ellie 123 said:
Couldn't agree more, Ellie. I'm sure with a proper care package you and your mum will feel so much better.
What a lovely daughter you are.
Love,
is this a proper diagnosis
- Thread starter pebbles
- Start date
Couldn't agree more, Ellie. I'm sure with a proper care package you and your mum will feel so much better.
What a lovely daughter you are.
Love,
Can anyone shed a little light
Firstly, thank you all for your kind thoughts - it's comforting.
Today is not a good day and I feel I've had enough battles. Ever since mum started to get ill, it seems everything has been a battle. A battle to get a diagnosis, a battle to get treatment, etc., and now a battle to get help at home. It seems there isn't any. Basically if I bring her home I'm on my own.
Can anyone tell me, in simple English, the first steps to fighting for continuing care. I just can't take in pages of goobledegook at the moment and so far no organisation has been able to help me. Should I involve a solicitor? Bearing in mind that there's not much time. Don't get me wrong - mum can afford to pay - but why should she after everything that's happened. Would this be the case if it were cancer?
This is an emotional time and I want it to be quiet and calm for both of us. Am I being unreasonable?
ellie xx
Firstly, thank you all for your kind thoughts - it's comforting.
Today is not a good day and I feel I've had enough battles. Ever since mum started to get ill, it seems everything has been a battle. A battle to get a diagnosis, a battle to get treatment, etc., and now a battle to get help at home. It seems there isn't any. Basically if I bring her home I'm on my own.
Can anyone tell me, in simple English, the first steps to fighting for continuing care. I just can't take in pages of goobledegook at the moment and so far no organisation has been able to help me. Should I involve a solicitor? Bearing in mind that there's not much time. Don't get me wrong - mum can afford to pay - but why should she after everything that's happened. Would this be the case if it were cancer?
This is an emotional time and I want it to be quiet and calm for both of us. Am I being unreasonable?
ellie xx
According to the ageconcern leaflet:
If you're in hospital the person to contact about NHS continuing care is the "person responsible for your discharge". If you have "difficulty identidying the right person, each PCT has a cintinuing care co-ordinator or manager with responsibility fro continuing NHS health care". To get their number if the hospital switchboard can't help call PALS.
Have you been refused (formally) continuing care or are they "just" making it difficult?
Jennifer
If you're in hospital the person to contact about NHS continuing care is the "person responsible for your discharge". If you have "difficulty identidying the right person, each PCT has a cintinuing care co-ordinator or manager with responsibility fro continuing NHS health care". To get their number if the hospital switchboard can't help call PALS.
Have you been refused (formally) continuing care or are they "just" making it difficult?
Jennifer
Ellie, I'm sorry you're finding it so difficult to get help. I don't think you're being unreasonable at all.
I don't know about continuing care, it appears to be quite difficult to get it, though others will know more.
I think it may be difficult for you to get SS-funded support because you would be bringing your mum in from another authority. (Is that right?)
Jane recently brought her mum home to die, but it was within the authority, and she had a lot of help.
http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=6330
I can understand you wanting your mum home, and to care for her in peace, away from all the hassles you've had. But are you sure you can handle it?
I do hope you manage to sort something out. How is your mum now?
Love,
I don't know about continuing care, it appears to be quite difficult to get it, though others will know more.
I think it may be difficult for you to get SS-funded support because you would be bringing your mum in from another authority. (Is that right?)
Jane recently brought her mum home to die, but it was within the authority, and she had a lot of help.
http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=6330
I can understand you wanting your mum home, and to care for her in peace, away from all the hassles you've had. But are you sure you can handle it?
I do hope you manage to sort something out. How is your mum now?
Love,
Last edited:
Dear Ellie, how I wish I could clear up this muddle for you. I`ve no experience in this area, so can only pass an opinion.
My opinion, for what it`s worth, is I think things could have been made less complex for you, under the circumstances, and you could have been shown more compassion.
It looks as if you will be denied the support you request because you are going against medical advice, in wanting to take your mother home.
Do you think you could get aome help if you sign a disclaimer, saying you take full responsibility for instigating your mother`s discharge.
I do hope you get some help.
Love xx
My opinion, for what it`s worth, is I think things could have been made less complex for you, under the circumstances, and you could have been shown more compassion.
It looks as if you will be denied the support you request because you are going against medical advice, in wanting to take your mother home.
