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.

Caring for the carer.

Have you ever offered "to care" for someone when they don't really don't actually want it? (even if they need it)

If every time you try to help them they say "i'm not a baby" or "give it a rest" even, how long before you are no longer going to offer?Even when you do it, it will be with increased reluctance, hesitation and maybe resentment.Surely this is no good to carer or recipient?...

When looking at things from the patients point of perspective, there can be no doubt that having health issues which require support from a carer (be they family, friend or paid worker) will be, at many times, at best, tiring, and worst, darned right depressing... Seeing this through the carers' eyes shows just how undervalued, ignored and imposed a carer can be. Neither situation is perfect!

Without support, space, time or even just a friend to cry on, carers risk losing their identity, a sense of balance and place, and the ability to care. The loss of any of these is not worth thinking about.

Carers need care too.... What can you do to help?

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.