How do deal with nurses lack of help?

[Ryan_1702]

I've been looking after my mum for many years now, and last year we got visited for the first time by a new nurse. My mum explained her problems to her, she couldn't keep her food down and not being able to sleep were the two main problems.

My mums sleeping pattern is completely erratic. One day she might fall asleep at 11pm within a day or two it'll be 9am she's falling asleep. Couple days more it's 5pm. And every time she falls asleep it's never more than 2 hours before she wakes up.

I don't want to make this about me but when she's awake, I have to be. And the times she's sleeping during the day is the only chance I get to go out shopping. Or clean up around the house. On a good day I can only hope to get 4 hours sleep, in a few chunks, and a lot of days I just have to stay awake right the way through and go 2, sometimes 3 days without sleep. It's driving me crazy to be honest.

Its bad enough that it took over 6 months to get a prescription for Ensure drinks. The nurse has only visited every 3-4 months and we've been asking for a year now (come March 6th) for help with my mums sleeping. Every time the nurse comes she has another excuse "I didn't know you had trouble sleeping" etc.

I've tried phoning up where the nurse works to make a complaint but it got back to the nurse so she told my granddad who's quite violent. And wasn't very happy I'd contacted them. And this has happened three times. Every time I end up getting a beating. In the end I gave up trying to contact them so made a doctors appointment with my mums GP and told the doctor about my mums sleeping habits and he said he'd pass it onto her nurse. He also had no idea who my mum was, though according to the nurse she meets him to discuss my mum every month... The nurse came over the day after my appointment with still no suggestions as to how she could get some sleep.

I just don't know what to do now. Not to make it about me, I just want to get my mum the help she needs, but it's really affected my life. I don't see anyone except for my mum and shopkeepers. There's no contact with any other family members in the area. The only time I get to have a break is when I'm out shopping for my mum. Apart from that I'm looking after her 24/7. I just think it would be a lot easier if she had a sleeping pattern so I could too. I could be healthier then and be able to do more for her, but nobody wants to take any notice of her. Or me for that matter.

Apologies for the essay. Just don't know what to do. The lack of sleep is leaving me scatter-brained so I wouldn't even know where to start to be honest. Thanking you all in advance if anyone has any ideas. :)

[Henrietta]

Hi Ryan
I totally understand about eratic sleeping patterns, I have posted about this recently to. It does seem to be fairly typical as one of the stages a person with dementia sadly goes through. I spoke to an out of hours DR this week (by calling 111) and he came to see Dad and said he would write to Dad's GP about prescribing anti depressants which may ---or may not help dad to sleep at night. Perhaps you could contact the GP and discuss this directly explaining your lack of sleep.
I am more concerned by your mention of "taking a beating" If you are finding yourself subject to Domestic Violence you need to report this to,- mention this to Dr and/or unhelpful nurse. Do you have any contact with Social Services or have a Social Worker to confide in?
There is also a phone number you can ring for help regarding Domestic Violence. Have you spoken to anyone and do you have this number?

[bowlingbun]

Hi Ryan, welcome to the forum. It's a CARERS forum, it is all about YOU in your caring role. It strikes me that you are yet another carer who has not been told anything about what you should expect and be receiving in the way of help.
To allow us to target our replies to you more easily, can I ask a few questions. Don't answer any you don't want to.
Firstly, how old are you? When did you start being a carer?
How old are your grandparents?
Do they live in their own house, or is it rented?
Do you think they have more than £46,000 in savings?

Next time your grandfather makes a move to beat you, go to your room, bolt or lock the door, and ring the police. Maybe in granddad's day this behaviour was acceptable, these days it's domestic abuse.
Has anyone ever told you that you cannot be forced to care for anyone? You could walk out tomorrow and could not be forced to return. Would you like to do this, or do you just want more support to help you? It sounds like you are a virtual slave/prisoner in their home, and no one should have to live like that.
Usually, I start by suggesting that the carees have a Needs Assessment done by Social Services, who then look at what help they need, and arrange it. This time, however, I suggest that you ring Social Services and ask for a Carers Assessment, to be done away from home (think of a suitable excuse).
I spent my twenties doing all sorts of mad crazy things, like riding a road racing motor bike in the Australian outback, and sending steam engines from Australia to the UK. I hate to think of anyone in your situation unable to enjoy life, especially as I have two sons of my own.
We are here to support you, it can't always be about what your grandparents want. Ask us anything you like about how to go about getting services, and we will give you all the help we can. The first question to decide though, is whether you want to continue caring, or leave it to someone else. It's YOUR choice.

