My mum is now entering the final stages of Alzhiemers/Vascular Dementia at aged 92 years. Having said this no one fully knows how long this stage will last?. She is still at home with us but, after nearly 7 years looking after her we are exhausted both mentally and physically. We have had a recent visit from the district nurse team who have told us she has past the first stages of the assessment as she can no longer weight bare and needs feeding by us for the most part. However, we know that this is very very difficult to get interns of homecare so would now be looking into residential if we were Lucky enough to qualify. Anyone else out there in similar circumstances have any experience of this and advice please!
CHA for mum: My mum is now entering the final... - Care Community
CHA for mum
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Lorrainemally
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Sorry that was for Continuous Health Care....
Does mum own her own home or have savings above £23,250? If not, and she requires residential care the local authority will pay for this.
The health authority pays for care when there is a primary medical need. You can ask your district nurse to instigate a Continuing Health Care funding assessment. The first step is a check list and if she qualifies, this would be followed by a more in-depth assessment called the Decision Support Tool (DST). This can be fast tracked if the patient is terminally ill and not expected to live for very long.
Ahead of you there, as I stated in my first post we have already past the first stage so will be waiting now for the more I depth assessment. As she is non load baring and is in decline that is WHY she fitted the initial criteria. I have a remnants in common with my mum and she is just in the cusp savings wise.... I have lived here with her for 16 years and 10 prior to formal diagnosis which is why, before now I have not taken this further... As you can appreciate at 55 this leaves me in a very vulnerable situation . It is disgraceful how this country treats Carers that are family, giving them no rights at all unless they are the spouse....
Totally agree and this has to change. I wish you well. Xxx
Lorrainemally - passing the checklist is no guarantee of acquiring CHC funding so please do not rely on it. It is just a brief assessment to determine if there are sufficient needs to refer for the DST. Many people score high enough on the checklist to warrant this but do not receive full funding.
As you know, the nurse has completed the checklist and forwarded it on to the CHC team so you now have to wait for the DST assessment. This is completed by a nurse and social worker. It is much more detailed than the checklist.
As I mentioned earlier, they are looking for primary health needs. Complicated medication regimes, unpredictability leading to sudden deterioration and severe breathing problems are some examples. These would indicate that care needs to be provided with the oversight of a qualified nurse.
As an example, my caree has many drugs to take, oral and nebulized. Before I administer his heart drugs I have to check his blood pressure and pulse. If the pulse is below a certain level I cannot give him one of these drugs as it would be dangerous. In a care setting this type of care has to be delivered by a qualified nurse.
Being bed fast and requiring feeding can be dealt with by suitably qualified carers. Many very dependent people who live in their own homes are supported entirely by carers, not nurses. Sometimes carers in dual registered homes are trained to a higher level and are carrying out tasks that were formerly the province of trained nurses so this can muddy the water so to speak.
In some instances the patient being immobile can be to the CHC team’s advantage because it can reduce the score for falls risk. As an example, my caree can walk but is very limited due to vascular Parkinsonism. This same illness has affected his balance very badly and he has a very high falls risk. Care homes have a protocol for falls and this would require the skills of a registered nurse to assess severity and might involve twenty four hour close observation. This would merit a higher score for the relevant domain than someone who is immobile.
In some areas (probably most) the bar for CHC funding is high. You need to think carefully about what aspect of your mother’s care requires a qualified nurse and make your case. For instance, is her medication problematic and needs to be monitored? Does she have heart or respiratory problems? Is her health unpredictable? Does she have pressure sores? These are just some of the issues they will be asking about.
Although your mother is in the final stages of her illness, nobody can say how long this will last so she might not be eligible for fast track funding.
Read up as much as you can about funding and think about the requirements in relation to your mother’s situation. You can find the DST forms online. Make a list of reasons why you believe she needs nursing care. In the meantime have you enquired about respite care? You might have to pay for it but at least it would give you a break.
I found the DST assessment stressful - it took about two and a half hours. It went to a second panel (they often do) and took three months for a decision to be reached. They gave him joint funding because he has multiple serious health problems, a complex medication regime and is at risk of rapid deterioration and death if not monitored by an appropriately qualified person. He has since deteriorated and we are now waiting for another DST to ascertain if he qualifies for full funding.
