How having a carer can make things worse....

As most of you will know, my OH had a heart attack last summer adding to his already complex issues, and forcing me to give up work in order to care for both him & my children. This was a very difficult time for us all & on his initial discharge we received absolutely no help from anyone - we managed because the children were all off school for the summer holidays - but it was very tiring.

When the new school term begun the adult care team had finally realised that in order for us to function as near normal as possible some kind of assistance would be required & they agreed to have a carer organised to visit every weekday morning, for about 30 minutes, to help my OH wake, take his medication, wash, dress & join the rest of the world, whilst I completed the 2-hour round trip to do my youngest daughters school run. At first this seemed to help. I would arrive home at just before 10am and find him sat downstairs, with a warm drink, or at the very least, having had a wash & back on the bed maybe watching iPlayer.... Then over the next 3 months the number of different care staff we saw gradually increased, the frequency with which they turned up late (his medication was supposed to be taken between 8 & 9am which is when they were supposed to arrive) or not show up at all also began to get higher, and by the week before Christmas we found that they failed to show up more often they arrived....

What this meant was three-fold 1) Andy was regularly missing a complete set of his medication doses & having to and rearrange the rest of the days tablets to take account 2) Hospital, GP & other appointments were missed or arrived late at & 3) There was no regularity to his days - if I did not go straight home after the school run because of needing to do shopping or something, for example, then Andy might not get up till lunchtime one day, but if the carer showed up, then it might be 8am the next.

We had received a letter from the company providing the care service, asking us what we wanted to do between Christmas & New Year and this made us stop and think about the whole thing. Having sent the letter back saying that we would get by without anyone coming in at all for this period, we managed to function again without the unreliability & frustration of not knowing who & when and if anyone would actually turn up... Okay, this was another school holiday, but sitting down and talking to the children too during this time, we decided that actually there was no point actually having this service. It provided no real support to Andy, or us as a family, indeed it had actually become a bit of a noose around our necks.So we got in touch with both Adult care services & the care provider & cancelled the service.

What this decision has left is a manic morning routine, the need for me to call & check that Andy is awake whilst I am out doing the school run and generally a tiring start to the day. But we are all agreed that it was the right choice to make. It now frees up the carer for someone elderly or frail who does not have the support of a family on hand (as Andy does) whilst saving us the frustration we were experiencing before Christmas of expecting a process to be carried out & finding that it hadn't.



Once more, it proves that you can really only rely on yourself & those closest to you when push comes to shove.

Care for our community... No, just my family please.

I feel very strongly that I should discuss how inadequate the current support systems are for carers who are neither looking after someone elderly, nor who are only caring but are also still bringing up their family, or god forbid (!) working... alongside taking care of either their partner, a parent or someone else.

Through one brick wall after another I have discovered just how many services are set up with elderly care in mind, and find it really difficult to adapt to the needs of a much younger person - someone in their 30's or 40's has very different emotional and psychological requirements to those of a person in their 80's. This is a huge barrier when talking to some service providers who simply cannot seem to get it into their brains that even younger individuals might require personal support etc.
And it doesn't end there.
When asking for support needs to be looked at for the rest of the family, especially as we act as primary carers on a day to day basis, it is taking months to happen - there is nothing in place to help us, to support us, to stop us feeling isolated or stressed out. We know there are options, young carers support, regional carers organisations, but the length of time referrals take to these is painful, leaving my children without any outside support when they could probably really use it...
I understand things do take time, but I also know that I have already given up the one thing which gave our family most of its structure - my work- in order to care for my other half, but we are now reaching the time where if someone doesn't help us soon, somehow, we are going to start arguing more, finding it impossible to be in each others company and generally failing to function as a family in any way at all.

Turning in to a shell of myself

Recently someone asked me what I was doing with my time these days.... I stopped and thought for a second, about to give them a whole long list of of stuff, considering how much of my  time is being taken up with school runs, chasing hospital appointments for my other half & eldest daughter, organising time with my mum and dad, and contacting the various people now in charge of our finances. But then I realised that actually in between these things (which whilst annoying & frequent) don't necessarily take a long time (well sometimes they do - with hospital appointments at Stanmore & Harefield it can take a VERY long time!!) and I am actually left with gaps between them........

