feeling quite down

[ali and boyz]

because our son needs 24 care my husband and I don't get any time off if you know what I mean. my husband runs my dads company so is on call 24 hrs and works long hours. when he is at work I do the care for our son and he takes over when he gets home. because of this all holidays now (our sons accident was 4 yers ago so holidays now are different) are the only time we get a break. we were in florida at the beginning of July and we thought like last year we would go to Arran for a couple of days during the October school break but.......... our son is now into 3rd year at Uni and he went on and on about missing 2 days and if we went he would fail his exams. so much so it has got me really down. I know passing is really important to him so I can understand where he is coming from but as we are the only ones that do his care we can't go without him so it looks like we arn't going to get away. I know it sounds selfish but it would be the only break we would get until next year and when I mean break from the daily tiring routine. we also have another son who is 16 and thought it would be good for him also to get time away as we always feel guilty of not spending quality time with him.

dont get depressed really but for some reason this has got to me.

[BevS97]

Do you not have any access to respite care? I don't have any knowledge about this, but I have a friend who cares for 2 children with special needs and I know she gets the occasional week of respite.

[ali and boyz]

Do you not have any access to respite care? I don't have any knowledge about this, but I have a friend who cares for 2 children with special needs and I know she gets the occasional week of respite.

no respite. they can't get the funding for the nursing part of the care so I am the only one who can and who does it. thing is if we went without him he would have a fit. no win situation and I am now feeling that I now don't want to go cause I have got myself into such a mood about it all. but it has got me thinking is this how life is going to be from now on. all seems to have hit home a bit.

[BevS97]

Oh Ali, I am sorry you are feeling down.
Does your son get any breaks from Uni? I can't remember Phil's timetable but he seemed to get quite a lot of time off - maybe you could arrange something for when he is off.

[ursula]

Hi Ali

I really don't know much about your sons accident or needs, but one of our closest friends has a daughter who needs 24 hour care.

She has just finished school and the local authority also said that they could not fund her day time care. But they did fight her case and told the relevant people that she is entitled to the care and if they did not provide the help needed during the day then they (the LA) would have to look after her full time.

This seems to have worked so maybe you should try the same for your son?

Hope you get the help that you need.

[keith&carol]

Hi Ali,
Sorry your feeling down but there is light at the end of the tunnel.
We've been providing 24 hour care for Yvette for 30 years now and Social Services on the whole have been a nightmare to deal with.
I know this won't be easy but to save your own sanity you have to get tough.
We have twice had issues at Judicial Revue stage because we refused to give up until matters were put right.
When you are giving 24 hour care you have to have breaks. It not only gives you the chance to take a breather and renew your batteries it also gets the person you care for used to other carers.
Whilst I can sympathise with your son being anxious about his Uni work he has to accept that you are his mother and carer and not his personal slave.
We have on more than I occasion when Social Services have been difficult and pleaded lack of funds, threatened to pack Yvette's case and leave her and her chair on their doorstep.
Let's face it if you , God forbid, were killed in a car crash tomorrow, they would have to find alternative care for your son because they are bound by a duty of care. If they can find the money in this situation they can find it now!
I used to worry about taking resources from other needy people etc but no longer. Now I shout long and hard ,and very politely, to get what both Yvette and we need . We and you and your DH are doing something that most other members of society would not be prepared to do. Our situation was our choice but if you think about it so is yours. Not all parents with disabled children are willing and /or able to care for them. You have chosen to care for your son and you should be fully supported in this.
Don't give in about the respite time, you and your DH need and deserve it if you are to carry on caring. Shout long and hard and keep shouting until you get some action. Believe me they will soon get fed up with it and give you what you need to shut you up ;) .
You can do it!
Love, Carol :wavey:

[ali and boyz]

Oh Ali, I am sorry you are feeling down.
Does your son get any breaks from Uni? I can't remember Phil's timetable but he seemed to get quite a lot of time off - maybe you could arrange something for when he is off.

its the tutorials he is worrying about. he doesn't gsohe would only miss 2 days but he doesn't know until he goes back at the end of september if he will have tutorials. they only have 3 disabled rooms so I know if I left it until then they wouldn't be able to accomodate us.

