Has anyone out there refused to care for a parent? If so, what happened?

[Boldredrosie]

Have any of you simply refused to care for your relative with dementia? I have a friend who is a psychogeriatric social worker and she says that when she was hospital-based A&E staff would regularly find elderly people waiting to 'be seen' having been dumped there by relatives who could no longer stand it.

I think I'm at the point where I simply don't want to shoulder my responsibilities anymore -- a combination of a verbally aggressive mother with dementia, redundancy, some physical health problems and a stroppy, unhappy teenager.

What do you think would happen if, say, when the warfarin clinic staff next phone up to complain about her not taking her medicine properly I just reply: "I'm not responsible for her medication if you think it's important she takes it then you arrange for her to take it."?

 

[sah]

Remember that there is no obligation -legally -upon you to care for another adult. If you say you cannot do it anymore, the SS/NHS would have to step in and provide care as she is a vulnerable adult.

Your family need you - your 'stroppy teenager' will soon be gone off to her own life; that comes first. Mine is now 27 and a mother herself - it goes so quickly.

I know it's not easy...and the emotional pull is so strong - but I'm sure your mum-when well-would want you to put you and yours first.

Good luck
Sah.x

 

[Wirralson]

Boldredrosie,

Apart from the teenager, I have experienced most of the others. In my case it was slightly different as my father was the primary carer. But I quickly realised that my economic and physical limitations and other aspects of the situation precluded me doing much in the way of caring.

In practice by the time my father admitted my mother was ill, sectioning was foreseeable and all but inevitable. However, you are, as Sah says, under no legal obligation to care for another adult. However, my understanding is that an adult who does not wish to be go into care cannot be forced to do so.

This poses a problem (and certainly did so in my mother's case). Had my father walked out, initially at least my mother would (eventually) have been assessed and probably "persuaded" to go into care by social services. But social services generally take the line of least resistance and don't intervene unless the situation absolutely demands it. Intentionally or otherwise they do rely on the guilt/sense of obligation of carers. So my mother could have been without intervention for some weeks.

Without knowing your circumstances I can't say what would happen, but the likely outcome would (or should) be some form of assessment of your mother's care needs if she was to be left on her own. The care plan would be developed from this. But you would require a strong will to avoid being roped into this.

There is also the question of other family pressure - in my case my mother's extended family put pressure on me to give up work and still do so. Again you need to know your own mind and stick to the position you decide to take.

The one piece of advice I would offer is don't just rely on a telephone response - my father did and that was (in my view) a mistake. You do need to write saying that you are unable to take responsibility for your mother's care. Telephone messages are imprecise and have a habit of not being joined up. What you are really talking about is engaging with the NHS and social services to ensure alternative arrangements for your mother's care, and that takes time and effort.

Wirralson

 

[Butter]

When my mother was last in an acute assessment unit we all (father, brother,me) had to make it absolutely and totally clear we could not take her into any of our homes.

She would not have come to my home, but she did want to go back to my father and she would have gone to my brother.

My brother and father had my full support.

There was a full case meeting so we were saying this to the whole team.

I'm almost certain the whole team knew there was no way we could look after her. But they had to ask us. And they had to keep a record of our answers.

 

[Grannie G]

There was no question of my mother coming to live with us.

I did take responsibility while she was in her own home and i did visit weekly once she was in care , just to make sure the home was all right. But I couldn`t possibly have taken full responsibility. We didn`t have that kind of relationship.

 

[Soobee]

There was no question of my mother coming to live with us.

I did take responsibility while she was in her own home and i did visit weekly once she was in care , just to make sure the home was all right. But I couldn`t possibly have taken full responsibility. We didn`t have that kind of relationship.

snap! I would never have been able to directly care for mum as we do not get on.

 

[dotfoxleics]

Boldredrosie,

Apart from the teenager, I have experienced most of the others. In my case it was slightly different as my father was the primary carer. But I quickly realised that my economic and physical limitations and other aspects of the situation precluded me doing much in the way of caring.