I agree about the treatment of carers. Your situation seems to be not uncommon - I have read many similar posts on other carer forums. In the present climate it is usually not a good idea for adult children to return home to their parents, giving up their independence in the process. Hopefully your mother will qualify for the funding. You can appeal if she isn’t eligible.
Please can you update your thread when you have had the DST assessment? Your experience would be very useful to other members who are facing this.
I came back home because my husband left us and we were only in rented accommodation at the time and my daughter was 2 weeks okd, he was a tyrant but that's another story so we were rendered homeless at that time and mum was fine back then but in her own due to my dad dying of cancer in 2000, so it suited us both at the time. So not straight forward as me just deciding to move back in to look after my mum who didn't need looking after then. I agree as my best friend was a senior palutive Care nurse and also looked after her mother with dementia until her death at home and had CHC awared 8 weeks before she died in their own home nearly 3 years ago. I understand how difficult it is to get this as shed told me but at some point it is always worth a try and after not being awarded it you can also reapply after 3 moths again if you feel the person has deteriorated further at that point. It's called never giving up in afraid as Carers we all need some hope however smalk
That’s totally understandable Lorrainemally. At the time you weren’t to know how things would turn out. Judging by the number of forum posts that I have read, it seems a fairly common scenario and people don’t realise that it has ramifications for their future housing/inheritance further down the line. This includes council and other rented accommodation.
A CHC funding application is definitely worth trying for - you have nothing to lose and all to gain. You need to be prepared though. On the few details you have given, it appears that it could be difficult to get but I hope that I am wrong.
I had a tough time getting joint funding despite the fact that he has multiple, serious health conditions: asthma/bronchiectasis, immune deficiency (frequent respiratory infections), atrial fibrillation, moderate/severe mitral valve disease, Vascular Parkinsonism, dementia and a few other things. The result is complex, demanding and unpredictable care needs. That is why I applied for funding in the first place. I knew that his needs could not be met by carers in a residential setting but even with this the panel couldn’t agree. They requested more information and it went to a second panel who agreed that he had some nursing needs and granted joint, but not full funding. This has allowed me to access respite care though.
He has deteriorated since the initial DST and his care needs have escalated. When he was discharged from hospital after a prolonged stay for bilateral pneumonia, even the nurses on the ward did not think that he was manageable at home. He has had many hospital admissions this year and yet I am still not hopeful for full funding when the reassessment is completed.
In the meantime, have you had a social services carer and needs assessment? I am wondering if you could get some respite care for mum. Are you getting all relevant benefits? There is help out there (including the various charities) but it’s a case of finding it. If you need detailed advice you could try emailing CarersUK. They will respond but it might not be for a few days as they are so busy.
Thanks ever so much for you replies im always grateful for any input, I think like most people in this situation we all feel we are alone so it's nice to touch base with others in similar situations. I think it just gets me down the further i get into it, it's been a long time with no breaks. My daughter is 16 just and most of her life's been wrapped up in this. Mum has angina and had a bit pass about 25 years ago and also survived bowel cancer just after. She had a lungectomy just after the King had his as she's now 92 years old, so had her fair share of traumas as well as surviving the War. It's very hard as she rarely knows me now and I'm an only child adopted . I feel I lost mum 7 years ago so I wish everyone's at peace now.
I know exactly what you mean about it getting you down the further you get into it and I feel for you.
I can’t leave him on his own so am a virtual prisoner in my own home. I now have a sitter for two hours per week but that will end after 30 hours are used up. Can’t even walk the dogs until the carers come to sit with him. Respite care has been lovely (I have only recently obtained it) and I am looking forward to four days next month. He doesn’t like going but understands that I need to rest.
I am older than you but I have to say that I am sure that caring has taken its toll on my health - I feel worn out. I do hope that this doesn’t happen to you and you can have some help with caring for your mum.
Hi Lorrainemally,
Sadly I can’t help you with any practical advice, so this is just a note of encouragement and solidarity.
I’m absolutely with you on the disgrace that ‘Care’ has become in UK. It’s a very easy target for government cuts and neglect, because the voice of the carer is very small.
Bella395 has given her usual excellent advice. She’s an absolute guru in this sort of problem, having personal experience and there’s nothing I could add to that.
All I’d offer is to suggest not to end up fighting with yourself over this.
