My Mum has died. She was my Carer and prompted me to wash, eat, take meds.
NoOne
Online Community Member Posts: 72 Contributor
What am I supposed to say now on the PIP form nobody is here to prompt me? I'm schizophrenic with long term depression. My 'needs' are the same as they were last time I renewed PIP.
Maybe worth saying IIRC they took points off me last time because I do eventually eat. Which kind of says if you starve yourself to death ... you do qualify. I said I don't eat to standard but they just reiterated 'but you do eventually eat'. I'm thinking they will say 'but you do eventually wash, eat, take meds etc without prompting now?
0
Comments
-
I'm so sorry to read about your Mum, who must be a great miss. I hope you have other family or friends who can support you, even if it's just a little.As far as PIP goes, in a way nothing has changed. It's about the help you need, even if you don't get that help. Many of us live on our own, & still have 'needs.'PIP is also about if you can't do something safely, & to what's considered, I suppose, the standard that people without a disability can manage. Another consideration is if you can't do things as often as would be normally expected, so you being unable to wash/eat as often as you'd like, or as often as most people without a disability manage, also counts. These are the sort of things that show the difficulties you face, & where you should still gain points, so please don't worry.0
-
Thank you. I miss her very much and often get so angry at what the NHS did to her.I speak to one family member on the phone. I have one friend I've seen twice in the last three years so not much outside help. I'm a hermit now living in a whole lot of 'belongings' cluttering the place up so much.So you really think nothing has changed wrt PIP needs? It feels so unreal to not be able to say as I did last time "Mum still asks me if I've had something to eat" because she had dementia and slowly she stopped reminding me about meds then washing then food. But when she did, I used her as an example of "Needs prompting to do..."What is to stop them saying like last time "but you do eventually eat/wash/medicate" but now without any prompting? They could say my needs have diminished because I don't get prompted. At the moment it doesn't seem I have any chance without Mum. What should I even say about 'prompting' and 'changes to the help you get from another person' because it was a feature for these things.0
-
All I can say is people here will help you when you need to go through PIP again, should you wish. You still need prompting to do something, even if no one prompts you. You would say I need prompting to do such & such an activity or I just don't eat regularly/don't take my meds, etc.I live on my own, & still wrote I need help, even if I didn't get that help, with my PIP claim. Your needs haven't changed, nor diminished.I'm sorry you got comments like, ''you do eventually eat/wash/medicate" as that's so wrong. Your Mum would want you to get the help you need with PIP, as do I. Honestly everyone here will help you with your next PIP review, & support you as much as we can before then too.
0 -
Thanks Woodbine. Not coping well. I lived most my life with my Mum and my earliest recollections are watching the Moon Landing and crying in school because I thought my Mum had died. I was always frightened of her dying.I have just found what they said last time. And I still can't get my head around it. It says for multiple things "You need to be prompted/supervision/assistance to do XYZ". So I say I need prompting/supervision/assistance to do XYZ but don't get it and I still do XYZ but not to an expected standard? Is that right? Or say I don't do it to Standard because I'm not prompted. Confusing myself now if there is a difference.What should I say for preparing food as there is a twist to it? Right now I can only use the kettle and airfryer normally. Every surface is covered with stuff I can't prepare a meal even if a thousand people were egging me on there is nowhere to do anything. I don't want them telling my Landlord and then be in trouble there too. Lots of things go wrong for me.The biggest thing for me is dealing with people. They don't understand how it affects me. In the past I've cut myself .. I really don't want to go back to that.0
-
@NoOne I'm going to pop and email over to you
0 -
Hannah_Scope said:@NoOne I'm going to pop and email over to youHi, I sent two emails back and tidied up my previous post in case it was unwanted.EDIT: Oh I have an automated reply. You might not get my email? I could post it here but it would be Off Topic and bloat the Thread. I could direct message if there is a way?0
-
Hello @NoOne the emails came through
0 -
Hannah_Scope said:Hello @NoOne the emails came through
So how do I tell you what was in my reply because your email has given me more worry. Could you send me a Message to which I could reply?