In practice by the time my father admitted my mother was ill, sectioning was foreseeable and all but inevitable. However, you are, as Sah says, under no legal obligation to care for another adult. However, my understanding is that an adult who does not wish to be go into care cannot be forced to do so.

This poses a problem (and certainly did so in my mother's case). Had my father walked out, initially at least my mother would (eventually) have been assessed and probably "persuaded" to go into care by social services. But social services generally take the line of least resistance and don't intervene unless the situation absolutely demands it. Intentionally or otherwise they do rely on the guilt/sense of obligation of carers. So my mother could have been without intervention for some weeks.

Without knowing your circumstances I can't say what would happen, but the likely outcome would (or should) be some form of assessment of your mother's care needs if she was to be left on her own. The care plan would be developed from this. But you would require a strong will to avoid being roped into this.

There is also the question of other family pressure - in my case my mother's extended family put pressure on me to give up work and still do so. Again you need to know your own mind and stick to the position you decide to take.

The one piece of advice I would offer is don't just rely on a telephone response - my father did and that was (in my view) a mistake. You do need to write saying that you are unable to take responsibility for your mother's care. Telephone messages are imprecise and have a habit of not being joined up. What you are really talking about is engaging with the NHS and social services to ensure alternative arrangements for your mother's care, and that takes time and effort.

Wirralson

Under a Health and Welfare LPA I think I'm right in saying that the attorney can "force" the donor to go into care. Indeed, this is one of the arguments in favour of arranging a Health and Welfare LPA.

 

[rajahh]

I think you have to tell a SS worker you will not be responsible for the medication. Telling the warfarin clinic is not the right way to go. This is just my opinion though as I get on very well with the warfarin clinic I deal with. They are extremely professional but obviously cannot be responsible for a person taking the medication.

It is a difficult thing for you to do, but put it in writing to a SS that you will not be responsible for seeing your mother takes her meds. then you will have to be prepared for the possible consequences. I donot know why your mother needs warfarin, but too much or too little can become life threatening, so the SW should realise the danger.

I totally agree that your own younger family must come first.

Jeannette

 

[Fed Up]

Oh YES

I've not had time to read all the responses but have done exactly that. I would like to say more and have complained about my mums care and the hospital to the Ombudsman. It is disgraceful but sometimes their is no alternative and I was carer not by choice but because it was assumed I'd take mum home. That was mistake no 1. Then more followed I'd never tell anyone to try to care for another person its b----y hard work 24/7 with no holiday. The government is cutting corners and the human cost will be to the carer who like me will end up hating the cared for. So todays rant over do not undertake any caring role unless your sure you want to do it. Do not trust anything said get it in writing and make sure you have backing if you need help. I'd never ever ever trust the NHS again and SS are even worse.

 

[jenniferpa]

Under a Health and Welfare LPA I think I'm right in saying that the attorney can "force" the donor to go into care. Indeed, this is one of the arguments in favour of arranging a Health and Welfare LPA.

I don't think so. You're on stronger grounds of course, but a health and welfare attorney is expected to take the wishes of the person they are attorney for into consideration. However, it it comes, for example, to making a decision about which care home of several a person should enter then yes, the welfare LPA is the appropriate person to make that decision. Page 74 of the MCA code of practice gives an example of where a welfare LPA may not be able to make that decision, or at least, what they need to consider.

 

[dotfoxleics]

I don't think so. You're on stronger grounds of course, but a health and welfare attorney is expected to take the wishes of the person they are attorney for into consideration. However, it it comes, for example, to making a decision about which care home of several a person should enter then yes, the welfare LPA is the appropriate person to make that decision. Page 74 of the MCA code of practice gives an example of where a welfare LPA may not be able to make that decision, or at least, what they need to consider.

By "force" I meant against the wishes of the person involved. I still think that is right if it is in the best interests of the person. On page 120 of the MCA Code of Practice it does state

"Personal welfare LPAs
7.21 LPAs can be used to appoint attorneys to make decisions about
personal welfare, which can include healthcare and medical treatment
decisions. Personal welfare LPAs might include decisions about:
• where the donor should live and who they should live with"

To a layman the Code is very difficult to interpret with "best interests" and "reasonable" being scattered throughout to maintain the need for flexibility. It does seem that being an attorney gives some benefit but with the need for consultation with the donor and other interested parties it hardly falls within the definition of "making a decision". I appreciate that the Code is very intricately drafted to cover all eventualities but it does seem almost incomprehensible.

