Father needs constant care, going crazy

LegacyUser

I'm my father's carer. We live together in the same house. Currently he's in hospital after having pneumonia. They're planning on releasing him on monday but I can't keep doing this. I'm almost 35 and a woman, I have to spend all day every day with him. Even if I just go shopping, I would most likely get a call from him saying he needs to use the toilet (he needs help getting to it and getting off it). I always wanted children of my own but I'm spending all my time with him, no time for dating or even getting a job (so no savings). With no time to myself, I feel like I'm going crazy and my life is slipping away from me. I also feel like I'll be old myself by the time he dies. He's almost 84. I'm also beginning to have some health problems of my own. It's a lot of physical care he needs and he's heavy, and I'm not very strong, with no family living nearby.

How do I convince someone to take over his care, or convince him to go for Fair Deal or something like it and go into the lovely carehome he occasionally would have a respite week in? I know that if he could get help from Fair Deal, that family, who can't help due physically due to distance, would maybe help financially by contributing to pay for the carehome.

shesty

I'm no expert but from what little I've seen, now is your chance.He's in hospital so go in, and talk to his doctor or nurse (privately, away from him) about what your options are.If he needs that level of care, surely you should be able to access some home care packages.Like I said, I am no expert but I know elderly relatives have been directed towards the HSE for a few hours of home care help a week and it has been put in place.Tell the medical staff what you just said.You feel he needs more heavy lifting care, it's only going to get worse and that you feel you can't do it yourself.Kick up a big fuss amd make them aware that you are not keen on him being released until something has been sorted, or you have been in put in touch with someone who could help.Respite care may have to be a slightly longer term goal (ie in a few months or something) but if you could get him into the home help system it would be a start I think.

I should add that you shouldn't have to 'convince' people because he is entitled to help of some sort, I just think you will have to do some chasing and pushing to make sure it gets dealt with.

groovyg

Op you need to talk to the doctors and nurses in the hospital and and organise for home help, this is something they can put in place especially if you have health problems yourself. I've an elderly relative and he's at home with his wife but she can't lift him or look after him so care assistants come to help with getting dressed and up in the mornings and evenings. The only thing she is able to do is prepare his meals. Have you any other family that could help out?

missmatty

shesty wrote: »

make them aware that you are not keen on him being released until something has been sorted

This. You can absolutely refuse to take him home till something has been sorted. A family member is in a similar situation. You should not be doing all this yourself, everyone I know who is in that condition at home (quite a few people) has home help several times a day. You need to make a fuss about getting what you need and are entitled to.

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ChannelNo5

OP what Shesty said. Ask to speak to the ward social worker before your dad is discharged. dont let them discharge him or they will not help you. tell them what you have said here and that you cannot cope on your own and ask for him to be assessed for home help at the very least. we are going through this with my dad at the moment and there is help but you do need to be firm and ask for help. Good luck

freshpopcorn

Tell the hospital that he'll need a few weeks convalescents(Not sure of the spelling) care. This will allow you to organise a few things. I think you may need to talk to the discharge coordinator in the hospital. Be very careful tough you don't discharge him without this being in place!

Ghekko

You're in a tough situation. I agree you should not take him home until measures are firmly in place for home help. Even with that, you may only get about an hour and half per day - and possibly no help at weekends. Where are your siblings? Do they help at weekends? You need to stand up for yourself now and tell them all you cannot continue as full time carer. If your dad refuses nursing home care then you can also pay for home help/carers to come in so if he has savings start using that or get the other family members to cover the cost seeing as you will still be left doing most of the work. You need to get out and get some bit of life for yourself before you end up resenting your dad and family. I'd also get all documentation in order to be ready to apply for the fair deal scheme. At some point your dad may agree to move into a nursing home.

Athdara

Your father is entitled to 2 weeks in a privately nursing home paid for by the HSE or a HSE ran nursing home. It used be called the Winter Initiative but it's all year round now for the elderly. Insist the hospital puts this in place for you- it is their job to do this not you. This will give you 2 weeks at least to get talking to your Dads GP, PHN etc to try and get the help you need.

Skibunny77

The posts here represent societal attitudes to older people and I find them infuriating!! OP, I fully appreciate the stress and strain you are under but you don't own your dad and he has every right to leave hospital once he is medically fit to do so. What does he want to do?!! I work in a hospital and constantly have family members telling me that they won't bring their family member home, I advise them that it isn't actually their choice, that an 80 year old is as entitled to make his/her own decision to leave hospital as much as a 40 year old and live with the consequences of the risks in the same way. Staying in hospital, surrounded by infection is not an acceptable or desirable option for the vast majority of older people and I frequently talk to older people feeling pressured into shuffling off into nursing homes just to keep family members happy. Here's what I suggest. Talk to your father, treat him like the adult he is and tell him that you are struggling to cope. Don't expect professionals to have that conversation for you. Start with your dad and see what he thinks, once he understands you have really reached your limits, would he then accept day centre/meals on wheels/home help etc? We are all going to be old one day, act as you would like to be treated, be honest with him, and don't expect him to hear news (your daughter is worn out) from Healthcare staff before he hears it from you, I can't tell you how many tearful older people I meet, wondering why their family members haven't been honest with them... So once again, family members cannot prevent a discharge, they can decline to offer care. It is up to the patient as to what they decide to do in those circumstances, not the family.

fishy_fishy

Skibunny77 wrote: »

<Snip> the post is just ^ there. No need to clog up the thread with duplicate text.

They have a right to go home but if you work in a hospital you'll know only too well that them being in hospital is just about the only way to get proper care structure put in place.

It sounds like the OP's dad is at a point of needing more care than one person can provide. Anyone who's been in that position knows that you only get help in this country by refusing to accept responsibility for their care without assistance.

