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I feel so guilty but I've had enough

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
Thanks everyone, I am considering sick leave as an option. It might force SS to sit up and listen to me. Its comforting to hear that other carers have been in the same position and come out the other side!
How far can I push Social Services? I met with dad's SW yesterday. My original intention was to get Dad into respite for four weeks (done - SS are paying an amount for two weeks, which Dad tops up and I am paying for two more weeks) so I can have a complete break. Then I was going to have a chat with the Care Home Manager about Dad moving into permanent care, we sell his property and use he £40k equity to fund care. But no, it's no that simple (it's never simple where SS are involved). Because the money from the sale of his house will run out within a year, it means the SS will have to pick up the bill after that, so they have to approve Dad going into permanent care NOW. I have to refuse to care for him, then they will offer him extra care at home or a care home, but it might not be the care home he is in now which is lovely and which he likes. Because he has no night care needs at present his SW told me they are more likely to try and care for him in his own home. Our local authority SS are millions in debt so they won't spend anything unless they really have to. I think this in unacceptable. They can't possible do everything that I do for him - shopping, cooking, cleaning, washing, taking to appointments, banking, looking after his pets.....etc.....etc......I am so angry. I want to know how far I can push them. I just can't cope anymore.
Dad's blood tests show he has internal bleeding and he needs an urgent referral to a specialist next Weds then more tests. His GP suspects some form of gastrointestinal cancer. I am so worried and all this argy bargy with SS doesn't help. I cant pay his care home fees and I cant afford to give up work but my work is suffering. I am just about holding on to sanity:). Any further advice re SS would be very helpful, thank you. I hear about some of you having to stamp and shout and scream to get what you need from them. I don't have the fight for that anymore, I've already tried it and lost. Why should I have to be pushed into a mental breakdown to get the help I am entitled to? Its a scandal.
Jane:(
 

SueShell

Registered User
Sep 13, 2012
395
Orpington
Jane - you pretty much have to get tough and tell SS you are not prepared to care for him anymore and please tell me who I need to give his keys to! Its terrible to have to resort to such extremes but that's what I had to do so they really knew that I meant business. I'm sure I would have ended up in hospital myself if I hadn't done it.

Just as a footnote I damaged my back to such an extreme that for the first time in my life I rang 999 for myself. They gave me a morphine injection in A and E. When I got home in the early hours I couldn't lie down or sit down because the pain was so intense I was screaming. In severe pain unable to care for myself let alone Mum when I rang SS as I hadn't slept for two days they only offered a carer for Mums breakfast at 11am and a carer for her lunch at 2.45pm just for the weekend. They said it was short notice! Well, I didn't have my crystal ball handy to foresee I was going to be incapacitated. I couldn't bend down to put her c!othes on her or do much of anything. You are just a faceless number to them so you have to make a nuisance of yourself in order to get help. It shouldn't have to be like this but sadly it is. Its a struggle because like you, I was so stressed and exhausted you don't have the energy to fight but the system being what it is, that's exactly what you have to do. If you go down then who'd look after your Dad then? As other TP'ers have told me, you have to think of your own health. Take care, Sue xx
 

RedLou

Registered User
Jul 30, 2014
1,162
Jane - I don't have any advice on SS but I do have some advice, reading your distress.
It is quite simple. You can't care for him as you have been. If SS try to care for him at home, let the journey take its course. As long as you step up to the plate, they will take advantage. Of course, you may feel the care package helps and that you want to do his finances and his pets and leave the rest to them, say, and if so do it with CLEAR parameters over which you won't step. They come to you and ask you to do (or assume you will do) a/b/c/ which you find unacceptable, tell them you're not helping. They can't force you. There is no reason for you to feel guilty.
As to your father's health - I was told my father was dying a few months ago because of a gastrointestinal bleed. Suffice to say, he pulled through. GPs really should not add to the stress we go through with their best-guesses.
Stay strong. Stay calm. Hold your head up high. You've done your best and your best is good enough.
 

patsy56

Registered User
Jan 14, 2015
839
Fife Scotland
Hi all
I'm posting this, but not really looking for advice, I suppose I am just making a statement here to get it off my chest.

