Social services are **** and I'm really stuck.

[VonVee]

Hi

It's been a while since I've posted, but really nothing has changed, and things are gradually getting worse for me.

My mother's dementia is deteriorating & and to be honest no gives a damn but me, I'm the only thing she's got, and I don't want to be mean but it's slowly killing me.

My son, was finally diagnosed in July after an eight year battle, with Tourettes & High Fuctioning Autism, he is 11 in October, I have a 13.5 daughter who has an attitude the size of Texas, and a husband who works 60 hours a week and who I rarely see awake as when he's not working he's in bed asleep.

I woke up today after an 16 non stop hour sleep, to say I'm exhausted is an understatement. I'm so fed up I want my life back.

Last Tuesday 1st Sept, I got a phone call at 11.20pm at night, my husband gave me the phone, and the voice on the other end said sorry for alarming you, but it's Dorset police here and we have your mother! So in half an hour I was at my mother's flat, I had to take a taxi as my husband had only been in from work at 10.30pm, and in the morning it was first day back to school for my boy, so talk about bad timing...

The police told me that she'd been missing for 4 hours, as one of her neighbours noticed her door open around 7pm, and there was no one in the flat, but she had no numbers and wardens weren't there, so didn't know what to do, anyway she was found outside a local pub in a very confused state, telling men that approached her to ask if she was alright "hiss off, I'm not into men, and you can't have me down there" YES REALLY... The land lady recognised my mother and took her in, gave her a sandwich and cuppa and called the police. Thank god!

The police called the social services out of hours service, and they told them that my mother was under there control and there was no next of kin or family, and her SW was on holiday 2 weeks, and there was no one to help, the police said i think there may be a daughter or sister we think, and the SS replied no I don't think so, so they were no help at all, in the end the police got hold of me because my mum had a life line bracelet on, and they phoned lifeline and it was them that gave my phone number to the police.

To be honest, what use are the SS, absolute ****, for a slight frail nearly 83 year old to be out on the streets at 10 & 11pm at night, it's disgusting, this shouldn't be happening should it, and the reply you get when you ask for help and support is non-existent, at the end of the day, I'm on my own here, and I just don't know what to do anymore.

I'm not being funny, but she should be in a home, but SS say that it has to be the last resort before they put them in a home, and they like them being in there own flat and living independently! That's all well and good if you've got all your faculties, but my mum doesn't, and all she does all day is sit in a chair, and ask the same old questions on a loop, she calls me her sister, and she doesn't really know what's going on, a lot of the time, she looks right through you, but SS won't have it, even though I have POA, it counts for nothing, it really doesn't because I feel I have no rights left at all, every little decision you make, you have to run through the social worker first, it's not right is it.

I'm not in a position to put her into a private home, if I was, I wouldn't be writing this! I have been thinking about re-mortgaging the house, but we'd like to move eventually so that's not an option.

I HATE dementia, it's selfish and self centered and it has no feelings at all, and it robs a person of their mind, body and soul, but not just the person who has it but for the family and people around that are dealing with it as well, I feel useless, I have no fight in me left, if I did I'd come down hard on social services, but that's only a dream at the moment I'm afraid to say.

Thanks for listening to my rant

Love hugs
Vonnie xxx

 

[Patricia Alice]

Hi Vonvee,

You need to tell Social Services exactly this because it is carer breakdown. This is what happened to us. We could cope no longer, but whilst we were still going 13 plus hours a day they will let you continue.

You have to be firm if this is how you feel. Get Social Services to put your mum in care for two weeks respite and then take it from there; this is what we had to do.

There will come a point where you cannot continue, you are entitled to a family life, but if you don't force this across to them they will not offer it. If you walked away saying enough is enough they would have to intervene.

I clashed with our social worker because it was if she was paying for funding out of her own purse, we have had to push for everything, but like I said, we could continue no longer, my family was suffering, I never saw my grandchildren because I was always with my mum, entertaining my mum, shopping for my mum, cleaning etc etc.

Good luck and if you need help, which it sounds very much like you do, do not take no for an answer.

 

[Rodelinda]

I'm afraid I don't have any answers but you must think of yourself and your own partner and children. Please do follow up PatriciaAlice's suggestion and also contact your own GP and your mother's. Your own because he or she may be able to help put some pressure onto social services to give you a break and ensure you have a carer's assessment, your mother's as they need to know how bad things are for her and again may be able to help support the case for action by SS. Do you have a local carers support service you could talk to?

It is a dreadful disease as it just eats away at so much of the person and in doing so affects their nearest and dearest in apalling ways. I can't offer help but really feel for you

 

[VonVee]

Ah thankyou Patricia

I know your right, I just feel like I've got no fight left in me anymore, I'm at the stage you were at, I've been doing this since November last year when my dad died, I just feel at a loss, and I wish I had someone to take my hand and guide me to become strong.
I know I need to do something tho.
And I will
As I have to for my kids. Xx

Hi Vonvee,

You need to tell Social Services exactly this because it is carer breakdown. This is what happened to us. We could cope no longer, but whilst we were still going 13 plus hours a day they will let you continue.

