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I don't want to be a carer any more

TNJJ

Registered User
May 7, 2019
1,409
cornwall
@maryjoan, I am very sorry to hear this, but at the same time am most grateful to read this thread tonight, as my sister feels exactly as you do and is just starting what we all fear may be a protracted fight with Adult Services to convince them - even after needs assessment - that her OH needs 24/7 care but has no comprehension of how bad he is or the effect it is having on her emotional health especially. He is adamant that he wants to continue with care in his own home, of course, and the SW has decided his preference must be respected because - in her judgement - he has capacity. She has made similar comments to the ones @kindred got from their SW.

Although my sister's OH is a self-funder at the moment, we've confirmed that because he is so close to the 23k threshold, no private care home will take him on without prior financial agreement with the SS to take over funding. Meanwhile, because he self-funding, the SW has closed the case for now. We're in a bind.

I too wasn't aware of the possibility to arrange 4-week respite for the purposes of assessment (privately or otherwise). This could be a lifeline. From what TNJJ says, a shorter period might also be possible. Are private homes generally happy to undertake this for the purposes of assessment, though? Availability of beds for respite seems very low in my sister's area, so it may be Hobson's choice as to where this would take place.

From what I can gather, to get SS co-operation, everything hinges on mental capacity. Is that included in the respite assessment? And then after that, there's DoLS. Hoops, hurdles, traps and brick walls in every direction - anything to delay SS involvement and save money. I understand they are under enormous pressure too, but it's so depressing when it's as clear as day to everyone that residential care is genuinely in the best interests of the PWD and their carer at this point.
Dad is self funding and they will do a fortnight .They are assessing him but if he wants to stay longer that wouldn’t be a problem.14 days is the shortest they do.
 

Olliebeak

Registered User
Sep 13, 2014
132
Buckinghamshire
I was pondering this scenario. I divorced my ex husband because of unreasonable behaviour. His behaviour was due to a mental illness but everyone supported my decision recognising that neither I nor my children were safe with him.

If that mental illness was dementia/Alzheimer’s would people have recognised the need to keep me safe? Or are you sacrificial?
I totally agree. My first husband was an alcoholic - is addiction a mental illness? The jury is out but everyone helped and supported me and my children once I made the decision to leave. But Alzheimer’s attracts a different response.

Friends have hinted that maybe I’ve done enough but my OH is not that bad and really not ready for full time care. So 5 years from diagnosis his disease progresses very slowly and I remain trapped in this prison limbo. And riddled with guilt because I often wish it would end and I could have my life back.
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Dad is self funding and they will do a fortnight .They are assessing him but if he wants to stay longer that wouldn’t be a problem.14 days is the shortest they do.
Thanks. I'm going over there this week for a few days and on the day my BIL is at Day Centre my sister and are going to let our hair down by visiting a care home. I will add this to our list of questions for them.
 

kindred

Registered User
Apr 8, 2018
2,414
I totally agree. My first husband was an alcoholic - is addiction a mental illness? The jury is out but everyone helped and supported me and my children once I made the decision to leave. But Alzheimer’s attracts a different response.

Friends have hinted that maybe I’ve done enough but my OH is not that bad and really not ready for full time care. So 5 years from diagnosis his disease progresses very slowly and I remain trapped in this prison limbo. And riddled with guilt because I often wish it would end and I could have my life back.
Thank you. In my case, when one of the district nurses contacted the safeguarding officer to say I was unsafe in my home with OH, the safeguarding officer was very concerned until she asked what was the matter with OH. When I told her it was Alz there was a silence and she started to talk about the weather. I was sacrificial.
Kindred.x
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
Thats so sad to read x
Even though my person is my mum she says the same thing and it is so hard to hear and hurts doesn't it. If its your partner it must feel like your living with a stranger who doesn't appreciate you now and things are all one way. Its like the person you love is dissapearing and being swapped for someone else that is not like them.
Mum often says shes fine and doesnt need help and hasnt asked me to be here and look after her and also makes me out to be a liar and the bad guy at times. But then other times she does say shes sorry I have to be here and look after her and I shouldn't have to do it, so she at least occasionaly recognises what I do even though she is reluctant to let anyone else help instead of me and a lot of the time forgets.
Not that I feel like I can, but if I was to walk away from caring for mum I have a home to go to, but when its your partner it must be harder to walk away and logistically more complicated.
It doesn't seem fair that while there is someone there, be it a partner or relative, that SS cant step in and more help isn't available.
Sorry no practical help but sending love and sympathy xxx
actually the SS can they just choose not to because of funding. same with the NHS.