It's not an attitude about old people - it's a reality that one person is being left to do all of the hard work to the point that they get absolutely no time for themselves. How about this for an attitude? That man has likely worked all his life, paying his taxes and his fair share, and he now needs the state to support him a bit more. And the STATE attitude is to only provide that if they can't convince a family member to give up absolutely all of their own life. Even though the older person had paid their fair share and shouldn't have the indignity of relying on their child for every time they need to use the bathroom every day of the year?

Nah. People here have the right attitude. You have to be realistic about what care a person is actually ABLE to provide for their family member. Don't kill both people for want of a couple of hours of care a day. And nursing homes exist because sometimes a person isn't able to live in their own home any more. It's attitudes like yours that cause people like the OP to suffer at home alone, carrying a burden that the state should be assisting with, and then leaving her having to make the heart wrenching decision to say "no, I'm not taking him home. I won't care for him unless supports are put in place".

punisher5112

Skibunny77 wrote: »

<Snip> No need to clog up the thread with duplicate text.

Oh jaysus......



The girl is looking for help......

Its sad she even has to ask.....


So many on the dole and what not. Why not set up a group to help in areas they live.

Op I feel for you and obviously its extremely hard for you and the dad.

Come back to vent any time.

Skibunny77

fishy_fishy wrote: »

<Snip> No need to clog up the thread with duplicate text.

Why hasn't anyone anywhere in this thread actually suggested that the OP talk with her father about this? FYI, I am fully aware of how awful state provision for older people is and regularly see exhausted, worn out carers - a key part of my role involves fighting and advocating for an older person to express their wishes and to. access maximum resources (the ones they are willing to accept) every day - I also regularly encourage carers to tell the older person they have reached their limits. Over and over again, older people who are made aware of the carers stress by the carer themselves, are far more likely to engage meaningfully with services, than simply having them imposed upon them. My issue with this thread is that nowhere has anyone suggested actually involving the older person in his own careplan - are all of the older people who complain to me about this issue wrong too?!!

punisher5112

Skibunny77 wrote: »

<Snip> the post is just ^ there. No need to clog up the thread with duplicate text.

Maybe the family member is embarrassed or ashamed to ask for help or feel they will let their family down......


Think both ways it can be extremely difficult.

fishy_fishy

Skibunny77 wrote: »

<Snip> the post is just ^ there. No need to clog up the thread with duplicate text.

And what if they don't want external carers? What then? what about the child's right to determine how much they're willing to give?

Sure, the ideal situation is to involve the elderly patient and to find a solution that everyone likes, but very often they "don't want a stranger in the house". Where does the right appear for the child caring for them to say "I can't do more. I can't keep up what I'm already doing. I can't cope"?

I think a lot of people in this thread are speaking from the personal experience of being in the OP's position. My family were. My grandmother didn't want anyone coming in, but we couldn't give more. She reckoned she was okay to go home without any extra help. She wasn't. She'd have been dead in less than a week (as it happens she very nearly was anyway). So it often does come to the point where the child has to insist that a care package be put in place. And we all know that that won't happen once the person is out f hospital, so people here are correctly advising the OP to act now and insist on supports before accepting her father home and back into her care.

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Addle

My parents would hate to be a hindrance to any of their children.
Talk to your father OP.
Maybe he just isn't aware of your distress.

pwurple

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That's a bit cheeky.

The poster has come in here with apparent knowledge and experience, and a very useful suggestion on discussing the options. I don't think it's an appalling attitude. it's realistic, achievable and shows respect to the OP herself and her father.

Pushing it back onto our overladen health service with people on trolleys waiting for that bed is immoral.

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PickleJar

There are staff within the hospital whose role it is to work out with family/carers what is practical for at home care before discharging the patient from hospital. Make sure you speak with them before your Dad is discharged to your care - and if you're fobbed off for any reason then you should refuse to take him home. This is for the welfare of both of you.

His wishes are important of course but the reality is that when he ceased to be able to live independently the decisions stopped being just his to make. If you're not already talking about it (and believe me I know it's a difficult conversation to have!) you need to discuss with him what you, ONE person with their own life to lead, can realistically do. Get referred to your local Public Health Nurse who will do a home visit and be honest about what they can provide - physical things to make your Dad more comfortable like beds, support rails etc and also home help hours for personal care (bathing/dressing etc). Don't be afraid to be clear with the Nurse and others about your limitations - you are one person and you are not a professional caregiver. You can love your Dad and still say you can only do so much. Talk to the rest of the family about what is reasonable going forward.

One on one caregiving is very hard for people to understand who haven't been there and done it themselves. That's not a holier than thou attitude, it's just the truth. Keep that in mind when people are less than helpful as you will encounter those throughout your caring experience. Wanting your own life is not frivolous or selfish. If you don't maintain a life outside of caring what will you have when your Dad is no longer with you?

If I'm allowed to recommend another forum that saved my own sanity it's agingcare.com - it has mountains of threads and is a supportive environment where you can vent/ask questions to people who have actually been there and get it.

PickleJar

pwurple wrote: »

Pushing it back onto our overladen health service with people on trolleys waiting for that bed is immoral.

Morality has little helpful place in this discussion.

Neyite

Prior to discharge, find out all you can about respite care, home helps and other things that can be put in place - your public health nurse is a good place to start. You do need to be persistent though. It's an overburdened health system so once your dad is discharged the urgency of his care needs will get forgotten by the medical staff.

Unfortunately, no matter how much we love our loved ones, there will come a time when the care you can give falls far short of meeting their needs. Your dad is 84 - he could live another 20 years and you'd be 55, so you need to formulate a long term plan (with him if you possibly can) that suits both of you. You need to talk frankly with him - or have a family meeting. He needs to see that when he dies, he'll leaving you a lot older, unskilled and unable to find work to support yourself, and you both need to find a balance.

