Discussion Boards I care for...
Does anyone ever have days when they feel just like giving up ?
- By tracyG
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Mon 21 Jan 2008 22:09
I care for my two son's. My youngest is the hardest he has downs syndrome and endless medical problems, which means we have to travel to endless hospital appointments and because of the nature of some of his medical problems, we are sometimes awake most of the night with him.
He is now 5, yet I still feel like we are nursing a baby that wakes chokes and vomits through the night.I have three children in total and have no close family as such around me to help us in getting some rest. My parents live abroad and my husbands family are more interested in their own social life, than spending time with their grandchildren.
I have desperately tried over the years since having my youngest to pick myself up and become more than just a mum. I set up a support group for children and families with special needs not long after my son was born, and exhausted myself as at the time my son was far too poorly.
I tried college to do nursing, but his heart started to deteriorate and so had to give it up. I then did a teaching assistant course at level 2 and worked in school, I have then tried to do an NVQ 3 in child care learning and development, but the workload is so much for me, as i have to study as well as work in school and then see to my kids. It makes me feel such a failure to have to give in to it all, I want to contribute the same as my husband, and it really hurts when i feel i have to give it up because once again I have exhausted myself, through trying too hard.
I know being a mum is a full time job and I know that being a carer is even harder, but i just wish sometimes I could have it normal and do what normal people seem to be doing.
Is it so wrong to want more or to have it all, my doctor has told me i have to stop as its doing my health no good, but i can't helping feeling a failure at only 38.
Replies
- By kerry
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Re: Does anyone ever have days when they feel just like giving up ?
Mon 21 Jan 2008 22:32Awwwwww Tracy darlin...
Im sat here booing now! No mate youre not a failure at all, no way hosay
Ive got 4 kids, two boys, like you severely disabled (fragile x/autism, epilepsy, heart murmur, adhd and tourettes)
Mine are a bit older now, 9 and nearly 11 and its only now im taking some time for ME! Finally at uni -2nd year.
Its damned hard, lack of sleep and time to do the work etc but all my years of caring have made me a tenacious being and im sure the same applies to you.
I know you probably feel 98 sometimes but youre only young and you gotta lotta time yet.
you are obviously intelligent and hard working aside from the kids so do not give up- your day will come I promise you that.
Never feel that you are not contributing cos without you and your input where would your kids and your partner be! I bet you are the mainstay in your family- the pin that holds it all together!
I know I am!
we also are a bit low on family- I do not see my own mother (she has never tried to meet her grandkids) and my mum inlaw- who adores the kids- is 300 miles away and not in the best of health.
Do you have any support outside the home eg social services? Have you had them AND YOU assessed?
They should offer you some respite and you might have to fight but you strike me as a fighter!
I ended up naming and shaming with local paper when they wouldnt provide help. bit drastic but it worked for us- i ended up turning some down!
I have a fab relationship with every one concerned with the boys care- the multi disciplinary team, comm paed, health workers, and my social worker but its taken time and a lot of effort.
they know now not to mess with me haha.
Its a shame we have to fight but please do if you need to. It might give you the little bit of breathing space you need to spend on your own, with your other child, your husband, or just getting yourself a nice little colonic irrigation or something!
previous to uni i did a btec in health care, was very depressed at the time, thought i was thick etc, ended up top of the class with 3 distinctions and 2 merits! what a buzz that was! and my experience as a carer played a part in helping me.
Im sure you will find the same thing when you get back to some YOU time at college or uni (whatever) you will add so much to the class with all your experience.
Dont give up tracy- you really are a star- believe it.
Best wishes
Kerry
- By loopy
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Re: Does anyone ever have days when they feel just like giving up ?
