Can this be right?

[lyn]

Mum is still in hospital. Although sis & I were desperate and determined to bring her home, it is clear that we will not be able to cope. She hasn't eaten for 3 weeks now and hardly drinks - due to her unexpected cancer diagnosis a feeding tube is not an option. She constantly rips out her drip & is doubly incontinent. We have been told that care at home could be provided but there would be a number of gaps during the day & all night when mum would not have nursing care. As they have given her 3 months she has been banded catagory one which entitles her to full continuing NHS care. We spoke to an "independent" social worker who said that mum would be cared for in a nursing home of our choice (they would give us several to choose from) capable of dealing with AD and palliative care. I asked what would happen if mum was still around in 3 months time bless her & was told that they wouldn't throw her out on the street but would review her situation. She might be moved to another nursing home & her Pension & savings used to top up the cost of her care. I tried to digest what had been said & the conversation went elsewhere. After a while I asked - when the time came would mum be allowed to go to a hospice & spend the remaining time being cared for by the Macmillan nurses. The reply was - well, this is a difficult situation, you don't really want to move your mum once she is settled in the home do you? It probably will be better to leave her where she is.

So, let me get this right, if mum lives longer than 3 months, it's ok for her to be moved from a place she has got used to as her care would obviously be 'cheaper' in the new home. But, when mums time is up and we want her to be cared for in beautiful surroundings and pampered till the end we are not supposed to move her. This sounds a bit contradictory but the hospice local to us is like a 7 star hotel & although mum would not know why she was there, she would appreciate the surroundings and the care. I find it very difficult to believe that mum will have to 'fork out' should she live longer than 3 months! The cancer is not going to suddenly get better, things are going to get worse. How can they make 3 months the cut off time? I'm more concerned with them possibly moving her to a lesser 'cheaper' home. This is just a nightmare. Lyn

 

[connie]

Lyn, no answers for you, just wanted to send you a hug, and say take care of yourself.
What an awful situation to find yourself in. Thinking of you, Connie

 

[Sheila]

Dear Lynne, when my Mum was in similar situation, I was told she would be re-assessed at the end of six weeks. As long as she still needed the care, this would continue to be paid for. If your Mum has terminal cancer, I can't see that changing so perhaps the SW hasn't quite got the gist of continuing nursing care. Is there someone else who could explain it more thoroughly or perhaps our Alz helpline could shed some light. I believe Brucie had similar dealings, perhaps he can help here, can you tell us anything Brucie please? Try not to worry, just be with your Mum and let the official bods take care of themselves, it will all pan out in the end. Lotsaluv and a hug, She. XX

 

[Brucie]

I wouldn't have known about NHS Continuing Care funding had I not been alerted to it by Ronnie Callanan - she worked at the local AS branch specialising in Early Onset and was a gem. She has since moved and I think is with Crossroads now.

Ronnie pointed out the Continuing Care criteria to Jan's consultant and that's how Jan got to be where she is today. The expectation is that she will always need that funding, but on days like tomorrow - her annual review - I always quake in case the local NHS PCT decides otherwise. I have no idea what would happen in such a case as we neither of us has any money to privately fund her care.

So I'd try working with the local AS branch if you can, and if not them, then maybe the CAB?

 

[Sandy]

Continuing Care Policies

Hi Lyn,

It sounds as if your hypothetical question about your mother's health in three months wasn't something that the social worker was expecting.

The problem with continuing care, which I found out when I started to look into this for my father-in-law several months ago, is that the situation varies from Health Authority to Health Authority and from Local Authority to Local Authority. It appears that the NHS issued guidelines in 2001:

http://www.dh.gov.uk/assetRoot/04/01/22/80/04012280.pdf

Pages 6 and 7 of the above document seem the most relevant. It does mention something about social security benefits (possibly like attendance allowance, pension credits, etc. ?) being downrated after specific periods of time. I think something similar happens when people stay in hospital for prolonged periods?