The family that are further away can help you right now by giving up a few days annual leave each in order to give you a well earned break a couple of times a year. Again, the family meeting to discuss the fair deal scheme and outline a plan of how best you can ensure your dad gets the care he needs might be helpful. Sometimes hearing it from several people makes it sink in. Even if you were free for just mornings, you might be able to do some coursework or lectures to give you that badly needed career.

It's a tricky situation, but maybe by getting some family seeing it from your POV might help - especially if they think you are close to burnout and they themselves might have to be his full time carer

I feel for you OP, I really do. I currently look after my father because the rehab unit he was in led me to believe that there was no other option. They were discharging him and that was that. They were not prepared to move him into their nursing home section as his stroke injury causes him to have major anger issues. So, I gave up my full time job to be at home with him.

A few weeks later I was told by his GP that they were obliged to keep caring for him. But I didn't know that, I could only go with what I was told at the time. There was a care package put in place before he came home though and our public health nurse is great. Originally, the dept that organises home help said that he required extra assistance of one person twice a day (morning and night). My dad is 6ft, 15stone and paralysed down one side of his body. How they thought that one person could move him from bed to comode, clean him and put him in wheelchair is beyond me. But the rehab unit were happy to send him off with only this amount of extra help even though their own health and safety insisted on two people doing this in the hospital. Anyway, my public health nurse made sure he got max of 21 hours per week (2 people for half hour 3 times a day).

My own take is that the hospital just want the patient off their wards and they are not bothered what happens apart from that. If I knew then all the things I know now, I'd probably have staggered taking him home over a lot longer period.

Physically it's a demanding job OP but I find it's even more demanding on my mental health so keep an eye on that. <snipped forbidden request>

Emme

PickleJar wrote: »

Morality has little helpful place in this discussion.

+100%. Is it moral that somebody has to give up their life and their health to care for somebody when they are not physically, financially and emotionally able to do so?

The people criticising the OP may know all about the elderly in hospitals but may not have any experience caring or seeing somebody caring for an elderly person and ending up chronically ill, impoverished, physically and emotionally drained and unemployable as a result.

A disproportionate number of carers are on antidepressants and they have more health problems than non-carers. They are also more likely to be obese because food is the only comfort carers have particularly if they are single.

This is probably not the OP's situation but the elderly person may be abusive or have been abusive throughout the person's life.

As Strawberry Milkshake said, people caring for the elderly at home are expected to do things that staff in nursing homes would not do. A slight person is expected to lift and move a heavy moribund person at home on their own. In a nursing home 2 people would lift this person and if they are very heavy or immobile they would use a hoist.

I think the OP is perfectly entitled to do whatever she has to do to get proper help and care for her father. The callous and judgemental attitude of some posters proves how unhelpful the health service is and how they expect people caring on their own to do things healthcare unions would not allow their staff to do.

If people don't want to care for their elderly relatives there is often a good reason. They may have financial and family responsibilities of their own. They may have health issues which means they are unable to adequately care for somebody on their own. The person who expects them to care for them may have been abusive earlier in the person's life. How dare hospital staff judge beleaguered family members of elderly people!

I know nursing and other front line hospital work is not easy but regardless of how difficult it is there is always some support with colleagues and health and safety regulations to protect the staff. It is very different caring for people in a hospital setting than caring for them alone without help or respite in a home setting.

shesty

Skibunny77 wrote: »

<Snip>Please do not quote long posts in their entirety. Highlight relevant points, or address the poster you are replying to by username. No need to clog up the thread with duplicate text.

I actually 100% agree with you.However, .... the system is crap.We have an awful set up in this country whereby it's totally ok for elderly people to take up hospital beds long term because we seem to have no coherent system whatsoever for the next step.Other than eventually shunting them into a care home where they (or a relative) often has to pay an extortionate amount of money plus extra for simple things like a tv or a newspaper every day, where they are encouraged to get into wheelchairs if they are wobbly on their feet, and where they are essentially a business commodity.

My advice to the OP was to try to sort her situation in the immediate here and now , while the father was still in hospital and she had people to talk to.Longer term, yes she should 100% talk to her father.There is no way she should be doing this by herself.But equally, being realistic, elderly people often don't want outside help, let alone a move to a nursing home.They resist it, as they should.Would you like to be told you have to go move to a room in what is essentially a hospital for the remainder of your life, rather than stay in your own home where you've lived all your life?I can't imagine anything worse.The aim should be to keep them in their homes as long as possible, but the system is not very good at supporting this.

Ultimately the OPs question indicated that she knew nothing about how to start to help her situation and I myself was advising her based on that.And the fact is that you do have to shout to get any attention.The system is not good, it creaks along at best, and she needs help.Of course her father should be included in the process, that should go without saying.

Longer term for this country how we deal with this will be a huge problem and like so many others, needs to be solved

Addle

2 people will require care if the needs of both aren't taken into account.

You should not have to shoulder this responsibility alone OP. You have siblings?

pwurple

Emme wrote: »

+100%. Is it moral that somebody has to give up their life and their health to care for somebody when they are not physically, financially and emotionally able to do so?

The people criticising the OP may know all about the elderly in hospitals but may not have any experience caring or seeing somebody caring for an elderly person and ending up chronically ill, impoverished, physically and emotionally drained and unemployable as a result.

Of course morality comes into it. Morality comes into everything for goodness sake.

My mother cared for her parents, of course I've seen it, I took a few shifts as well while they were very ill. We all discussed it as a family, including those needing the care, and came to an arrangement which was changed as needed. It's not right this woman is left holding everything, but her own family and her father are the problem. not the hospital.