Getting needs assessments & who will pick up the bill is the first of many issues carers face- as if dementia isn’t enough.

don’t ever feel guilty - no one would choose this!

@maryjoan, I am very sorry to hear this, but at the same time am most grateful to read this thread tonight, as my sister feels exactly as you do and is just starting what we all fear may be a protracted fight with Adult Services to convince them - even after needs assessment - that her OH needs 24/7 care but has no comprehension of how bad he is or the effect it is having on her emotional health especially. He is adamant that he wants to continue with care in his own home, of course, and the SW has decided his preference must be respected because - in her judgement - he has capacity. She has made similar comments to the ones @kindred got from their SW.

Although my sister's OH is a self-funder at the moment, we've confirmed that because he is so close to the 23k threshold, no private care home will take him on without prior financial agreement with the SS to take over funding. Meanwhile, because he self-funding, the SW has closed the case for now. We're in a bind.

I too wasn't aware of the possibility to arrange 4-week respite for the purposes of assessment (privately or otherwise). This could be a lifeline. From what TNJJ says, a shorter period might also be possible. Are private homes generally happy to undertake this for the purposes of assessment, though? Availability of beds for respite seems very low in my sister's area, so it may be Hobson's choice as to where this would take place.

From what I can gather, to get SS co-operation, everything hinges on mental capacity. Is that included in the respite assessment? And then after that, there's DoLS. Hoops, hurdles, traps and brick walls in every direction - anything to delay SS involvement and save money. I understand they are under enormous pressure too, but it's so depressing when it's as clear as day to everyone that residential care is genuinely in the best interests of the PWD and their carer at this point.
so having to phone the council finance team to let them know that you are nearing the financial threshold is a must. Then another financial assessment usually over the phone in Mums case - OH is delegated to do this!

Then a needs assessment by the social worker & health care professionals to see who picks up the bill. Let’s hope it’s health care as your needs get better documented!

what happens then - I don’t know but after next week will have more personal experience of the convoluted systems
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Thank you. In my case, when one of the district nurses contacted the safeguarding officer to say I was unsafe in my home with OH, the safeguarding officer was very concerned until she asked what was the matter with OH. When I told her it was Alz there was a silence and she started to talk about the weather. I was sacrificial.
Kindred.x
This is outrageous!

@TNJJ & @DesperateofDevon - just to be clear regarding 2-4 weeks respite care for assessment, in my sister's case is the process that even though her husband is self-funder, she will nevertheless have to get LA's agreement for it (because of breakdown). She can't simply decide she wants an assessment by a home, go ahead with it and then inform the LA of findings?
 

Krug 22

Registered User
Dec 12, 2015
74
No words but I can so relate. I no longer want to care for my husband but the financial ramifications mean I have to as cannot afford to go down the home route. I would be interested what happens if anyone has refused to care - seems to me that it has to a full scale crisis before we get any help. Would getting legal advice help?
 

TNJJ

Registered User
May 7, 2019
1,409
cornwall
This is outrageous!

@TNJJ & @DesperateofDevon - just to be clear regarding 2-4 weeks respite care for assessment, in my sister's case is the process that even though her husband is self-funder, she will nevertheless have to get LA's agreement for it (because of breakdown). She can't simply decide she wants an assessment by a home, go ahead with it and then inform the LA of findings?
I got an L A assessment done as dad needed an update on his.But I didn’t have to have get LA agreement to have an assessment done in a home.
I had to get dads agreement to go into one as he has “capacity “.
You cannot support someone into a home against their will if they have “capacity “.
Your sister needs to get your BIL tested for “capacity “ by her GP.

