The one thing that’s hit home very much for me recently, is just how many unofficial carers there are out in the community, doing their bit, day by day, not really realising they are actually carers. You know the ones, the people who pop in past an elderly or disabled neighbour and bring home some shopping, put out their bins, pick up medicines from the chemist, keep an eye on who rings the doorbell, makes tea and coffee, along with sharing snippets of their own news of the day. It’s just something some people do..
They say that if we need anything done, we should always ask the busiest person we know. Busy people tend to prioritise, know what’s not important, and is the one who is most likely to make the time to help out in an emergency.
I have mum at end stage dementia at home full time, paralysed and doubly incontinent, and a special needs adopted teenager that needs 24/7 support too, as well as his struggling siblings. I also work when I can, and run the blog/s when I have time. When dad died a few weeks ago, it was me who had to run around, organise the funeral, celebrant, flowers, driving 5 hour round trips to and from where he lived to sort out the death certificate, pay the funeral director, pick up the ashes, and then home and work almost all night seeing to mum as she’s awake till 3-4am just now, the boys, and catching up with my own sadly reduced paying work too. It was exhausting.
My running has had to stop as I’m often up so late with mum, and I have few carers as I just don’t trust them enough. ‘Professional care,’ for dementia, is lacking in care in the industry for end of life. Seriously, the things I’ve seen so called professionals do……is for sharing when mum has moved on. I’ve put on weight because I’m not running and my hobbies have had to be sacrificed to find the time for everything else. It’s a vicious cycle that carers fall into and I’ll have to build up my running again, from the beginning, when mum is gone. I loved it, so it’s been a huge loss of something that was so hard for me to build up. I’m not a natural runner, so it took months of effort to be able to run. The added weight makes me feel rubbish, so on and on it goes, in a never ending cycle of needy people needing my time.
My health has suffered too. Less exercise means my diabetes is harder to control, and the depressing issue of added weight doesn’t help. I never have time to see a doctor for myself, as that’s another sacrifice I’ve made over the last few years.
Do you recognise yourself with anything at all that I’ve said here?
If so, you are a carer.
This week is:
There is a lot of information on carersweek.org
61% of carers surveyed said they had suffered ill health as a result of caring. The sad truth is that carers often neglect themselves, because there is no other choice.
The focus this year is getting carers connected.
They recognise that caring can be hard, and affects every aspect of someones life. Family, relationships, finances, work and health often all become difficult to negotiate. It’s even harder that people who have never had significant caring duties, really do not understand, at all. Even paid carers don’t understand. They go home at nights, have days off, go on holidays, and don’t have the 24/7/365 commitment.
There are huge rewards to caring, like seeing a family member contented and emotionally supported during their difficulties, protecting them from harm, but finding the right information and help is really very difficult, and harder to access than it should be.
With up to 6.5 million estimated carers in the UK, they are not all with caring duties as extensive as mine, but they are carers none the less, and need someone to talk to.
Non carers tend not to understand, so the focus is often on connecting carers, by listening to the experiences of people who live the life. There is also a huge difference between the carers in the community and the ones who visit care/nursing homes. It’s not a one size fits all problem.
Being connected can mean:
- Directly with other carers as a support.
- Online forums and support groups.
- Help with benefits and covering the extra costs of looking after someone who needs care.
- Getting help with being recognised as a carer, especially for dementia, as the families looking out for elderly and infirm relatives or those with dementia, seem to be in a black hole compared to those with the more traditional medical disabilities.
- Breaks from caring.
- Technology to help, such as Telecare alarm systems for windows, doors, pendant alerts, fall alerts and much much more.
If you think you are a carer, even a young carer, look for any events in your area that help you become connected. If, like me, you prefer online, find a reliable group that is responsibly run and we soon find ourselves within a larger network of people in the same situation as ourselves, to share experiences with, and often ask invaluable advice.