0 -
Hello @NoOne
Please don't be worried. Email me back. That way if I wasn't on shift someone else from the team can answer you 0 -
Hannah_Scope said:Hello @NoOne
Please don't be worried. Email me back. That way if I wasn't on shift someone else from the team can answer you I will try but the email got a reply with points why I might not get a reply as if it went in a pool of nondescript emails from anybody and not to a particular person. I will try and mark it FTAO Hannah_Scope.I have just seen your reply in my email. I have replied. Hope you can set my mind from racing and worry.1 -
Hi there,
Losing a parent is devastating because your whole world has changed. There is no replacement when we are so invested in one and the necessary adjustment and acceptance takes time.
CRUSE bereavement helpline 0808 808 1677 is there Monday to Friday for telephone support. It's vital that you talk about your mum and hear the word 'mum' if you are mostly alone. Making connections on this forum is a good start.
Bereavement counselling on the NHS can be referred by your GP and I'd strongly recommend it. I found the commitment, routine and activity helpful though it was hard to go. I think I only missed one session. At school, I thought that every ambulance siren I heard was for my dad and grew up in fear of losing him, too.
One 'health report' states I have no problem using a hand to reach my mouth therefore I have no difficulty eating. Illogical. Your medical history counts above all else so contact your doctor asap to explain that a benefits review is unmanageable for you and you need more support in general.
Your GP can write a supporting letter about your current thoughts of self-harm and risk of malnutrition. It should be addressed to DWP and state that s/he has previously issued 'fit notes' for you - Med 3 certificates - that you receive (disability benefit type), that you continue to take (medications) and that your conditions will not improve.
Try drawing pictures or diagrams and write candidly about yourself. Draft, cross out, highlight and condense your notes to identify relevant information for the PIP form then book an appointment with CAB for them to fill it in. Ask them to copy everything for you and attach the GP's letter to the PIP form to remind DWP that yours is not a new disability claim.
0 -
WhatThe said:
Hi there,
Losing a parent is devastating because your whole world has changed. There is no replacement when we are so invested in one and the necessary adjustment and acceptance takes time.
CRUSE bereavement helpline 0808 808 1677 is there Monday to Friday for telephone support. It's vital that you talk about your mum and hear the word 'mum' if you are mostly alone. Making connections on this forum is a good start.
Bereavement counselling on the NHS can be referred by your GP and I'd strongly recommend it. I found the commitment, routine and activity helpful though it was hard to go. I think I only missed one session. At school, I thought that every ambulance siren I heard was for my dad and grew up in fear of losing him, too.
One 'health report' states I have no problem using a hand to reach my mouth therefore I have no difficulty eating. Illogical. Your medical history counts above all else so contact your doctor asap to explain that a benefits review is unmanageable for you and you need more support in general.
Your GP can write a supporting letter about your current thoughts of self-harm and risk of malnutrition. It should be addressed to DWP and state that s/he has previously issued 'fit notes' for you - Med 3 certificates - that you receive (disability benefit type), that you continue to take (medications) and that your conditions will not improve.
Try drawing pictures or diagrams and write candidly about yourself. Draft, cross out, highlight and condense your notes to identify relevant information for the PIP form then book an appointment with CAB for them to fill it in. Ask them to copy everything for you and attach the GP's letter to the PIP form to remind DWP that yours is not a new disability claim.Hi,Quite a lot there.The thing about my Mum's death and needing more support. My Mum's decline, pain suffering was principally due to 'support'. OK she had Alzheimer's but we were fine. Then the health professionals got in - for the simple task of taking a blood sample. People have said I could write a book. And I really could. The things they did to both of us. I have a video of her sitting in her chair, she could still speak, read basic text on TV watching QVC, she had spluttered a bit on two drinks over three months, tell me she was 'full up', she wasn't incontinent... she was good. Two weeks after that video she was fast tracked home to die thanks to the 'care professionals' interventions. And that was the start of two years of ... shaking my head here...the pain and agony they caused. Unbelievable. I took so many pictures and videos of her and I can't bare to even see any. Even nice ones. I just deleted a whole lot of ranting and raving about what exactly happened. Exactly what they did. My God you wouldn't believe what they did. It makes me so angry. Regularly. I have to try to not think about any of it. All I see is pain and suffering and the wounds they gave her. Yes. Wounds. Imagine a large red hot frying pan seared on to your flesh - your bottom and almost half way up your back...that's what they did for us. I'd like to take them to Court for it. I have all the records. But it's just that I can't bear to look at any. Photos. Videos. Recordings of conversations. I do actually have them over a barrel/bang to rights or whatever thanks to all that. I think they know because they started on about how it's OK for me to have them for my own records but if I let anyone else hear/see them I'd be a ? forgot now Data Manager? and I'd have to obey various Laws. Two particular Senior District Nurses need their career's ending.I don't go to my GP. Haven't been for many years because of his attitude and it's dealing with 'a person' which I hate doing. He has given me a written warning he'll discharge me because I was upset about what the mental health team were doing to me. I went to see him about it, and I called them a name - not really bad name - boom Formal Warning Letter. I used to work in Hazmat and was scared about my exposure to the thing I worked exclusively with, but in his wisdom he says "anyway you were never exposed to any asbestos" as if my job was made up in my head! That's his attitude. I don't think he's done any Med 3 notes? I've never heard of them.I will definitely be letting them know it's not a new claim. I'm going to complain a bit about the way information was interpreted incorrectly in the past at the relevant points and reiterate the reasons I was discharged from Mental Health after 10 years - incidentally also because having to see 'a person' made my mental state decline in the months leading up to the appointments.I do need counseling but the anger I have needs to dissipate I think first. If it ever does.
