Continuing Care

[EllieS]

Does anyone have an experience in applying for Continuing Care Funding?

After 3 years of trying, I have managed to prove that my Mother fulfilled the criteria for NHS continuing care funding for a 9 month period ending August 2005.

At that time she was put on notice from the 'residential' home she was living in and I was advised that she needed 'emi residential locked' accommodation. I relocated Mum to such home at our cost, with the result that she is now considered to be fairly stable and NOT fulfilling the criteria.

It doesn't seem right that because of our actions and our monies Mum is deemed not to qualify for continuing care funding. There is no doubt whatever that if we had not moved Mum she would have been in a worse state than at the end of August 2005.

Am I going mad or actually mad to believe therefore that there should be no argument or doubt about it - she should still quality for the funding!

I would be so very interested to hear anyone else's experiences with such things.

Thank you for reading this.

Eleanor

 

[alfjess]

Hi Eleanor
I have no experience of continuing care funding, but I would say you are not going mad, it is the system that is mad.
If your Mum qualified for continuing care 9 months ago, there should now be no doubt that she continues to do so
Sorry I can't suggest anything other than try Alz help line, but do symphathise.
Alfjess

 

[connie]

Dear Elanor, have no experience of what you are going though.......,.,,.but would not want you to feel you are on your own.

Wishing you all the best in your endeavours, Connie

 

[EllieS]

Are there really not people out there with interest in continuing care?

Dear Alfjess/Connie

 

[EllieS]

Ooops pressed wrong button........

Dear Alfjess/Connie

What I was going to say before I stupidly pressed return, was...........

I can't believe that there's no-one out there with any experience of continuing care funding issues.

I'm really glad though because I wouldn't wish this on anyone - but I'm gonna keep on battling to prevent Dad's hard earned cash going to 'Princess Tony' as he used to say often!!

Thanks for your responses though.

Take Care

Eleanor

 

[Skye]

Hi Eleanor

Sorry you haven't had many replies, as you say, it's probably a good thing that few of us have had that experience. It does sound crazy that your mum no longer qualifies, I think the system is beyond anyone's understanding -- except we all understand that it's going to COST.

Good luck with your battles, and let us know how you get on. We're ignorant but interested -- who knows?

Love,

 

[Amy]

Hiya Ellie,
My mum cannot walk, weight bear, talk, feed herself, is doubly incontinent, requires turning in the night, is on a soft diet due to swallowing difficulties - but her health is stable, so all she requires is, what do they call it, "personal" not health care.
Good luck in your battle.
Love Helen

 

[CraigC]

Hi Eleanor,

It may be worth phoning the Alzheimer's HelpLine about this.

http://www.alzheimers.org.uk/About_our_work/Contact_us/helpline.htm

I'm struggling with the process at the moment as mum and dad are both in care in two different local authorites - no one from the local authority is forthcoming with information and they both seem to have different criteria. Follow the links nada gave you which also have some draft letters that you need to write to the Primary Care Trust. My experience is that it is like getting blood out of stone. The system is unfair and complicated when you most need it to be clear and definitive.

Wish you luck and don't give up easy, that is exactly what they are trying to make you do. Sounds like you have a good case - depending on your local authority of course.

Kind Regards
Craig

 

[DeborahBlythe]

Hiya Ellie,
My mum cannot walk, weight bear, talk, feed herself, is doubly incontinent, requires turning in the night, is on a soft diet due to swallowing difficulties - but her health is stable, so all she requires is, what do they call it, "personal" not health care.
Good luck in your battle.
Love Helen

Hello Helen, really sorry to hear how frail your mum is. She sounds very much like mine. Big hugs.

I treat applications for Continuing Care assessments a bit like the lottery. Try it and see. You never know. All the odds are against you, but hey, everyone needs a flutter sometimes. My mum has had three assessments, and fully funded care denied each time. First one said she only needed EMI residential, second one said she needed EMI nursing (but no-one bothered to tell us the outcome for this one until we asked for a third assessment). Third one said she needed nursing again, but this time general nursing preferable to EMI nursing, and a middle band of Registered Nursing Care Contribution. Her notes say she is terminally cachexic ( continuing care is supposed to be appropriate for terminally ill patients, I believe)but in the last month a palliative care nurse rang me to say she would not be visiting my mum in the near future because she says my mum is not terminal! I didn't know whether to laugh with joy that my mother is apparently defying all predictions, or to be cross that a service is being withdrawn from a staggeringly frail and dependent old lady.

