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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Aibu to stop being a full time carer and walk away?

262 replies

dooodoooo · 18/07/2018 14:19

Been caring for my grandad for 10 years now.
He has 2 daughters,one lives the next street over and the other in America.
Haven't seen daughter 1 (local ) in 7 months and daughter 2 in 3 years.
My mum died when I was 12 (grandads daughter)
At first it started just getting the shopping and now 10 years later I'm here from 7am to 6pm every day.
I've told my aunt (in January ) I couldn't cope anymore and we need help.
She still hasn't came to sort it (she has power of attorney and bank books)
I have zero life ..nothing.
Nobody
This is my life...
Aunt 2 (in America ) used to ring 3 x a week,now we are lucky if it's once per week.
Eventually both aunts won't keep in touch.
I've had to start taking anti depressants and I'm getting pretty scared to leave the house.
I'm stressed really bad
I'm so close to just leaving

OP posts:
Mxyzptlk · 18/07/2018 16:31

Does your dad know how you are feeling and exactly what you are coping with?
He needs to not just get angry with the aunts, he needs to help you get out of the situation.

Yes, contact the numbers already given to you.
Yes, get your nurse to talk to adult services.

I have worked, in a care home, with people like your grandad. It's challenging even as an employee with others to help.
It's far too much for you to deal with alone.

Get help. Don't try to keep going.

winterinmadeira · 18/07/2018 16:34

I agree - 4 weeks is too long. I watched a close friend struggle on looking after her dad (similar condition to your DGD) for 6 years - she had a nervous breakdown in the end. I don’t want to scare you but please look after yourself. You have been amazing but it’s time to let them or SS step up.

dangermouseisace · 18/07/2018 16:35

Bloody hell OP. YANBU to give up caring role. I used to wrok for SS, and Lewy Body dementia used to consistently make my heart sink when I saw I'd been allocated someone with it, because I knew that this was going to be tough for all involved, and wouldn't have a positive outcome.

I'd go so far to quietly suggest that it really isn't something that family members can deal with themselves, that really it requires paid carers, or more commonly, a nursing home. The mobility issues, being awake all hours, aggression, hallucinations. It's all too much for someone to live with, your grandad needs people working with him who are going to go home at the end of the day. It's relentless, and heartbreaking.

If it was me I'd be on the phone to social services saying that you are having a crisis and you cannot look after him any more. Make it clear that he has Lewy Body Dementia because the chances are that the person on the end of the phone will get that you are being really serious. Describe what is happening- you are getting abused, he can't mobilise without support (falling) and he can't eat alone. They might be able to get him into respite whilst they sort out something more permanent. Do you have a carers card e.g. are you a member of a scheme that provides emergency cover if necessary? If you're having to take benzodiazepines to cope with the stress then it's way too much, and it's ok for it to be too much. If you tell SS that as well they might get a move on a bit as it's not really 'safe' to have someone on benzos looking after someone with LBD. Anyone would find it too much OP, you've done so well to get this far. It's ok to say it's got to stop Flowers

Ginger1982 · 18/07/2018 16:35

You need to go to your aunt's house, put your grandad's keys on her table and say, 'that's me finished' and walk away. Seriously. This will kill you. It is disgusting that she is letting you care for her father. Fuck her high blood pressure.

Gazelda · 18/07/2018 16:36

I echo the poster who suggested DementiaUK. Their Admiral Nurses are there to help the patient and the family. Please call them.

You've been, and continue to be, a wonderful, generous, loving and caring granddaughter. It's time you had someone else to help you and to help your grandad.

You now owe it to him to make the phone calls that get the ball rolling to ensure that he has the best possible level of care and, just as importantly, the support you need to be able to enjoy life.

Your aunts should be ashamed, but that should go without saying.

dooodoooo · 18/07/2018 16:38

My dad knows (now anyway ) he came to hospital with me and the nurse pretty much said stress was causing all my problems
My dad is in his 60s now and still working so I don't want to give him too much pressure or worry so I keep some things to myself.

Are visual hallucinations normal with Lewy body?
The auditory ones have been going on years but the visual ones are pretty recent

OP posts:
dooodoooo · 18/07/2018 16:40

Grandad doesn't know if it's morning or night now.
I don't even know if he sleeps when I leave as he sleeps all day too.

OP posts:
dooodoooo · 18/07/2018 16:40

Sorry if I sound like a total moaner.

OP posts:
dangermouseisace · 18/07/2018 16:47

visual hallucinations are normal with Lewy Body, they are one of the recognised symptoms. That, the night/day disturbances, the 'freezing' and falling, the parkinsons type mobility issues. I don't know your grandad but I don't remember going out to see anyone who kept regular hours with sleep. If he's falling regularly when mobilising, with everything else I"d be surprised if SS didn't suggest he needed to be in a nursing home. Unfortunately the LBD will only get worse, and sometimes there can be a rapid decline so getting in touch with SS sooner rather than later is recommended.