By that I mean that the fight ahead to get funding for your mum is tough enough. Stressing yourself over the general injustice of it all will only tire and stress you more.
Yes, change is desperately needed, but no matter at what speed it comes, (or lack thereof), it’s probably going to come too late to help you or your mum.
Try to focus your energy on just achieving the best outcome you can get, and let go of your justifiable stress, anger and frustration over the bigger picture.
Very best wishes and I hope you succeed for both your mum’s sake and your own.
Bella395 in reply to
Having been through this myself I totally agree with you Callendersgal. The situation is at is and there is little we can do about it. Caring is hard enough without this. Extra stress needs to be avoided wherever possible.
A couple of weeks ago I telephoned the CHC team for a reassessment and was given an appointment for yesterday. They didn’t turn up so I telephoned and was told that it wasn’t on their schedule. Unfortunately I didn’t take the name of the person who gave me the appointment.
The person to whom I spoke yesterday wasn’t exactly helpful and tbh I didn’t like her attitude but I have to let that go - maybe she was having a bad day, especially as it was Monday. However, she did tell me that they have agreed to an increase in respite care that I had requested via the social worker. I hadn’t been informed of this. I have to pay towards respite care, including a top up because the care home fees are above the local authority rates.
If this hasn’t already been done, it might be helpful for Lorrainemally to talk to the social worker about the housing situation. I don’t know for sure but if CHC funding is not forthcoming and residential care is needed the local authority might just put a charge on the property. This would allow her to remain in the home and the debt repaid if or when it comes to be sold. Alternatively it might be useful to consult a solicitor who is versed in this area of law.
in reply to Bella395
Hi Bella395,
So sorry you are having to have another round of stress yourself with this, and it's very gracious of you to make excuses for the person on the end of the phone who was 'difficult'. Frankly I don't care what sort of day anyone's having, it should be possible not to make it about 'you' when it is your job to help people in a professional manner. It's a shame that so many people take things personally when they are supposed to be offering help.
We see all sorts of situations put under the spotlight on TV, with series on 'Bouncers', emergency responders, A&E, and even neglect in Care Homes, but I've never seen a series on how difficult it is for a carer to cope at home day to day. Hmm... I wonder why? But when I rule the world there will be one, and everyone who works in the field of Care generally will be made to sit and watch it as a part of their much more stringent training!
But thanks for all the help that you give on this forum. Without knowledgeable people like you, it would be 100% more difficult to find your way round a very complex and obstructive process.
Bella395 in reply to
I wholeheartedly agree. My impression is that people don’t think about the stresses of caring for someone 24/7 until they become a carer themselves. In my experience there are some health professionals who don’t give a second thought to us carers.
in reply to Bella395
That's really true, Bella395. Old age and infirmity apparently don't happen to lots of people.... until it does!
If it came to that mum will stay here as normal as I won't allow anyone to take the home away from us, which is why I haven't done anything before now. Solicitors are no use I've been in this journey for 7 years now and will manage if a no go as putting a charge in the property only means d loose it after mum past anyway to pay the remainder of her residential home costs. Obviously i don't work any longer and had to leave my job as a Teaching Assistant in order to look after mum , as we are self funding . Residential Care whether respite or permanent is us £1000 plus per week in most cases and my job pays peanuts, so it was a no brainer at the time. We will continue to battle on i guess!!!
That’s possibly the best course of action if you don’t get the CHC funding. However, it’s a hard road ahead - I hope that you get some help and that you are physically and mentally able to continue. It’s perhaps also worth considering finances afterwards because all allowances will stop when mum is no longer here. Can you go back to your job as a teaching assistant?
Yes I could do but to be honest I don't think I'd want to now, the jobs changed dramatically since I first trained and unfortunately a lot more responsibility for no real financial gain. If look nearer to home and take something local if it came up. I think after 7 years out of the work place and being 56 in January next year in not looking for a career now just something to help pay the bills.
Oh and I had a full knee replacement 2 years ago so wouldn't be able to run around with the kids as I used to in PE
Lorrainemally - in view of the fact that you have a disability and have lived with your mum for a long time perhaps she wouldn’t have to sell it to pay for care. Have a look at page 5 of this document:
independent-age-assets.s3.e...
Quote:
“Will my home be included?