I have let my Dad down:(

After 'flu, a cold/chest infection and a kidney infection that landed me in hospital for two days all in the space of six weeks, plus carers who don't do what they are supposed to do for Dad on a fairly regular basis, leaving him undressed and unshaved on occasions and not carrying out instructions as to medical care, plus a full time job I can't give up, plus my anxiety, panic attacks, sleeplessness and a social services that just make things so difficult, I admit defeat. I can't take care of him anymore and I have no other family to help. I have no oil in my lamp anymore and life just isn't worth living like this.

He has moderate dementia and can't do much for himself. He is at home on his own and lonely since Mum died. I am too weak to cope anymore. I just feel really awful. I love him very much but he is taking up so much time and I am so upset to see him like this; three doctors appointments this week alone, food shopping, clothes washing, ironing, banking, bill paying, feeding his cats every day and tending to their vet care, fighting with SS to get the day care his GP has recommended but which they refuse to fund....... I have failed him because I can't do it anymore. I have to have the discussion with him about residential care. And I feel really guilty and bad and he isn't self funding so SS will be involved, which will make things much more complicated and stressful than they really need to be.

Sorry about posting this. Don't know why I am doing it really, perhaps I am hoping that someone will say 'there, there, it's not that bad' and then I'll stop feeling sorry for myself and pull myself together.

It seems a bit self indulgent to whine like this but I am tired of being tearful and upset all the time.
Don't feel guilty, we all do, and I am in much the same boat as you, but I live 50miles away and my husband has Parkinson's I also work but went parttime to care for him. As they say who cares for the cares, we are here for you
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
Jane - you pretty much have to get tough and tell SS you are not prepared to care for him anymore and please tell me who I need to give his keys to! Its terrible to have to resort to such extremes but that's what I had to do so they really knew that I meant business. I'm sure I would have ended up in hospital myself if I hadn't done it.

Just as a footnote I damaged my back to such an extreme that for the first time in my life I rang 999 for myself. They gave me a morphine injection in A and E. When I got home in the early hours I couldn't lie down or sit down because the pain was so intense I was screaming. In severe pain unable to care for myself let alone Mum when I rang SS as I hadn't slept for two days they only offered a carer for Mums breakfast at 11am and a carer for her lunch at 2.45pm just for the weekend. They said it was short notice! Well, I didn't have my crystal ball handy to foresee I was going to be incapacitated. I couldn't bend down to put her c!othes on her or do much of anything. You are just a faceless number to them so you have to make a nuisance of yourself in order to get help. It shouldn't have to be like this but sadly it is. Its a struggle because like you, I was so stressed and exhausted you don't have the energy to fight but the system being what it is, that's exactly what you have to do. If you go down then who'd look after your Dad then? As other TP'ers have told me, you have to think of your own health. Take care, Sue xx
I am so sorry to hear about your back problem Sue. Being in terrible pain is bad enough, but to have to worry about your Mum being taken care of when you are incapacitated because you can't trust Social Services is just awful. Actually Dad's SW told me in confidence that it's the carers who shout the loudest who get help. So that is what I have to do. Thanks for your advice, Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
Don't feel guilty, we all do, and I am in much the same boat as you, but I live 50miles away and my husband has Parkinson's I also work but went parttime to care for him. As they say who cares for the cares, we are here for you
Thank you, Patsy, for you words of support. I can appreciate how you feel, just being torn between your caring responsibilities and your work. I get so annoyed about the way things are set up in the UK; public sector cuts have been found by slashing the social care budget in my borough, because NHS money is ring fenced. This means that SS are millions in debt and won't pay for anything unless its an absolute crisis situation. Public sector cuts hit the poorest people in the UK, without a doubt. My Dad's crime was not saving for his retirement and we are now both suffering. The truth is, if they provided the care they should, the whole of the Social Care system would collapse. I hope you have managed to find the right balance and get some time for you. Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
Jane - I don't have any advice on SS but I do have some advice, reading your distress.
It is quite simple. You can't care for him as you have been. If SS try to care for him at home, let the journey take its course. As long as you step up to the plate, they will take advantage. Of course, you may feel the care package helps and that you want to do his finances and his pets and leave the rest to them, say, and if so do it with CLEAR parameters over which you won't step. They come to you and ask you to do (or assume you will do) a/b/c/ which you find unacceptable, tell them you're not helping. They can't force you. There is no reason for you to feel guilty.
As to your father's health - I was told my father was dying a few months ago because of a gastrointestinal bleed. Suffice to say, he pulled through. GPs really should not add to the stress we go through with their best-guesses.
Stay strong. Stay calm. Hold your head up high. You've done your best and your best is good enough.
Thanks Redlou; I have a friend who is a doctor and she told me that doctors today have to point out the worst case scenario a) for fear of being sued and b) because person-centred patient care principles mean that patients have a right to know what is happening at all times and have a right to know if there is a risk of something serious. It is comforting to know your Dad pulled through his health crisis. Mine has multiple health issues as well as dementia, so I am not so confident but I am suspending judgment until we know more. The universal message I am taking away from all you the TP'ers is that I need to be brutally firm with SS otherwise they will continue to take advantage of me to the detriment of my own health.
Thank you xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
Carridwen, there is another option. Can you take sick leave? A month of full rest maybe exactly what you need. You need respite as much as your dad. Then you can focus on being his daughter again instead of being his carer.