[Ryan_1702]

Hello Henrietta thanks so much for the quick reply. I haven't tried 'Out of Hours' yet so I'll give them a go. I was thinking about phoning up my doctors tomorrow morning to see if I can get an appointment for that day and get her in there.

The domestic abuse problem isn't something I'm worried about anymore it's just normality to me. I have explained what's going on to everyone I've contacted. Some Doctors at my GP and my mums nurse. I told the nurse what he was doing to me and not to tell him but she did anyway. So from then on I just thought there's no way anyone will believe me so I better shut up. Which I have done for a long time. Every time I try to get help it gets back to my granddad so there's no point to be honest.

We did have social services over last June I think and they said they would set up a Carer's Assessment but I haven't heard anything from them since and I'm paranoid that whoever I phone it'll get back to my granddad. I don't want to make him angry. But I honestly don't mind it. He only punches me and strangles me a bit. I've never been seriously injured. Just something I've got to deal with and have been for years. Honestly doesn't bother me at all.

What does bother me though is my mum can get quite aggressive too sometimes. Usually if something small goes wrong she'll get riled up and start hitting me with whatever object she's got nearby. I've explained this to her doctor and nurses and they have no suggestions. She never hurts me I'm just worried she'll hurt herself.

[Henrietta]

Hi Ryan
What a lot you are having to deal with- have a read through BBs post and see if you can tell us some answers to her other questions. You do sound as though you have been let down in the past by GP and Social Services. I understand if you are a fit young man, this may be family rough and tumble with your Grandad, but by the words you use it sounds more than that- only you can honestly answer that one. Either way if it is unwanted agro , you don't have to tolerate it. Does grandad ever show any violence to his daughter?
People should be listening to your concerns about your mum's violence though or SS are seriously failing in their duty .
Please do make that appointment with the DR tomorrow. I would perhaps suggest an appointment with just yourself initialy so you can talk openly and frankly in confidence.
If the GP then needs to see your mum you can make a second appointment and take her in with you .

[Ryan_1702]

Hi bowlingbun thanks to you for the quick response too!

To answer your questions I'm 21 now, been looking after my mum since I was 14 when she was first diagnosed with cancer back in 2010. Later that year she had a stroke which left her quite immobile so from then on I had to head back and forth to school between my free periods to do her pills and food etc. In the end I quit halfway through sixth form as it was just too much running back and forth.

My granddad is 77 but quite healthy for his age. So I can't defend myself because I'll get in trouble. He beat me up quite bad once and I got arrested, the police showed me photos of his fists which were all bloody and asked me to explain why I attacked his fists. I was on bail for months and banned from going back to my house to look after my mum because it would be "witness tampering" or something. That's the kind of thing that'll happen to me all the time so I'll definitely never ever be phoning the police ever again. Ever. No way.

He's got his own house but definitely nowhere near £46,000 in savings.

I honestly don't mind looking after my mum. I just wish there was some support. There's no way I'd ever leave. I mean I wouldn't know what to do with myself. My life right now is about making her comfortable. If I left I'd be thinking about her all the time so I think "what's the point". Like there's nothing better I can do with my life than look after my mum. So why should I? That's the way I always think.

I completely get what you mean about doing stuff in your twenties. I'd love to. And part of me does think I'm missing out on stuff. But at the same time Id feel too guilty about leaving her. But part of me does think, not to be morbid, but when she's gone I'm gonna have nothing. Nothing to live for. So I guess I'd like to get her support so I could have a bit of free time to find that something to live for. If that makes sense.

Thank you so much though it's been great to read that. I don't talk to people about this so it's good to get it off my chest. My plan now is I'll try get my mum an appointment at the doctors tomorrow. If I still can't get anywhere I'll phone social services afterwards and see what they say.

[Ryan_1702]

Hi Henrietta, you're spot on it is unwanted agro. Honestly I used to be a wreck when I was younger. It started at a young age at first he'd dare me to hit him so he'd have an excuse to hit back and when he couldn't get a reaction eventually he started getting physical. But it was the emotional side of it I couldn't deal with. Now he's angry so often I'm 100% numb to it.

He's never been violent to my mum. He only shouts at her a lot. If she's eating he'll shout at her for what she's eating. Then she'll throw it all out to appease him. And it takes so so many hours to get her to eat and then when he angers her she'll refuse to eat and start saying "let me starve to death" etc. He does have a history of violence though. It's a recurring pattern. Every male family member he's either driven far away or to alcoholism. I'm the only one still around. It's why my mums family don't bother with her. He tells them not to sometimes making up stories like "she just had bad news and is too ill" when she hadn't had any news at all. That type of stuff.