Do you think you could get aome help if you sign a disclaimer, saying you take full responsibility for instigating your mother`s discharge.
I do hope you get some help.
Love xx
Good question.
First thing to note is that NHS Continuing Care funding does exist and some people have it. Next thing is to realise that it may depend on where you are whether or not you can get it.
Third thing is not to write off the possibility beforehand. If you don't try, you are unlikely to get it. The problem, as your question shows, is to know just how to try to get it.
I can only speak from our experience.
We simply would not have had the opportunity - or even known there was such funding - had there not been a fantastic lady at the local Alzheimer's Society branch. She came with me to the hospital, explained what the funding was to the consultant [who had no idea], and then ran through the list of criteria - a list where Jan met most items, when only one or two was sufficient.
The consultant agreed that Jan met the criteria, and some time later the funding was agreed.
Now that was back in 2001, and things may have changed since then in interpretation, but for us, getting the funding was not a huge hassle.
Which was just as well since I was in such a bad position at the time, having already cared for her for 10 years and seeing Jan so badly affected both by her dementia, and by a fall sustained while she was in the assessment ward [after which she never really was able to walk unaided again].
On the grounds that all information may be useful - I just came upon the following huge document:
House of Commons
Health Committee
NHS Continuing Care
Sixth Report of Session 2004–05
http://www.publications.parliament.uk/pa/cm200405/cmselect/cmhealth/399/399i.pdf which gives a lot of background.
Some more references are in http://www.consultuscare.com/pages/care_services_nhs_funding.asp
and check out "Eligibility Criteria for Older People with Mental Health Problems" page 16 in http://www.southwarkpct.nhs.uk/document_view.php?PID=0000000001&DID=00000000000000001495
There are loads more references if you Google "applying for nhs continuing care funding"
All of which may not actually help, but may provide a small amount of illumination....
Hi I am a new member to this site and to forums in general. I would like to be able to communicate with carers/relatives/friends of people with dementia.
My mum has been diagnosed with Vascular Dementia around the same time that my step dad had a diagnosis of Terminal Lung Cancer. Their lives and min has been turned upside down and will never be the same.
My mums condition is very difficult to come to terms with and would welcome any insight into how others coped when they first found out and what coping strategies may be out there to help!
The situation as been going on since Apr 2007 and at this present time I am on the verge of a breakdown so any suggestions would be greatly appreciated
My mum has been diagnosed with Vascular Dementia around the same time that my step dad had a diagnosis of Terminal Lung Cancer. Their lives and min has been turned upside down and will never be the same.
My mums condition is very difficult to come to terms with and would welcome any insight into how others coped when they first found out and what coping strategies may be out there to help!
The situation as been going on since Apr 2007 and at this present time I am on the verge of a breakdown so any suggestions would be greatly appreciated
Thanks Jennifer - I'll get onto that straight away. I've found it so confusing knowing who to speak to for each individual problem.
Continuing care has been 'avoided' I think is the best explanation. And obviously if SS is in contact with me, then they have not gone down the CC avenue.
Mum is going to her home - she's far too ill now to bring down south, so she will be in the same health authority. Mum is unconcious most of the time but consultant said it's not unheard of for patients to rally once medication is stopped as too many different medications can be just as bad on the body! If she does this, they will re-instate all treatments.
Am I going against medical advice - I'm worried now. I was under the impression the hospital were not going to discharge her unless they could, i.e. with the c-diff, etc., and that once mum had the all clear from the hospital point of view, I would just be taking her home - as opposed to demanding she be discharged. If you see what I mean. I definitely don't want to go against them otherwise there will be no empathy from their side at all.
Will try and slow my brain to trawl through all the good links you've all provided! Thank you.
Have just spent ages on the telephone to a lovely lady who couldn't really help me at all except to advise me to get my order in now for incontinence pads as there was a 3 week wait when she needed them for her mum!
ellie x
Continuing care has been 'avoided' I think is the best explanation. And obviously if SS is in contact with me, then they have not gone down the CC avenue.
Mum is going to her home - she's far too ill now to bring down south, so she will be in the same health authority. Mum is unconcious most of the time but consultant said it's not unheard of for patients to rally once medication is stopped as too many different medications can be just as bad on the body! If she does this, they will re-instate all treatments.
