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Petrified Newbie - Carers UK Forum

Petrified Newbie

Tell us a bit about yourself here.
Hi Everyone

I am so glad to have found this forum Image I'm Sam, 33 happily married to Paul. I have three wonderful children who are my world! Blessed with two boys and a girl, both my boys have special needs, my eldest is not so bad, however my middle child suffers a great deal. We have been with the pead for a long while now, and they have said that he is showing signs of being on the autistic spectrum, they are as of yet not decided on the type of autism that my son has. Over the last 10 months or so my son has been getting progressively worse. He is now struggling with any form of seperation, such as going to school and being away from us, (this is made worse by the fact that I spend a lot of time at my Grans as am a carer for her). His emotions are all over the place right now, he is either really happy, or crying his heart out, he has been having what I believe to be anxiety attacks where his heart races, he gets severe headaches that then result in nose bleeds and I have no way to calm him down quickly. Both my husband and myself also have to be very careful with what we say and how we say it, as what is standard talk to my other two, he just simply does not understand and then cries thinking that we dont love him, that we hate him. It is all black and white to him, with no colour or shading in between. This is hard to deal with as he also has speech and language is also poor. This is being addressed at the school, and we work with him through it at home too, the paed appointments are so few and far between, it has been over 18 months since the last time we saw them, I have been ringing asking for an urgent appointment, but getting nowhere fast, with the standard we have a waiting time, due to demand and so on and so forth.

My children are aged 6,7 and 8 so it is hard work at times.

On top of all of this I am also a full time carer to my Gran, and have been for about 4 years now. At the start of the care for her, it was not so bad, she had a major operation to repair an abdominal aortic (excuse spelling) anurysem? There were unfortunately complications to the operation where they could not warm her blood up quick enough, which lead to her having some memory problems at the time, however they did improve. She also has problems with mobility due to the fact that she has arthritis, and brittle bone disease. She went on to have a minor TIA, but this really knocked her confidence levels, but with lots of time spent with her, talking and going over her feelings she did start to pick up and become the Gran that I have always known and loved. Christmas just gone, she started to become unwell, and it has progressed quite quickly from there. Her mobility is now extremely poor, and her memory is not good at all. She has trouble remembering to take her tablets (they are in a doeset box) and she eats very little, however she has also been feeling sick for a long while too, she has anti sickness meds, which she does take, but it just simply doesnt seem to be working well for her at all. I am literally sat watching her become weaker and weaker and hate seeing her this way. She keeps saying that she doesnt want to go on like this, she had two falls in the last two weeks, the last one resulting in her bruising her one side badly, across her ribs, her knees, her breast and her chin. I know that this pain added ontop of the pain she had before from being unwell is making it all the more unbearable for her, so try to comfort her with the fact that when her body has had time to recover from the recent fall, she will start to feel a bit better pain wise. This is severely affecting her sleeping, so she is not sleeping well, the tiredness I think is adding to her memory problems, but I am also facing the fact that she simply "can not be bothered" (her favourite saying) to do anything or attempt to do anything herself. Her daughter (my mom) passed away 8 years ago, so it was me that has always been there for her doing all that she needs. She has a son, however he only comes to see her on a Wednesday, Saturday and Sunday for a couple of hours or so each day. The rest of the time he is either out at work, or out doing his hobby of bird watching.

I sit here at night and feel so tired, stressed and drained that it is making me feel ill. I am lucky to the extent that my husband also helps to care for Gran, so we share the load, but it life at the moment involves getting up to sort the children out for school, dealing with my sons special needs, then dealing with my Gran, coming home to collect the children from school and then bed. This has been the same routine now for 4 years.

I have contacted the Social Workers and at the moment she has rapid response coming in, in the morning so that I dont have to rush there straight from taking the children to school, this only started today so I can not really say how its going at the moment as it is too soon to tell.

I dont mean to moan, I just feel that sometimes (this is awful) that I wish I never took on the carers role for my Gran yet at the same time I wouldnt change a single thing. Double dutch I know!

Anyway I wanted to introduce myself, and let people know about me.
Hello samjane. I'm so glad you came here and told us what is happening with you Image

What can I say. Goodness me. How on earth do you cope ? I'm impressed but it all sounds like one big responsibility for you. One big worry. Too much. But you've come to the right place. I'm sure you know that Image And I can hear just how much you love your children. Nothing could be clearer. And I know you want to help your gran too. Of course you do.

I'm glad you have got some input for your gran. I guess once rapid response pull out then there will be carers supporting her to some extent. Have you asked for a Carers Assessment ? If not, this is an ideal time to do that. Please ask for this.

Anyway, my mum seems to want me for something or other. Another pot of tea no doubt.

I am so pleased to welcome you. I so admire what you are doing. But this is the time to get some support. And coming here will be a big help. Quite certain of that....

Take care Image Image Image

Hi samjane,
Welcome to the forum. We're a nice crowd and hopefully can get the support you need here.
It's not awful to say that you wish you hadn't taken on being a carer, just human. To be honest I think you have a right to feel what you like, you're dealing with a lot.
I think Robert's right in saying about getting a carer's assessment. I hope you can get some more support in and take some of the strain off you. If you're feeling so drained that you're getting ill then something needs to change, even though it can be difficult and uncomfortable to do.

Anyhow, thanks for introducing yourself, glad to have you here Image
Oh by the way a Carers Assessment is all about YOUR needs - help and input that will enable you to carry on supporting your gran. It might end up with some offer of help such as day care or possibly even a week in a residential home while you are away - if you ever get to go away ! More details :

http://www.carersuk.org/help-and-advice ... assessment

Take care,

Hi Sam and a warm welcome to the forum.
Hi .

Welcopem to the forums.

My 10 yr old has Autism, he was only diagnosed last xmas..pediatrician didnt like to diagnose to early just in case it was something else even tho it was obvious, had been seeing pediatrician every 6 months for years.

Are the school on board and offering more help. My son had a statement before he had a diagnosis, so that he did get more help from the school.

Tracey x
Hi Sam and welcome Image
Hi samjane

My youngest is autistic she will be 9 in April. She started at a S/N school in Jan of this year well a month ago she wasn't coping at m/stream school, and so far so ggood she is actually enjoying school!!

She was diagnosed when she was 5 as she was showing typical autistic traits, it was a relief when she was diagnosed by the paed. She is under a place called The Edwin Lobo Centre, and now goes once a year, but could go earlier if there are concern's although to get an app is the tricky bit, that's the NHS for you!!

I would push for the diagnoisis and insist, you've got more than enough on your plate with your gran. And it might just ease everything else a bit.

I wish you lots of luck, and take care.

Liz xx
Thank you all so much for your replies to me, it has made me feel so welcome and a little better that I am amongst others who are also caring and going through similar problems and pitfalls.

Thank you also Robert for the advice about a Carers Assessment. That is also much appreciated.

I do have a lot going on at the moment, with lots of stress attached. However I am hopeful that it will soon resolve and things will get a little easier.

I look forward to making some new friends, learning new things, and helping others if I can.

Thanks again everyone Image
Hi Sam Image

Glad we have not frightened you off !

Take care,