Caring has been like a rollercoaster

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.

 

Comments

Dear Simone I read your Blog

Dear Simone

I read your Blog and I can relate to how you are feeling since becoming my daughters carer and giving up my job I have become isolated like you although my daughter health has improved since taking her medication. She is now able to be a little more independent but that does not take away the worry that she may have a rel asp or stop taking her medication. My husband works full time so I spend a lot of time on my own as I have lost contact with my friends and since I stopped working I have lost my confidence as well. I am not the kind of person to ask for help but there were times when I would of loved a chance to go out dancing or be able to go to the cinema or just to be able to have a chat like you I know how lonely it can be caring for your daughter with very little support or financial support.
There does not seem to be anything in place to help carers afford the basic living cost. If anything happens to my husband I fear I will become homeless as I am not even sure if I would be able to claim housing benefit. I do hope you get the chance to have a break if you need to chat just send me a message my email denisefgn@gmail.com

No amount of fighting has

No amount of fighting has made any difference. I have written to so many people, complained enough but no one actually cares.............. I am thankful my daughter loves me so but now I am nearly 60 I am so afraid for her life.........

They are not listening to a

They are not listening to a word we say but I for sure will not stop trying to make a difference. our voices go unheard, yet our strengths are so great. You become strong for the knocks you must accept in life as there is so little help out there.

Simone, My deepest respect

Simone,
My deepest respect goes out to all those who care. You are right carers are a desperately under appreciated group of people who often work under extreme stress for prolonged periods coping with situations others can barely comprehend.

A I read your post I cannot believe how much your life reflects my own. Even down to the marriage breakdown. I sometimes think that people looking in from the outside think I just sit on my backside feeling sorry for myself, but they have no clue how hard life is. Like you I work hard to keep the home running on as even a keel as I can manage, but you're right it is such a roller coaster. I've even become terrified of the postman for the bills he might bring or the dreaded forms he might leave me.

There was no defining moment when it all went downhill, although my husbands nervous breakdown and subsequent job loss was certainly a low point, but somehow I found myself cutting back and cutting back until finally I looked in the mirror and realised I looked like a tramp and lived in a house full of neglect, because I couldn't afford the repairs.
I couldn't afford clothes or shoes for myself, to keep my car on the road, to pay my bills or have a break. It's awful when the stock answer to your kids request for pocket money is 'I just don't have it.' Our minimum subscription to Sky Gone, House insurance Gone, Life Insurance Gone, Sunday worship Gone, Savings Gone, Decent wage Gone, a social life Gone, Friends Gone. Like you I'm tired of just existing.
Hiding from the gas man is not my idea of living.

It's not difficult to see why so many of us plummet into depression when no break is in sight and every option available to us is either taken away or limited because of funds. I used to blame myself. I thought perhaps I was bad at managing money or coping with life. I am guilty of both of course. It's not hard to be bad at managing money when there isn't enough to go around and coping with life with no support is soul destroying.

If money is tight the utility companies penalize you by adding late charges or worse still, put you on tariffs that ultimately cost you more! I barely finish paying one quarter before the next drops through the door. So existing is all I do. Hope and the kids are all that keeps me going now. Hoping that something will change, a small wind of fortune will blow our way or that the good days will one day outway the bad. It remains a constant struggle.

My only saving grace of late is that I'm beginning to attempt repairs myself. My dreadful loss of confidence through all this, as prevented me from trying to repair major things in case I did some damage, but one day I woke up and thought 'It's broken anyway. What harm could I do?'

Since adopting this new Mantra, I now service and repair my own washing machines, tumble dryers, dishwasher, car, do my own plumbing, electrics and major household repairs. If it can be looked up in a Haynes Manual or found in an exploded diagram on the web, I'm all over it. Some jobs take quite a while of course, I have to fit them in between my caring and also put by each week until i have enough for a new spare part if needed, but for me it's better than the appliance sitting there doing nothing.

Excuse the generalization; and I know this is not the case for all, but I've found Mechanics/Repair men can be the worst for taking advantage, especially when it comes to women. I've been victim to the 'Sharp intake of breath and Shaking of the head' on many occasions, but I've decided that their is so much in my life that I seem powerless to change, so perhaps I can affect something within my power.
Yesterday Is a prime example, I repaired the electric window on my car that Ford told me would cost £300 to fix! The window used to fall into the door when it was opened. It turned out the clamp that holds the window had fallen off and was inside the door. It cost me nothing and took me 20 mins to repair! (It's been broken for 3 years because I knew I couldn't afford to fix it.)

My whole house is awash with items I've left untouched because I have had a quote and cannot afford it.

My new found confidence has without question, saved me thousands so far and I'm only six months at it. I'm still full of frustration for being starved of both time and money to get the whole job done quickly, but when I finally get a job completed and stand back and realise how long I've been without, the moment of joy and achievement is all the richer knowing I've done it myself and how little its cost me compared to calling someone in.

My home remains chaotic because the snatched moments I do have; that should be devoted to chores, now go on repairs. I could view it as just another straw to break the already loaded donkeys back, but I don't. My life remains a constant struggle, but in the despair of it all, I've found a tiny flicker of the old me. Something I can finally influence without having the option taken away or the door slammed in my face.

Don't get me wrong I'd love 'A Man Who Can, but for now it has to be 'A woman Who Does.'

I have only just seen your

I have only just seen your comments. Something must have gone wrong and I missed it. I think many of us are indeed struggling but the struggle of nothing changing nothing for us is depleting and finally the energy just goes.

I have seen myself go up and down for years but nobody seems to care and I have no one who cares because in the end you are on your own..........I am lucky to have a lofvely daughter who appreciates everything I do but she too deserves a life but the system fails us each and every carer and every disabled. That is how I feel.

Well said Simone.

Well said Simone.

Well said, Simone. I know a

Well said, Simone. I know a lot of carers feel the same way. Fine words from the Government are all very well, but its actions and not words that will make a difference.

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