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We want to hear from you: please tell us about your experience of the online community.

Having a carer

jaja

Hello

I'm new to the forum but feeling brave so thought I would ask a question. I wondered if anyone would share their experience with me.

I have a disability because I became ill. I found it quite difficult to accept the disability and while I have worked through most of it and received the help I require I have been struggling the idea of having a carer. Is there anyone else that feels like this?

I can sometimes take care of myself in terms of personal care but this means I use all my energy and mobility for this and then crash and make my symptoms worse. There is also a lot I can't do. I have realised that my current way of doing things means that I am not living and it is making my situation and health more difficult.

Given my new insight, I thought I would ask if people could share their experiences. I'm not sure what I want to know really. I feel mortified at the thought of someone helping me bathe. How did others feel or deal with having a carer?

And I know this is strange but what do they do...I mean, I know what tasks they do but what happens? Does that even make sense?

If you got this far, thank you for reading.

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Comments

Roddy

Hi @jaja Welcome to our community... I have not had a personal carer myself, but I did care for my disabled Son and also my frail & elderly Mother of 97 years, who eventually required more care than I was able to provide (particularly assisting her with bathing etc.) All I can say, is that my Mum never had any reason to 'complain' and neither did I, despite various carers coming & going day & night, and most of them became 'friends.' I can understand why you're concerned though, however MOST (if not ALL) carers these days are highly trained and professional BEFORE they're allowed to care for you in any way. Bear in mind, that your carer will have been chosen specifically to care for your own specific requirements, and you will usually receive a carer of the same sex. Also, if any lifting is involved and/or administering medications is needed by you, then TWO carers are most usually present at these times.If for any reason at all, you cannot get along with ANY carer that's been allocated to you, you can ask for different person until you are satisfied... Finally, please try to remember that carers have 'seen it all before' and have dealt with numerous people besides yourself, and they have training or a natural ability to put you at ease from the moment they arrive... A call to your local Social Services would be a very good idea, as they will assess your needs to ensure that you receive what is best for you. Times of visits can also be arranged to suit YOU so that you're not bothered when it's inconvenient...

jaja

Hi Roddy

Thank you for the reply and warm welcome. You have given very sensible advice based on your considerable experience.

I am sure my question is more about me than the carers.

Thank you again.

April2018mom

I have no experience with carers. Thanks for the advice. How do I find a carer trained in mobility issues?

poppy123456

HI,

Yes, i was just 38 when i had my first carer, who came to help get in and out of the bath and to help me wash.

I have to admit that at first i hated it and i mean really really hated it but i got used to it, eventually.

I was assessed by adult social services and a care plan was written. The social services then found a carer for me.

Whether or not you'll need to pay anything towards the cost of this will depend on your circumstances.

Peteofpeth

Hi I have a disability that renders me to have a carer to help me with getting dressed and can depend on him for a almost every thing. Personal care can be embarrassing I found. My GP contacted the NHS adult care services to were I was assessed for bathroom equipment and mobility equipment, I got a power bath chair along with other bathroom equipment the bath chair now means I am able to bath unattended what is a big boost. They supplied a wheel chair to. So they may be able to help, worth a try.

poppy123456

You no longer need a GP to refer you for a needs assessment. You can do this yourself, it's also much quicker doing it this was than going through your GP. https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/needs-assessment

jaja

Hello @poppy123456 and @Peteofpeth

I hope you're having the best day.

Thanks for replying and sharing your experiences and advice. I really appreciate it.

While I'm sorry because it sounds like you both found it difficult to have carer initially, I'm glad I'm not alone in the way I feel. I think I am going to hate it and find it very embarrassing.

I have the electric bath seat and grab rails etc. In regards to personal care the bath seat does help but I am exhausted afterwards and experience horrible symptoms. I am unable to bathe as often as I need and can't do everything necessary hence I'm considering a carer.

I am worried because A) my disability can be fairly invisible a lot of the time. I am most definitely not okay but can look it and

i don't think I could cope with a carer everyday as I think it would cause exacerbation of symptoms. I do need a carer daily but I'm not sure I would cope with that. I don't suppose you are familiar with this situation. Do you have a carer everyday or is it necessary?