Also she needs to get LPOA for Health and Welfare and Finacial.
When somebody doesn’t have “capacity “the Health and Welfare comes into play.You can decide where the person resides.

Dad needs 24hour care.Agreed by myself and GP but until dad loses “capacity “ there is nothing I can do.Luckily he agreed to respite. Does this explain it better?
Sometimes I think nearly every one with dementia has”capacity “ because that is all you hear from GP’s etc...
I also said to him that I was downing tools.The carers would do shopping ,medication etc..I meant it!
 
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Louise7

Registered User
Mar 25, 2016
2,045
I no longer want to care for my husband but the financial ramifications mean I have to as cannot afford to go down the home route.
Hopefully you are aware that care home costs would come out of your husband's income/savings, not your own? If he has less than approx. £24,500 savings then the local authority will conduct a financial assessment to work out how much they will contribute toward the care fees. If he has an occupational pension then only 50% would be included in the calculations - you can keep the other half, plus you may be entitled to other benefits.
 

marionq

Registered User
Apr 24, 2013
6,075
Scotland
There is no “entitlement”. It depends on your local authority. In mine you might get two weeks if they decide you need it. In others it could be 4 or 6.
 

Jenni_B

Registered User
Aug 24, 2019
104
France
I got an L A assessment done as dad needed an update on his.But I didn’t have to have get LA agreement to have an assessment done in a home.
I had to get dads agreement to go into one as he has “capacity “.
You cannot support someone into a home against their will if they have “capacity “.
Your sister needs to get your BIL tested for “capacity “ by her GP.

Also she needs to get LPOA for Health and Welfare and Finacial.
When somebody doesn’t have “capacity “the Health and Welfare comes into play.You can decide where the person resides.

Dad needs 24hour care.Agreed by myself and GP but until dad loses “capacity “ there is nothing I can do.Luckily he agreed to respite. Does this explain it better?
Sometimes I think nearly every one with dementia has”capacity “ because that is all you hear from GP’s etc...
I also said to him that I was downing tools.The carers would do shopping ,medication etc..I meant it!
Many thanks, yes I understand now.
My sister has got financial POA, and has recently registered the one for health & welfare with the OPG so should receive the official document for that soon. She understands they can only be used when capacity is lacking. I'll suggest she approaches the GP for capacity assessment, although I think she asked about that once before and the GP refused - perhaps because she's not qualified. But there may be other professionals who are qualified to do this privately.
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
The beginning of the end for me was before he was actually diagnosed and was in hospital for life changing surgery. They knew he would need a carer, and I said I could not do it, I cried, told them I was too old, too weary and had already done it too many times before (3) They ignored me, they said I lived with him, as his partner, so I would be his carer.

I think my heart broke then, and it has not even started to heal....
Hi maryjoan:

In order to take care of him properly you must take care of yourself first. If you don't already have them get some caregivers to come in and help, if you already have them increase their hours and check to see if anything is covered - I think you might be surprised. It takes a village to raise a child consider him almost childlike now. It's unfortunate but often times true.

TAKE CARE OF YOURSELF, IF YOU DON'T WHO WILL. YOU DESERVE IT.

Sending much love, many cyber hugs & best wishes for the days to come.
 

maryjoan

Registered User
Mar 25, 2017
1,405
South of the Border
Surprisingly, he started a conversation with me this morning

- he asked how would he get his pocket money if I was dead.

I replied by saying his son had a letter with all the details in it, and he would be OK.

So, trying to move a conversation ( which is a very rare thing) I asked him what would happen to him if I was to die. He said he would go and live with his son, of course. ( as it was a normal situation).

I asked him what I would happen to me if he was to die - he said he wasn't bothered.

I relayed this to his son, ( lives 250 miles away) who says he thinks he should phone his dad and see if he could get him to understand the reality of his situation.

Is it worth it?


 

maryjoan

Registered User
Mar 25, 2017
1,405
South of the Border
Hi maryjoan:

In order to take care of him properly you must take care of yourself first. If you don't already have them get some caregivers to come in and help, if you already have them increase their hours and check to see if anything is covered - I think you might be surprised. It takes a village to raise a child consider him almost childlike now. It's unfortunate but often times true.

