How do I think carers should be supported?

I’ve spent some time on the blog telling you what I’m not happy about from a carer’s perspective. Now it’s time for me to say how I think the situation could be improved.

There are thousands of people across the country who are caring for others and, without them, this country would be in even more trouble. I’m talking about carers who care for friends /family / loved ones and are not paid for the hours of work they do.

I believe it’s accepted that caring puts an enormous strain on the carer’s mental health and general well being, so how do we protect this valuable resource?

All the current power and control rests with the disabled person at the moment. Whilst I understand the reasoning that this empowers the person giving them the ability to decide how to spend their care money (such as it is) they can choose to spend it on anything, eg CDs knowing that their ‘loved one’ will continue to provide the support needed.

Something needs to be done to empower and support the actual carers.

Quick break for some more of my background ………

A couple of years after Ray had his stroke my mum’s breast cancer returned and then she got secondary bone cancer. (My mum was my rock and inspiration!). At the start of the school summer holidays in 1992 I took her to the hospital for a check up. She was admitted and never came out. I spent every day travelling between our flat in London looking after Ray and Southend Hospital to be with mum. In fact the first time I left Ray alone over night

was to stay at the hospital with her. After she died, we had the funeral and I went straight back to work (I was Head of the incoming year 7 pupils and felt I had no choice – my mum would have agreed!). She was 64 😦

Now my dad was 10 years older than my mum and had been ill for many years and she supported him, sound familiar???? After she died I told him I would telephone him every night and visit once a week.

So there I was, looking after Ray, working full time in a stressful responsible job (that I loved) trying to do the right things for my dad and missing my mum so much. I hadn’t grieved for her, I was brought up to stick on the smile and get on with it. So I did …….. Until the morning came when my eyes would not stop leaking, I pulled the quilt over my head and refused to come out.

I’d reached breaking point, everybody needed stuff from me and I had nothing left to give. Depression had got me 😦

I went to the GP, got the pills, worked out that I needed to regain ‘me’. I managed to pull myself back from that but remember that, at that time, most of my coping strategies were chain smoking and chain eating, if you get the gist πŸ™‚

BTW I spent the next 10 years ringing him every night although the weekly visits had to stop!

Fast forward back to now ………..,

I have been SO close to those anti depressants again. I’ve even got as far as trying to make an appointment to see a doctor (but none were available!)

But I haven’t done it. Even when I have been at my very lowest points I’ve been pulled back.

How? No, who!

Darryl, my trainer, does not just beat me up.

He KNOWS me, he understands what my life is like, listens to what is happening / how I’m feeling, makes me reflect on my thoughts, never judges but helps me plan how I’m going to move forward, ensures I look after myself not just others ……… And then he hammers me!

The last couple of years have been incredibly difficult and I wouldn’t have survived as well without him (more about personal trainers in a future blog)!

So, back to carers.

I really believe carers need something for them.

I’m not talking about a direct money payment. That would get caught up in paying bills, getting things for other people etc. I know cos I’ve done it!

No, I believe that carers need to be MADE to benefit from the provision.

I’d strongly advocate personal training for all carers. It makes you physically and mentally stronger and therefore more able to tackle your caring role and gives you strategies to let go of your aggression (which like me you probably didn’t know you had)

Sadly, not everybody would choose this, although everybody could do it and would benefit from it.

But other things could be offered. Treatments such as massages or facials. Classes in cookery or other interests.

The only criteria should be that they have to be done by the carer!

Yes, it would cost money but, if we improve the quality of life for carers that will have a knock on effect for the cared for.

If mental health improves there will be less need for medication and GP time.

If this was offered to me I would feel that somebody was actually valuing what I do and was caring for me in return.

I’d love to know what you think!

16 responses to “How do I think carers should be supported?”

  1. Gill, you are right in so many ways, my mother too has been a carer all her life, to her parents, my late fathers grandparents, her mother in law, my sister (disabled from birth) and then to my late father (who had to retire at the age of 55 due to health problems and passed away some 15 years later). She has never claimed a penny in careers and I have helped and supported her wherever I can (including visiting my late grandma on a daily basis just so that she and my father could go on a much deserved break). Carers need to feel like real people and not just stuck on a constant treadmill of ‘Groundhog Day’. You are right, they need to have something just for them – a light at the end of the tunnel, a glimmer of hope and ‘me’ time.

  2. So very, very well said Gill. Why do we feel so guilty at doing something for ourselves that the opportunities for doing those things seem to dwindle and the things we loved doing, that made us the people we are, seem to fade into the past? I am only just beginning to realise that I am important, that without me Tony and my Mum would both be in so much worse a state and probably not even here. I have been ‘nagged’ (no, that’s not the right word – encouraged maybe) so much by my counsellor and now my my trainer Gareth and the other guys at the club that I am beginning to see the real me coming through. Although it’s not the same person any more. Opportunities that you have mentioned above would be wonderful for carers, for those who don’t recognise that they are sinking into a swamp which is so very difficult to climb out of without a strong branch to hold on to to give the support needed until they are back on their own two feet again. I do wish the ‘powers that be’ could only see this; that without the 24hour/7 days a week work we do, there would be an even bigger strain on the NHS and the welfare system than there is now.