And I didn't see anyone criticising the OP. Nowhere has she said her father is unable to make decisions, but a lot of the suggestions in here are to go behind his back and organise his life for him, without giving him any say in it. This is what was criticised.

The suggestions to gather information and present clear options, discuss with everyone affected are useful, and hopefully this is what happens.


Holding the hospital to ransom will penalise someone else who needs that bed. Please don't do that. It's not good for your father (infection risk), it's not good for the unfortunate who needs the bed, and it will be highly stressful for you.

Arm yourself with information, and communicate, communicate, communicate.

Skibunny77

fishy_fishy wrote: »

And what if they don't want external carers? What then? what about the child's right to determine how much they're willing to give?

Sure, the ideal situation is to involve the elderly patient and to find a solution that everyone likes, but very often they "don't want a stranger in the house". Where does the right appear for the child caring for them to say "I can't do more. I can't keep up what I'm already doing. I can't cope"?

I think a lot of people in this thread are speaking from the personal experience of being in the OP's position.

I wrote as a professional and someone who has provided care for two older family members for many years myself (until one finally decided to go into nursing home, two years after I felt he should and till my aunt died in my own home). Suffice it to say, I get how demanding caring is and I still passionately believe that older people have the right to be involved in their own care.

The Op is absolutely entitled to say she has reached her limits and can no longer provide care, she doesn't have the right to make all decisions for her father - her father is then entitled to make his own decisions, based on the information she has given. I know many older people who, when their carers reach limits and have adult conversations with them about that, are then prepared to accept care they have previously declined. I know others who despite the reduction in care, decide to try home alone and suffer the consequences (and are happy to do so) . Older people have the same entitlement to make their own decisions and be involved in decisions impacting them as you and I do.

I speak to older people every day who feel shuffled aside, as though family and professionals are having conversations about them, without them!

The advice given here is also flawed, to apply for the home care package, the older person must consent, must sign two sets of forms. It's not as simplistic as people here suggest.

Op, please sit down and talk to your dad, tell him you can't cope anymore and ask him how he thinks he will manage, a professional can help you have that conversation, but from my professional and personal experience, older people will engage when they feel engaged.

Of interest to those who feel my commentary is heartless, it reflects legislative changes, based on feedback from older people themselves. We will all age folks...

punisher5112

Spaces.... Can't read any of that...

alibab

That's funny I can read it no problem. It's not what people want to hear and I think the poster has got a lot of heat for posting it but frankly she is right . It's the difference between a safe discharge and a unsafe discharge.

If the person has capacity and wants to go home and is aware of all risks including falls and injury than they can be discharged knowing the risks etc and there is nothing anybody can do . I have seen this many times and it's heartbreaking when someone won't accept help but it's there choice .

Choice is key here are the elderly person is the only one anyone should be talking to . All discussions should be held in front of and with the person present . In most areas the hospital have no say in home help allocation and the person actually has to first go home and then apply through the public health nurse .

I agree the area needs reform as in more home help to allow people to stay in there home this goes without saying . People also need to be aware a person can no longer just enter extended care they need what is called a CSAR which has to be signed off by a consultant etc and the person going to care has to consent .

Things are changing and with the capacity bill next of kin will actually have little to no say at all going forward.

Emme

Skibunny77 wrote: »

I wrote as a professional ...

Fair play to you for caring for your relatives but the first thing you say in your post is that your are a professional. If you mean nurse or other professional in healthcare you would have been far better equipped to care for elderly relatives than people who do not have medical training.

You would have the training in dealing with patients, lifting, handling, feeding and knowing vital signs.

You would also know the routes to take to get whatever little help is available and know how to fight for it.

Most carers are not in that position. The role of carer is thrust upon them, they didn't ask for it but they feel they should take it on because the person who needs care is a parent or close relative. They muddle through as best they can until a crisis occurs. These people need as much help as they can get and should not be fobbed off with excuses from the healthcare system. They should not be expected to do a job alone that two professionals would do in a healthcare setting. They should not be made feel guilty if they admit that the task is beyond them.

I know of a case where a hospital gave a mother 15 minutes instruction on how to peg feed her child. 15 minutes! And then they sent her home to cope alone.

There is a huge difference caring for an elderly person or indeed a sick child as a professional and trying to care for them as somebody who has no training in healthcare.

Skibunny77

Emme wrote: »

Fair play to you for caring for your relatives but the first thing you say in your post is that your are a professional. If you mean nurse or other professional in healthcare you would have been far better equipped to care for elderly relatives than people who do not have medical training.

You would have the training in dealing with patients, lifting, handling, feeding and knowing vital signs.

I don't have training in any of the above and while there aren't that many resources to access currently, there were certainly less then.

I agree with everything you have written about the hardships associated with caring - my point continues to be simple - the adult patient makes decisions about his life, not the carer. The carer is entitled to withdraw care. I completely agree with you that the carer should not be made feel guilty for reaching their limits but equally once they have, they cannot step in and make decisions for the older person. This isn't my own personal opinion - it is a fact, based on the feedback directly given by older people, by all agencies (Age Action, Sage etc.) representing older people and by changes to legislation.

In my experience worn out carers often want to stop caring (understandably) but then seem to think they can make decisions about what the older person needs and what services they should accept - this causes enormous distress to older people. Often the carer feels guilty and just wants to know the older person is cared for, regardless of how the older person feels about the proposed care.

The Op looked for advice on convincing her father to go into a nursing home when he clearly doesn't want to go into one. Where is his voice in this thread? Should he be miserable in a nursing home? Or can he be supported to consider all of his adult options, following an adult honest conversation with his carer?

The reaction to my advice on this thread would suggest that most people don't believe that is the preferred option - yet, in a few years time, the law will ensure this is the only option.