The council can decide whether to take into account the value of your property, and how much of its value to include. What happens will depend on your circumstances.
The value of your home must not be taken into consideration if any of the following people lived there as their main or only home before your move to a care home, and continue to live there:
your spouse, civil partner or partner
a close relative who has a disability or is over 60. This is known as a mandatory property disregard.
The council can also choose to ignore the value of your property in other circumstances, as long as you are not deliberately avoiding paying care home fees. This is called a discretionary property disregard.”
Don’t forget that your mum shouldn’t be paying council tax due to dementia. If you haven’t applied for this, contact your local authority council tax department and they will send a form to fill in. They contact the doctor when you return it.
Thanks so much for that, I will hang on to this post as it may come in handy. I'm not sure they'd class my knee replacement as a disability but my now husband whose been with us now for 6 years is 61 but not sure if that fits the over 60s criteria? Keep in touch Bella
Your husband being 61 years of age and permanently resident in your mum’s home could count for the mandatory disregard of property. Also you have a child living with you. This now looks more hopeful.
If they agree to disregard the property and social services to pay for care they might look at the cheapest option to meet your mum’s needs. This could mean that she would be offered care at home by their own staff or a personal budget so you could employ your own carers. I am not saying that this will necessarily happen but in these days of strained budgets it is perhaps a possibility. You need to ask social services for a carer and needs assessment face to face, not over the telephone.
The other thing to consider is how you would feel about putting mum in a home when you have cared for her for so long. Frail confused people can react badly to being moved. I see this myself every time my caree goes into hospital. As soon as he goes through the doors his confusion worsens and he becomes agitated.
The nursing home that he now goes to for respite care is good but he still gets muddled when taken out of his home environment. The first care home that he went to was awful and although he only stayed for four nights he deteriorated rapidly so I had to bring him home.
Yes I know what you mean there as it's not something I ever wanted to do. I was told that a Care Home in our area that has a good rep was used by Social Services but we wouldn't be that lucky and, is be very wary of just putting her anywhere. My problem is managing her now mainly in My own manually and my daughter and husband have no life living as we do. I agree with everything you've said Bella but it's like juggling balls and seeing which one come back down. X
I recently asked about respite with adult services, and was told that it would cost around £150 a week as my dad is co-funding?
This is because your mum and dad are married. The rules change drastically if your married. If your the child OF the person with Dementia you have no rights to respite care or permanent help with Permanent Residential Care unless granted CHC. Otherwise you are self funding which brings prices up hugely into the thousand bracket per week.
Well that's a bit spooky cos mum been gon 40 years! I only asked the adult care services about this in May this year and that was the price quoted? I am his only carer and have had 1 break (4 days) in 4 years
I was referring to the fact that married couples don't get penalised the same way I as mum's carer does financially. I don't know your circumstances but if your aged 60 or over and have resided with your dad for a certain number of years you wouldn't loose your parents house as I would do if I wanted mum to go into a residential care home or repute care... It's a minefield out there in the Dementia world.......
Hi lorrainemally, my dad doesn't have a house, he lives with me so maybe that's y it's different? Not so much a minefield as a swamp! Every way u turn they try to get claws into these people who, without our support, would have no one to turn to. Best interest?? I think not unless it means institutional interest eh?
I feel for you in your predicament,its a tough one,and CHC is never guaranteed as I know so well,despite my partner being totally bedbound and not able to be weight bearing,plus Dementia ,and we were still turned down,its tough being a carer and I wish you well.
I would imagine we will be the same as you, but it's the last thing to try that we haven't explored yet but I've no real hope to be honest
It’s a tough decision to make. I am constantly conflicted myself. Like you, I have to do some manual handling even though he has carers. It’s causing problems with my spine (I have arthritis). All I long for is the opportunity to rest. When he is in respite care I just collapse and do nothing much.
These days I take all the help I can get because I know that I can’t do this on my own. I really hope that you and your family can get some help/respite too. All this caring is depriving you of a happy family life by the sound of it.
I would not be messed about myself even had heart attack to prove how stressful being carer can be especially with lack of information
This is first I heard of CHC funding WHY it only cover residential care Information I read says what ever help
Also you can have chc funding and personal budget I would of expected my dad’s social worker to have mentioned chc funding given my dad’s in receipt of palative care
england.nhs.uk/personal-hea...