I had come to accept we wouldn't be going but my dad has just popped in (he is from Arran) and he said fancy Arran in the October school week, my treat :confused2

[ali and boyz]

Hi Ali,
Sorry your feeling down but there is light at the end of the tunnel.
We've been providing 24 hour care for Yvette for 30 years now and Social Services on the whole have been a nightmare to deal with.
I know this won't be easy but to save your own sanity you have to get tough.
We have twice had issues at Judicial Revue stage because we refused to give up until matters were put right.
When you are giving 24 hour care you have to have breaks. It not only gives you the chance to take a breather and renew your batteries it also gets the person you care for used to other carers.
Whilst I can sympathise with your son being anxious about his Uni work he has to accept that you are his mother and carer and not his personal slave.
We have on more than I occasion when Social Services have been difficult and pleaded lack of funds, threatened to pack Yvette's case and leave her and her chair on their doorstep.
Let's face it if you , God forbid, were killed in a car crash tomorrow, they would have to find alternative care for your son because they are bound by a duty of care. If they can find the money in this situation they can find it now!
I used to worry about taking resources from other needy people etc but no longer. Now I shout long and hard ,and very politely, to get what both Yvette and we need . We and you and your DH are doing something that most other members of society would not be prepared to do. Our situation was our choice but if you think about it so is yours. Not all parents with disabled children are willing and /or able to care for them. You have chosen to care for your son and you should be fully supported in this.
Don't give in about the respite time, you and your DH need and deserve it if you are to carry on caring. Shout long and hard and keep shouting until you get some action. Believe me they will soon get fed up with it and give you what you need to shut you up ;) .
You can do it!
Love, Carol :wavey:

thanks Carol.

They haven't been able to get 'professional' help re the nursing tasks since he was discharged and the carers arn't allowed to do it . even although his dad and I do the 'caring' when we are away I still feel that we have had a break because the housework part isn't there and that is quite a big bit for me as the laundry is huge and a huge part of his carepackage. I had accepted we wouldn't be going until my dad popped in a minute ago so I don't know what to do. I am so proud that he has got this far i.e. uni so I don't want to jeporidice him passing his exams but on the other hand I was a bit annoyed that he didn't really think before he went into the mood and said no. His accident was 4 years ago (broke his neck playing rugby) and we have all coped really well but for some reason this has got me a bit down. the option is we either take him and hope it doesn't disrupt his studies or don't go and maybe go in Easter.

[Karen Mouse]

Just wanted to give you a big hug and say hope youre feeling a bit better now. I think youre doing an amazing job caring for your son and you deserve a break to re-charge. hope you an sort it out.

Take care
x

[BarryandCaron]

Sorry to read of your problems. I hope you do manage to get a break as it sounds you could all do with it.

As Carol has said before, if the worst were to happen and you /DH couldn't care for your DS SS would have to provide the care. I can't understand how they can say they are not able to.

When DS2 was in hospital a lot when he was younger, quite a few children came into hospital for respite care, is this not an option for you so you could have that much needed break.

{{{{{{HUGS}}}}}} for you, I hope you find a solution soon.

Caron

[floridianfairy]

Sorry, I cannot offer any advice just wanted you to know I think you and your family are doing a wonderful job ,:wavey: it must be very hard for you to keep your spirits up all the time,hope you feel better very soon,when I have had problems with special needs teachers,hospital, etc, I have a little cry:cry: , say why us?works a treat always feel better.:cool2:

[Keema]

Ali

So glad your Dad wants to go with you, hope you do get to Arran. My sister adopted her Daughter from birth (now 13yrs) who has Downs Syndrome and much as we all love her to pieces and help out where and when we can, she and her husband still need the occassional weekend of respite. This was OK till she turned 13, they now say she is classed as a woman and should not be cared for in a predominantly male house (her respite family had 2 boys). Both they and my sister are fighting to get the respite reinstated, it was something she had to fight long and hard for so is not prepared to give it up so easily. I hope you can get some help form somewhere, please dont give up banging on SS door, you need this for your son, for yourself and the rest of your family.

Sending lots of HUGS hope you feel better.

GOOD LUCK.

Sharon

[lausan]

ask your social worker about Vitalise respite care its fantastic My Neice whom i care for aged 24 goes 3 Times a Year

[ali and boyz]

thanks everyone,

haven't heard of that Lausan. thing is he wouldn't go into respite. that is his one fear in life. having to go into respite or a care home. he has coped so so well since his accident that it might send him into depression if we did it that is why if he doesn't come with us we wouldn't be able to go.

ask your social worker about Vitalise respite care its fantastic My Neice whom i care for aged 24 goes 3 Times a Year

[BevS97]

I was having a nosy on that Vitalise website, and it looks more like a holiday rather than 'respite' - that might be more palatable to him.