 

[jenniferpa]

Don't get me wrong, I do feel that a welfare LPA is really important and if it's at all possible people should get it: if nothing else if give the attorney the right to review the sort of documents they may need to see to determine if a placement is appropriate. I also suspect (and I've said this elsewhere) that as time goes on, if you have a financial LPA but choose not to grant a welfare LPA the implication (rightly or wrongly) is that you do not want the sort of control a welfare LPA offers to be given to your designated person.

I just still question whether a welfare LPA could move a person into care against their wishes. I get your contention that "force" doesn't mean kicking and screaming, but if you some how managed to get a person into care and they were determined to leave the primary route for ensuring that they didn't leave that facility would be to use the DOLs procedures. At that would be the case for anyone, LPA or no.

 

[ggma]

It hi k that in fact the professional pres ring the medication is supposed to check the person is capable of taking it. In most cases A referral is made to social care for an assessment, but often now they will only provide an electronic reminder.
It is very hard to resist the pressure but you need your own space so do make it
Clear that you can do no more.

 

[Boldredrosie]

Thank you very much everybody for your thoughts and comments; really very helpful.

I should make it clear tho', I am her carer and have been for a long while because we all live together. I'm not in a situation where someone is trying to force her to move in with me; she's here already. This makes it easy for all the professionals to expect me to feed her, pay bills, sort out her medication, take her to appointments etc. There is no social services involvement because despite asking for help repeatedly (especially while my dad was dying) they just do not give a fig about any of us.

When she first began to deteriorate and I tried to get some support for us she went ballistic that I had described myself as her carer. This evening she's told me, in front of my son, how much I'm enjoying her decline. None of these things make one want to care for her.

 

[Soobee]

Even though you live there and are family, you do not have to care for her.

My dad refused to provide personal care for mum and social services accepted that without question. Set your boundaries and keep on telling social services that you are no longer in a position to carry on the caring duties you could do previously.

 

[Boldredrosie]

Set your boundaries and keep on telling social services that you are no longer in a position to carry on the caring duties you could do previously.

We have no social services involvement whatsoever -- they saw my mum once about two months after my father died. She refused their help so they dropped her even though she has a diagnosis of dementia and they never once spoke with me. I've asked for an assessment and none has been forthcoming. The memory clinic has already told me that with her assets we'd have to pay for any services social services suggested and recommended we cut out the middle man and go straight to an agency to provide somebody come in once a day. We've done that but I've yet to see any real benefit to me or my son.

 

[FifiMo]

OK, so your mum might be self funding and SW don't see need for involvement. Your next port of call then is her GP. The GP, even though you might have to remind them, has a duty of care towards your mum. You don't.

Very interesting also that that duty of care extends to social services too! Look up the SW Dept of your local council online and you will see what they are required to do!

Fiona

 

[EllieS]

They had no right to tell you your mum would be self funding without having started the assessment procedures which are not subject to means testing until the decision has been made that your mum is not eligible for chc funding which can be at home or in care home.
Make sure LA and PCT (or whatever they're now called) follow their correct procedures . The GPs have such an important role to play in this yet so often no mention is made of them.
Good luck and remember YOU!

 

[Boldredrosie]

They had no right to tell you your mum would be self funding without having started the assessment procedures which are not subject to means testing until the decision has been made that your mum is not eligible for chc funding which can be at home or in care home.

I think the psychiatrist was trying to be helpful when she suggested I just hire someone to come in. She had made two emergency referrals to social services about Ma, none of which were treated with any kind of urgency so we weren't even at a point when an assessment was likely to be made. I'm in Redbridge and it is a notoriously bad area when it comes to social services. They've been a deadloss as far as I'm concerned protecting neither a vulnerable frail old lady, a frail old man and a teenage child.