Tue 22 Jan 2008 11:37you are not a failure! I had this conversation with my friend this morning, in as much as i feel really bad that i cant contribute as much as my other half does financially.I have an autistic daughter who takes up so much of my time when she is not at school. I dont have the problems that you have but i have the lack of sleep problem cos she regularly wakes in the small hours. I too have done the NVQ level2 teaching assistant course and was considering doing the level 3 but i am not sure about it. I think that everyone expects me to do it but i dont really want too.I did the level 2 to prove to myself that i have a brain!! employment wise came second because i would have to do part time and would not be any better off financially anyway. I am going through a phase at the moment where i feel i should be working more and i should be doing this and i should be doing that where all i am doing is making myself ill and no use to anyone. so yes i do know where you are coming from
- By Alice
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Re: Does anyone ever have days when they feel just like giving up ?
Tue 22 Jan 2008 16:26Hi Tracy G
Dont be too hard on yourself sweetheart, you are not a failure at all, I am 65 and care for my Daughter who is 40 years old and has Downs Syndrome she has a severe congenital heart disease and is on oxygen 24 hours a day.
When my Daughter was young in the late sixties there was no help or support from anywhere until she went to school at the age of six, life was very hard in those days (sob sob) as I also had another Daughter two years younger.
So rather than sit on my bum and feel sorry for myself I looked around to see what I could do, I went to evening classes to learn dressmaking very useful now I have an overweight Daughter to make clothes for, Healthy eating cookery classes again very useful now. My friend and I started the first toy library in our area which my youngest Daughter also got the benefit of and childminding which helped my Down's Daughter to mix with other children, when my Daughter was a teenager I joined the local Mencap and was secretary for 9 years, I hadn't a clue what to do but enjoyed the experience very much, now I am older i have had to slow down a bit but do the odd belly dancing class and tap dancing class now and then just for fun.
Try and do something enjoyable and positive for now and do your NVQs or whatever when you son is older, you have along road ahead of you as a carer sweetheart, but try and enjoy what you have going for you at the moment.Take care
Alice
xx
- By loopy
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Re: Does anyone ever have days when they feel just like giving up ?
Tue 22 Jan 2008 17:00oh alice, that was lovely. I too feel trapped at times and money is very very tight for us (its value brands all round here!) . I feel the same as poor tracey, and i have made myself ill over it. Today, my middle daughter bought me some lovely flowers and a box of chocs because she said i was a special mommy that looked after her sister! it was really lovely.
- By loopy
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Re: Does anyone ever have days when they feel just like giving up ?
Tue 22 Jan 2008 17:26oooh it was not my middle daughter but my youngest daughter as she has just rather indignantly pointed out to me!!
- By tracyG
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Re: Does anyone ever have days when they feel just like giving up ?
Tue 22 Jan 2008 17:47I just want to say thanks to everyone who replied to me, it has been an uplifting feeling that I am not alone, and thank you for taking the time away to answer me.
It has made me feel much better in myself knowing that Iam not alone in this struggle.
- By kerry
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Re: Does anyone ever have days when they feel just like giving up ?
Tue 22 Jan 2008 18:07well I believe thats what this site is for!
A bit of support (even if long distance on the internet) can go a long way!
You really are not alone, like you said, and we all have bad times but we also have good times as carers; those 'magic moments' we might not get from our other kids.
I find the fact that my boys will always retain their sweet non-judgemental innocence a real treat! (also having 2 gorgeous but very streetwise teenage daughters highlights the differences!)
Best wishes tracy- you are a shining star- never forget that ok.
Kerry
- By loopy
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Re: Does anyone ever have days when they feel just like giving up ?
Tue 22 Jan 2008 18:11tracy, your message has really struck a chord with me. Please dont ever think of yourself as a failure. Honey, you are not. I really feel that you and me share some common ground and i would love you to pop in to the chat room one night (usually friday night when other half is at pub....
) i would love to chat to you, please dont be so hard on yourself.
- By loopy
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Re: Does anyone ever have days when they feel just like giving up ?
Tue 22 Jan 2008 18:16you have actually supported me because i thought i was the only one that felt like you do. xx
- By Alice
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Re: Does anyone ever have days when they feel just like giving up ?
Wed 23 Jan 2008 07:40Hi Tracy G
I forgot to mention, I too had all the hospital appointments sleepless nights etc when my Daughter was young, still do as a matter of fact even now she is 40.!
What is your son's heart condition called?, my Daughter has Eisemenger V.S.D.