You have been there through thick and thin love. Take care of you too and try not to feel guilty. With 24hr care your dad may stabilise.

love quilty
Thanks Quilty, I long for a bit of peace! To potter around in my garden, grow more vegetables than I can find the time to grow now, just spend time doing nothing. I have forgotten what that was like! Wouldn't all of us carers like that? I could also do with returning to doing some exercise, I've gained weight through zooming about in the car all the time and comfort eating. Yes, I think Dad may stabilise too - I am happy for him to go into respite care because I don't trust his domiciliary carers to notice if he's deteriorating. Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
What an awful decision to have to make :(
Thinking of you oday and hoping you can get the information that you need.
(((hugs)))
Thanks Canary, I have always wanted to go to Dan Francisco on holiday but it's the right decision not to go at this time. I just hope Dad's GP will write me a letter for my travel insurance to say that it was essential I not go. He did say he thought it was the right decision on the phone.
Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
Sorry, sorry your dad is poorly and I hope GP can shed more light, sorry you feel torn, but I do feel you need your trip away if it can be managed. If you can get care in place that can deal with issues, and your dads condition allows, I think this will do you good and give you strength to carry on.

I appreciate experience with your mom makes this harder. But try to see that this is a different situation. Xx
Fozzy C, things have moved on a bit. Dad is having tests and probably a short stay in hospital. He will still be going into respite care too, so I will get a break and have peace of mind that he is being cared for 24/7 for a month. I will take him to his hospital appointments, though. We'll have the holiday at a later date and I hope I can claim on my insurance! I hear that the GP may write me a letter. He thought it was the best option that I stay to supervise my Dad's hospital visits and support him through tests. I am taking time off work to rest up and do some nice things for myself.
Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
guilt.... you should only feel guilt if u are guilty.... and you are not...so for your own sanity let it go... none of us are sitting here polishing our halos and flapping our wings... the person who suggested the hysterical email would be my response... infact be hysterical to anyone who can and should be doing their bit...because at this rate they will need to be looking after the both of you...suggest that you will be saving them money in the long run if they only have one person to care for...
so heres wishing you all the love and luck in the world with your crusade ... do not feel alone we are all with you x
Rea123, I would like a halo! Yes, I am going to start throwing my weight about. Actually, I made a formal complaint about Dads care a while back because they wouldn't pay for one extra day of daycare although it had been recommended by his doctor (he was over budget, apparently) I saw the top dog Technical Lead and as soon as I walked into the room I burst into tears! Not intentionally, I grant you, but it did throw them sideways a bit. Didn't make much difference though:( I suspec I'll have to kick up a stink, Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
You haven't let anyone down, am in a similar situation & it seems it's always one step forward, two back. By the time you've finished doing everything for the other person, there's no energy for you. But you have a right to a life too & I hope that both you and I have the drive to grab that life before too much of it is gone. The one thing I'm beginning to realise about being a carer is that if you don't look after you, no one else will. I'm still waiting for my courage to stand up for myself, I hope you've found yours.
What wise words, Zuzu72,
I hope you find your courage too. It's the pushy people who get what they want, my Dad's SW told me last week (so I am, of course, broadcasting it to the whole world). I hope she doesn't read these posts:) Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
I guess a potential shortfall of £360 pw in the not-so-distant future is something they are not prepared to consider at this stage, without exploring the other options available.