Madforfootball · 18/07/2018 16:48

You're 32. You have plenty of time to find yourself a man and have a family, trust me.

Email both aunts. So one has high blood pressure - whoopy do for her! You're on the edge of a breakdown.

Have you booked a holiday yet? You really, really should. Even if, the first time, it's just a cheap hotel room far away (preferably without mobile signal) where you can just sleep for a few days.

Your aunts will strop. Let them. If you never hear from them again I don't think that will be a bad thing.

You need to learn to put yourself first. Be selfish. And let people here help you. You deserve it.

Hairyfairy01 · 18/07/2018 16:49

You are doing an amazing job but it's now time to think if the situation is fair on you or your grandad. Please contact social services, be honest with them, he needs a social worker ASAP who should be able to offer some support to you both. Sounds like he needs community physio and occupational therapist input as well, you could ask social services about this. Your gp sounds rubbish and your aunts are acting awfully. If needed, and I don't say this lightly, get your grandad to a&e and say you are not coping and can not offer him support with his home any more. Plenty of elderly people get admit for social reasons. Sounds awful but sometimes it's the only way to get the help you both need. Sadly his condition will only get worse.

HelenaDove · 18/07/2018 16:49

OP im sorry you are going through this. Your family members are selfish as fuck and your aunt likely wants to hang on to her inheritance .

i post a lot on here about housing associations and have experienced a similar shitty attitude from mine as a full time carer and a tenant myself and your housing officers attitude doesnt surprise me tbh

They cant evict you though. You havent done anything wrong.

ThePlanetGoesOnBeingRound3 · 18/07/2018 16:52

OP My FIL(90) had Lewy Body. He was a gentle soul, it was dreadful to see him so distressed.
He lived with MIL(93) she was horrified that he may have to live in a nursing home, she had mobility problems and he was practically her carer until dementia hit him.
His needs increased rapidly, falls, soiling himself, aggression but it was her who refused to have carers in, until one morning (2 days before Xmas) MIL rang me for help, he had fallen at some stage during the night, there was poo all over, I mean all over.
Within 3 hours he was in a nursing home.
He was clean (is your Grandad managing to keep clean?) and cared for by a team of carers.
You can't do it by yourself.

I nursed my Mam who had mixed dementia at home until she died, at home, in her own bed. It brought me to my knees.

There is an excellent forum for people who have or care for people with Dementia.
www.alzheimers.org.uk/get-support/talking-point-our-online-community

dangermouseisace · 18/07/2018 16:52

heck no dooodoooo you are not a moaner.

This isn't like Alzheimers or vascular dementia, which although they can be horrible, particularly in later stages, can often be managed at a persons family home. LBD is a whole shit show of horrible symptoms that most often can't be managed at home, or can't be managed at home for very long. I'd be absolutely devastated if a family member was diagnosed with it, less bothered about the other types.

ThePlanetGoesOnBeingRound3 · 18/07/2018 16:54

Talking Point Alzheimers Society

www.alzheimers.org.uk/

cptartapp · 18/07/2018 16:54

OP you're being used. Your aunt is making excuses to not get involved and completely taking advantage of you and highly negligent with her control of your GF finances. He deserves better than to be sleeping on a sofa in his very latter years ffs. How dare she put you through all this.
With respect your GF he has had his life, yours is passing you by. Give one weeks notice to your aunt and social services, give them each other's contact details and walk away. I guarantee you will not feel any worse than you do right now.
I have been nursing for almost 30 years but would never be anyone's 24/7 career. Especially with Lewy.

OliviaBenson · 18/07/2018 17:03

Dear Aunt,

I am writing to let you know that I am unable to care for xxx as of (date next week).

As you are aware xx health is failing and he is becoming increasingly more difficult for me to give him the care and support he needs. I feel that this has now become a safeguarding issue.

I have repeatedly ask for your support but have been constantly ignored. My own health is now failing as a direct result.

You will need to liaise with social services (tel no) and his Dr from now on.

I'm very sad it has come to this but you leave me with no other option.

Yours,

OliviaBenson · 18/07/2018 17:04

Copy in anyone and everyone as well.

ohreallyohreallyoh · 18/07/2018 17:10

Please call Social Services. You are not really next of kin and your au t needs to step up. I am desperate to inherit as a single parent who has very little pension provision. I have recently had to put my mum in a home because the dementia has taken her. Social Services were helpful and although we are fitting the cost from my mum’s money, there was more help available than I anticipated. Your mum would be proud of you. You need some help with this.