You have to be firm if this is how you feel. Get Social Services to put your mum in care for two weeks respite and then take it from there; this is what we had to do.

There will come a point where you cannot continue, you are entitled to a family life, but if you don't force this across to them they will not offer it. If you walked away saying enough is enough they would have to intervene.

I clashed with our social worker because it was if she was paying for funding out of her own purse, we have had to push for everything, but like I said, we could continue no longer, my family was suffering, I never saw my grandchildren because I was always with my mum, entertaining my mum, shopping for my mum, cleaning etc etc.

Good luck and if you need help, which it sounds very much like you do, do not take no for an answer.

 

[Patricia Alice]

Hi Vonvee,

Rodelinda is spot on, I work for a GP, and yes they can contact social services also on your behalf to push for an 'urgent' assessment because as I said above you are heading for carer breakdown and also your family and you are starting to suffer; also you can keep ringing social services yourself to push for this. You need to see your GP because you need help now.

You need to find the fight in you from somewhere Vonvee, if you keep pushing they will eventually sit up and listen, if you don't, then nothing changes for you or your mum. Whether you choose to do just a couple of weeks to recharge your batteries, or whether you think a permanent placement is needed for the longer term for your mum's wellbeing and your health, then please on Monday do something.

 

[AlsoConfused]

It'll help that the Police were involved in rescuing your Mum. I think the Police generate some kind of a case conference when they find themselves repeatedly rescuing dementia sufferers - and sometimes they can get SS to act when exhausted carers can't.

 

[Liz57]

It'll help that the Police were involved in rescuing your Mum. I think the Police generate some kind of a case conference when they find themselves repeatedly rescuing dementia sufferers - and sometimes they can get SS to act when exhausted carers can't.

I'm not going to be the only person to tell you to phone SS and phone them on their emergency number. The phrases you need to use are "vulnerable person at risk", "Duty of Care" etc. The attitude you've encountered is totally unacceptable and to say they don't know you're there - that's simply negligent which incidentally is another one of the words you should be using to them.

Please do it urgently. You, your family and your mum deserve better

 

[garnuft]

It's all well and good talking about carer breakdown...it's talked about a LOT on this forum, much more than what it feels like to have your brain, YOUR brain, broken down by dementia.

What are Social Services to do?

Whip people away at the say so of their family?

Do carers matter more than the person needing care?

It's a hard path.

Harder for the person who watches and worries?
Or for the person who is robbed by the illness?

I have myself , displaced my anger and frustration at the seeming injustice and unfairness caused by disability and illness, and have on occasion over the last 28 years, directed that anger towards Social Workers, Care Coordinators, Doctors, nurses....etc. etc.

I have come to the conclusion that anger and frustration are wasted energy.


Sent from my iPhone using Talking Point

 

[Moonflower]

It might be worth you emailing your concerns to SS. Put in writing what happened to your mum, how unsafe she is.
That way they can't say they weren't aware.
Ask the police to notify SS

Tell them that you will hold them responsible if anything happens to your mum
It sounds as if she needs full time care

 

[RedLou]

I'd also suggest putting it in writing - using the key words as suggested - and telling them you are holding them accountable should she come to harm - also copy in your MP and her MP and don't bcc - let them see what you've done.

 

[Bessieb]

I really feel for you Vonvee - have had a number of battles with SS myself over the last two years as my parents have deteriorated.
You need to be very assertive with them and insist they are failing in their duty of care to your Mother by not doing an urgent assessment. If her current SW is on holiday there will be a duty SW and I would insist that she does it. It is not you who have the legal responsibility to care for her - but they do. You are doing because you love her but they are duty bound to care and ensure she is safe. It doesn't sound like she is if she is wandering and being picked up by the Police.
In response to another post on here....yes the lives of carers do matter just as much as those that are being cared for. You have to put your interests and your family's interests on an equal footing as your Mothers and push with SS for a solution that works for all. It sounds like it's time for a residential solution for her.
Good luck with it all x

 

[looviloo]

I totally understand your frustration, and you've had a lot of very good suggestions on this thread. In your position, I would probably visit my GP as a priority, because your health is important and without it you're no good to anyone. Look after yourself. Then when you've got the energy, put your concerns in writing (or print out your message to this forum) and send it to anyone who needs to know, such as your mum's GP and Social Services. Make sure they understand ALL of the problems, including your own level of stress and your other family commitments. You are doing this in your own and your mum's best interests. It isn't easy the sooner you get someone on your side and feel supported then life will feel a bit easier and more in control again.

Another thought... what about your local mental health team? My dad's self-funded so we don't need involvement from SS, but one thing they did do for us was put me in contact with the area's mental health team who have been out several times to talk to dad and have been brilliant at seeing the situation as a whole, with my own health included. They have provided me with a lot of support and maybe that's the route to take?

 

[sleepless]

It's all well and good talking about carer breakdown...it's talked about a LOT on this forum, much more than what it feels like to have your brain, YOUR brain, broken down by dementia.

What are Social Services to do?

Whip people away at the say so of their family?

Do carers matter more than the person needing care?

It's a hard path.