Unfortunately there is not a great deal of information about continuing care on the internet. To obtain the details of the policy as it is applied in my father-in-law's county(Essex), I had to write to the PCT directly and they sent me a paper copy (it is not online ). I would strongly recommend that you get a copy of the policy that applies to your area.

Reading through the Essex policy, I would say that the likelihood oof your mother being moved after 3 months is almost non-existant. Here are some of the key passages which may be of use to you, or to others looking into continuing care (sorry for the tone of the bureaucratic language):

"Eligibility Criteria for Health and Social Care" - Practioners Handbook

Health Authorities: North Essex Health, South Essex
Social Services: Thurrock, Essex, Southend

March 2002

Situation Five - People who are terminally ill and cannot be cared for at home
Health (NHS) is responsible unless the conditions for Social Services accepting responsibility apply.

Social services are resposible if, at the point of assessment, the person's condition is such that their needs can be met in a Residential Home with community health services and medical opinion is that this will remain the case until death.

Notes

...

2. The key to the effective operation of the criteria is the clinical diagnosis of whether someone is terminally ill. Only medical practioners can determine this. ...

3. The definition of being terminally ill is if someone is expected to die within three months. Whilst this affords a measure of judgement, if the person has an illness as a result of which there is a less than 50% chance of surviving beyond three months, it should be said that the person is expected to die withing three months.

4. The definition of being terminally ill excludes older people who are expected to die within the short term as a result of frailty and a series of health problems - the last of which may claim the person's life although would not normally, and on
its own, prove life threatening.

5. Medical practtioners should be aware of people who fall into this last group. They should not be moved from Health (NHS) settings if that is where they are at the point that it is expected they will die in the short term, unless it is appropriate
for the person so to do.

6. Whilst the criteria set out what is believed are appropriate responsibilities for each agency which should provide a smooth and seamless service, nothing should get in the way of good local working arrangements which support flexibility in the light of the person's needs and local resources. It will also be important to take into account the service user's own wishes, most especially in relation to choice of who provides personal care. ...

7. The three month prognosis should not be applied rigidly. It may be that a person who it was thought would die within three months and is placed in a Health setting actually does live longer. In that case, the Health service will continue to accept responsibility so long as death is expected to occur in the short term. Equally, a person may be accepted for Social Services care and die within three months. There can be no retrospective claims when decsions have been made in good faith.

Point 7 should help to reassure you that the three month guideline is just that, not a hard and fast rule. Based on the general guidelines and the Essex policy, it sounds unlikely that your mother would be asked to move homes or to contribute to the costs of care from her perosnal savings.

Hope I haven't overloaded you with information and that it has been helpful in some way.

As Bruce has already said, the Society Helpline would be a good source of information.

Take care,

Sandy

 

[lyn]

Sorry, Very Long

Heart felt thanks to all of you who replied.