RoYoBo

In an ideal world, I accept that all parties should communicate and the person most affected should be consulted. Sometimes, however, the lines are very blurred when it comes to who is the most affected.

In my own experience, a number of elderly people are not prepared to listen to any alternatives and insist that they do not want or need 'outside' help, despite the glaringly obvious fact that they do. If they live on their own and can shoulder the responsibility and consequences that this entails, then I am behind that choice.

But, in most cases, they don't live on their own by the time that decision needs to be taken. By default or otherwise, they are either living in someone else's home or a family carer has moved in with them. Often, the carer has resigned from the workforce and left their own life behind to support their relative, with little or no support for themselves.

So, in order for their decision to remain there to be accommodated without help, the carer has no choice but to continue to care. The unlikely alternative is to watch the helpless person try to crawl to the bathroom/kitchen and remain impervious to their basic needs for food, washing and comfort.

A carer in their own home cannot resign - so whose 'choice' trumps? I hope that any new legislation bears this in mind.

Skibunny77

RoYoBo wrote: »

So, in order for their decision to remain there to be accommodated without help, the carer has no choice but to continue to care. The unlikely alternative is to watch the helpless person try to crawl to the bathroom/kitchen and remain impervious to their basic needs for food, washing and comfort.

A carer in their own home cannot resign - so whose 'choice' trumps? I hope that any new legislation bears this in mind.

The new legislation is very clear and unequivocal - the choice rests with the older person not the carer. The carer does not have to continue to accommodate an older person if the older person lives in their home - but they can't insist on what happens next to the older person. I know of cases where the older person left the carers home and found sheltered accommodation rather than enter nursing home care and struggled on there. If the carer lives in the older persons home, the older person decided what care etc enters their own property. The only exception to this is when the older person is medically deemed to lack mental capacity to make their own decisions (you need to be very significantly cognitively impaired).

Emme

RoYoBo wrote: »

In an ideal world, I accept that all parties should communicate and the person most affected should be consulted. Sometimes, however, the lines are very blurred when it comes to who is the most affected.

In my own experience, a number of elderly people are not prepared to listen to any alternatives and insist that they do not want or need 'outside' help, despite the glaringly obvious fact that they do. If they live on their own and can shoulder the responsibility and consequences that this entails, then I am behind that choice.

But, in most cases, they don't live on their own by the time that decision needs to be taken. By default or otherwise, they are either living in someone else's home or a family carer has moved in with them. Often, the carer has resigned from the workforce and left their own life behind to support their relative, with little or no support for themselves.

So, in order for their decision to remain there to be accommodated without help, the carer has no choice but to continue to care. The unlikely alternative is to watch the helpless person try to crawl to the bathroom/kitchen and remain impervious to their basic needs for food, washing and comfort.

A carer in their own home cannot resign - so whose 'choice' trumps? I hope that any new legislation bears this in mind.

This is an excellent post. The OP already has health issues and caring for her father may exacerbate them to a point that the OP may well need care herself. Who will be there for her then? Will the do-gooders continue to goad her into dragging her broken body around so she can keep caring for her father?

A carer should be able to refuse to continue care if doing this is detrimental to their physical or mental health. For example, the child of a physically, emotionally or sexually abusive parent should not be press-ganged into caring for them even if they are the only candidate for the job. A person who has a chronic illness should not be press-ganged into caring if they do not want the job or do not feel that they are physically capable of doing it competently.

In many cases the carer dies first. What happens then? You cannot flog the dead body of a carer into life or do a voodoo spell to make them into a zombie carer. Indeed, many carers are zombified and destroyed by what they have to do and they exist in a sort of living death. If you cannot revive a dead carer who makes choices for the person who needs care? If they insist on staying in their home (which is their right) but there is nobody to care for them what happens then?

Some people enjoy caring and it can be a positive experience. These are the people who are the most enthusiastic advocates of caring because they may not have seen the really dark side of it. They may be able to get help from other family members. Caring is not easy no matter how positive the experience but there is big difference in caring for somebody who is relatively compliant and caring for somebody who is bullying, contrary and abusive. Caring for these people can be a harrowing experience leaving the carer a burnt out shell who never recovers even after the need for caring is over.

The OP has admitted that her health is suffering, she is unable to keep going and her wishes should be respected just as much as those of her father.

pwurple

Emme wrote: »

This is an excellent post. The OP already has health issues and caring for her father may exacerbate them to a point that the OP may well need care herself. Who will be there for her then? Will the do-gooders continue to goad her into dragging her broken body around so she can keep caring for her father?

A carer should be able to refuse to continue care if doing this is detrimental to their physical or mental health. For example, the child of a physically, emotionally or sexually abusive parent should not be press-ganged into caring for them even if they are the only candidate for the job. A person who has a chronic illness should not be press-ganged into caring if they do not want the job or do not feel that they are physically capable of doing it competently.

Agreed, nobody should be forced into work they don't want.

Equally, holding a hospital bed to ransom is abhorrent.

You think it's just those two options? Black and White? Or is there the tiniest possibility there are more shades of grey in there?

kylith

Skibunny77 wrote: »

The new legislation is very clear and unequivocal - the choice rests with the older person not the carer. The carer does not have to continue to accommodate an older person if the older person lives in their home - but they can't insist on what happens next to the older person. I know of cases where the older person left the carers home and found sheltered accommodation rather than enter nursing home care and struggled on there. If the carer lives in the older persons home, the older person decided what care etc enters their own property. The only exception to this is when the older person is medically deemed to lack mental capacity to make their own decisions (you need to be very significantly cognitively impaired).