Am I going against medical advice - I'm worried now. I was under the impression the hospital were not going to discharge her unless they could, i.e. with the c-diff, etc., and that once mum had the all clear from the hospital point of view, I would just be taking her home - as opposed to demanding she be discharged. If you see what I mean. I definitely don't want to go against them otherwise there will be no empathy from their side at all.
Will try and slow my brain to trawl through all the good links you've all provided! Thank you.
Have just spent ages on the telephone to a lovely lady who couldn't really help me at all except to advise me to get my order in now for incontinence pads as there was a 3 week wait when she needed them for her mum!
ellie x
Dear Hazel
Thank you so much for Jane's link. I found it comforting and gave me hope for what I'm about to embark on . It's exactly how I picture mum's end. She too misses our dog - I used to take him into hospital but since the c-diff that hasn't been possible and she constantly asks about him. The postings have given me courage, once again thanks.
ellie x
Thank you so much for Jane's link. I found it comforting and gave me hope for what I'm about to embark on . It's exactly how I picture mum's end. She too misses our dog - I used to take him into hospital but since the c-diff that hasn't been possible and she constantly asks about him. The postings have given me courage, once again thanks.
ellie x
Dear Pablo
I am not in a place to be able to support you at the moment but would just like to say - Iknow exactly what you mean, unfortunately there are quite a lot of us in the same situ.
There are many kind, generous people on this site who will help you.
ellie
I am not in a place to be able to support you at the moment but would just like to say - Iknow exactly what you mean, unfortunately there are quite a lot of us in the same situ.
There are many kind, generous people on this site who will help you.
ellie
Dear Pablo,
It is very difficult to recover from the shock of such devastating diagnoses, and I`m really sorry you are finding it so hard to cope.
It really is early days and you may still be in shock.
Once the bad news has hit home, I`m sure your main aim will be to support your mother and step father as much as possible.
You will, in turn, receive a lot of support from TP, from people who are all going through, or have been through, just what you are facing now.
Take care
It is very difficult to recover from the shock of such devastating diagnoses, and I`m really sorry you are finding it so hard to cope.
It really is early days and you may still be in shock.
Once the bad news has hit home, I`m sure your main aim will be to support your mother and step father as much as possible.
You will, in turn, receive a lot of support from TP, from people who are all going through, or have been through, just what you are facing now.
Take care
ellie 123 said:
Sorry Ellie, I misunderstood. I thought it was your home you meant. Stupid of me!
In that case, I can't see any reason why you shouldn't get the same support as Jane got.
I'm sure you're right. If you wait until the hospital is ready to discharge her, you wouldn't be going against medical opinion.
You're sounding a bit more positive now, stay strong. You're such a brave lady.
Love,
Ellie, don't forget that every day they keep her in, it's costing them around £450, so while I understand you want to keep them on your side, there will be at least one element trying to get her out. Also, don't forget, palliative care will be provided by an entirely different group. In fact, by being a small thorn in their side, you might actually encourage them to find a way to make it work for you both. They have, it seems, already indicated that your mother is terminal: the government's position is that should people wish to die in their own homes, every effort should be made to accomodate them.
Jennifer
Jennifer
Hi everyone - just an update.
Unbelieveably mum survived having meds, food and water removed and is now back on everything. She is currently on 10 min obs - which is a great improvement but the day after my returning home, I get a call saying she has had yet another fall and now has a cut above her eye to add to all her other injuries.
Mum is totally confused now - she does recognise me still but isn't really in the same world.
So current situ is I'm waiting on the powers that be to decide on a care package which will be interesting as now it doesn't appear to be palliative care anymore. But as no=one has approached me to discuss the change in the nature of her care, I have decided to sit back and await the call. I've got a sneaky feeling I'm just going to be left to get on with it. But whereas I could cope with being at mum's if the end was close, if it's going to be long term care then I have to bring her to my home and God knows what problems that will cause.
I'm feeling lost again - no one knows anything. One minute mum is dying, then she isn't. No one gets in contact, the nurses on mum's ward just say - don't worry you'll know what to do when you get her home = but I just feel like I'm bringing my first baby home from the hospital. I'm trying to make a list of all the things I'll need but don't necessarily know what sort of things to get and do. All the professionals treat me as if I know what's going on and already know what the next step is and even when I try to clarify things I just get so much info that I walk away more confused!!