I have given up thinking about Continuing Care assessments because it is never a real priority. I will sort it out one day. I think my mother deserves fully funded care, and I think I could tie them up in knots if I had the energy, but I just lack the energy to fight any more battles at the moment. There are more immediate things to worry about. I guess that may be true for other contributors. Not a lack of interest in Continuing Care funding, but just a sense of despair that the system will beat you anyway and the most important thing at the moment is to see that the day to day care of my mum is as good as I can get for her. A pretty much full time occupation.

 

[noelphobic]

I have given up thinking about Continuing Care assessments because it is never a real priority. I will sort it out one day. I think my mother deserves fully funded care, and I think I could tie them up in knots if I had the energy, but I just lack the energy to fight any more battles at the moment. There are more immediate things to worry about. I guess that may be true for other contributors. Not a lack of interest in Continuing Care funding, but just a sense of despair that the system will beat you anyway and the most important thing at the moment is to see that the day to day care of my mum is as good as I can get for her. A pretty much full time occupation.

That's exactly how I feel about it. I do believe my mum should get fully funded care, I just don't have the stamina to take on the battle to get it, especially when there is no guarantee of success.

I think an assessment is supposed to be done annually and her next one is due around April/May. I am pretty sure they will come back with the same decision - that she is on the middle band for nursing care - and will see how I feel about it then.

 

[EllieS]

Pathetic

I don't know what to say, I'm not really surprised to hear of other who's parents are far worse than my Mum and I do so understand when you say there are more important things, like making sure our loved ones are okay 1st.

But................. I just feel I've got to do this - even though it's making me ill, can't stop worrying about all of the bits of paper to and froing from PCT, Solicitor (yes Solicitor) and me. If Dad had not had not had a form of AD he would have sorted his affairs more adequately (he was far from wealthy but had plans for his children) and I do so wish he'd never said he didn't want his money to go to 'Princess Tony' but he did and it plays on my mind.

I feel I let him down at the end of his life one way or another so I guess it's a form of guilt that I just won't let this go. But I have partially succeeded.

Mum's been in care since September 2004 and she's qualified for continuing care funding December 2004 - August 2005. So although I've to pay Solicitor, I've still saved some of Dad's money. And, I guess it's harder to give in now because it doesn't make sense that she still does not qualify.

This country is beginning to stink - wish they'd take care of your parents and my Mum instead of wasting money on aeroplanes for the PM etc etc.

I don't even get to see my Mum as often as I'd like to - run a family business 6 days a week, get home at 7pm absolutely worn out - not as young as I was. Try to take her out for a couple of hours at least weekly and bring her home to get some normality into her system.

I guess it might sound like I want some sympathy but I don't really, I just feel like such a bl--dy failure!

My brother doesn't want to know, he's the one that criticised and criticised about a year ago, nothing I did or said was any good - he would offer no better suggestions about anything though.

I've not spoken to him for months and months and he didn't even send Mum a Christmas Card. Mum's sisters are my only consolation, they are my only support - thank God they're there.

Sorry to be so pathetic - you are so brave - I wish I could do or say more to help everyone but..............but...............

Eleanor

 

[Amy]

Eleanor love,
You do not sound pathetic, and we are not so brave - you are the one who is doing battle, we have given up.

BUT would your dad have wanted you to make yourself ill over money?
Would dad have wanted you to spend the precious time you have wrangling with solicitors, doing paperwork - or with your mum?

IF you really believe that it is the right thing for you to do, to go on fighting, then do so, but don't do it out of a sense of duty, don't do it to the detriment of your own health and well-being, don't do it to the detriment of the time that you can spend with your mum.

If your brother cannot be there for you and your mum, if he cannot offer anything constructive - then let him go. It is so easy to criticise others from the outside.
And DO NOT call yourself pathetic, you sound one very capable, hardworking, compassionate lady.
Love Helen

 

[noelphobic]

I don't know what to say, I'm not really surprised to hear of other who's parents are far worse than my Mum and I do so understand when you say there are more important things, like making sure our loved ones are okay 1st.

But................. I just feel I've got to do this - even though it's making me ill,

My brother doesn't want to know, he's the one that criticised and criticised about a year ago, nothing I did or said was any good - he would offer no better suggestions about anything though.

I've not spoken to him for months and months and he didn't even send Mum a Christmas Card. Mum's sisters are my only consolation, they are my only support - thank God they're there.

Sorry to be so pathetic - you are so brave - I wish I could do or say more to help everyone but..............but...............

Eleanor

Hi Eleanor

I'm sure that no one meant any criticism of you for taking this battle on. I certainly didn't and admire you for doing it.

I have a brother who sounds very much like yours. He hasn't seen my mum for over a year and also hasn't sent a card for mum's birthday, Mother's Day or Christmas. I just try not to think about him. He is certainly not someone who means anything to me. I will have to deal with him after my mum's death when he comes looking for his 'inheritance' but will deal with that when it happens.