Harder for the person who watches and worries?
Or for the person who is robbed by the illness?

I have myself , displaced my anger and frustration at the seeming injustice and unfairness caused by disability and illness, and have on occasion over the last 28 years, directed that anger towards Social Workers, Care Coordinators, Doctors, nurses....etc. etc.

I have come to the conclusion that anger and frustration are wasted energy.


Sent from my iPhone using Talking Point

I am also uncomfortable with some of this, garnuft.
I have written more but deleted it as I think it would start a row, but at the end of the day there are 'sad, sick and lost' people out there, to quote the poem, and we either put them first or we hand their care to others. Yes, we matter, of course we do, but they come first.

 

[looviloo]

Yes, we matter, of course we do, but they come first.

In my own experience, some of the problem stems from knowing what IS best for the person with the dementia, since the carer often gets a different response depending on who they talk to... I knew my dad was extremely vulnerable, but getting the GP and SS to listen was almost impossible, and it took a crisis and a trip to hospital to get the ball rolling.

A lot of the time people here are just frustrated because of the seemingly impossible situation they find themselves in. In my opinion everyone's health comes first; the carer and the person being cared for. In his pre-dementia days, my dad would not have wanted me to put my own health at risk in order to care for him. Now that he has dementia he completely forgets my cancer diagnosis and the problems I have, so I have to find a balance. Everyone matters!

 

[Beate]

Putting someone in a care home mostly means putting them first! A carer with a breakdown can't care effectively anymore. A lot of people have perked up in a care home because they have resources a single carer simply doesn't have access to.

 

[VonVee]

Yes Looviloo, I agree with you, EVERYONE MATTERS, the carer and the cared for are equal, not singula.

In my own experience, some of the problem stems from knowing what IS best for the person with the dementia, since the carer often gets a different response depending on who they talk to... I knew my dad was extremely vulnerable, but getting the GP and SS to listen was almost impossible, and it took a crisis and a trip to hospital to get the ball rolling.

A lot of the time people here are just frustrated because of the seemingly impossible situation they find themselves in. In my opinion everyone's health comes first; the carer and the person being cared for. In his pre-dementia days, my dad would not have wanted me to put my own health at risk in order to care for him. Now that he has dementia he completely forgets my cancer diagnosis and the problems I have, so I have to find a balance. Everyone matters!

 

[VonVee]

Sleepless, I am not saying Garnuft is Wright or wrong, and I'm not saying I 100% agree with Garnuft either, but a time comes when the carer or family member have to think of themselves, and rather than the person they are caring for, YES at the end of the day, the needy matter of course they do, but so does the carer, I am 44, where would my kids be if I died of a heart attack tomorrow, due to the stress of caring for my mum, they are only 10 & 13, they need me, my mum is 83, she's had her life, she's had a hard life, but she's had a life no less, where my kids lives would be ruined, and one of them has autism, so you see what I'm saying, yes they matter, and yes ok they come first Sleepless, but then so do the carer, because without the carer being mentally able to care to the cared for, the person with dementia, you as a carer wouldn't be any good for them care wise, and they would suffer, and that's what care assessments are all about.

I am also uncomfortable with some of this, garnuft.
I have written more but deleted it as I think it would start a row, but at the end of the day there are 'sad, sick and lost' people out there, to quote the poem, and we either put them first or we hand their care to others. Yes, we matter, of course we do, but they come first.

 

[Cat27]

I am also uncomfortable with some of this, garnuft.
I have written more but deleted it as I think it would start a row, but at the end of the day there are 'sad, sick and lost' people out there, to quote the poem, and we either put them first or we hand their care to others. Yes, we matter, of course we do, but they come first.

See that last line just makes me feel inadequate. I'm struggling so hard to try & get a balance in my life.
Should I stop struggling & just sacrifice my health & sanity because Dad comes first?

 

[sleepless]

I did say 'we either put them first or hand their care to others.'

I have been through quite a bit in the 12 years of caring for my husband, and though I would like to spend every day with him, I have recognised the difficulties this would bring, so he attends a day centre two days a week, thus I hand his care over for those hours, and put me first.

I just find some of the suggestions on here may lead to some unfortunate and unwanted outcomes, and I am often distressed to read of people with this awful disease being almost demonized for something over which they have no control. It' a fine line between venting and something else (note - this is in no way a reference to the OP whose thread this is.) I actually lay awake troubled over one thread, thinking of the person left to fend for themselves ........while so many responded with talk of locks on doors to protect the carer, who had not mentioned physical danger at all.
Just my opinion. Perhaps I should keep it to myself, but just ignore if you don't like it.

 

[Witzend]

See that last line just makes me feel inadequate. I'm struggling so hard to try & get a balance in my life.
Should I stop struggling & just sacrifice my health & sanity because Dad comes first?

If your dad were well, would he want you to? Almost certainly not.

I have said it many times on here, but I certainly think other people's lives are important, too. If relatives are happy to give up virtually their entire lives to care for someone - because that is often what it takes - then all well and good and hats off to them, but that doesn't mean that everyone should do the same, or that they are selfish and uncaring if they don't.