Feeling very alone

[emz_33]

hi all,

Not sure why I'm on here as this is mainly about dementia, I'm care for my mum who has dementia and my sister who has Aspergers, last few weeks I've been really ill, was admitted to hospital couple weeks ago for a pain in my left side which the doctor didn't know what it was. Been on a course of anti boctic which didn't clear my infection up now on amother course, been told it's possibly diverticulitis, and need to be on a bland diet, finding that anything I eat, I'm either sick or have bad tummy pains. I have very little energy. Mum and sister can't go into respite as both have extreme aneixty issues, can't go into hospital as the carers emgengecy scheme that I thought I was on, turns out I'm not, got a scan booked for sept, don't think I can't carry on feeling this exhausted and caring for tow people as well. Asked family for some help but they are all too busy with work and kids to even spare me 30minutes to have a bath. Tried to contact social worker but she's on holiday and thrn leaving so the case will be handed over to someone else, who won't understand the situation here. Plus I'm covering night shifts for my mum too fri sat sun, need some engery from somewhere. I am normally able to cope being unwell, but this diverticulitis has knocked me for six... It's so hard to try and get things in perspective when it feels like your in a tornado things spiralling out of control, tried making list too of things that I need to do but it go too long, if only I could sort my meals out at least I might feel a bit better, having the engery to do it is a whole different ball game. Anyways sorry to moan. Regards

 

[triumph25]

You need never feel alone with TP.

There's always someone here to listen to your woes.

Firstly, it's no wonder that you feel exhausted, because you are exhausted. I only have my OH to care for I couldn't possibly cope with 2!

You really need to get onto the Social Services for your area again , and I'm afraid you need to kick up a bit, sometimes that's the only way you get anything done. You desperately need some respite, and whilst your mum & sister may get very anxious, u will be no good to either of them or yourself, if you get so low that you cannot function.

I don't know what facilities are available in your area, but even if they just went to a day centre for a bit it would give you some rest, and would Break them in gently to respite as it were.

My OH goes once a week, and he hates it and he cries every time, accusing me of just dumping or abandoning him, but when I go to pick him up he's been fine and has had a good time. You just have to steel yourself to do it.

I don't know if any of this is helpful to you, but really just wanted you to know there's someone there thinking of you!

I do hope you get something sorted out soon so you can start to feel better.

 

[theunknown]

You're on here because you're looking for understanding of how you're feeling. No-one can put themselves in your place (because we're all individuals, with unique experiences), but there are many on here who can empathise. When life feels ****, look to others who understand the heartache x

 

[triumph25]

Sorry, forgot to ask, but have you had/when was your last carers assessment?

You are entitled to at least one a year, and things can change/ deteriorate quite quickly with issues of this kind and you may be able to get another.

Remember a carers assessment is about YOUR needs. How being a carer is affecting YOUR health/life etc.

Social Services would have no option but to step in if you were taken to hospital, Carers Emergency Scheme or no.

So I'd get into them and get yourself an updated carers assessment ASAP!

 

[Grannie G]

Hello emz

Mum and sister can't go into respite as both have extreme aneixty issues,

What happened when you were hospitalised and was too ill to take the responsibility for care?

I understand how protective you are being of your mother and sister but it is obviously seriously affecting your own health.

I would phone emergency social services, say you have responsibility for two very vulnerable adults and because of your own state of health are all at risk.

 

[Shedrech]

