Care Plan - what are my chances??

[maryjoan]

We have a Care Plan review for OH next week - 14 months since the Care Plan was set up.

Many of you know I am at my wit's end with my life as his carer.

His family say I should leave him - but I cannot make myself do that.,

But I need more time. My Carers Review says I am entitled to a life of my own. That I should reboot my career, and my peace of mind, time for my own family, my grandchildren( who are not his).

I cannot carry on as wretched as I am.

If I tell the social worker that I cannot look after OH any more like this - we are unable to self fund - and paint everything ever so black - do you think that they would allow me some Respite Care - I have none whatsoever, and I need some days when I do not have to think of him all the time, it's driving me potty.

So, what I am really asking is ' do any of you out there think I have any chance of getting respite, or is there simply none available - I have been told there isn't.......

My doctor says its untenable and plans ahead should be made.

 

[Grannie G]

So, what I am really asking is ' do any of you out there think I have any chance of getting respite, or is there simply none available - I have been told there isn't.......

I don`t understand why you`ve been led to believe there is no chance of respite care for you @maryjoan. I keep reading about upcoming respite care in posts from anxious carers so surely it should it be available for you too?

It sounds as if whoever told you this is taking an easy way out.

 

[maryjoan]

I don`t understand why you`ve been led to believe there is no chance of respite care for you @maryjoan. I keep reading about upcoming respite care in posts from anxious carers so surely it should it be available for you too?

It sounds as if whoever told you this is taking an easy way out.

I was told that there is no respite in this area because all the local nursing homes will not keep beds on the off chance they are needed for respite as they want them occupied 24/7 - I did ring some of the local NH's and that seemed to back up the supposition.

I think I need to be more pro active about this, and not just take someones word for it!

 

[marionq]

I would say that respite is difficult to obtain but it is not impossible. There are indeed fewer beds held for respite so you will go on a waiting list but you need to get this up and running to have any chance. Our chance came and was lost while John was in hospital in February so I will have to get back on the list again.

What you seem to be looking for is time on a rolling basis each week and in this area that would be covered by daycare and a pickup by minibus to take him there. Is there nothing of that type available?

 

[padmag]

We have a Care Plan review for OH next week - 14 months since the Care Plan was set up.

Many of you know I am at my wit's end with my life as his carer.

His family say I should leave him - but I cannot make myself do that.,

But I need more time. My Carers Review says I am entitled to a life of my own. That I should reboot my career, and my peace of mind, time for my own family, my grandchildren( who are not his).

I cannot carry on as wretched as I am.

If I tell the social worker that I cannot look after OH any more like this - we are unable to self fund - and paint everything ever so black - do you think that they would allow me some Respite Care - I have none whatsoever, and I need some days when I do not have to think of him all the time, it's driving me potty.

So, what I am really asking is ' do any of you out there think I have any chance of getting respite, or is there simply none available - I have been told there isn't.......

My doctor says its untenable and plans ahead should be made.

 

[padmag]

What about a respite break for your partner somewhere further afield? It would mean that it would be difficult to visit but then you would have the respite you need so much. Have you had a financial assessment to ascertain whether you are eligible for support in this? Richard has had a financial assessment and they will support 6 weeks per year respite fully funded. The social services have been supportive but I suspect if you are self funding it may be more difficult - this is only my experience. It is really important you get a break before too long.

 

[maryjoan]

What about a respite break for your partner somewhere further afield? It would mean that it would be difficult to visit but then you would have the respite you need so much. Have you had a financial assessment to ascertain whether you are eligible for support in this? Richard has had a financial assessment and they will support 6 weeks per year respite fully funded. The social services have been supportive but I suspect if you are self funding it may be more difficult - this is only my experience. It is really important you get a break before too long.

I have been caring full time, single handed for two and a half years, with only 1 three day break when OH's son came to stay.
We are not self funding, unfortunately.
Sadly, as is common with dementia, my OH really does not think there is anything wrong with him, although I see his abilities diminish almost daily - he would never agree to go to a day centre or similar - but I think I might be approaching the stage when I tell him what he is doing, rather than looking for his agreement.

 

[marionq]

I never ask John and just make the arrangements and then tell him what a great treat is awaiting him. I don't mention it again until we are actually going to the respite and as it is such a good care home I know he will be well looked after. As far as daycare is concerned he has a lovely time. Unfortunately he forgets instantly so each day is like a first!

