by Simone 21st June 2012
Carers’ week here once again: In sickness and in health and how true are these words. That time has come round again already I think to myself.
What has changed since last year in my life? How much more help have I received and have I had a break? I am sure you know the answer to that.
A BIG NO! NO!
When my daughter was at school life was a little easier and I had more time to do things for the family and myself. I had more hobbies and time to myself but as she got older I had to spend more time with her. Not only to teach her things but also to become a friend. You have to be there constantly to support them in so many ways and tend to put yourself on the back burner. It is true to say life has been like being on a roller coaster. Caring is never a smooth run.
It is a combination of ups and downs but in the last ten years I would say more downs then up as everything in my life slowly broke down. There is the joy of love which my daughter gives me every day but even that at times isn’t enough to keep even me positive. I have seen myself sink often but perhaps I am lucky that I have managed to pull myself up again. Not once but over and over again being left with little choices in life. I remember the many chats I have had with other carers so desperate at times for a short break which never comes or a little extra support. This isn’t right and so many say what a wonderful job we do. Those words are not enough for the many of us any more.
If I have to be honest it has been a lot of hard work and becomes harder as your child then becomes an adult and I am lucky by the fact my daughter hasn’t got a physical disability and is able to do some things for herself. In earlier years my older daughters used to help and I managed to work but as time passed and they moved on I had to stop working. Money became short and we didn’t have so many treats or holidays.
I had to forget going to the hairdressers as living on one wage there wasn’t enough with today’s prices. Very few options were open to me and in our case we finally found out my daughter was wrongly diagnosed. So started a bigger journey to advocate on her behalf which made life even more stressful but little choice as if you don’t take this on there is no one to represent them. This has taken four years from my last carer’s assessment. To finally find out that my daughter is not entitled to help or I a carer’s assessment as she is “not under their criteria”
Social Services have been hit by many government cuts and that is a bigger problem. So many carers are struggling alone.
Then I come across an article of how David Cameron supports Carers yesterday. How is he supporting carers?
The changes they have made to the current Welfare Bill is not supporting Carers as many disabled may end up losing their level of benefits. I also worry about my daughter’s future. Some carers will lose their carers allowance as they are changing the Welfare System and much of the new assessments will not cover things from a disabled point of view.Yet I guarantee you we will still have to help our children or whoever we care for.
I have learned so much this year about different conditions of disability that I know how hard it is when so many are in pain or sick. In fact we become the experts that are not valued. But who cares for Carers? When I am sick I still have to wake up and do my normal day. There is no one to take over.
At times the stress becomes unbearable but there is nothing you can do but keep going and we all ride the storm.
When I have some free time years ago I managed to go to night school which gave me a break from caring and gave me another interest. I also enjoyed gardening and poetry. As years passed I had to stop gardening. I also stopped working. I stopped sewing and stopped going out with friends. Sadly as the years passed my marriage broke up too but we still live together. Financially it was impossible to split and I couldn’t get the help I needed.
Slowly as more time passed I was to see the loss of many friends and a distance between myself and family life. That is not necessarily blaming them as they all work and have a busy life and hard for them to understand my life.I saw less support given from the GP practice and now there seems barely anytime to even chat. So many visits to my local MP’s over the years didn’t bring about the support I needed. Now I see them as a waste of space.
My health has suffered badly last year as stress levels got worse and finally I even tried to have four weeks counselling. It helped to talk to someone as by this time I was left without a friend to offload to but in truth life was the same.I had to manage alone. Being left with little choice about what I desired to do with my life. All of this for only just carers allowance and I do a full time job. I have felt the loneliness many times but it passes as I have not had a relationship for many years and my husband’s life similar. Thankfully he supported us financially and I always had food on the table.
I finally joined disabled or carers groups that have been fighting against the cuts and this too has helped to make me feel as if I was doing something. It is also a good way to find out what is happening as what affects those with a disability also affects carers.At times though one misses adult conversations and although there are social sites not many people actually write as friends. Most nights I am out taking my daughter out as she is 24 years of age and still has no friends and can’t travel on her own. The disabled groups are not suitable for her and like many other disabled doesn’t want to go. She just wants to mix in society.
Her disability being milder but she still needs my support. I take her to karaoke which she loves and we meet a lot of people but not necessarily make friendships. However it is not a choice I have and it is not the same as me doing what I want with my life.. I can no longer go out with friends as I have none left to go out with. Lol………but I am not miserable and have kept myself busy. There is little time.
I feel I have been forgotten about and have no support but now I am trusting in change as my daughter has a legal case against her first doctor who has now passed. My daughter can’t go to a pub alone and I wouldn’t want that she too needs someone to chat to and would not be safe walking the streets alone or going in a pub when sometimes we find a few drunks.
Over a year ago I started blogging and find this is a good way to off load and also feel as if one is fighting for change. Sharing real life stories makes the public more aware and who knows it may help to bring about the change carers need. I have seen more carers’ blog this year and many disabled too. We have seen little change and little support. I read that we may get respite and more breaks but I will believe it when I see it as my last year’s letter to the PCT didn’t bring about any change or a break for me and others.
Now with the sad loss of the NHS it may bring about even less help and more cost in the long run to Carers. I am still hoping there is still time to stop the ruin of our NHS. I don’t like the changes government has made.Health Care should stay free at all times and is so vital to disabled and carers.
I have been caring for 24 years and still waiting for a break. I don’t want government just to talk about Carers rights when it is Carers week. David Cameron may seem as if he cares. I want action to be taken so I don’t feel as if I am always on a rollercoaster.I deserve some rights. I deserve more support and I deserve to have some money in my pocket for all the caring I do.
Reality of life is that I can see I will struggle with old age as I have no savings of my own. Next year I will be 60 years of age. I have two other daughters which I can not help either. Or help them pay for a wedding if they decide to get married. One daughter I have not seen for several years as she can not afford to come down and I would have to stay in a hotel. My family who live abroad makes it harder for me to see them. We only have one wage coming in and I am in a broken relationship therefore not the same anymore.
I drive my daughter everywhere yet she gets low mobility. My car is getting older and this year we have paid well over £1000 for it to be fixed and soon may need a new clutch.I also had to pay for dental work which was around £700 and I don’t earn.I have become so tired that there is no choice I must somehow have a holiday and use the little savings that are there. Sadly my husband has been made redundant too and I am still waiting for my bathroom to be done and have no shower.
I will not be able to afford great holidays on my retirement as I will only have my state pension. I have no life insurance as we could no longer afford to keep it.After 24 years of caring I would have liked to have had something for myself and increasing the carers allowance to a substantial amount would have helped. So I am able to have something for myself. So I can afford to have my hair coloured or just a short holiday when I need that break.Governement must bring about change and not just talk about it.