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New here and need lots of advice if you have time? -Carers UK Forum

New here and need lots of advice if you have time?

Tell us a bit about yourself here.
Okay, this might be a long one. I've joined this forum after being up all night driving myself demented looking for advice. I've been caring for my Nanny for four years now, she has Parkinson's and she's severely depressed. We thought she'd had a stroke about six months ago but a month ago I found her collapsed again, same symptoms, and this time we found out it was an overdose, and likely the suspected stroke was an overdose also. She was admitted to hospital and after a week transferred to a nursing home for assessment. She's due home again in the next few days. For the last four years I've been more worried about the mental health problems than the physical, she has really bad moodswings, she'll hit, kick and throw things at me, call me horrible names and tell lies about me to family and professionals. The social worker and care agency completely circumvent me and go to my uncle for all decisions despite me being her live in carer and next of kin. Any problems I have with the care agency are ignored or passed straight on to the person i've complained about. While my nanny's been in the care home she's been forced to wear incontinence pads, which she has never needed, and now feels she can't cope without them. It all really boils down to this; what is she possibly entitled to (pads, commode etc), and how can i get people to take me seriously? I don't know whether it's my age or whatever my nanny's told them in one of her rages, but nobody will listen to me. Also, i have a weekly arrangement i have to uphold and until recently was attending counselling which i had to give up because there's no one to sit with my nanny, i've asked for a sitter before but social services refuse to fund it, instead funding a shopping block we have no use for, how can i convince them to reconsider? I'm pretty sure if i have to continue fighting with authorities, I won't be able to cope anymore. Does anyone have any insight?
Hi Samantha,
I would try googling for your area and the words carer's advocate. An advocate is free and they will represent you or your nanny, best speak to them to find out exactly.
I used them last year and never even knew they existed before struggling in a battle with a horrendous social worker who was hell bent on sullying my abilities to care for my mother but thank god I was judged by all they sent in as being a good carer and mum was fine and happy.
Being represented by someone who knew our rights made a huge difference.

Also if you aren't with your nanny all the time but want to keep an eye on her you can get a camera that works in conjunction with iphones, ipads etc so you can keep tabs on a room while you are out.