Would it be possible to visit a daycare with him to let him see what goes on. The one John goes to does just about everything and only about 30% or so have dementia. The other clients as well as the staff are so nice to him and the old ladies like him to talk to as he is a pleasant chap even if confused.

 

[AliceA]

There seems to be respite but not always when or where you want it.
I have struggled to get day care but now after months of effort I have found two mornings giving me 8 hours a week. Not that cheap!
One he prefers to the other but the driver is the same so that helps.
I too have been told I need a respite, four weeks a year has been offered/suggested.

I am looking at the financial side, there may be help because of my needs. It is based on assets in my husband's name. To get some financial assistance, three commissioned places have been mentioned.
Being county council commissioned, respite beds are available but whether they are free when one hopes is a different matter.
For us they are too far way in the county so this has met natural resistance as it is not as familiar as we feel it needs to be. There is no transport.
I am pushing for a direct payment to give me choice.
The nearer ones are in the next county.

I have found a place where I could stay near by. It is still not near home but more accessible, I feel if it works out it could be doable, short term.
My two respite mornings can be partly used up trying to find more respite!

I have started to study again on line, for interest sake.
I love learning and the discussions on line have been lively and stimulating. I feel for me this is a real respite.

I only started to progress when I stressed the impact on me and my role in caring.
Financially it make sense for us to be given support to carry on caring.
I have made it very clear I want to care but may not be able to and I gave a list of my own health issues.

I think respite means different things to different people.
Mine is governed a bit by my age and my own health.

Good luck and love, Maryjoan

 

[padmag]

I have been caring full time, single handed for two and a half years, with only 1 three day break when OH's son came to stay.
We are not self funding, unfortunately.
Sadly, as is common with dementia, my OH really does not think there is anything wrong with him, although I see his abilities diminish almost daily - he would never agree to go to a day centre or similar - but I think I might be approaching the stage when I tell him what he is doing, rather than looking for his agreement.

Am I reading this correctly in that the main problem is his reluctance to attend a day centre? If so, I think you 're right in that you need to go ahead with it whether he likes it or not. Sounds brutal but at least you will get a break, which will be better for both of you. When Richard gets onto the bus in the morning he 'orders' me to get on too, I always have a reason for not doing so (hairdressers, shopping, gardening, whatever) not sure if he's convinced but it distracts him and the bus is off before we know it! Also I meant that if not self funding, then social services have a duty to try to enable your OH to go to a day centre with transport. Sorry if I am incorrect in this, as ths is my experience. If my OH was self funding we probably wouldn't have a place at the centre he attends.

 

[hrh]

We were told by the hospital care nurse not to ask for respite but a placement and review after 4 weeks. Ss have to do a placement, and pay, respite you fund yourself

 

[maryjoan]

We were told by the hospital care nurse not to ask for respite but a placement and review after 4 weeks. Ss have to do a placement, and pay, respite you fund yourself

I have never heard of a placement.... how does that work, please?

 

[hrh]

It is only the use of language you use instead of telling social services you want respit you tell then you need a placement, this can be temporary for 4 weeks or permanent. So at the assessment you would need to keep saying about the pwd care needs etc.

 

[AliceA]

It is only the use of language you use instead of telling social services you want respit you tell then you need a placement, this can be temporary for 4 weeks or permanent. So at the assessment you would need to keep saying about the pwd care needs etc.

Is this in England?

 

[maryjoan]

Is this in England?

I wondered about that as well.....

 

[hrh]

Yes England.

 

[AliceA]

Part of our joint income is SERPS. This was a voluntary add on to my husbands state pension, we decided to do this as I would inherit 100%. We thought this was a sensible plan as whether there were one or two of us this would be a basic component come what may. We always treated our finances as joint so my earning went straight in the pot and helped in effect to pay the SERPS. Later a government changed the criteria and reduced the inheritance to 50%. As it was too late for us to increase funding for me due to age. We took the government to the ombudsman, 3000 of us did this and we won for those over a certain age.

The Council have done a financial assessment for respite, and have given a contribution that we are liable to self fund.
In these calculations the whole SERPS element has been taken, I feel that only 50% should have been because of the ombudsman decision.
I spoke to AgeUK who have advised the central office may have advice. I was warned that every council has its only policy.
This is what I find of most concern that it seems up to the whim of the local aurthority.

Respite is one thing but if long term care was needed I and others would have a problem. We tried to be responsible. My own work was mixed as I fitted around the family's need so did not accrue a pension in my name apart from the state one.

I hope to take this further so has anyone any experience and advice. I obviously do not have the energy to do as much as last time I contested.

