one more home, it was a home that wasn't even listed as being able to look after people like Dad but we were desparate. She went in to see the place after surprisingly they told us they could look after people like Dad, and the head coordinator by coincidence had the same maiden name as Dad and then announced that her father's name was exactly the same as Dad's!! Turned out they had a place come available just that week (first time in ages) and so Dad could be accomodated. What topped it all off this particular home is walking distance from my house!

There is no such thing as far as I am aware in Australia where a social worker tells someone their family member MUST go into a home, its nigh on impossible to get a place in a home here and so they keep encouraging us to keep our AD sufferers at home to the point where it is impossible. So I guess we have the opposite problem.

I hope fate helps you in the way it did us, my fingers are crossed for you. Very hard situation you are dealing with.

Thinking of you,

 

[Brucie]

Hello Judes

it is a dreadful situation isn't it?

It is similar to what happened for us.

Jan had gone into an assessment unit [third time in two years] and they had let her fall, fracturing her pelvis. Since then [1991] she was never able to walk again, her mental condition nose-dived and they then had to assign her a one-to-one carer at the hospital.

I was then summoned to a meeting where the doctor said "you must find a permanent home for your wife in the next week. She is bed blocking here"

Had I not been so amazed I would have punched her. As it was I made it very clear that I had expected Jan to remain at home in my care, but that her needs had now escalated to the point where that was not possible. I also made it clear that she had walked in, having been able to agree to do so, and the hospital had basically trashed her. If I had the energy then I would have sued, for Jan's sake.

I did check out some homes in the next couple of days, but at upwards of £35,000 per year and not even EMI registered, they were out of the question.

That is when the Alzheimer's Society pointed out to me, and to the hospital [which had no idea about this at all] that Jan fulfilled several of the criteria for Continuing Care funding. Soon after, the hospital said that, when a place became available, she could be moved to the home where she now lives, all care paid for by that funding. The original doctor had been moved off the case.

Have you checked on how you stand with funding?

The only thing I will say about all the above is that Jan is now in such a good care home, and I do realise that I would not have been able to manage at our home much longer - but then I had no help available to me at all. These days the Continuing Care funding can cover home care as well.

 

[doris]

Just a quick question- what sort of home do AD suffers go to with EMI care are they called nursing homes or residential. Whats the difference?

 

[Kathleen]

Hello again

My Mum is in a secure residential EMI home, has no help with fees at all.We cover the £2,000 a month fees with her basic pension,attendance allowance and what it left of her savings.

We have applied for funding, but don't hold out much hope for that.

Our next hurdle is to sell the home she and Dad took such pride in, but, that's life.

Kathleen
xx

 

[CraigC]

Hi Judes,

the term EMI covers Elder Mentally Infirm which some homes prefer not to use now. So looking for a specific EMI home may be a bit missleading. Just make sure that you discuss this with any home that you contact.

I spent hours on the phone discussing these issue with the homes that I called and they were all aware of the term EMI. Some residential homes may be able to accommodate your mum as well as nursing homes. It is up to you, but make sure that you keep a list of questions that reflect exactly what you want for your mother. You should be aware for example that some homes will take EMI residents as well as people with other mental health problems. Depending on your location, you should also be able to find homes that deal specfically with the needs of elderly with dementia and look after people at all stages of dementia.

Once you've narrowed it down, go along and visit the most suitable and make sure you ask all the questions again along with a very good look around.

I know you needs are immediate, but the above may help you find something that's right for your mother in the long term. The social worker, by the way, has a duty to help you find somewhere in the short term and they should be well aware of this!

One contact that I used to help find a place for dad was the Elderly Accommodation Counsel....they will give you a personalised report related to needs and areas. You can then narrow down the list using the phone and a bit of footwork. Excellent helpful advice. And of course don't forget the Alzheimers Help Line - again, very clear and excellent advice 0845 300 0336

Elderly Accommodation Counsel (EAC)
This national charity provides detailed information on all types of accommodation for older people in the UK. They can also offer advice and guidance to help you choose the type of accommodation most suited to your needs.

Contact: Elderly Accommodation Counsel
3rd Floor
89 Embankment
London SE1 7TP
Advice line 020 7820 1343
Email enquiries@e-a-c.demon.co.uk
Website www.housingcare.org


Kind Regards
Craig

 

[Brucie]

Hi Kathleen

have you called the Alzheimer's Society Help line - they may be able to help in seeing whether funding is possible.

I wouldn't rely on the people who have to pay the money ultimately! They will often try not to spend it, especially as it is not a once only payment, but a commitment for a period of time, albeit with regular reviews.

 

[Sandy]

Hi Judes,

So sorry that you have been put in this difficult position and well done for caring for your mother for so long at home.

I agree with what others have said about not letting some petty bureaucrat bounce you and your mother into this decision with a 72-hour deadline. If Social Services have assessed your mother as needing 24-hour care, they then have an obligation to see that this care is provided.

Here are some miscellaneous things that may help.

Your mother may qualify for what is called NHS Continuing Care, which basically means that all her costs will be picked up by the NHS. You can read more about it here:

http://www.alzheimers.org.uk/Caring..._and_nursing_care/continuingNHShealthcare.htm

The Sunderland Council web site has a page of information on care homes in the area:

http://www.sunderland.gov.uk/Public/Editable/Life-Episodes/ANCS/older-people/care-homes.asp

Strangely enough, the link to the council-run homes doesn't work - it brings up privately-run homes...