hi Samantha,
welcome to the forum.
It seems to me you need someone on your side. I'd definitely find a carer's advocate,
and you could find local carers groups to get advice and make contact with other people in similar situations. There are Young Carers too, don't know how old you are
but it sounds like you are being discriminated against because you are young.
Is anyone else in the family supportive of you?
Have you looked at the Parkionson's website - www.parkinsons.org.uk. They have an advice line too - 0808 800 0303. They have lots of info on website and a forum.
I always think the more information you have the better, it helps you to argue your case as well as helping you to look after your grandma.
Once you get an advocate it will take a lot of pressure off you, and stop social services
dismissing you. Have you had a Carer's Assessment with them? They should be able to accommodate your counselling, they are supposed to support your health and wellbeing as a carer. I don't know where you live, the services vary so much.
Community Nurses/District Nurses should deal with incontinence issues. Can you get your nan to sign a letter allowing GP etc. to discuss her medical records with you?
Sorry, lots for you to think about there !!
Let us know how you get on, good luck, Lesley xx
It sounds as if you've had a really horrendous time, don't know how you've coped with it all quite frankly. Might I ask how old you are, and your nanny? You don't have to answer, but it would affect whether any extra benefits were payable, which might enable you to buy some extra care. I'm really concerned at the way you are being totally ignored, it's a disgrace. Somehow, the fact that you are live in carer must be recognised. ANY concerned relative can make a formal complaint to Social/Adult Services and/or the Care Quality Commission. Forcing someone to wear incontinence items could be counted as Elder Abuse.
Thank you both for replying so quickly. Unfortunately there don't seem to be any advocate services in my area (Newtownabbey area of Northern Ireland)
I don't own an iPad or iPhone or have any home internet, so I couldn't try that even if it was feasible. I can't leave her alone for any length of time because of the overdoses and she has panic attacks. She's okay with me going to the shops but i have visitation with my little brother every week for around six hours and there's just no way she could be alone for that length of time. I'm on carer's allowance and income support and making that stretch to necessities is difficult enough, i can't afford the £50 a week we were quoted for someone to sit with her.
I'm twenty, but it's been the same the whole time social services have been involved, any points I make are dismissed, any time i ask if there's any help available to me so that I can visit family or go out with my partner i'm told i shouldn't be a carer if i can't cope and i should be willing to put my nanny's needs first, nobody has even mentioned a carer's assessment to me before so I had no idea they existed. I do nothing but put my nanny's needs first, I dropped out of further education, i'm not able to work, I very rarely spend any time with family, friends or my partner unless they come to the house. I have help from my dad and sister when they can but they don't live as close as to be convenient, one of my uncles rarely sees or speaks to my nanny and my other uncle doesn't get on well with me.
The doctor's are usually quite good about letting me attend appointments but again any suggestions are quickly ignored, the occupational therapist and physiotherapist were great about involving me and asking my opinion based on experience but sadly they aren't involved anymore.
Do you think arranging a meeting with the social worker, someone from the care agency and the community nurse would be a good idea? If so what can i say? I really have no clue how to deal with these people without being judged and dismissed. I know i'll need to ask for a new assessment for my nanny in terms of social services and the care agency, and an assessment for myself. What other things should i ask about? Social services and the community nurse have never been very forthcoming with information on what exactly we're entitled to.
Hi bowlingbun, I'm twenty and my nanny's eighty four.
Unfortunately my nanny doesn't want any complaints made as she says they'll stop taking her to the toilet or keep her in her room if they find out. There have been many issues with this particular care home, although i know my nanny is liable to make things up I've witnessed things myself which will be brought up as soon as she's home and safe. She has mysterious bruises she doesn't remember getting, a severely swollen foot, she was left on the floor after a fall for half an hour even after pressing the call button and when she resorted to ringing an ambulance the took her phone apart, took out the battery and replaced the phone without telling her, letting her think her phone was broken, that phone is the only way she can contact family as she's not allowed to use any phones in there, I witnessed a wheelchair bound woman left to sit in the overheated smoking room for three hours and had to speak to staff three times before they would take her to her room, the next time i visited i saw the same woman lifted under her arms and forced to walk despite her knees giving way. It's a disgrace.
Hi Samantha,
I just had a look on website for NI Social Services and it looks very similar to here,
you are definitely entitled to a Carer's Needs Assessment.

There is Belfast Carers Centre - 028 9043 4700, and if you aren't in their area then Carers Northern Ireland - 028 9043 9843.
They support carers and offer advocacy. You sound very isolated and I think you need to get in contact with someone who can support you. Can you call them while your nanny is away, and you have time to talk freely?
You have done so well to look after her from such a young age, but we all need support. It could make your life, and your nanny's, much easier.
best wishes,
Lesley xx
Thanks Lesley, I'm glad you could make some sense of because I couldn't =)
My nanny's actually really supportive when she's "in her right mind" as she calls it, so even if she does come home tomorrow I'm sure she'll give me the time to speak to someone. Hopefully they can help me out at everything is just so confusing and you have to really fight just to be heard.
I'll post again to let you know how things go =)
I've found this for you ..
Community advice and advocacy service for the disabled and carers.
Appointments and home visits by arrangement.
We have created a dedicated single number 0300 1 233 233 for Belfast. This number will make it simple and easy for you to contact our advice teams throughout Belfast.

Belfast - East Belfast CAB
The Arches Centre, 1a Westminster Ave North
0300 1 233 233
Thanks Scruffy, I'll give them a call.
Got the phonecall today that my Nanny will be home monday, although everything was arranged before I was told. The social worker is visiting during the week so I'll be able to raise my concerns then. Thanks for the advice everyone!