 

[Marnie63]

@maryjoan - reading the first few lines of your post (and following on from others' comments), would you feel comfortable setting the ball rolling via Social Services for your OH to be found a permanent placement in a care home? That path might be easier, and then you will have a confirmed, no time limit, period of respite, with an option for him to stay on permanently. Apart from your comment "I need more time", the rest of your post says to me that it's time for him to go into a care setting, perhaps? I'm not sure if you mean you need more time to sort this out, or need more time with him (ie. not ready for a permanent placement).

All those things that you quote - being at your wit's end, wanting to boost your career, your peace of mind, your family, feeling wretched .. I can relate to a lot of that (bar the family bit). Those three years of looking after my lovely mum were so very hard and so very gloomy for me. I could see no end to it, though of course there is an end for everything. Mum was in her 90s and I was in my early 50s, no other family, no major financial worries, so I could do it, and I did it knowing at the back of my mind that there was a time limit on it (with mum's severity and age) and that I would, hopefully, still have a life to live afterwards, which I am doing now.

I don't mean to ask your age or personal circumstances, but if you feel your OH could go on for many more years, then where does that put you? Will there be a chance to do all those things for yourself afterwards? Are you happy to possibly forsake that to care for him to the end? How does the balance between wanting to care for him and regaining some of your own life sit?

I know this is easy for me to say in hindsight as my experience is over and for various reasons I desperately wanted to keep mum at home to the end, and I did, but we're only here once and if you are sacrificing so much, and clearly seriously struggling with it all, maybe a long stay somewhere would give you the chance, and a clearer mind, to think things through?

Hope I haven't offended with any of the above. Good luck.

 

[maryjoan]

@maryjoan - reading the first few lines of your post (and following on from others' comments), would you feel comfortable setting the ball rolling via Social Services for your OH to be found a permanent placement in a care home? That path might be easier, and then you will have a confirmed, no time limit, period of respite, with an option for him to stay on permanently. Apart from your comment "I need more time", the rest of your post says to me that it's time for him to go into a care setting, perhaps? I'm not sure if you mean you need more time to sort this out, or need more time with him (ie. not ready for a permanent placement).

All those things that you quote - being at your wit's end, wanting to boost your career, your peace of mind, your family, feeling wretched .. I can relate to a lot of that (bar the family bit). Those three years of looking after my lovely mum were so very hard and so very gloomy for me. I could see no end to it, though of course there is an end for everything. Mum was in her 90s and I was in my early 50s, no other family, no major financial worries, so I could do it, and I did it knowing at the back of my mind that there was a time limit on it (with mum's severity and age) and that I would, hopefully, still have a life to live afterwards, which I am doing now.

I don't mean to ask your age or personal circumstances, but if you feel your OH could go on for many more years, then where does that put you? Will there be a chance to do all those things for yourself afterwards? Are you happy to possibly forsake that to care for him to the end? How does the balance between wanting to care for him and regaining some of your own life sit?

I know this is easy for me to say in hindsight as my experience is over and for various reasons I desperately wanted to keep mum at home to the end, and I did, but we're only here once and if you are sacrificing so much, and clearly seriously struggling with it all, maybe a long stay somewhere would give you the chance, and a clearer mind, to think things through?

Hope I haven't offended with any of the above. Good luck.

You certainly have not offended me at all - I come on here to put things past you all, to get a better slant on what my situation is. His family are very distant from it all, and mine try to help, but he is not their Dad or even their Step Father.

I keep going round in circles and coming back to the fact that we have not been together very long ( 8yrs) and he has had this awful disease for the larger part of it. We are not married, and, yes, he could go on for years yet, and even when his sister in law tells me I should leave him, I start to get very confused about it all.

My common sense tells me it is time to move things on - my heart tells me I still feel a commitment to the man he used to be - my mental health tells me it is in a mess. His family tell me to leave him, the GP tells me it is time to look for other care - it is all stacking up I feel.

But he is an 'innocent' in all this - he is a victim - more than me - I will get my head into the right place eventually - as long as you are here for me to 'bounce' things off.

Thank you everyone, and thank you @Marnie63 - you are helping a lot.

 

[AliceA]

I think part of the problem is whatever we feel may be a reasonable plan, what may be a reasonable compromise there is just lack of services, lack of clear knowledge and lack of flexibility if and when our needs change. If there was a national social plan the safety net would help us continue. It may even provide work, more taxes so a win win. It would certainly help me to carry on. Too much is a post code lottery.