0 -
Long, ok
I will definitely be letting them know it's not a new claim. I'm going to complain a bit about the way information was interpreted incorrectly in the past at the relevant points and reiterate the reasons I was discharged from Mental Health after 10 years - incidentally also because having to see 'a person' made my mental state decline in the months leading up to the appointments.
You haven't imagined industrial injuries and there are good, caring surgeries out there to register with and agree a new care plan. Telephone appointments and video calls are preferred by most doctors for all sorts of reasons.
Clearing up is a little at a time once you've got enough water, meds and protein inside you. That's 70% water. Asking for help when you need it is the kindest thing you can do for yourself
0 -
WhatThe said:
Long, ok
I will definitely be letting them know it's not a new claim. I'm going to complain a bit about the way information was interpreted incorrectly in the past at the relevant points and reiterate the reasons I was discharged from Mental Health after 10 years - incidentally also because having to see 'a person' made my mental state decline in the months leading up to the appointments.
You haven't imagined industrial injuries and there are good, caring surgeries out there to register with and agree a new care plan. Telephone appointments and video calls are preferred by most doctors for all sorts of reasons.
Clearing up is a little at a time once you've got enough water, meds and protein inside you. That's 70% water. Asking for help when you need it is the kindest thing you can do for yourself
It seems to be across the board. This for eg I was on a motorcycle going 60 or 70 mph. It was the speed limit. An on-coming car (going fast) turned into me. That was the end of looking for a Doctorate and my education going down the pan. When I got my bike back the front wheel had been pushed into the engine so hard it had cracked the case. Years later when I saw a neurologist he said I had a bruise to the brain. But what of my Dr's? I was in pain, my vision was off, I felt dizzy and would sometimes stagger walking. I asked a different Dr for a sick note. "Can you sit in a chair?" "Yes". "Can you hold a pen?" "Yes" Then you're fit for work". Same for my pains that continued for years later: "Nobody has these symptoms so long after". When I was accepted as having big mental problems and I wasn't working because of them, I went to see yet a different Dr for something. I said like two or three lines to him and it was "Why aren't you at work! You should be working!!". Seriously I have no luck. And it was bullying at work that began the destruction of my life, led me to lose my home, garden, family, then off to the psych ward. A bit off topic I guess but there are reasons I do what I do. Add what has happened in these latter years from the 'carers' and maybe you see why I don't want to meet people, especially health professionals.Thank you for your concern. I appreciate it.1 -
Those doctors sound dreadful but they are not all like that so keep trying until you find one you like (and who likes you). They do exist. My GP is my main support which is why I value her so much (women are usually nicer).
I avoid people too as they upset me and I can't always manage my behaviour around them. My late autism diagnosis is the only thing that ever made sense. I now know that isolating myself is easier and safer than forcing myself to engage with people I don't like or trust to understand - that's pretty much everyone.
I consciously have to parent myself on a daily basis to do the basics by asking myself if somebody else is going to come and do whatever it is for me. That is my post-depression strategy anyway
0 -
NoOne said:WhatThe said:
Long, ok
I will definitely be letting them know it's not a new claim. I'm going to complain a bit about the way information was interpreted incorrectly in the past at the relevant points and reiterate the reasons I was discharged from Mental Health after 10 years - incidentally also because having to see 'a person' made my mental state decline in the months leading up to the appointments.