Morning emz_33 - I hope you managed to sleep last night.
I'll be blunt - I'm worried about you
The tone of this post is very different from your previous posts
I don't know how much support you have - carers? in how often? to do what? cleaner? befriender? - but you really do need more.
You say you are covering 3 nights - that is a mighty task especially if you are ill, and even more so if you usually do the care in the day as well - which implies you do have some other support usually at night? And other family are not appreciating the gravity of your circumstances.
However well you have supported both your sister and mother so far, and however much you feel you are the (only) one who can understand and cope with their needs -- you clearly must get more help.
If you fold what happens then?
Actually, as triumph25 said, SS would have to step in to care for your sister and mother - and you would be in hospital, so have no choice but to step back.
Even if it's just 'for now' take Grannie G's advice and get on to SS TODAY! For your own good, to be able to continue your support, you need to get well!
And then, maybe it's time to realise that no-one is able to do what you do alone - push for some respite/day care and you yourself accept that otherS may be able to cope with your sister and mother - not in the way you do (as their daughter and sister you are irreplaceable) but in a competent, professional manner which will send them home to you with all 3 of you refreshed from having some time to yourselves.
You said in a previous post that 'you have no life; your family are your life' - it's a lovely sentiment but it's not good enough - you need some of your life to be for you (looks like the wider circle of your family are depending on the fact that you will sacrifice everything so they give nothing) - and you certainly MUST have enough of your life to take care of your own health.
So again - call the Alz Society, call Admiral Nurses, call your GP, call their GP - call SS TODAY.

If I've spoken too strongly ... just ignore

 

[emz_33]

Hi, thanks for reading my moan.

Caring for two isn't really that bad when we have good days which is fairly often, your right I am tired, did manage to get a half an hour nap this afternoon. I've tried ringing social services, didn't get very far. My mum has already visited a day centre, but because of her phycois then deemed to be unable to mange her on a one to one basis, as there's glass all round, I've looked at other places that she might be able to go but they are all the same, not enough staff to give her one on one support. As for my sister social services think that she more capable than she is. She is unable to most things without me either doing it for her or constantly prompting her all day. Thanks so very much for your comment, I'm finishing the anti bocitcs in a few days so hopefully I should be better soon.

There's always someone here to listen to your woes.

Firstly, it's no wonder that you feel exhausted, because you are exhausted. I only have my OH to care for I couldn't possibly cope with 2!

You really need to get onto the Social Services for your area again , and I'm afraid you need to kick up a bit, sometimes that's the only way you get anything done. You desperately need some respite, and whilst your mum & sister may get very anxious, u will be no good to either of them or yourself, if you get so low that you cannot function.

I don't know what facilities are available in your area, but even if they just went to a day centre for a bit it would give you some rest, and would Break them in gently to respite as it were.

My OH goes once a week, and he hates it and he cries every time, accusing me of just dumping or abandoning him, but when I go to pick him up he's been fine and has had a good time. You just have to steel yourself to do it.

I don't know if any of this is helpful to you, but really just wanted you to know there's someone there thinking of you!

I do hope you get something sorted out soon so you can start to feel better.[/QUOTE]

 

[emz_33]

You're on here because you're looking for understanding of how you're feeling. No-one can put themselves in your place (because we're all individuals, with unique experiences), but there are many on here who can empathise. When life feels ****, look to others who understand the heartache x

Your so right, I've been alone doing this for years now and no one seems to get me, odd phrase, life has been **** for some time really still trying to sort it out and not get too stressed about doing it. Sometimes that very hard when your banging her head against a brick wall constantly.

 

[emz_33]

Sorry, forgot to ask, but have you had/when was your last carers assessment?

You are entitled to at least one a year, and things can change/ deteriorate quite quickly with issues of this kind and you may be able to get another.

Remember a carers assessment is about YOUR needs. How being a carer is affecting YOUR health/life etc.

Social Services would have no option but to step in if you were taken to hospital, Carers Emergency Scheme or no.

So I'd get into them and get yourself an updated carers assessment ASAP!

Well that a story in its self, I had a carers assessment 2 years ago, then when is ran out expired asked for another one, I was told that due to my mum bring in hospital at the time I was unable to get it, and apparently I don't put in enough hours for me to get it for my sister, so I chased it by in February they came out to do it, in that I wasn't asked about the emergency scheme, and because she it changed providers, we slipped throu the net, so when I was admitted to hospital I google it and found out that it had changed, when I rang the new provider for the ES they told me I wasn't covered so to speak, so I had no choice but to go against consultant medical advices who wanted to keep me in for tests there would of been none at home after 7am the following morning, so he eventually gave me some anti bocitcs and discharged me at half past 1 the Tuesday morning. I had w phone from the assessor I've been trying to ring her and the office all day even emailed and text but no reply as yet!

