Struggling to cope with the carers role

[emmaec]

This is my first time posting - it's a bit of a rant sorry..

I've been looking after my dad who has frontal lobe dementia for the last 6 months. It's a hard situation because before I took over the caring role my dad hasn't been in my life since I was 16. I'm 24 now and all of a sudden I've landed in this role without any warning..
I suffer with bipolar (I have major depressive episodes which atm can't be controlled by medication), severe anxiety which triggers agoraphobia and an eating disorder along with a few other mental health conditions that link in with those. I was struggling with all of this before my dad came back into my life and now all of a sudden I'm expected to be able to just pretend my illness's have disappeared and be able to take on my dad's life even though I'm struggling to cope with my own.
Yesterday I broke. I got to the point where I rang his social worker and said I can't care for him anymore. I feel awful today though and I know it isn't something I can just drop because I care too much and even if I didn't there is literally no one else family wise willing to help me - we're not a close family and I have had no contact with the family before this for years because of past issues I separated myself from them for my own sanity and peace, I can't turn to them for help and support, we're not that kind of 'family.'
I've tried to get as much support as I can off social services etc but there isn't much in my area and im getting all the help that I can from them.
I do really appreciate what's been put in place - carers for meds and a day centre twice a week, it does help and give me a little bit of a break but the rest of the time it's me that does everything. My dad has got very attached and he needs me to do everything for him. I do all his housework, shopping, keeping him company, taking him out, all the official things including forms and getting him to all appointments and basically everything that comes up. I don't drive and he lives a 40 minute walk from me so that hour and a half walking to and from him everyday takes its toll too, He will not leave his flat to go and do anything unless I'm with him. Latley I've had to give myself 'days off' because of the amount my own mental health has deteriorated the last few months especially. But my dad has meltdowns, if he doesn't see me he can't cope, on days I don't see him I'm getting up to 60 phone calls a day...
My dad's life has consumed mine, last year I had just started therapy for my own mental health after a two year waiting list but got discharged 2 months after my dad came back into my life because I couldn't engage or concentrate on my own problems.
I know this sounds like im feeling very sorry for myself, I probably am but I really don't feel like I'm coping and even though I'm begging professionals to help me it's not getting me anywhere.
He is still physically well and I don't think he is that far advanced that he needs to be in a care home and I can't do it to him, he needs me right now, he's doing okay (with my help,) It's me thats not...
How do you guys cope with this? I'm not sure what I'm looking for by posting this but any help or advice would be really appreciated. I don't have a clue what I'm doing and there is no one around me that can or is willing to help family wise.

 

[Grannie G]

Hello emmaec

and now all of a sudden I'm expected to be able to just pretend my illness's have disappeared and be able to take on my dad's life even though I'm struggling to cope with my own.

Who is expecting you to take on the responsibility for your dad`s care? You do not have to especially if it will be detrimental to your own health.

You could be helped by some experienced advice about what is available for both you and your dad and I suggest you contact the Alzheimer`s Society National Dementia Helpline.

https://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline

You can contact our helpline by calling 0300 222 1122 or by email at helpline@alzheimers.org.uk.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[Agzy]

So glad GannyG got her answer in first as I was going to advise the helpline as your situation sounds quite desperate, and how this affects your own health is the paramount feature to me. It is the the old question, "Who cares for the carer?" Please take the advice and speak to those most qualified to not only see and appreciate your plight, but they may be able to help alleviate it. Good luck to you and your dad.

 

[emmaec]

Thank you. I will try that helpline a bit later on today so see what advice I can get from them.
I have been in contact with the alzheimer's society in my area but I didn't really get any help from them apart from a referral for an alzheimer's sit once a week (I'm not dismissing that as 'only' If you know what I mean?) I do appreciate that, the referral went in in November last year and im still chasing that up regularly because it hasn't gone through yet.
Social services are a nightmare, his social worker is aware of my past, mine and dad's relationship past and presents and my own mh problems from the carers assessment but I still seem to have been left alone to deal with it. I've asked for extra support, maybe a support worker for him to help me with the official form filling, phonecalls etc but was told there isn't anything.

 

[canary]

Hello emmaec and welcome to Talking Point.
No, you dont sound a bit like you are just sorry for yourself, my husband has frontal lobe dementia (FTD) and I know how hard it can be. FTD in the early stages is very different from Alzheimers as the frontal lobe controls emotions, behaviours and decision making.
You have problems of your own and do not live within easy distance of your dad, which makes it all the more hard. I think you did the right thing to contact his SW, but all the while you are on the scene, doing things for your dad they will think that everything is OK.

I think that you should sit down, think about things and decide what you can, and what you cannot, do for your dad. Then you need to get back to Social (Adult) Services and say that you cannot cope. Tell them what he needs that you can no longer do. I would recommend that you write or email so that there is a paper trail - its harder to fob you off then. I would also send a copy of this to his GP too, so that she/he knows what is happening too. Make your decision a line in the sand and stick to it. It is very difficult not to get sucked back and you will probably have to keep on at SS. It may also, unfortunately take a crisis before they take notice. What would happen, for example, if you went away on holiday?