Socksey · 18/07/2018 17:10

Is the local aunt giving her high blood pressure as the reason she can't be involved in caring? She needs a dose of reality and if she's taking her tablets then she's just looking for excuses.... or making it up... she needs to step up...

LondonJax · 18/07/2018 17:11

@Dooodoooo please do what DangerMouseisace is advising. Call Social Services. Tell them your grandad has Lewy Body Dementia and you are in crisis (use those exact words). Explain your own health issues - DO NOT PLAY THEM DOWN. Don't say everything is fine or will be you're just a bit down. You are not just a bit down. You need help. Your grandad deserves help. Insist on an emergency care assessment.

When they come tell them you are not able to continue as carer. Don't let them talk you into managing a moment longer.

Don't worry about crying on the phone or in the meeting - they need to see or hear that you are genuinely up to your eyes in stress, medical problems and worrying.

When they come for the assessment don't pretty things up. Leave things messy if that's how grandad is living, leave his bed things on the sofa. They are going to assess how he's living, they are not judging you or him.

My mum has Alzheimer's and went into a home in April. Before that she was in respite following a number of falls at home. In the 5 years before that me and my two sisters cared for her. It was hard enough for us so I am full of admiration for you. I sat in the meeting for my mum with social services. I let mum do the talking - usually I'd 'interpret' for her. So when she was a bit muddled I'd say 'mum means....'. I didn't do that. I let them see just how muddled she was. I stressed time and again that she could not be left alone - she was having more and more falls, had meals on wheels and three carers and we still couldn't manage. I said we were in crisis. Thirty minutes later she was on the list for a care home place.

My mum was housing association. They are not allowed to kick your grandad out as long as his rent is up to date and he is not causing major problems. I'm guessing the woman you spoke to thought you may have been trying to obstruct them. We know you weren't but she's probably heard everything so wanted to reiterate that they can take you to court if you didn't let them in.

Now I am going to say something that may seem as if I am having a go at you. I'm not. I'm saying this as if I were talking to myself two or three years ago based on what I know now.

You are getting walked over because you are allowing it to happen. I allowed it to happen to me. The only way this is going to improve is for you to reach deep down and summon up the person who has had enough. You need to stand strong and say you cannot and will not do any more. This ends. And don't worry about your aunts saying 'you did this' if he ends up in a home. You did do that. You got him to a safe place. If they continue with it just say 'lucky I did because you weren't helping and weren't prepared to' then walk away - let them argue at your back. Turn your phone off. They can call you what they like - only you can allow that to hurt or influence you.

The minute I said to the social worker 'we're in crisis and we cannot look after mum at home any more' I felt 10 stone lighter. Seriously.

Yes, you will have another push to find the right home and you won't have much choice because the social service budget doesn't stretch to luxury. But my mum has no savings so has the basic accommodation and is very happy and cared for. Yes, someone will have to sort all of his things out. But you cannot go on like this. And if your aunt has POA she will have to take up the reins on these things - you don't have permission.

And change the thoughts on your own mum. She'll be looking down saying 'well done, you're doing the best thing for grandad and well done for sticking up for yourself and him'. She would be proud.

ThePlanetGoesOnBeingRound3 · 18/07/2018 17:12

@dangermouseisace
Oh dear. less bothered about the other types... tut fucking tut.

I hope you never learn how crass that remark is.

sociopathsunited · 18/07/2018 17:12

I'm going back to giving Aunt who's overseas 4 weeks...

Sod that.

If your GrandDad died through the night, she'd have to be here an awful lot sooner than that for his funeral.

As for the one with high blood pressure - so bloody what? She's done chuff all for a decade, and you're still worried about her???? Who is worrying about YOU?

You are the only one who can call time on the situation. We've told you that you're not being selfish, you're not being unreasonable and that you're allowed to reach the end of your strength. Stop, before mother nature stops you herself xxx

User183737 · 18/07/2018 17:17

They dont want his inheritence used on a care home. You are keeping their money sat there while they do nothing.
As awful as it sounds id ring an ambulance and get him into hospital. They wont be able to discharge him without adequate support.
You sound depressed and you need time for you. Its not fair.

Tinkobell · 18/07/2018 17:22

OP - I have no experience of your situation but some other posters out there have given you some brilliant advice that I think you should follow.
I do have teenagers however. I just want to say to you that you are an amazing young woman for everything that you have struggled through and taken on. No matter what the two sisters say to you, no matter what flack may come your way over the next while.....hang in there and REMEMBER all that you have done for the last 10 years. You are remarkable but you must reclaim your own life without delay. You really have reached the end of the line. Don't talk yourself out of it.
I think the two sisters are a complete and utter disgrace.

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