But if her father refuses help? What then? It's easy to say that she can leave and let him struggle on himself, but could anyone with a conscience actually let their elderly parent to fend for themselves when they can't even go to the toilet without help?

I think that the OP does need to talk to her father and tell him that she can no longer manage, but that if he refuses to discuss getting help then she will have no choice but to take the decision out of his hands, for his sake and for hers.

RoYoBo

My heart goes out to the OP. She has flagged up that she is unable to cope any longer but, without a shadow of doubt, if she does not seize her point of power in this instance she will, once again, be left carrying the can.

However repugnant it is for anyone to see her father blocking a bed in hospital, it must be said that this is not the OP's fault. Wherever the blame needs to be leveled, be that the government, the system, the HSE, other family or a mixture, the OP must now look after herself or collapse under the strain.

Personally, I am watching a similar situation (in-laws family) and I have been told to keep my nose out of it when I expressed concern and asked for something to be put in place to help her. The parent has adamantly refused to allow any non-family in the house or go to any kind of respite and her carer (approaching 50) is buckling under the pressure. Any attempts to talk, compromise or explain are met with tears and trauma.

Other family live too far away or have other commitments, so she is the only one 'available' to shoulder the responsibility. They do not want to hear that there's a problem for the carer - everything's grand as they breeze in and out a couple of times a year bearing gifts and mouthing platitudes. Because of duty and guilt ... and, yes, love ... the carer is caught in a trap that can only end with the passing of her parent. This could be as long as 20 years away and has been going on for the last 10 years.

Enacting laws that will copper-fasten the rights of the elderly in circumstances like this will be counter-productive IMO. If nothing is put in place to support carers rights, the system will undoubtedly be forced to provide more institutionalised care than ever. With no option but to sacrifice one's own life and health indefinitely, it would be madness for anyone to ever consider such a caring role from the start.

To the OP - seize your point of power now and do whatever you need to do to preserve your remaining health and sanity. Once you remove yourself from the equation, others will be forced to pick up the slack. Who will actually do so and what transpires is NOT your responsibility. You've more than done your bit and you deserve to have a life of your own before it's too late.

Stan27

My elderly granny lives with us (92 and had a stroke, mental issues) for the last 16 years.
It can be extreamly hard work to mind some one who needs full time care.
I wouldn't judge anyone who couldn't cope. It's non stop full on!
I personally couldn't be able to be a full time carer.

sullivlo

OP, we were in a similar situation recently.

We requested a multi disciplinary team meeting with the staff in the hospital. We met with nurse manager, social worker, doctor and OT, along with our relative and discussed it all together.

We asked the doctor - medically speaking - what needed to be done to maintain health in our relative, and we discussed whether our relative could do it herself (no) and whether we could do it (no) and asked what options were left.

They suggested step down care and a home care package. Which is now in place and we're all much better off.

The district nurse can help set things up too.

LegacyUser

I feel for you so much OP. I am in that situation (without sacrificing quite as much as you). The utter lack of help - or even advice as to how/where to look for help - from the 'health professionals' is horrifying. It's like they realise you'll pick up the pieces, and you don't need them to work to solve the situation that you and your parent are in. Like an earlier poster said, she gave up her life because there seemed to be no other option. Then she found out later - too late for her - that other options did exist.

The carer role, even part time, is so difficult. Maybe some people have a better background/training for it, or are more mentally suited to it. I find all of it the most awful thing I could ever have imagined for my life. I've never got on with my father. He criticised me for as long as I can remember. To be brutally honest, having to wipe his backside after a poo just makes me feel as awful around him as he made me feel as a child. If not worse. He criticises how I do bedpans (not as well as my sister). He refuses to have 'any strangers in the house'. I don't know if he's being proud, being grumpy, or is 'happy' (in as much as he ever was 'happy') that I have to do the carer role.

I hate it. I hate it so much that words can't describe it. I actually don't care any more if he finds it demeaning. However, I find it very demeaning, and taking over my life. I've had to cut my hours at work, I never make arrangements to meet friends anymore (if I tell him that say I can't do Thursday week, don't you know there'll be a 'crisis' that day). I resent him. I can't understand how he appreciates none of the sacrifices I've made, and just rants and criticises.

This is a horrible thing to say, but the only possible consolation is that I might have some money from him at the end. Although even being a part time carer is eating into my earning potential, not to mention screwing with my mental health. I'm so tightly wound all of the time. And unless he has outright won the 9M lotto tonight, I can't think of enough money to compensate me for this.

I started counselling. Not because I can't deal with him being sick. Because I can't cope with being his part time carer anymore, and I want out. How can I tell him that though? He hasn't been a bad father. He hasn't been a very good one either though. Basically if I say ENOUGH, then his worst nightmares happen: 'strangers' in the house, or else a nursing home. Do I value my life and mental well being above his 'worst nightmare' happening. I don't know. I don't know if I've reached rock bottom enough to say a big yes to that. The guilt involved is huge. And my father piles on the guilt too. Sometimes I just want to go somewhere isolated and scream.

I wasn't saying all this to be all about me, but I wanted to explain a few situations to let you know that you're not the only one. And the sheer guilt involved is huge. Actually admitting that you hate caring for your own parent, and resent them for it. That's hard to do.

I totally understand the POV of the poster who was an advocate for the elderly, but to me that's all 'ideal world' stuff. I'm so fed up with my father having huge needs, but deciding that he only wants me to deliver them. I'm sorry, but his age does not give him the right to behave selfishly and ungratefully.

I don't know what to do. But I sure as hell know that I cannot keep doing what I'm doing, or I'll have a breakdown. I understand why a poster said that it is abhorrent having a 'bed blocker' parent. But the next time my father is hospitalised, that's what I'm going to do. I've seen enough of the ****ty system to know that's the only way to get any help. I understand that might make someone else's 82 year old parent spent a night on trolleys. But what else can I do. The alternative is that I end up in mental health care, and my father just has a morning visit from a neighbour- and ends up not taking his meds, falling, not eating - and ending up in more permanent medical care.