You haven't imagined industrial injuries and there are good, caring surgeries out there to register with and agree a new care plan. Telephone appointments and video calls are preferred by most doctors for all sorts of reasons.
Clearing up is a little at a time once you've got enough water, meds and protein inside you. That's 70% water. Asking for help when you need it is the kindest thing you can do for yourself
It seems to be across the board. This for eg I was on a motorcycle going 60 or 70 mph. It was the speed limit. An on-coming car (going fast) turned into me. That was the end of looking for a Doctorate and my education going down the pan. When I got my bike back the front wheel had been pushed into the engine so hard it had cracked the case. Years later when I saw a neurologist he said I had a bruise to the brain. But what of my Dr's? I was in pain, my vision was off, I felt dizzy and would sometimes stagger walking. I asked a different Dr for a sick note. "Can you sit in a chair?" "Yes". "Can you hold a pen?" "Yes" Then you're fit for work". Same for my pains that continued for years later: "Nobody has these symptoms so long after". When I was accepted as having big mental problems and I wasn't working because of them, I went to see yet a different Dr for something. I said like two or three lines to him and it was "Why aren't you at work! You should be working!!". Seriously I have no luck. And it was bullying at work that began the destruction of my life, led me to lose my home, garden, family, then off to the psych ward. A bit off topic I guess but there are reasons I do what I do. Add what has happened in these latter years from the 'carers' and maybe you see why I don't want to meet people, especially health professionals.Thank you for your concern. I appreciate it.
Well that was a way to open old wounds.
0 -
WhatThe said:
Those doctors sound dreadful but they are not all like that so keep trying until you find one you like (and who likes you). They do exist. My GP is my main support which is why I value her so much (women are usually nicer).
I avoid people too as they upset me and I can't always manage my behaviour around them. My late autism diagnosis is the only thing that ever made sense. I now know that isolating myself is easier and safer than forcing myself to engage with people I don't like or trust to understand - that's pretty much everyone.
I consciously have to parent myself on a daily basis to do the basics by asking myself if somebody else is going to come and do whatever it is for me. That is my post-depression strategy anyway
It's interesting you say that. I think I should ask it as it's own thread - how can I say I need prompting from another person when I do my best to avoid interactions with people. It's hypocritical over many of the Questions on the Form. Since this thread seems to have dwindled too.
1 -
Hi again @NoOne - remember it's about the help you need, even if you don't get that help, or as in your case, this would be very difficult for you due to you problems. So it's just imagining the help you need even if you don't get it for whatever reason. You're not going to get that help any more than I do as I also live on my own, so don't worry about that.
1 -
Hello NoOne
It depends on what you mean by "I do my best to avoid interactions with people" is it people you are unfamiliar with or is it every person friends and parents/brothers/sisters/close relatives also?NoOne said:
how can I say I need prompting from another person when I do my best to avoid interactions with people.They could prompt you by text or some other remote device?Also it is not the prompting you get that is being assessed but it it the prompting you need that is being asessed.Just a few thoughts.Nasturtium0 -
chiarieds said:Hi again @NoOne - remember it's about the help you need, even if you don't get that help, or as in your case, this would be very difficult for you due to you problems. So it's just imagining the help you need even if you don't get it for whatever reason. You're not going to get that help any more than I do as I also live on my own, so don't worry about that.
At the moment that's too difficult for me to understand
Plus I did just post it as a Thread.
0
Categories
- All Categories
- 14.9K Start here and say hello!
- 7K Coffee lounge
- 81 Games den
- 1.7K People power
- 100 Announcements and information
- 23.2K Talk about life
- 5.5K Everyday life
- 271 Current affairs
- 2.3K Families and carers
- 855 Education and skills
- 1.9K Work
- 501 Money and bills
- 3.5K Housing and independent living
- 996 Transport and travel
- 683 Relationships
- 72 Sex and intimacy
- 1.4K Mental health and wellbeing
- 2.4K Talk about your impairment
- 857 Rare, invisible, and undiagnosed conditions
- 916 Neurological impairments and pain
- 2K Cerebral Palsy Network
- 1.2K Autism and neurodiversity
- 38K Talk about your benefits
- 5.8K Employment and Support Allowance (ESA)
- 19.2K PIP, DLA, ADP and AA
- 7.5K Universal Credit (UC)
- 5.4K Benefits and income