Well, that's me let off steam for now. Thanks everyone,
ellie
Unbelieveably mum survived having meds, food and water removed and is now back on everything. She is currently on 10 min obs - which is a great improvement but the day after my returning home, I get a call saying she has had yet another fall and now has a cut above her eye to add to all her other injuries.
Mum is totally confused now - she does recognise me still but isn't really in the same world.
So current situ is I'm waiting on the powers that be to decide on a care package which will be interesting as now it doesn't appear to be palliative care anymore. But as no=one has approached me to discuss the change in the nature of her care, I have decided to sit back and await the call. I've got a sneaky feeling I'm just going to be left to get on with it. But whereas I could cope with being at mum's if the end was close, if it's going to be long term care then I have to bring her to my home and God knows what problems that will cause.
I'm feeling lost again - no one knows anything. One minute mum is dying, then she isn't. No one gets in contact, the nurses on mum's ward just say - don't worry you'll know what to do when you get her home = but I just feel like I'm bringing my first baby home from the hospital. I'm trying to make a list of all the things I'll need but don't necessarily know what sort of things to get and do. All the professionals treat me as if I know what's going on and already know what the next step is and even when I try to clarify things I just get so much info that I walk away more confused!!
Well, that's me let off steam for now. Thanks everyone,
ellie
If you don't mind be saying .
No you won't !
If I was you I would tell them that your not taking your mother back to her home till you they have sorted care package for your mother , before she gets home ( even if you don't mean it )
Can't believe they can just treat your mother & you like that . don't let them intimidate you .
Do you have a social worker that can sort it all out care package for your mother while your mother still in hospital ?
No you won't !
If I was you I would tell them that your not taking your mother back to her home till you they have sorted care package for your mother , before she gets home ( even if you don't mean it )
Can't believe they can just treat your mother & you like that . don't let them intimidate you .
Do you have a social worker that can sort it all out care package for your mother while your mother still in hospital ?
Last edited:
Dear Ellie,
Have you been given a date for your mother to be sent home?
It seems they will have to keep her in hospital for longer, whilst she needs 10 minute obs, and has had yet another fall. Maybe this is the reason no-one has yet offered a care package.
Have you been given a date for your mother to be sent home?
It seems they will have to keep her in hospital for longer, whilst she needs 10 minute obs, and has had yet another fall. Maybe this is the reason no-one has yet offered a care package.
ellie 123 said:
Dear Ellie
No wonder you're confused!
I'm sure you're relieved that your mum has come through her recent problems, but it does leave you rather up in the air.
You were all set to care for your mum in her own home, with the help of palliative care, but now that she is no longer regarded as terminal, that care has been withdrawn.
I don't know where this leaves you. It would be hard enough if she lived locally to you, but it's going to be impossible for you to look after her properly and keep your job going.
I would think the best solution would be a care home, preferably one in your area. I don't see how you are going to cope otherwise. Is this a possibility?
It's very poor that they couldn't discuss a care package with you while you were there.
Keep in touch, and let us know how you get on.
Love,
To Dear Ellie
I am relatively new to this site, and tonight I thought I would just have a quick browse through a few success stories and bits of advice to help me with my mum (a problem but similar to lots of others), and I landed on Ellie's thread. I have just read, totally gob-smacked, of the experience of Ellie with the greatest sadness that I have ever felt in my life.
Ellie, I don't know what to say. I am lost for words. You must be the bravest, pluckiest, most caring person in the entire world to have put up with all the **** I have just read. You will be on the first cloud to heaven when it comes your turn, and so will your mum.
Now I am a person who likes justice done, but I would say to you forget the past and the faults that have occurred, and concentrate now on the future for your mum. Get the care package in place (if I have missed something forgive me, cos I have read your story with my mouth wide open in disbelief), but you now need proper support and if you aren't getting it I agree with all the people on the thread who mention MP, News of the World, Alzheimer's Society and anyone else you can think of cos your situation is really, really bad. What is your mum's GP doing about this? Phone him daily. Get proper care as best you can. Shout, scream and be rude if necessary. Contact the new Prime Minister if necessary, certainly the Health Minister, you can get them all via email from the website of the government, not sure what it is but Google will tell you. Also contact your local health authority and tell them you are contacting your MP, that sometimes scares them.
I hope you succeed, but if you don't you have surely been one plucky lady and I am admiring of what you have done so far, and you must be worn out with it all.