My advice? Refuse to take him home. Which isn't actually about him, it's refusing the current arrangements. Fight and fight until you get in writing a commitment from the HSE re carers and public health nurse visits, and an occupational therapist. Tell your family that you're on the edge and can't cope any more. You may love your father far more than I do mine, but any love you feel doesn't mean that you should ruin your life for him. Or that he can choose to refuse outside help 'for him', which really involves tasks that have to be done by someone - HSE or outside carers mean that those tasks don't have to be done by you though. And if he refuses that? My current thoughts regarding my father is that if he refuses outside help, then he'll have to go to nursing home. It will be of course 'his decision', but I'll have to be - in his eyes at least - a cruel, heartless and unfeeling daughter for that to happen. Ah sure why don't I just pile more guilt on myself, and pay my counsellor more. But of course politically correctly, woo hoo for it being 'his decision'. 

I wish you so well. I hope you can try to fight to get the help that you undoubtedly need. And make no mistake, it unfortunately is a fight.

Ghekko

My heart goes out to you. Whatever about refusing nursing home care at this point you should just go ahead and organise home care/home help. We had no qualms about bed blocking in order to move things along in getting fair deal and nursing home place sorted for our dad. None of us was going to be carer or have him live with us. He was agreeable to the nursing home idea though, which was a blessed relief. While he didn't want strangers in the house before he went to hospital/nursing home, he had no choice. It was organised and he was told about it. They were of little use to him anyway hence the reason he ended up in the home. He needed way more care than an hour a day, which was all that was given. I used to focus on the lack of parenting from him, the alcoholic side of him, in order to alleviate any guilt I may have felt. We did what we could in a crap situation. But none of us were going to be made feel guilty for not taking on a role which would have ended up with resentment and probably fall out between siblings too. While your fathers wishes can be heard, it's not acceptable for him to refuse all options. So go ahead and organise home help, and most importantly a meet up with friends, and have your sister take over for those evenings out. You're a saint for putting up with him imo!

Emme

AnothersView wrote: »

<Snip> There is really no need to quote such a lengthy post.

Thank you for such a good description of the dark side of caring. It might open some people's eyes here.

Do you and your sister care for your father 50:50 or do you do the majority of it? If you do the majority of it try to get your sister to do more if he likes her so much.

You seem to be in a very bad place mentally and if you have to continue as you are you might be at risk of a physical or mental breakdown. It is not my place to say this to you but it seems to me that your father is enjoying your suffering and likes sabotaging your life. If your counsellor hasn't told you about it already check out narcissistic parents, scapegoats and golden children. Narcissists use guilt as a way of keeping those around them close doing their bidding.

It is sad that the only option open to the OP and others seeking help with caring is bedblocking.

shesty

Anothersview, that is so well said.
I have seen it with other family members although thankfully I've not had to experience it.The system is failing everyone so badly, there needs to be a step-down care system put in place.....somewhere elderly people can stay that is neither a full hospital or a nursing home, while recuperating after a hospital stay....so while their situation is being sorted out, they are not blocking critical hospital beds.

My heart goes out to everyone in this situation while equally acknowledging that who knows, it could be me in the future....both as a carer and as an elderly person.It's awful and no legislation will right it, it needs investment money, a coherent strategy and bricks, mortar, staff and feet on the ground, as usual.

Skibunny77

AnothersView wrote: »

I hate it. I hate it so much that words can't describe it. I actually don't care any more if he finds it demeaning. However, I find it very demeaning, and taking over my life. I've had to cut my hours at work, I never make arrangements to meet friends anymore (if I tell him that say I can't do Thursday week, don't you know there'll be a 'crisis' that day). I resent him. I can't understand how he appreciates none of the sacrifices I've made, and just rants and criticises.



I started counselling. Not because I can't deal with him being sick. Because I can't cope with being his part time carer anymore, and I want out. How can I tell him that though? He hasn't been a bad father. He hasn't been a very good one either though. Basically if I say ENOUGH, then his worst nightmares happen: 'strangers' in the house, or else a nursing home. Do I value my life and mental well being above his 'worst nightmare' happening. I don't know. I don't know if I've reached rock bottom enough to say a big yes to that. The guilt involved is huge. And my father piles on the guilt too. Sometimes I just want to go somewhere isolated and scream.


I don't know what to do. But I sure as hell know that I cannot keep doing what I'm doing, or I'll have a breakdown. I understand why a poster said that it is abhorrent having a 'bed blocker' parent. But the next time my father is hospitalised, that's what I'm going to do. I've seen enough of the ****ty system to know that's the only way to get any help.

Ideal poster here Your story is so so common, I have witnessed older people abusing and manipulating carers in many ways and it is a terrible soul destroying place to be - your post also sums up my main point. The system is blamed because you feel guilty about telling your father you can't do this anymore. That you don't want to do it, that you have reached your limits. Carers often avoid the conversation, the hospital/HSE is then expected to do something the family themselves can't do and the system itself legally can't do - force care on an older person or convince them to accept it.

Every day when carers tell me they have reached their limits and want their parent to go into nursing home care /accept home care, my first question is does your parent know that? What have you told them? Nine times out of ten that conversation hasn't taken place and people expect doctors and nurses to have some miraculous ability to transform their parent's thoughts, attitudes and beliefs. So I figure out ways to help the carer have that conversation. Hospitals are not prisons - they have NO authority to detain someone who has capacity and wishes to leave, absolutely none. Sage is an advocacy service that actively works with older people around a range of rights, including their right to leave hospital and to control who enters their own home!