 

[Grannie G]

I doubt the Helpline is open today emma but may be open tomorrow. I`ll try to find out for you.

Age Concern are also known to be helpful, but also not on a Bank Holiday.

I`m sorry are being kept waiting for so long . I`m afraid you may need to keep reminding them where you are.

 

[emmaec]

Hello emmaec and welcome to Talking Point.
No, you dont sound a bit like you are just sorry for yourself, my husband has frontal lobe dementia (FTD) and I know how hard it can be. FTD in the early stages is very different from Alzheimers as the frontal lobe controls emotions, behaviours and decision making.
You have problems of your own and do not live within easy distance of your dad, which makes it all the more hard. I think you did the right thing to contact his SW, but all the while you are on the scene, doing things for your dad they will think that everything is OK.

I think that you should sit down, think about things and decide what you can, and what you cannot, do for your dad. Then you need to get back to Social (Adult) Services and say that you cannot cope. Tell them what he needs that you can no longer do. I would recommend that you write or email so that there is a paper trail - its harder to fob you off then. I would also send a copy of this to his GP too, so that she/he knows what is happening too. Make your decision a line in the sand and stick to it. It is very difficult not to get sucked back and you will probably have to keep on at SS. It may also, unfortunately take a crisis before they take notice. What would happen, for example, if you went away on holiday?

Thanks canary,
It is full on isn't it..
Okay thank you, I will do that over the weekend and will call his sw on Tuesday after the bank holiday. Im not even sure what I want done by them I just know I need help.
I couldn't even think about a holiday, if I wasn't in the picture, as far as I'm aware he would just be left too it with the carers still visiting daily to administer his medications x

 

[emmaec]

I doubt the Helpline is open today emma but may be open tomorrow. I`ll try to find out for you.

Age Concern are also known to be helpful, but also not on a Bank Holiday.

I`m sorry are being kept waiting for so long . I`m afraid you may need to keep reminding them where you are.

Okay, if not I'll ring first thing Tuesday when offices are back to normal.
Thank you

 

[canary]

I couldn't even think about a holiday, if I wasn't in the picture, as far as I'm aware he would just be left too it with the carers still visiting daily to administer his medications x

Just so.........

Everyone is entitled to a holiday. Perhaps you aught to go (having given SS warning first, of course) so that they see the problems?

Also, you sound like you are close to full-on carers breakdown. What would happen if you ended up in hospital? I suspect that you need a break.

 

[Lawson58]

Welcome to TP and I am so sorry that you find yourself in such a dreadful situation.

I don't live in UK so I can't offer you any practical help or advice but I am concerned about where you find yourself at this particular time.

You are very young to have had the role of a carer thrust upon you in such a way. Most of us grow into the role of a carer over time as our relative or loved one gradually deteriorates. No one can really prepare you for how exhausting physically, emotionally and mentally caring can be and for some it can be a rewarding experience but others really struggle. As your dad is physically well, the role for you could be extended over a long period of time and I feel that for you, this is too big an ask.

You have numerous and ongoing health issues of your own that you are trying to deal with and can't because of your commitment to your dad. And I don't think you are doing the right thing for your self. If you have a breakdown, someone else is going to have to care for your dad so it's time for you to reconsider your position.

You only have to read some of the threads on this site to know that many of us have families that are far from perfect but as much as you might want to, you should not have the sole responsibility for your dad.

Maybe it's time that you took a giant step backwards and let them get on with it for a change. You stepped away once to save your own peace and sanity and I think that you need to do the same with your dad. If you fell and broke your leg and couldn't care for your dad, who would?

I hope you don't think I am being harsh or judgemental because I am really very concerned for you, this will destroy you if you keep going in this direction. I think it's great that you are getting help and you need to remember that if you step away from the caring role for your dad, it doesn't mean that your relationship has to end. It just has to change.

I hope someone else can offer you something more helpful.

 

[emmaec]

Just so.........

Everyone is entitled to a holiday. Perhaps you aught to go (having given SS warning first, of course) so that they see the problems?

Also, you sound like you are close to full-on carers breakdown. What would happen if you ended up in hospital? I suspect that you need a break.

I'm not sure if I could do that. I would love to but I would need to know he is safe and being cared for but atm I can't guarantee that.
Unfortunately I agree with you, I'm normally very good at holding it together and it takes a lot for me to even admit I'm not coping. My own mental health team have thankfully got back involved (I'm trying to find the positives,) and are working on a long term plan for me but they need my dad's team to step up before they can help me properly..

 

[emmaec]

Welcome to TP and I am so sorry that you find yourself in such a dreadful situation.

I don't live in UK so I can't offer you any practical help or advice but I am concerned about where you find yourself at this particular time.