I can understand his concerns, and it must be bloody awful to be dependent on anybody when you are 24, but it sounds like maybe a hard conversation is needed about how you can't care for him 24/7 forever, you will get exhausted and if you get ill then that's not going to help anyone.

One of my friends has a 16 year old son with lots of needs, and they have just been given money to pay towards a Personal Assistant for him, she is in Glenrothes so I don't know if similiar is available to you. If he was able to choose the assistant, and 'employ' them himself, then that could give him a lot of independence which must be a good thing from his point of view too?

[lausan]

thanks everyone,

haven't heard of that Lausan. thing is he wouldn't go into respite. that is his one fear in life. having to go into respite or a care home. he has coped so so well since his accident that it might send him into depression if we did it that is why if he doesn't come with us we wouldn't be able to go.
My Neice goes to the one in Southampton it over looks the sea she goes when it is Youth week 18-40 and xmas shopping weeks Vitalise is the new name it was called winged fellowship,My neice is very outgoing she is a wheelchair user she has spina Bifida and its not like a home more like a hotel with specialist care its worth looking into maybe you could visit one not sure of all their locations

[loadsapixiedust]

Oh Ali, I do feel for you {{{hugs}}} it is all so hard sometimes.

One thing to do right away is contact the Princess Royal Trust for Carers or another carers organisation for some support and advice. You are entitled to help from statutory authorities. They will advise you on your rights and David's and how to enforce them. You are both entitled to a formal assessment of your needs by social services and as a carer this includes the need for breaks, holidays and/or help at home. Maybe even some help with laundry could be a big plus for you.

If you Google Carers you will find loads of useful info and hopefully turn up a local contact.

Help is not always forthcoming until there is a crisis, we had none until DH had his accident and I couldn't even go to visit him in ITU because I couldn't leave DS. Since then I have been Ben's sole carer as DH isn't physically fit to help and we now have some help at home and respite breaks. We had to fight hard for this, but it has made such a difference. I didn't realise how hard life was until I got a break from it and I'm sure you are the same.

The issue of respite is difficult, we found it very hard to hand our DS over to the care of relative strangers, but maybe you all need to sit down and explore what would happen if you or your husband were to become ill or physically unable to do the caring, you need a plan for that. He may not be keen to be cared for by others but it will be a reality in his future life at some point that he needs to deal with.

We have found that, although difficult to begin with, starting respite and home care was a very positive experience for our DS and has really helped him to become more mature and feel more independant and in control, he has also developed great relationships with his carers.

Your son could be entitled to apply for direct payments from your local authority to employ his own care and nursing staff, maybe this is an option to explore. Could he stay at home with carers living in while you and your DH have a night or 2 away? I am assuming your family are in contact with a social worker, they are the key to all the services you need, but sometimes they don't know all that is available and it can be helpful to do some research of your own too.

As far as I know all hospitals can provide respite for people who need nursing care beyond that available in the community. I know the hospital where I work has people for respite stays (adults and children) on a regular basis.

My thoughts are with you, I hope you can get something sorted which will help you to have the break you deserve.

[ali and boyz]

thanks Lynn,

we get care help to get him up and out to uni etc but no nursing care so he can't do without me for the nursing part and the SW can't get funding. our authority won't provide nursing care at all and the helath board have no funds. although I must admit when she keeps going on about us going on our second honeymoon I feel like punching her. they are doing an assessment at the moment (they apparently should have done one before discharge 4 years ago)

I know once I get my head round what we are doing then I will buck up. I had made up my mind we would not go, and maybe go at Easter then my Dad popped in and said why don't we all go in October , my treat (they are a good help) and my head went into overdrive again :pgig:

thought we could even go over for xmas but what with the weather we might get stranded :omg: really don't mind caring for him but its the breaks that make it easier, even with him coming with us, and I think this episode made it hit home that we can't just do as we want, silly wee thing right enough . some peole don't even get away at all so I really shouldn't moan. :blush:

Ali x Oh Ali, I do feel for you {{{hugs}}} it is all so hard sometimes.

One thing to do right away is contact the Princess Royal Trust for Carers or another carers organisation for some support and advice. You are entitled to help from statutory authorities. They will advise you on your rights and David's and how to enforce them. You are both entitled to a formal assessment of your needs by social services and as a carer this includes the need for breaks, holidays and/or help at home. Maybe even some help with laundry could be a big plus for you.

If you Google Carers you will find loads of useful info and hopefully turn up a local contact.