The Comission for Social Care Inspection has a home search facility here:

http://www.csci.org.uk/registeredservicesdirectory/RSSearchCategories.asp?Action=SearchCats&Type=CRH

You can search for care homes with nursing, licensed to take people with dimentia in your area (by post code or area). Here is an example of a search for the Sunderland area:

http://www.csci.org.uk/registeredse...are Home&servCats=1&userCats=2&SelArea='B110'

You can also read inspection reports for the various care homes on the CSCI web site.

Take care,

Sandy

 

[Kathleen]

Hello Bruce

I have given the task of chasing funding to my brother with all the relevant phone numbers, but I will check with the Alzheimers Helpline too.

Thanks for that, I expect it will be a long haul to get anything, but it is worth a try anyway.

I have learned not to get my hopes up any more, that way I am not dissapointed.

Kathleen
xx

 

[connie]

Can only emphasise. My heart goes out to all of you in this situation. I do not know what we will do when the time comes. Take heart, stay calm, and my prayers go with you, Connie

 

[Judes]

Hello all,

Thanks for your replies. I've been to look around 2 care homes since i posted message yesterday. I didn't get a good vibe from the first one but the second one was much better. The smn in charge was a lovely woman who genuinely seemed to care for her patients. She was welcoming and friendly and I could see my mam fitting in there. I've got a few more places to visit but i'll let u all know how I get on.

Thanks again for your advice.

Judes xxx

 

[Geraldine]

Dear Judes

A tip that worked for me. If you have found a home you like go back for an unannounced visit and see how you are welcomed. I did for the home I liked for Mum and the Manager took me immediately to the staff room and introduced me to a Senior Carer who would look after Mum and she answered all of my questions and took me on another tour. I too looked after Mum at home with the support of my husband and I had a young son, unfortunately I realised that not only could I no longer physically do it but my son was suffering and so was my husband although he would not admit to it.

On finances, if there is no property to sell and you Mum has under £21,000 in capital she should get help towards her fees paid until it drops to around £13,000 when it is all paid for even if she doea not qualify for Continuing Care. Age Concern and Help the Aged all have excellent fact sheets.

Geraldine

 

[Judes]

Thanks for that Geraldine.

I've gone to all the homes unnanounced - better that way then if there is anything to hide they don't have any time to. I've decided that the second home I went to see is where I want mam to go.

On the topic of social services I too have found them to be quite 'unbelievable' as far as help is concerned. The day the social worker came to mam's home to assess her she told me that even tho mam's doctor had requested emergency respite she couldn't just get her into a home straight away - it would take time to organise. It took her six days. I requested a list of suitable homes from her and waited five days for this - and then I had to phone her and ask her to fax it to me as I still hadn't received the one she sent in post. She rang me today - I had been in possession of the list less than 24 hours - and she sounded disappointed that I hadn't found a suitable home in the time!!!!

Judes x

 

[sequoia]

Social workers

I've also been hard pressed to understand my relative's social worker. I think one thing going on is when a social worker makes reference to their manager it actually often means (it seems to me) that they are still in training. Therefore, they are not as experienced when dictating what relatives have to do as they would like the relatives to believe. This is where getting to know one's rights and the rights of one's relatives along with the duty and responsibilities of social services/social workers is important. As has already been said, social workers have a duty of care and should be helping to find suitable homes. They should also be going to visit the homes with their clients.

Another organization I found helpful is "Crossroads for Carers". I believe they have offices all over England and can be very helpful to carers of relatives with dementia.

 

[Norman]

Hi Sequoia
Crossroads are wonderful organisation find them at
www.crossroads.org.uk
Norman

 

[Geraldine]

Can't praise Crossroads enough. As for SS don't get me started. When Mum had to go into care from hospital the Social Worker on finding that Mum had enough money to self fund fro about a year said ' You don't need my help then' and that was the end of the meeting. I was given a list of homes by the Psychiatrist who saw Mum and the Ward sister was helpful to.

geraldine

 

[Nell]

Like others, I believe you should not let anyone push you around. If you have the confidence to do so (not sure I would!!), you could say something like:

"Yes, I can see my mother now needs more help than I can offer. As I was coping until she came to you for respite, I can only conclude that the stay in respite has made her worse. I will be leaving her here until I find a SUITABLE place for her (not just any place that is vacant). If you care to assist me in my search I would appreciate it."

Fortunately, here in Australia, I have never heard of this happening. As Nat says, it tends to be the reverse.

What I can say is that these types of "orders" are completely against the whole philosophy of "social work" as a profession. This social worker is not only betraying you and your Mum, s/he is betraying her/his profession.

Thinking of you and wishing you luck.
Nell

 

[Judes]

Hi everyone

Hi all,

Once again thanks for all your advice.

Mam went into the nursing home on Friday and I've been in to see her three times, she seems to be settling in well. The staff there are lovely and are treating mam well. I've just received a letter from our local Health Authority and although mam requires the highest band of EMI nursing she doesn't meet the criteria for fully funded care. I'd already looked at one of the sites Sandy mentioned, and had downloaded the pdf on continuing care. I shall be looking at this to see about an appeal as I hold the same opinion as most carers of someone with Alzheimers - that if they had any other terminal illness their care would not be charged for.

I'll keep you all posted as to the outcome.

Judes x

 

[Lulu]

Thank You Craig

Do not ask me why, but I have just seen this link to Elderly Accommodation Council and have just visited their website. Mum doesn't need nursing home care at the moment, but I have been intending to look into it for some time ..I would hate to have to do this at the last minute. Hopefully, it will never come to this, but from your link, Craig, I have been able to narrow things down, now know exactly where to start, and shall begin to make enquiries tomorrow. THANKYOU. Lulu