Much love to you, I know this is not a lot of use but the love is there all the same. Let us know how you are going on, day by day or hour by hour if need be. We are all on your side.
Love. Love, Love
Margaret
I am relatively new to this site, and tonight I thought I would just have a quick browse through a few success stories and bits of advice to help me with my mum (a problem but similar to lots of others), and I landed on Ellie's thread. I have just read, totally gob-smacked, of the experience of Ellie with the greatest sadness that I have ever felt in my life.
Ellie, I don't know what to say. I am lost for words. You must be the bravest, pluckiest, most caring person in the entire world to have put up with all the **** I have just read. You will be on the first cloud to heaven when it comes your turn, and so will your mum.
Now I am a person who likes justice done, but I would say to you forget the past and the faults that have occurred, and concentrate now on the future for your mum. Get the care package in place (if I have missed something forgive me, cos I have read your story with my mouth wide open in disbelief), but you now need proper support and if you aren't getting it I agree with all the people on the thread who mention MP, News of the World, Alzheimer's Society and anyone else you can think of cos your situation is really, really bad. What is your mum's GP doing about this? Phone him daily. Get proper care as best you can. Shout, scream and be rude if necessary. Contact the new Prime Minister if necessary, certainly the Health Minister, you can get them all via email from the website of the government, not sure what it is but Google will tell you. Also contact your local health authority and tell them you are contacting your MP, that sometimes scares them.
I hope you succeed, but if you don't you have surely been one plucky lady and I am admiring of what you have done so far, and you must be worn out with it all.
Much love to you, I know this is not a lot of use but the love is there all the same. Let us know how you are going on, day by day or hour by hour if need be. We are all on your side.
Love. Love, Love
Margaret
Hi all
Just been reading all your lovely messages of support. Bless you Margaret, you make me sound angelic (if only) but I'm not and really only doing what loads of others are.
Have to admit have found it difficult to post, came home for a week to rest and as soon as I do, it's time to go back again (which I'm doing tomorrow) and the whole thing starts again.
Had a call from the hospital a few days ago and mum is finally free of c-diff and out of isloation. However she still has urine infection and so could get c-diff back at any time. She has had another fall and has cut herself rather badly - but you know I've become indifferent to it - it all seems so futile. I spoke to her today because she believed I was dead and her home had been sold.
No-one has been in contact re care packages but hopefully whilst I'm there this week it will all be sorted. From my point of view mum is going to have to come home to my home and I just want to get on with things, get her here and settle into some kind of routine. I appear to becoming emotionally detached because of everything that has happened and it scares me.
I'm having even more problems than usual with expressing myself, so I'm going to go - my thoughts and prayers are with you all and I'll give you an update when I get back.
love ellie x
Just been reading all your lovely messages of support. Bless you Margaret, you make me sound angelic (if only) but I'm not and really only doing what loads of others are.
Have to admit have found it difficult to post, came home for a week to rest and as soon as I do, it's time to go back again (which I'm doing tomorrow) and the whole thing starts again.
Had a call from the hospital a few days ago and mum is finally free of c-diff and out of isloation. However she still has urine infection and so could get c-diff back at any time. She has had another fall and has cut herself rather badly - but you know I've become indifferent to it - it all seems so futile. I spoke to her today because she believed I was dead and her home had been sold.
No-one has been in contact re care packages but hopefully whilst I'm there this week it will all be sorted. From my point of view mum is going to have to come home to my home and I just want to get on with things, get her here and settle into some kind of routine. I appear to becoming emotionally detached because of everything that has happened and it scares me.
I'm having even more problems than usual with expressing myself, so I'm going to go - my thoughts and prayers are with you all and I'll give you an update when I get back.
love ellie x
Ellie, just to wish you well for your visit. I hope you manage to get the care package set up this weekend.
Don't worry about feeling detached -- it's the body's coping mechanism -- and a good one, I think. We can only suffer so intensely for so long. This gives you a breathing space, and a chance to sort out the practicalities without getting too upset.
Hope to hear from you soon.
Love,
Don't worry about feeling detached -- it's the body's coping mechanism -- and a good one, I think. We can only suffer so intensely for so long. This gives you a breathing space, and a chance to sort out the practicalities without getting too upset.
Hope to hear from you soon.
Love,