I am the first person to complain about the horrors of the HSE failing to provide families about information on accessing services but this thread isn't about that. The Op is looking for someone to convince her father to accept care.

It starts with her telling him she can't do it anymore. Those conversations are hard and uncomfortable for the carer but that isn't a reason not to have them. It gives professionals the opportunity to reinforce the carers decision and give the older person their options to consider.

Put yourself in an older person's shoes. If your son/daughter reached their limits, who would you want to hear it from? How would you want to hear it? Older people are capable of making judgments and hearing difficult information! Patients will often look for practical solutions themselves, once they know the carer is no longer prepared to care. I have had older people insist on going home and once they realize they can't cope without the carer, quickly return to hospital - but are then willing to enter nursing home care on their terms, which alleviates guilt all around.

I hope you read this in the spirit in which it is written. This isn't ideal world posting, this is my everyday experience, based on many years in the hospital. Believe it or not, I have fantastic relationships with carers and older people, many of whom remain in touch with me, or look for advice long after discharge. Caring is a choice - the hospital need to hear that certainly but so too does the older person.

Finally, home care package funding has been in place all year. Ask for a care needs assessment - however the package really only supports those who are enjoying caring as three quick visits a day still leave the vast bulk of care to the carer.

ShaShaBear

Skibunny77 wrote: »

Put yourself in an older person's shoes. If your son/daughter reached their limits, who would you want to hear it from? How would you want to hear it? Older people are capable of making judgments and hearing difficult information! Patients will often look for practical solutions themselves, once they know the carer is no longer prepared to care. I have had older people insist on going home and once they realize they can't cope without the carer, quickly return to hospital - but are then willing to enter nursing home care on their terms, which alleviates guilt all around.

While I agree in general that you should, of course, discuss it with the person needing care, in this particular case I wouldn't be too keen on informing an emotionally manipulative and borderline abusive parent that they were succeeding in wearing me down and making me mentally suffer. But that's just me.

lenan

You need to decide what it is that you want,
Do you feel it's time for your father went into a care home
Do you want more support from family members, and what support that is (ie come and stay overnight, a couple of hours etc)
Respite (basically non existent in certain parts of the country)
Home help
Day centres

When you've decided then you need to tell your father, siblings and/or professionals.
But you will need to be very CLEAR and DIRECT everyone else will have their own agenda and will try and get the situation to continue as it, this suits everyone just not you.

Carers association may be able to offer you practical help.

I really wish you all the best, please do what is right for you as from what I can see from your post nobody is thinking of you.

Skibunny77

lenan wrote: »

You need to decide what it is that you want,
Do you feel it's time for your father went into a care home.
When you've decided then you need to tell your father, siblings and/or professionals.

I'm sorry this advice is not useful. Under Fair Deal legislation, the person entering nursing home care must be assessed by a specialist in geriatric medicine and must agree to go into nursing home care of their own free will, without coercion or undue influence.

The person can choose to refuse nursing home care even if doing so places them at serious risk of harm in their own home/in the community.

No family member or professional can force an older person into a nursing home (thankfully). This is the law.

Skibunny77

ShaShaBear wrote: »

While I agree in general that you should, of course, discuss it with the person needing care, in this particular case I wouldn't be too keen on informing an emotionally manipulative and borderline abusive parent that they were succeeding in wearing me down and making me mentally suffer. But that's just me.

I understand that and have on occasion, had to tell an older person that their carer has told us they are unable to continue to care for them as the carer has been unwilling/unable to have the conversation. More regularly I sit in with a carer and help them have the conversation.

Emme

Skibunny77 wrote: »

I understand that and have on occasion, had to tell an older person that their carer has told us they are unable to continue to care for them as the carer has been unwilling/unable to have the conversation. More regularly I sit in with a carer and help them have the conversation.

Do you do anything to put help in place for the carer? Unless you've had to deal directly with a narcissistic manipulative parent you have no idea how difficult it is for the person who has to care for them. I know of people who had nervous breakdowns because of the stress of caring. Health professionals don't care and don't want to help if they can get away with it.

Skibunny77

Emme wrote: »

Do you do anything to put help in place for the carer? Unless you've had to deal directly with a narcissistic manipulative parent you have no idea how difficult it is for the person who has to care for them. I know of people who had nervous breakdowns because of the stress of caring. Health professionals don't care and don't want to help if they can get away with it.

Emme, you don't know me but clearly have decided that I don't help carers or care about helping them- despite the fact that I said I have really good relationships with them, and am often contacted for full up advice, not to mention hundreds of lovely cards and letters I have received over the years from them. You also don't know anything about me or the personalities in my life.

To answer your question, I regularly refer carers to counselling services, provide counselling, refer them to community services and carer support agencies, advocate with the consultants around the patients needs, run carer support groups and I work dozen of free hours per month so that I can meet family members at times that suit them. I have been a carer - for one darling and one challenging person with mental health and behavioural difficulties.

You have continuously taken my reference to the actual law of the land as a sign that I don't care or that I'm wrong. The reality is that much of the well meaning advice given on this thread if followed, would breach the law and simply won't be followed by the hospital.

I'm sorry your experiences of the Health system has been poor but that appears to be clouding your interpretation of everything I post. The reality is that even narcissists are entitled to make their own decisions about their own care. What if someone deems you to be narcissistic in the future? Should you lose your ability to make your own choices?!

I find it fascinating that in a country where so many groups were shuffled off to institutions against their will, we are still in 2017 discussing forcing people to stay in an institution against their will. The carer can leave the situation. I see them do it every week.

I don't have anything else to add to this thread. I wish the OP well, in finding a new role in life as her current one is clearly making her deeply unhappy.