I'm glad to hear that your mum's sisters are a support to you. You are most definitely not being pathetic!

Brenda

 

[EllieS]

Thank you

Tears again.......... oh well!

I guess it is a feeling of 'sense of duty' but mainly guilt as well.

Mum's in a home that she has 'settled' in - not perfect (don't think that exists) but she is 'settled'. When she first moved in I spent loads and loads of time visiting to make sure she had the best opportunity to settle. But as time's moved on, business has grown - just lots of things going on - not a lot of time.

What a stupid thing to say, I'm doing this now I should get in the car and see Mum, but I've had a lot of paperwork to get my head around today re care costs etc and I do find it difficult to hold back the tears - each time paperwork has to be dealt with everything comes back - Dad's death etc and I just haven't been able to come to terms with that yet (he died in Feb 2004!!), his ashes are in my wardrobe still. Mum decided she wanted them so that hers could be sprinkled together!! Oh God all sorts of things were going on when and after he died. Dreadful Dreadful time. Mum was absolutely horrid to me on day after he died (she couldn't help it - her sisters and I were with her throughout the night and they just couldn't believe how she was to me next morning - we had no idea she had AD at that time) I just haven't let any of this go. Then my brother telling me what an awful upbringing we had had - stupid me thought we'd been so lucky to have such a nice family life - not perfect, but I'm not perfect, but my Mum & Dad were good parents, they gave what they could in time and support of our interests and were subsequently absolutely wonderful grandparents - that's what we thought anyway.........

I've seen a Counsellor from my GP practice (about 18 months ago) I know I need to do some things for me - join a Gym is what I'd like, where I can meet people and talk about things other than work & family. Swim. Just don't seem to do it! Reluctant to ask to see her again 'cos I've not followed her sensible suggestions.

I still have to finish emptying Mum & Dad's flat and get it rented out or sold - it's one road away from my brother but he does nothing . It's 40 miles away from me but I've gone through all of the personal things (have most of the nick-nacks in my attic - Mum's not dead is she, so I can't get rid) God I hate all of this. Why don't I get it all sorted, become some hard nailed person and just do what's got to be done and that's it.

I'm going to shut up now I think I've gone on enough - what a tangled web we weave - but it's not to deceive. Sometimes it's hard to see the wood for the trees. Any more for any more. I really am MAD!!!

Eleanor

 

[Amy]

Ellie I have to go out now, but will talk when I get back - keep your chin up.
Love Helen

 

[Skye]

Ellie, love,

You sound so upset. Are you trying to do too much?

It sounds as if you haven't yet come to terms with your dad's death. Nothing wrong with that, it can take years. But you should really have someone to talk to about it.

Your mum is comfortable and well looked-after, it's time you were looking after yourself. Your dad would not want you to make yourself ill over this.

I think you should go back to your GP and tell him exaxctly how bad you are feeling. It doesn't matter that you haven't done any of the things your counsellor suggested -- they're used to it.

I had to see one two years ago -- not for the same reasons, mine depression was caused by loneliness and isolation because my husband, whom I love dearly, cannot communicate. I wouldn't hesitate to go back, it's so good to be able to talk through your problems, and work out your own solutions.

Take care of yourself, Ellie. There are lots of people here who care about you.

Love and hugs,

 

[EllieS]

Thank you Hazel

A little love and understanding is probably all I need - possibly a lotta love and a lotta understanding!

Goodnight All

 

[Amy]

Ellie,
Love and understanding - you will get.
I reiterate what Skye has said, if I was you I would go back to the GP and ask to see the Counsellor again. You need to work through some of your feelings.
Love Helen

 

[EllieS]

I will

Thank you so much - I will contact my GP early next week.


Eleanor
x

 

[Áine]

I've seen a Counsellor from my GP practice (about 18 months ago) I know I need to do some things for me - join a Gym is what I'd like, where I can meet people and talk about things other than work & family. Swim. Just don't seem to do it! Reluctant to ask to see her again 'cos I've not followed her sensible suggestions.

Hi Eleanor, only just looked at your thread. Speaking as a counsellor in GP practices I would be very pleased for a patient to come back and talk through things again. If they'd not been able to follow any suggestions I'd made, I'd assume that it was my failure to understand the difficulties, not the patient's failure in following the suggestions though It sounds as though by the time you've finished everything else you need to do, going to the gym is probably the last thing you have time or energy to do. I know when my dad was ill all I could cope with was going to work, visiting dad, coming home and going on the net. Be kind to yourself.