Well, here's the next installment. On Monday whilst visiting mum the "big, boys" were there too. The Consultant explained that people don't die in agony these days and that mum would most likely go to sleep and fade away peacefully. You can imagine how I felt. I asked why they had given mum a drip again, she kept ripping them out. Why were they trying to prolong her torment? If it was a dog we were talking about it would have been put down by now. The Consultant agreed & rubbed my leg sympathetically & said I was a wonderful, loving daughter & they were waiting for me to say something along these lines. They weren't allowed to ask me if they could remove mums drip & let her go it alone. they would just allow her to 'drink' what she wanted (which was hardly anything). Again I asked 'the' question as I have to know what I am dealing with, how long can a person go without water? About 6 days I was told. Well, I nearlly fell out of my w/chair. I said sis & I both agreed & the drip was removed that night. I was distraught - 6 days max.
The next day I was called into the office & told that mum has started drinking! Quite a lot, but now they weren't sure what to do with her as she was now to well to go into a hospice but did need 24/7 nursing care. They apologised for upsetting us so much as now the 6 days don't apply as she is drinking more so we probably have a few weeks left with her now. Trying to cut this v long story short. Against all our principles we went to see a Private Nursing Home. Told ALL our fears to the matron & was assured that her continuing NHS care would continue until the end, no matter how long it was, saw & spoke to other residents & visitors & after a few phone calls mum moved in on Wednesday. She has her own bedding, all the photo's we could grab in such a short space of time, ornaments & nick knacks. She is in a double room, gets dressed every day, with help. Does light sitting excercises & walks to the day room & the loo! Although she is totally confused & cries she wants to go home, she is reassured by sis & I telling her she has to get better first. We have said she is in a Rehabilitation Hospital NOT a Home as she would spit chips. We constantly reassure her that we will visit every day & although the first night we left her there was an absolute nightmare, 2 days on she seems a TINY bit happier with it. She is cared for by Macmillan nurses who are lovely, all the staff & residents are happy, the place is just buzzing with lots of 'good vibes'. I know in my heart that we have done the right thing and although mum will probably never settle we know that she trusts sis & I totally & we can reassure her constantly.

We know we only have a few more weeks left with mum, but she looks so much better than she did in hospital. She is looked after 24/7 by the best nurses, kind, considerate, compassionate. She is still not eating (4 weeks now) but is drinking more, not enough but still........ Sis & I see her every day & grandchildren & cousins visit as often as possible. I'm reassured too by staff that she does smile when the music is played & some of the residents dance & sing.
I don't want to loose my mum, I've dreded this since I was knee high to a grasshopper but I know we have done the very best for her, I pray that she will fall asleep peacefully holding my hand.
Lyn

 

[Sandy]

Hi Lyn,

Your message was so bittersweet. You and your family have been through such a terrible rollercoaster ride, especially this last few weeks.

At least you have come through the medical/social work maze and found a supportive setting where you know that your mother will be well cared for by trained staff. A really good EMI home with nursing is so much better than a general hospital ward.

She is cared for by Macmillan nurses who are lovely, all the staff & residents are happy, the place is just buzzing with lots of 'good vibes'.

That is really a positive bit of news. Now you and your family can give her all the love and support and treats that you can think of to make her remaining time as special as possible.

The consultant was right, you and your sister are wonderful daughters and you have done all that you can to support your mother.

Take care,

Sandy

 

[daughter]

Hi Lyn,

I also dread when the time comes and I lose my Dad, but I am inspired by you and your family's dedication and fortitude. As an indication of my admiration, I can only hope that when my Dad's time comes that it will be under similar circumstances.

All the very best,

 

[TED]

Thanks for your very open and eye opening post on the sort of questions and scenarios one will encounter towards the bitter end, I am so struggling with the situation at the moment with mum let alone preparing myself for her final weeks whenever they may be. No idea what this will do to my Dad either, but if it means getting upset now thinking about it then maybe it will help to cope later.

Hope everyone here having as good a weekend as you dare,
look after yourselves
TED xx

 

[blue sea]

Hi Lyn
just to say 'well done' for getting through such a difficult time. You have found your mum the best possible care at the end of her life and that must help you cope with the inevitable sadness that you will also feel. She would be proud of you if she could understand the stressful decisions you have had to take, as each of these has been for her benefit and done out of love for her.

Blue sea

 

[connie]

My love to all of you who are coping through this situation.

Thank you so much for sharing the time with us. Can't imagine how I will cope when this scenario arrives, but all of you have imparted so much wisdon, good advice and compassion, I feel at least prepared.

God bless, Connie

 

[Sheila]

Dear Lyn, just wanted to say my thoughts are with you at this difficult time. I am so glad that both your Mum and the rest of you as a family have found such a lovely home. This will give you all much comfort I am sure. You have done your very best, now just give her all the love in the world. Love and a hug, She. XX