I would go straight to CCG for straight answers advice AND if was obstructive would go to Quality Care Commission.
cambridgeshireandpeterborou...
I will ad those with dementia Alzheimer’s do get Ruth end of stick when it comes to funding persnol BUDGETs unless you fight tooth n nail
Should not be like that especially when effects own health
This is a very immotive subject im afraid. The Government don't want it publicised that CHC (Continuing Health Care) is out there as the cost would escalate out of control. Because Dementia is classed as a mental state of being and not a physical ailment where there are treatment methods etc no one knows how long a person will live, it's like saying how longs a piece of string?. But, nevertheless, the stress on families is emmence not to mention losing your home and all your finances. No help for the carers either. I've tried all avenues over 7 years, all organisations rtf and legal but all they do is metaphorically shrug their shoulders
in reply to Lorrainemally
The tried that on with DWP benicits and is up in air how terminal illness is defined.
These people operate in shadows of democracy WELL not anymore
The called All-Party Parliamentary Group for Terminal Illness (APPG).
So I surgest writing to them spelling out how inhuman outdated systems are ALSO is breach of human rights as can’t denig groups of people health benefits ALSO human rights law as nothing to do with brexit as it’s UN not EU
Can be assured I will be writing to them AS hide long enough.
Even tho DWP artical how things are defined is used by cross department’s unrelated to dwp.
Yet again discrimination against those with mental illness SEEMS all this country is about IS discrimination of most vaunrable
Am with you here! How can an illness (it must be an illness as it is classed as life-limiting) that prevents normal functioning on a physical level as well as a capacity level not be entitled to chc? Swallowing, mobility, balance etc. are physical as far as I'm aware? They have very cunningly crafted it that psychiatrists/psychologists present diagnosis, ergo it is classed as psychological not physical, yet the brain has to have a physical malfunction for symptoms to appear! Sorry, in rant mode!
Your not ranting your just being realistic and logical, I feel exactly the same way as you, it's infuriating
I don’t understand why they class ill people as needing ‘social care’ They require care because they have an illness so in my mind that is a primary health need. The whole system is a mess and none of the politicians will tackle it. Meanwhile, it is the most vulnerable people who are suffering. It is causing awful stress for us carers - as if we don’t have enough.
The health and social services can ill afford to be wasting all this money, time and effort on these CHC assessments. It’s time that a fairer system was put into place.
in reply to Bella395
Social services spend most of there budgets on kids in care and problem families THIS not much left for those who can’t shout complain OR not as young too do so
So Alzheimer’s Dementia suffers are left ignored
secrets22 in reply to
You are absolutely correct,and the most disgraceful thing is,Dementia IS a terminal illness,and as such be accorded the same help as others who are receiving help with a terminal illness.
Lorrainemally - there are some useful hints and tips about applying for CHC funding on the CarersUK.org website. Here is a forum thread that might be helpful:
carersuk.org/forum/support-...
As previously mentioned, do your homework first. Obtain a copy of the DST tool form and go through every domain yourself before the assessment. You need to put every small detail down about how you manage your mum to ensure her safety. People with dementia can get CHC funding so don’t be put off.
Thanks so much for all your help Bella x
Very similar to my experience my mum had altzheimers, couldn't weight bare we had to hoist her and also feed her. My sister and I took it in turns to live with her for a week at a time for about 3 years until it became simply too much even with carers 3 times a day. If she goes into a nursing home which is really what she needs she will get NHS funding CHC only really kicks in right at the end of life as it did with my mum who died on Tuesday. I would be very pleased to help u further so know you will have so many questions so I would be happy to speak to you personally should you wish to do so.
Lorrainemally in reply to
Hi there that would be really helpful thank you, if you can message me privately i can give you my details. It's a bloomin minefield trying to navigate through the system. As i explained in my posts previously, we live in my mum's house primarily and , I have been here 16 years now, which is 10 years before her formal diagnosis, I wanted to keep her here anyway for as long as I could but we have the added pressure of having nowhere to live if they took the house into consideration for funding Residential Care. I do have a Tenants In Common though with her but nothing's ever written in stone with the Coubciks etc... It's a huge weight to bare x
lell1 in reply to
sorry to hear about ur mum nowonly3
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