I had already started to realise that I was not fulfilling my true self any more, I've long since given up my long held hobbies of singing, playing the viola (anything to do with music except listening) and now that I've stopped working I no long have the companionship of my colleagues, clients or even just the routine of getting up & going to work to help with providing a sense of identity. Not only this but as I've already mentioned, being part of a couple, I am unable to claim anything in my own right - I've been added to my "Partner" .... what a great way of helping to stomp out any chance of improving my self-esteem as a woman. Yet again I feel like I belong to someone - in this case my "Partner" (through no fault of his), but even when it comes to other things, I am So & So's Mum..... once again never just Clare.

I have been very aware that at the beginning of 2010 I was on the verge of going to my GP to admit to feeling depressed, and that whilst I am nowhere near that level now, if I do not find an outlet, some way of being just me, very soon, I am going to become just a shell of myself - which is NOT what I want to do, is no use to either my OH, or my children - I just could not care for any of them in that state. My family need me to be fit and capable, they rely on my ability to help them and I be able to rise to the challenge!

However - and this is now my major problem....

Where once I could ask for help from others - friends to look after the children for a couple of hours so I could go out - I can not do so any more. Our family are either too widespread and unable to help (much as they would wish to) or for whatever reason just don't. There have always been excuses as to why they have been unavailable to babysit - I just don't ask any more.
Ultimately what this translates to is that I either rely on my eldest daughter to look after everyone while I go out (including her father) which considering she herself is out 4 nights a week with Army cadets & choir leaves few spare evenings for her to do so, or entrust the care of my OH in my sons hands, and he is only 15 (almost) and I'm not sure that is fair to do on any regular basis, just so I get an evening out!

So where does that leave things?

Nowhere... really...
Trying to fit something in during the day will not work while we have so many appointments to attend and school runs to do (especially as I have to do them by bus and we ALL know how reliable public transport is) Evenings are out - except in rare occasions - as my family are apparently not good enough to spend time with.

As usual, it's up to me to find some way of holding myself together.... It won't surprise me if I turn to books, my camera & oh yes, writing more..... sorry about that but you have been warned!!

It's been a while...

And I still don't really feel like doing this, but thought I'd better. As many of you now know, several weeks ago my OH suffered a real set-back health wise, and after a no-brainer (considering all the hospital appointments I'm still organising) the decision was taken for me to leave work in order to look after him, the children and out home.
After being back at work full-time for the past 18 months this has been a real wrench, I am going to be completely honest.
Whilst caring for people is now second nature to me - indeed before I returned to work last February that is exactly what I had been doing for the proceeding 10 years, and really even longer than that as my previous work experience was bitty, and only part-time. My oldest child is heading towards 17 now so I'll leave you to do the maths....
Anyway, as I said, the caring bit is not the problem really, what is getting to me is the complete lack of acknowledgement of me.... me as a person, in any way shape or form in my own right.....
I'm back to being someone's mother, wife, carer and nurse again. I'm not me, not just me .... and this has happened in the blink of an eye.... I was shocked - and disappointed.

I don't feature in respect of the government - because I am married to someone who has an existing claim for benefits (disability benefits as unable to work) I cannot claim in my own right - I have to be added on as a |"Dependent" of his....
I am the "Partner" of the claimant when it comes to sorting out our housing/council tax benefits - believe it or now because my name come after his in the alphabet!

All these things combine with the fact that people who once spoke to me (whilst I was working of course) now ignore me, and just build up to increase my sense of insecurity once more. I will not hide from the fact that I was unsure of exactly who I was (even whilst I was employed) at least people did not shun me, blank me, and generally treat me like a second class citizen, such as they do now. As a full-time carer I fill a huge blank in the employment market, saving hundreds of thousands of pounds a year, and yet, I have been ignored, given the cold shoulder by my peers and quite simply treated as if I am no longer worth wasting the time speaking to.

Thank you world.
When you need me at some point in the future, I might just not be there for you.