    Thank you for writing this Gill. I wish more carers could read it.

  3. Gill firstly the more I read your blogs the more I get to know you and understand your situation that little bit more although I will never be able to fully appreciate it secondly sorry I not seen you for ages thirdly what a brilliant idea and another one to add to it would be for general public to volunteer one day a year to care for the person so the carer could spend a day away and relax and the volunteer donates a day trip like a spa day that type of thing so rather than donate money to charity donate a day time and a day trip if everyone did it once a year think of all the days off carers could get P.S your amazing

  4. I can only ekco what I wrote on “Why am I going to see my MP”

    We care for our loved ones because they are our family/loved ones – as I said before the help that once came from the NHS in coming and helping the patient has unfortunately gone – they used to be community nurses – carers need me time, otherwise carers become patients.

    Keep strong, keep focused, keep going.

  5. It’s a good idea. Offering something like that for carers would indeed be rewarding for them & as you say improve mental & physical health. A lot of people would need educating as to the benefits of exercise, working out as dome may think it will just be something else tiring, etc. You’re a convert now but would you have been so keen in the London days? Don’t get me wrong I do think it’s a very good idea.xx

  6. A personal trainer would do nothing for me at all – what I would like is TIME….

    TIME to be me, to do the stuff I used to do – the crafting and sewing classes I used to attend, the painting classes…. The theatre…

    TIME to go and build on my new found love of walking….. I would like to go out and do some of the walks I download from the web or pick up from the tourist information centre

    TIME to jump on a train to York and mooch around the coffee shops and the old buildings…

    TIME to go to a Rod Stewart concert….

    I have a 3 hour window 4 at the VERY most that I can leave Phil… to go anyway takes TIME to join in something takes TIME….

    This afternoon I travelled 7 miles to meet my niece and have a short walk, cake and a catch up chat…. I did not have the TIME to sit with my sister in law for a coffee when she invited me.

    I would really love to be able to do something for myself one day a month without having to worry about TIME….

    I would love and enjoy a spa day…. the massages…. something I did do before I became a carer….

    Phil has stroke fatigue syndrome on top of all his other problems so he never wakes before ten on a morning…. by the time he is washed/dressed/downstairs it is 11 and he is eating breakfast so he never wants lunch until 1
    by the time I get out the door on an afternoon to walk/shop/meet friends it is 2ish

    He can’t be left with a flask as he cannot open it, the thermal mugs with the lids he cannot feel on his lip so I cannot leave him with a hot drink …. he can’t open things/carry things but on a GOOD day he can make a drink using the one cup boil kettle and put it on the trolley and push it through…. IF he remembers he NEEDS TO DRINK…

    I do have a neighbour if she is home and not working shifts she will pop in and make him a drink and also check he is coping with the remote control on the TV… some days he *forgets* how to use it and sits in front of a blank screen :/

    We do have a motorhome and we spend a lot of time in it – which is good because we take a monthly/season pitch with a fab view…. I still have the same short window of time to walk and shop and stuff but VERY limited… But this is also frustrating as it reminds me that I cannot actually go and see things or go places that I would like to go to and see…

    There is no *appropriate* respite….. I am looking forward to moving to assisted living because I will be able to join in a few things including the craft/sewing without leaving the building… plus I will be an hour nearer to the shops/theatre so this means I may be able to actually go to the theatre again….

    I am looking forward to the luxury of care in the same building we will be living in…. so if the lifeline is pressed help is there in minutes and not hours…

    I would just like to be *myself* with out having to clock watch….

  7. I think carers should have whatever they want – so it might be time, it might be a personal trainer, it might be a massage or a facial, I don’t think anyone else should make the choice for them as they have so little opportunity to choose for themselves in any other part of their lives. The one and only criterion would be that it must be for themselves – so they might want money, or time, or support, or “pampering” or personal training – they can have whatever they want, for themselves!

  8. I am “on call” 24/7/365 for my 92 year old mum – she is housebound. Every Saturday I go and get her shopping/do her housework/laundry and errands. She is mentally alert but physically frail. If I want a Saturday off (once or twice a year) its like a military operation as everything has to be done either side of the day I want – food acquired, washing brought home (she has a communal laundry in her sheltered housing) etc. etc. If she takes a tumble, I down tools and go to wherever she is taken by ambulance and I am now a dab-hand at various repairs…the list is endless.

    I cant really take a holiday – there is no one to do her bits for her – its like having a child again you always need to keep some holiday back just in case. I also work 50+ hours a week for two employers, so I dont qualify as a “proper carer”. Even to be put on mum’s carer’s register you have to give the council every bit of information down to your inside leg measurement! So I am one of the invisible carers, of which there are so many. The only time I get is about 4 hours of a Sunday to myself to work my allotment (which I guess to many is a lot of time) – the rest is work/housework etc. etc. My son helps me a bit, but the bulk of it is down to me. I am truly knackered and need a break. There is no point in going to the GP – there is not much they can do and that’s if you can get an appointment.

    Time would be nice and the ability to not feel guilty about doing something for myself, like having a facial/haircut/nails done – being able to relax would be nice.

    Sorry, I’m rambling but I think this has done me good to get it off my chest. Thanks.

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