I did get an appointment with the doctor on my own about a month ago and explained everything to him. And he said he'd be in contact with some people and get me some information etc. Told him everything. I went there because I knew the next day my mums nurse was coming to visit so surely she'd go to meet my mum's doctor on the same day. But still, nothing's changed.

I guess I've just lost hope. Every time I try to get help either nothing happens or my granddad finds out. I know I'm being stupid and illogical but when that happens I'll wait months before I try getting help again. Every time. Really puts me off. Honestly I'm terrified right now that someone's gonna see this and show it to my granddad or my mums nurse. I know I'm just being paranoid but it wouldn't surprise me knowing my luck haha.

I keep thinking though as well with my lack of success in getting support - this must be normal. All of it. There's probably loads of people in the same boat. But then when I tell people what's been happening they look at me like I'm some sort of conspiracy theorist. I just have no form of reference. This has always been normal to me. I've never been told my rights or anything. Never been given so much as a leaflet which would be nice. But it must just be the same for everyone.

[Henrietta]

Hi Ryan

Just a quick line at the moment but if you are signing in under your real name , you can always change your "online name" so no one will recognise you and don't put any give away details on your public profile such as town or names of any real people. You could for example edit the name of any hospital you may have mentioned by name. Click the little pencil icon.
Remember there are other security things you can do on PC - delete browsing history and I think you can surf incognito but don't know how as no one shares my computer.

I wish I had a wand to wave for you , my mother had cancer when I was at school but sadly she died so I know some of what you are going through. Have you and your mum always lived in Grandad's house? Do you get out at all or is it nearly impossible.

I hope some others will be a long soon with some good suggestions. Let us know how you get on at the DRs. Preparation is the key sometimes, jot a few reminders down- in code if you are worried about Grandad finding the note. Work out what you want to explain about mum, about being ignored in the past, about yourself not sleeping, about asking for help and support, about DV-make your own list and use your ten minute slot efficiently. Let us know how it goes.

[Ryan_1702]

Thanks for letting me know all that I'll probably get name on here for extra peace of mind. Luckily no-one shares my computer so there's no worries about that.

Me and my mum don't live with my granddad he just comes over every few days usually to try and start an argument. And it stresses my mum out. He directs it at me and I just barricade my bedroom door. Then my mum blames me for giving her cancer because of all the stress I'm causing her. But she's always said that.

I only get out when she needs shopping, apart from that I'm with her. It's quite hard to get out as I've got to do household stuff but even when that's done she makes it difficult for me to have a break. Sometimes for example I might have tucked her into her duvet but she wants to skip adverts on the TV so I'll have to run in the room every ten minutes to fast forward for her so she doesn't have to untuck herself. I know that's stupid but it's little things like that that keep me here all the time. If I say "no I need some sleep" or whatever she'll get angry and phone up my granddad and he'll come over to give me a beating. So I'm stuck doing whatever she asks for really. All hours of the day.

I feel guilty for even suggesting this but here goes. I'd like a bit of compromise. I know her health is more important than my feelings but I don't think she realises what effect she has on me. She gets angry when I fall asleep because Im being "lazy" and she'll say "you don't need sleep you don't have cancer!" she uses the same excuse when she doesn't want me to eat. "You don't need food you're not ill, I am!!" I'd love it if someone could sit her down every month maybe counselling or something. Help her get her anger out in more constructive ways. Give me an hour off haha!

I'll let you know how the appointment goes. I've got to take her in tomorrow as she's on chemo in 2 weeks so needs a flu jab because her immune system will be low. But I'll express my concerns about how she's being ignored and then perhaps get another appointment soon after to tell them about me.

[Henrietta]

Hi Ryan
Glad you and your mum have your own place, I'm sure that makes the options we can suggest more flexible.
I think one thing to think about is that if mum is poorly (and she obviously is if she is acusing you of giving her Cancer) then you are unlikely to change mum. You need some head space and getting your head around the idea that you can't change mum but what you can take control over is how you respond and deal with and feel about what is happening to both of you . It is hard even in middle age to swap roles with parents and take control. Even if you are in your 60s and parents in their 90s you still feel like their child as many on here can testify. You need to "take control" easier said than done but if you take one thing from this forum let it be that. One thing at a time- speak to Dr tomorrow.