Thanks again.

debbiedo49

I used to be a carer for people with various health issues for a number of years. Every person has different reasons why they need a paid carer in their lives. The most important thing is that you get someone who is a good match for you and who treats you with respect and dignity.
In the cases where I have been involved in support with personal care, I can assure you that carers are supposed to do everything to help you feel comfortable. This should take place after a care plan has been agreed so you are in control. I considered it a privilege to be allowed to help some folks with personal care. People soon let you know if you are doing the wrong thing usually and if you enjoy your job and are doing it correctly then you are rewarded with job satisfaction and good relationships with those you are assisting.
That said, me having s carer? Well that’s a whole different ball game. It’s hard for me to comprehend that idea at this point in time but I know that’s me being stubborn. I don’t need one for personal care right now but I could do with one for travelling. I’m just not there yet.

It is a minefield and there are many care agencies out there now.
You should look into it thoroughly in your area and find out what’s on offer if you can,

good luck ?

jaja

Thank you @debbiedo49. Thank you.

pollyanna1052

Hi jaja, I do have carers and wouldnt want to be without them. There are the odd days when my 2 ladies can`t cover each other`s absences, then my hubby has to do my personal care. He did it by himself for 11 years and I wasn`t happy, as both my condition and his RA progressed.
He was very against getting outsiders in, but saw reality eventually.
So what do my ladies do and how do I feel about it?

I am paraplegic with useless bladder and bowels....so I have a supra pubic catheter and unpredictable bowel movements. These are my idea of the worst bits about my disability. My carers deal with whatever happens and I dont feel embarrassed now.

The first thing you need is an assessment from Social Services. Even if you decide against their findings in some or all of their ideas, it will help you understand what is available and what is a very `normal` way of living for many disabled people like me!

Once you`ve had the assessment, you can think about how much input you need from a carer(s).

I got a recommendation from a wheelie person I knew and shared her carer. That lady has been with me for over 8 years now. She initially came for 3 hours a week. Now she does 22 hours and 2 sleepovers. Hubby and I love her and treat her like family.

My other carer does 6 hours a week, plus cover for when the other one is not working. Both ladies take me on holidays, to give my hubby a break.

You could use agencies, but they come at a high price, so that needs consideration. Direct Payments pays for all my care. You have to be means tested for that.

I firmly believe carers have made a massive positive difference to my life and urge you to find out more. Can I help with any other questions?

Best wishes xxx

jaja

Hi @pollyanna1052

Thank you for your reply. It is so helpful. I'm glad you have a good experience with your carers.

I get a little anxious around this subject. Social Services weren't very helpful when I approached them a few years ago. I know I need to do so again and will, but I'd like to have an idea of what I need before I do. I don't think the type of condition I have helps.

Thanks once again.

Chloe_Alumni

Hi @jaja,

I can understand your hesitations around this, especially if you have been knocked back before.

I would advise referring yourself, even if it is to gauge what you ore entitled to.

Also, thank you for your great support on the community today, it's greatly appreciated

April2018mom

This is a favourite subject of mine.
I could literally write a article on this topic. We have discussed respite care for my son. He is a paraplegic with serious bladder issues. I have talked to people and researched my options. For now I am inclined not to apply but may reconsider things in the future if our circumstances change.

jaja

Thank you for your comments @Chloe_Scope and @April2018mom

Chloe_Alumni

No problem @jaja! I hope they are able to help and please do keep us updated

pollyanna1052

Hi again. The kind of things you may need help with are;

getting out of bed
washing/showering
dressing
cooking
cleaning
outdoor activities
holidays (I get a respite fund)

All these things can be done more safely and in a better timely fashion, with the help of a carer.

Can I offer any further help?
xxx

April2018mom

What do you require support with?

These are the common tasks:
Shopping
Cooking
Filling out forms
Cleaning/ironing
Vacations
Medication
Gym/maintaining fitness
Dressing

Research care companies online. Remember there are also equipment and aids that replace carers too. We use my son’s DLA money to pay for adaptive equipment that helps him remain independent.

jaja

Hello @pollyanna1052 and @April2018mom

Thank you for your replies. They are very useful.

I am very surprised by some of the things that a person can receive help with. i thought it was only personal care ie bathing and reheating ready meals. The problem is that even with help I couldn't manage bathing every day and I have numerous allergies so ready meals don't work for me which is what I am offered where I live.

I struggle with a lot of the things listed and have been paying for things like cleaning etc.

I do have a couple of further questions which I am sure you can answer but need a little time to think about how to word them given we are an open forum.

Kindest regards

Chloe_Alumni

That's not a problem @jaja, we will be here whenever you have any questions

pollyanna1052

Hi Chloe, is it possible to send private messages. Care can be a sensitive topic to post openly and I would like to help jaja if I can. Thanks x