Help is not always forthcoming until there is a crisis, we had none until DH had his accident and I couldn't even go to visit him in ITU because I couldn't leave DS. Since then I have been Ben's sole carer as DH isn't physically fit to help and we now have some help at home and respite breaks. We had to fight hard for this, but it has made such a difference. I didn't realise how hard life was until I got a break from it and I'm sure you are the same.

The issue of respite is difficult, we found it very hard to hand our DS over to the care of relative strangers, but maybe you all need to sit down and explore what would happen if you or your husband were to become ill or physically unable to do the caring, you need a plan for that. He may not be keen to be cared for by others but it will be a reality in his future life at some point that he needs to deal with.

We have found that, although difficult to begin with, starting respite and home care was a very positive experience for our DS and has really helped him to become more mature and feel more independant and in control, he has also developed great relationships with his carers.

Your son could be entitled to apply for direct payments from your local authority to employ his own care and nursing staff, maybe this is an option to explore. Could he stay at home with carers living in while you and your DH have a night or 2 away? I am assuming your family are in contact with a social worker, they are the key to all the services you need, but sometimes they don't know all that is available and it can be helpful to do some research of your own too.

As far as I know all hospitals can provide respite for people who need nursing care beyond that available in the community. I know the hospital where I work has people for respite stays (adults and children) on a regular basis.

My thoughts are with you, I hope you can get something sorted which will help you to have the break you deserve.

[chris17uk]

I've not been in this forum before but I spotted this thread and came and read it, Ali my heart goes out to you, and all you carers on here who have to care 24 hours a day without a break, I don't think people realise how hard it is for you all and I know you will all say but you'd do the same and yes I would without a doubt but it must be so hard and I am garteful I'm not in that position, I hope you get the weekend break you need Ali and good luck to you in the future for funding to enable breaks more often. (((((Hugs))))))

[Bartswife]

I've read through all off these replies and can't really add any more other than my thoughts go out to you. I was going to suggest Xmas but you already explained why you don't want to go then. Its hard looking at a few months ahead of you especially over winter before you think you can have a break. We have a SN son who does not need 24/7 care but even so I have found the responsibility of fighting for his educational needs very upsetting so have a vague idea of how you are feeling. It has recently got me very down to the extent I had to see a counsellor for depression, and just talking it over and him telling me to do more for myself (which I have started doing) has helped. It puts a lot of pressure on both you and your husband but would it help if you asked your family to look after your son for a few days and took a break with your other son, not the best solution but it may help you keep your sanity. Sorry I can't help further, good luck.

[ali and boyz]

I've read through all off these replies and can't really add any more other than my thoughts go out to you. I was going to suggest Xmas but you already explained why you don't want to go then. Its hard looking at a few months ahead of you especially over winter before you think you can have a break. We have a SN son who does not need 24/7 care but even so I have found the responsibility of fighting for his educational needs very upsetting so have a vague idea of how you are feeling. It has recently got me very down to the extent I had to see a counsellor for depression, and just talking it over and him telling me to do more for myself (which I have started doing) has helped. It puts a lot of pressure on both you and your husband but would it help if you asked your family to look after your son for a few days and took a break with your other son, not the best solution but it may help you keep your sanity. Sorry I can't help further, good luck.

thanks everyone, just having posted on here helped and everything now doesn't seem as bad. some people don't ever get away so I should count myself lucky. We only have my Mum and Dad as family didn't last past our son coming of the ventilator. As soon as he was out of intensive care which he was in for 4 months they all disappeared, something I still find hard to comprend. So its just us and my Mum and Dad who are in there 70's and although my Dad is a godsend he wouldn't be able to do the nursing tasks which is the main thing. I will see when his tutotials are as I have emailed the social worker which is a plus for me as normally wouldn't have done that to see if she can find out and that way it will make us decide . we like going away as a family and my husband and really don't mind the care part but even if and when we all go away together it still helps charge our batteries. If we don't get away for a few days then I am going to speak to him about easter . new year would have been great but the thought of being stranded or seasick :pgig: puts me off :pgig:

[duchy]

Isn't October the very begining of the university year ? I know from personal experience if you aren't actually there to make any special arrangements-it just doesn't happen and can impact on the rest of the year. He may have a point from a practical point of view. I do agree that as adults you all need to be discussing the alternative types of respite available and fighting for it-if not in the home then in a non hospital enviroment.
Do you have a local carers support group Ali-I think you might really benefit from that kind of support-both from getting info (always amazes me how well kept a secret some services are kept) and the luxury of a guilt-free moan occassionally with people who really do understand the frustration of been a carer as well as a loving parent !!
Big hugs from one carer to another