Needing Personal Care is Ruining My Life, you too?

Lucy411

Hi All,

I've been wondering whether to post or whether it's too negative but I figure if nobody actually talks about it then there could be loads of people in the same boat as me but not speaking out. Looking at it more positively maybe this community could help me see my need for personal care in a positive way or give me ways to cope.

As the title says, needing personal care is ruining my life! From the age of approximately 11 when I asked to use the loo in school and I would get this, sort of annoyed but it's my job so come on lets get it over with look. I'm now 34, people's grudging help has left me not able to use the toilet when I think people are waiting for me. I'm awaiting a diagnosis for PTSD which was originally thought to be shy bladder. I'm fighting Social Services for a 24hr care package which I don't want but have no choice as I need assistance with everything. I want to live by myself and be able to do everything for myself but Social Services and some OT's make out I'm just being lazy. I'm not and OT's and physios are now backing me up, 5 years later. I'm frustrated and damaged. I don't want people in my home but to live in my home I need them. Hourly calls don't work as that just increases the, 'I have to do xyz in an allotted time frame', thought process. I honestly don't know how to live. I have two new PA's due to start, lost my last one, who was with me for two years, due to her own health problems so have been back with my parent's since then and all through lockdown. I dread training new people, I can't relax and shake, get constipated because I can't relax, you get the picture, maybe I'm being too honest! Each person I have ever had, feels like that guest who you've had a nice evening with but now you want them to leave so you can use the bathroom, put comfy PJ's on and go to bed. I was born with Cerebral Palsy so I've never had this freedom but I want it and can't understand why some professionals think it's only laziness stopping me.

I'm sick to death of my need for care ruling and ruining my life. Is it or has it been the same for anyone else?

I've just finished Alex Brooker, My Disability and Me. He visited a Scope helpline centre and I couldn't believe that Social Care was so far down the list. I know many people are lucky and don't need personal care but plenty do. Am I alone in thinking like I do? I've been asking for help with my mental health for the past 10 years with most saying my situation is too complex for them to treat, doesn't do wonders for my self esteem either! I've been on the waiting list at my local mental health hospital for over a year but the waiting time has just increased to at least another year due to COVID-19. I also don't have much hope that they can help me anyway at this point, having being knocked back so much. I'd feel better if it was a disabled psychologisist in front of me, maybe that makes me a hippocrite?

Please get in touch if you feel you have anything to say, especially if you can relate to what I'm saying. I wouldn't wish this on anyone but it would be nice to feel less alone.

I really don't expect anyone to have the answers but feel I have to ask, how do I live my life and not just exist???

janer1967

HI @Lucy411 Welcome you have come to the right place.

I dont have any answers for you and I cant relate to your issues but I am sure there are other members here who are in a similar situation.

I certainly feel as a disabled person we have to fight for our needs to be addressed by society  and it is a hard battle.

Have you considered employing a PA privately maybe they could meet your needs more

I am sorry to hear you are waiting for mental health support does your GP not give you any support

I hope you hear from other members who can share theirt experience with you 

Lucy411

janer1967 said:

HI @Lucy411 Welcome you have come to the right place.

I dont have any answers for you and I cant relate to your issues but I am sure there are other members here who are in a similar situation.

I certainly feel as a disabled person we have to fight for our needs to be addressed by society  and it is a hard battle.

Have you considered employing a PA privately maybe they could meet your needs more

I am sorry to hear you are waiting for mental health support does your GP not give you any support

I hope you hear from other members who can share theirt experience with you 

Thanks, no idea what I could ask the GP for to be honest.

leeCal

Hi @Lucy411 I can’t help with most of what you’ve said but my local Gp has a counsellor attached to the surgery who gives up to six sessions free. Also it seems that without a referral from the Gp you can’t get far with the mental health team in my experience. I know that counselling may not be enough but it may take you nearer to what you feel you need.

All the best and try to stay positive, I have a son with cerebral palsy and he’s been very down lately due to isolation and his condition. 

Lucy411

leeCal said:

Hi @Lucy411 I can’t help with most of what you’ve said but my local Gp has a counsellor attached to the surgery who gives up to six sessions free. Also it seems that without a referral from the Gp you can’t get far with the mental health team in my experience. I know that counselling may not be enough but it may take you nearer to what you feel you need.

All the best and try to stay positive, I have a son with cerebral palsy and he’s been very down lately due to isolation and his condition. 

Thanks @leeCal I've already had the six sessions. They didn't really have a clue. I hope your son feels better and I haven't bummed you out too much. I'm naturally positive but struggling at the moment.

janer1967

Hi again you could ask your GP for more support with your mental health and that they chase up the mental health hospital to see you 
Also as mentioned above may help to see a counsellor or take up some online therapies

Take care 

Lucy411

janer1967 said:

Hi again you could ask your GP for more support with your mental health and that they chase up the mental health hospital to see you 
Also as mentioned above may help to see a counsellor or take up some online therapies

Take care 

@janer1967 wary of online as blew a lot of money on them when I was in my twenties trying self help. If you know of somewhere I could get recommendations then please let me know. Yeah I suppose getting the Docs to chase stuff couldn't hurt, thank you. I feel like I'm the odd one out for feeling this way though.

janer1967

You are not on your own I am sure many others feel this way too 

It is hard to recommend when I have no knowledge of your local area which us why I suggested your GP or maybe try MIND charity or adult social services 

Lucy411

janer1967 said:

You are not on your own I am sure many others feel this way too 

It is hard to recommend when I have no knowledge of your local area which us why I suggested your GP or maybe try MIND charity or adult social services 

@janer1967 Mind won't or can't help as I'm technically under the hospital. Will try the GP again, thanks. If you hear of anything that could help let me know.

chiarieds

Hi @Lucy411 - As far as your mental health issues go, it's discouraging to have read the last few months that so many people on Scope don't receive the support they need as their issues are also described as 'complex.'