 

[emz_33]

What happened when you were hospitalised and was too ill to take the responsibility for care?

I understand how protective you are being of your mother and sister but it is obviously seriously affecting your own health.

I would phone emergency social services, say you have responsibility for two very vulnerable adults and because of your own state of health are all at risk.

I'd had a pain in my side for 9 days, was treated to for uti, that cleared up but still had this pain, whatever I did just wouldn't go away, so when back to the doctors, they were unable to tell what was wrong but could feel the swelling in my left side, told me to go to a and e, so had to arrange a friend to come and do mums and sister mess prompt sister to shower and help mum with her personal care too, the wait till 10pm for the night carer for my mum to arrived. Well diverticula is related to stress, and other things too. I'm trying to sort something out for a day or so I can sleep...well try to.. Thanks for your comments much appreciated.

 

[emz_33]

Hi Shedrech, sorry to its taken me so long to get back to you, I did a bit, mum got infection so she was screaming a little last night, I'm just tired I think and stressed, been quite a few months of hell. How I'm still standing to beyond me. I do have carers in when they aren't sick or on holiday, I have 7 night care and 9 hours a week respite that just form my mum, sister I get nothing so I'm constantly caring apart during her day, my own time is at night when I have a carer in, which over theast two moths I've been covering two to three nights a weeks, this week it's three starting tonight have a carer in from Monday to Friday next week. Unfortunately this is where it will get a tad confusing, my mum was in hospital for nine months just to get her dementia diagnosed( that's a another story) due to the social worker being an cow, my sisters and I came into some money our dad died, the money was quite a lot, so we said that we could pay for mums carer for one month until the social worker got the funding through panel, well I'm still waiting and still paying for the care mum gets, she's been home 5 moths now and we pay on average over a grand a week, so I'm very worried that if the funding from so so services doesn't come through soon, I'm going to be doing all of it. So putting extra in seems like a good idea but I need to keep back some of the money both my sister and I have. I tired to contact social worker a number of times but it's banging my head against brick wall. Both the aneixty for them would be extreme, I'm trying to look into getting some help with family for a couple of days.ive spoken to dementia worker today she going to help with the ES. As for manning both there aneixty I know that carers would struggle mum has a infection and she was screaming for three hours carer shouted at her which made her worse, so my three hours out didn't seem to have existed.

Thank you for your comments it's really nice warm feeling that others are out there and can understand shays going on, I'm stuck between a rock and a hard place or at least that's who it feels.

Most kindest regards

Morning emz_33 - I hope you managed to sleep last night.
I'll be blunt - I'm worried about you
The tone of this post is very different from your previous posts
I don't know how much support you have - carers? in how often? to do what? cleaner? befriender? - but you really do need more.
You say you are covering 3 nights - that is a mighty task especially if you are ill, and even more so if you usually do the care in the day as well - which implies you do have some other support usually at night? And other family are not appreciating the gravity of your circumstances.
However well you have supported both your sister and mother so far, and however much you feel you are the (only) one who can understand and cope with their needs -- you clearly must get more help.
If you fold what happens then?
Actually, as triumph25 said, SS would have to step in to care for your sister and mother - and you would be in hospital, so have no choice but to step back.
Even if it's just 'for now' take Grannie G's advice and get on to SS TODAY! For your own good, to be able to continue your support, you need to get well!
And then, maybe it's time to realise that no-one is able to do what you do alone - push for some respite/day care and you yourself accept that otherS may be able to cope with your sister and mother - not in the way you do (as their daughter and sister you are irreplaceable) but in a competent, professional manner which will send them home to you with all 3 of you refreshed from having some time to yourselves.
You said in a previous post that 'you have no life; your family are your life' - it's a lovely sentiment but it's not good enough - you need some of your life to be for you (looks like the wider circle of your family are depending on the fact that you will sacrifice everything so they give nothing) - and you certainly MUST have enough of your life to take care of your own health.
So again - call the Alz Society, call Admiral Nurses, call your GP, call their GP - call SS TODAY.

If I've spoken too strongly ... just ignore