Have you looked at other CHs which do take residents at closer to the LA rate?
Hi Chemmy,

Thanks for the advice, yes, I have looked at all the other care homes in our area and they are much the same. All of them have SS allocated beds where they must take £515 a week from SS (when the average fee is £800 - £1000), but of course, that doesn't go anywhere near covering the cost of the care home fees so most of them only allocate about 5% of their beds to SS. The one that takes more SS referrals is, given a very mixed rating from the CQC. I also agree that we need to explore more options, but I am so exhausted that the thought of Dad going into a care home that is great and that he likes the look of, is the easy option and perhaps a fantasy? Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
There's no need to apologise, Jayne. Things are difficult enough, and if you're feeling poorly then of course things will seem to be much worse. Give yourself chance to recover.

You have done fantastically well to have arranged all this when you were actually at the end of your tether, well done :). I'm delighted that your dad is going into respite and that you will, at last, get a proper break.

I can't really advise you regarding the funding, or the permanent SS place, unfortunately, but I couldn't just read and run, and wanted to give you a well deserved hug. I know others more experienced than me will be along very shortly, and I'll be interested to hear their advice myself!

Again, well done, and here's that (((((hug)))))) xx
Thanks CollegeGirl xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
And isn't there a 12-week disregard on the property as well? That might help a bit.
Hi Pickles, yes there is. But SS don't regard Dad as self funding because he has less than 1 years worth of care home fees from his equity. I have to get their 'permission' for him to go into a care home.....and if I refuse to care for Dad anymore and he goes into a care home I may not have much choice about which care home, either. Thank you for your support, Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
Think we all feel for you and understand. Get all the help you can. We get respite every 3 months for mum cos we cant afford full time care home and its not enough!! But better than none! Sometimes i feel i cant go on, i have anxiety issues too and thatz wen its hardest to manage. Love to u, keep in touch and i hope things improve soon xx
Thanks Chelsea Girl, I hoe you get some relief from your anxiety too, Jane xx
 

cerridwen

Registered User
Dec 29, 2012
99
Gloucestershire
Who says you should pull yourself together? Who says you have to go on like that? You have your own life to lead and you have done the best you can. Please remember that no one has a duty of care for another human being. The state, though, does. And it seems they are letting YOU down badly.

So tomorrow morning you are going to give social services a call and say that you can't do it anymore and if they don't sort out day care or a care home TODAY, you are going to drive your dad to A&E and leave him there. That should concentrate their mind.

Are you in touch with Alzheimer's Society, Age UK or the Carers Centre? Whatever is available in your area, contact them tomorrow as well. They can put pressure on social services too. As can and should your GP.

Good luck and please don't feel bad. You have nothing to feel ashamed about. Social services should, for driving you to a carers breakdown.

Good luck. Here's a virtual (((HUG))).
Thanks Beate, yes I have access to a dementia adviser from Alzheimer's UK. She is great but overworked and it sometimes takes over a week for her to get back to me. Thanks for the hug, really appreciated, Jane xx