I'm sorry Mind proved unhelpful, but you might consider the Richmond Fellowship, another charity that helps. See: https://www.richmondfellowship.org.uk/    & hoping their help might be available in your area.

There is also Rethink: https://www.rethink.org/

Perhaps looking at PTSD: https://www.ptsduk.org/

Hope some of this helps, & thank you for your insight in sharing your story.

Lucy411

chiarieds said:

Hi @Lucy411 - As far as your mental health issues go, it's discouraging to have read the last few months that so many people on Scope don't receive the support they need as their issues are also described as 'complex.'

I'm sorry Mind proved unhelpful, but you might consider the Richmond Fellowship, another charity that helps. See: https://www.richmondfellowship.org.uk/    & hoping their help might be available in your area.

There is also Rethink: https://www.rethink.org/

Perhaps looking at PTSD: https://www.ptsduk.org/

Hope some of this helps, & thank you for your insight in sharing your story.

@chiarieds, thanks I will check them out. I live in the West Midlands.

Richard_Scope

Hi @Lucy411
Really interesting and thought-provoking reading your post. I live with quad CP and although I don't require personal care, I have a small insight into what you describe. From an early age, I learned to hold going to the loo for hours because I always felt it was a burden for people to help me. There were hardly any accessible toilets at that time either. To this day I don't hydrate enough so, I guess it stays with you.
Over the years I have been involved with all manner of therapies (not for the toilet issue) and what I've discovered is that you have to really be open and not be a bystander. This took me years, I thought it was a load of rubbish and told many therapists that too!
Bladder and Bowel UK is an organisation that I've recommended in the past. They might be worth getting in touch with?
If you want to talk things over let me know

Lucy411

Richard_Scope said:

Hi @Lucy411
Really interesting and thought-provoking reading your post. I live with quad CP and although I don't require personal care, I have a small insight into what you describe. From an early age, I learned to hold going to the loo for hours because I always felt it was a burden for people to help me. There were hardly any accessible toilets at that time either. To this day I don't hydrate enough so, I guess it stays with you.
Over the years I have been involved with all manner of therapies (not for the toilet issue) and what I've discovered is that you have to really be open and not be a bystander. This took me years, I thought it was a load of rubbish and told many therapists that too!
Bladder and Bowel UK is an organisation that I've recommended in the past. They might be worth getting in touch with?
If you want to talk things over let me know

Hi @Richard_Scope, thanks for reaching out. Not really sure what to do. I went to a workshop for shy bladder years ago which did help but when it came to practising in public the lack of accessible loos stopped me from progressing.

Richard_Scope

The lack of accessible loos is a complete pain! It's worth persevering with at home.

Lucy411

Richard_Scope said:

The lack of accessible loos is a complete pain! It's worth persevering with at home.

@Richard_Scope, how do you mean? Short of new technology becoming available to help, I'll always need someone and don't want to be trapped at home.

Richard_Scope

I meant continuing to practice when you are at home. You absolutely should not be trapped at home!  Have you tried these apps?
Changing Places Toilet Finder
Wheelmate
Accessaloo

Whilst not perfect hopefully, it will give you a few more options. 

Lucy411

Richard_Scope said:

I meant continuing to practice when you are at home. You absolutely should not be trapped at home!  Have you tried these apps?
Changing Places Toilet Finder
Wheelmate
Accessaloo

Whilst not perfect hopefully, it will give you a few more options. 

thanks @Richard_Scope, unfortunately Changing Places don't solve my issue. I need a loo with static grab bars on a wall next to them. Appreciate your thoughts though.

Richard_Scope

The same as me, I have used a few changing places toilets and I find them incredibly awkward. I always seem to lean on the flush mechanism on the back of the actual toilet.
The other two apps are fairly useful though.

mum1

hi love the post Lucy, it’s helped me recognise that toileting is not plain simple for those who need help. My daughter couldn’t give a ****- pardon the pun lol. But being different myself I am much more reticent in discussing disability issues with non disabled people. I think it’s just how we are and accepting it is part of the solution. PA’s wouldn’t be PA’s if they didn’t know what the job entailed, so it’s making the best of a difficult situation, which it seems you are doing. Good luck. 

Lucy411

mum1 said:

hi love the post Lucy, it’s helped me recognise that toileting is not plain simple for those who need help. My daughter couldn’t give a ****- pardon the pun lol. But being different myself I am much more reticent in discussing disability issues with non disabled people. I think it’s just how we are and accepting it is part of the solution. PA’s wouldn’t be PA’s if they didn’t know what the job entailed, so it’s making the best of a difficult situation, which it seems you are doing. Good luck. 

Hi @mum1 thank you, I think you're right. Your daughter has a gift lol.

Lucy411

Richard_Scope said:

The same as me, I have used a few changing places toilets and I find them incredibly awkward. I always seem to lean on the flush mechanism on the back of the actual toilet.
The other two apps are fairly useful though.

I''ll defo check them out. Take care