You are very young to have had the role of a carer thrust upon you in such a way. Most of us grow into the role of a carer over time as our relative or loved one gradually deteriorates. No one can really prepare you for how exhausting physically, emotionally and mentally caring can be and for some it can be a rewarding experience but others really struggle. As your dad is physically well, the role for you could be extended over a long period of time and I feel that for you, this is too big an ask.

You have numerous and ongoing health issues of your own that you are trying to deal with and can't because of your commitment to your dad. And I don't think you are doing the right thing for your self. If you have a breakdown, someone else is going to have to care for your dad so it's time for you to reconsider your position.

You only have to read some of the threads on this site to know that many of us have families that are far from perfect but as much as you might want to, you should not have the sole responsibility for your dad.

Maybe it's time that you took a giant step backwards and let them get on with it for a change. You stepped away once to save your own peace and sanity and I think that you need to do the same with your dad. If you fell and broke your leg and couldn't care for your dad, who would?

I hope you don't think I am being harsh or judgemental because I am really very concerned for you, this will destroy you if you keep going in this direction. I think it's great that you are getting help and you need to remember that if you step away from the caring role for your dad, it doesn't mean that your relationship has to end. It just has to change.

I hope someone else can offer you something more helpful.

Hi,
I've got to admit, this wasn't something I have ever expected especially at this age.
No I don't think you are being harsh at all, I think its what I need to hear.
Deep down I know I can't keep this up, and as you said this will probably be years and if I'm in this mess this early on that could lead to alot of problems.
It's my conscience that's keeping me doing it at the moment. Mentally and physically I can't do it but I feel awful about that so that's drives me to carry on. I think I have got as far as I can go with the full time role though, for both of our sakes not just mine..
Thanks

 

[cuppatea]

No solutions I'm afraid but sympathetic hugs. You are admirable to have stepped back in willingly to take this on but you are risking your own health. Do hope you can get help for your dad x

 

[emmaec]

No solutions I'm afraid but sympathetic hugs. You are admirable to have stepped back in willingly to take this on but you are risking your own health. Do hope you can get help for your dad x

Thank you x

 

[Grannie G]

You can ease your conscience emma by trying to ensure your dad gets the best care possible whether it`s in his own home for now or in residential care further down the line. It`s what I did for my mother and although I took on many responsibilities I didn`t take sole responsibility and got whatever help I could from Social Services.

If you are not happy with the social worker or the support you are getting from the service, make a complaint and ask for some improvement.

 

[Zana]

FTD is diffcult because A/ most services are set up with alzhiemers in mind so they dont always suit FTD patients and B/ the behaviour changes including the çlaiming 'you are now getting from your dad. I have the same with my husband , even going upstairs to get dressed or check email leads to him yellng my name every 30 seconds.

What Ive learned and it isnt very much but dont pull punches when dealing with doctors social workers etc when they ask how are things be brutally honest, if you dont they just assume you can cope.

 

[nae sporran]

Sorry Emma, was going to suggest a carers assessment and telling Social Services about your own health problems. But, if you have already done so, then there's no way they should have left you without support.
I have had my own problems with depression and needed counselling where I was advised to tell it as honestly as possible and talk about the worst days, as Zana said. Sorry, not much help.

 

[nita]

I had extreme problems with my mother's worsening illness over Christmas four years ago and I rang the emergency out of hours social worker. You may be able to get through to them via ringing the normal number for Adult Social Services at your council. It was a long holiday but they came out to me first thing on the Tuesday or Weds afterwards. Mum then went into respite at a council care home that was OK. The respite turned out to be quite a long stay as they were concerned I couldn't cope as I suffer from depression.

This is just to tell you to get on to them urgently.

 

[Spamar]

Emma, no one person has to care for another. Not even if you are related. Tell social services you will not be available and make sure you are not around.
As has been pointed out, if you get carers breakdown ( and you really don't want that, been there, got the T shirt) or even break a leg or get measles for instance, who will look after Dad then? Don't worry about your siblings, if they can't bother now, they have no comeback. Given your past/ ongoing problems, I think you would be wise to walk away.

I didn't look after my father, btw. Distance was the excuse, but he wasn't communicating either. It would have been a disaster!

 

[onlyme1]

Hello Emma. I too have bipolar disorder though the depressive episodes are my main problem as I've got older (61). My parents both have dementia and I've learned to be absolutely honest about how I'm coping. They're now in a care home together and that overwhelming feeling of responsibility and fear has largely been lifted from me. I'm still under section 117 aftercare. my gp and psychiatric team were always proactive in monitoring things and keeping us all safe. If I'd coped better as a carer maybe my parents could have remained at home longer. My mum has been there for me unconditionally through many ups, downs and sectionings and I wanted to care for her and dad forever. I'm not sure why you have to take on all this responsibility, your own care plan (if you have one) should acknowledge your carer role and effect on your mental health. Xx