TAKE CARE OF YOURSELF, IF YOU DON'T WHO WILL. YOU DESERVE IT.

Sending much love, many cyber hugs & best wishes for the days to come.
Thank you so very much - I really appreciate it. I do try to take care of myself, but I think my biggest problem is a mental health one. I simply cannot come to terms with the situation, and adapt mentally to it - I have tried counselling, but it was not helpful. I fear I might have a mental health breakdown.
 

Helly68

Registered User
Mar 12, 2018
598
MaryJoan, in relation to trying to get his Dad to understand.......sadly I think this is pretty much futile.
When my Mum was about to go into a CH, she had some capacity (we were self funding) and didn't understand why she needed to move. In hindsight, I would have spent less time trying to explain and more time enjoying "the present" - i.e. going out for coffee etc. Sadly she was never going to understand the terrible toll dementia (that she had) had already taken on my Dad, her main carer. She settled in pretty happily but I think she accepted it without understanding. Without trying to diminish anyone's loved one, dementia makes it almost impossible for someone to see anyone else's perspective or the effect they have on others. Obviously this isn't intentional, just another awful aspect of this horrific disease.
 

kindred

Registered User
Apr 8, 2018
2,414
Thank you so very much - I really appreciate it. I do try to take care of myself, but I think my biggest problem is a mental health one. I simply cannot come to terms with the situation, and adapt mentally to it - I have tried counselling, but it was not helpful. I fear I might have a mental health breakdown.
Sweetheart, please try to extricate yourself from this situation. I do understand about not being able to come to terms with the situation and adapt mentally to it. How can we? The situation is too much for us and you have had years of caring. Please do what you can to get out of this. Tell whoever you need to that you are having a breakdown, you are not able to cope any more. You have done so much maryjoan. I do not want you to have a breakdown, I barely survived mine and although as you know, the nursing home was wonderful and we were able to have a good relationship there until Keith died, I am still suffering the mental effects of those years of caring. I cannot believe what I was left to endure.
with love, Geraldine aka kindred.xxxx
 

TNJJ

Registered User
May 7, 2019
1,409
cornwall
Many thanks, yes I understand now.
My sister has got financial POA, and has recently registered the one for health & welfare with the OPG so should receive the official document for that soon. She understands they can only be used when capacity is lacking. I'll suggest she approaches the GP for capacity assessment, although I think she asked about that once before and the GP refused - perhaps because she's not qualified. But there may be other professionals who are qualified to do this privately.
With the financial that can be used straight away.I should have a look and see where it was signed..Did anyone scan it so you always have a record??I always scan everything so it is on the computer.I did to get AA for dad.Just applied for the higher rate so I have scanned some of dads medical notes and kept them on file for AA.
 

AliceA

Registered User
May 27, 2016
2,813
It all seems so complex. Being awarded does not mean free, our council contributes very little. Even when in the commissioned beds.
A direct payment is quite modest and if I accepted a commissioned bed would be well taken up with the travel costs. I would rather spend my savings on something near by. But could I be accused of frittering resources needed for my own needs?
I warned Social Services that we were near financial limits, unless it was 'one man standing'. The last to survive would have the value of the home. Ours is owned fortunately but too small to down size. We did that years ago.

Capacity is not a tick box issue. My husband is not safe on his own, he could choke, he could do something not realising the consequences. This is not no capacity just damaged capacity that fluctuates according to the state of health, tiredness, the atmosphere, he picks up more on body language.
He does have capacity in many ways, he knows what he likes and does not like. He certainly does not want to be out of reach of visitors.

I know this thread is about stopping being a Carer, perphaps on paper it could work. But could it emotionally?
For many it is not practical financially even when not in an official relationship.
Being happy about caring or unhappy is not the point, the point is whether we can continue physically or for some emotionally.
Could one live with the thought, could one type of unhappiness be exchanged for another type?

I suppose our own age, health and circumstances play a great part.

My caring was dismissed as well if you are happy to continue, I said I am but the doubt is whether I will be able to do what is needed. I do not think the case worker had a tick box for that.

But Kindred is right, one reaches a limit however we try not too. Xxx