Many of you know by now how hard things are here for me to keep my head above water with two disabled boys and a disabled husband as well as two other grown up kids their partners and our grand baby girl.
We managed a while ago to finally get restbite care for one of the twins. So we were delighted that this was falling into place after so many years without a proper out of home care package. Things have been going well and Dan is settled and happy. He is always more vocal when he returns home and more communicative which is wonderful. Anyhow we really have needed these times that he is away for us to recover and wind down and recharge. All very important to us. So when the restbite centre felt the need to keep phoning us on the days Dan was with them for various reasons we put a little note in to say don't phone unless in an emergency. Mainly because I now reguard those days when Dan is not here as our days off. Like any other employment you don't expect to be contacted on your days off unless it is really urgent! ( And I felt the need to switch off of Dan !) So anyhow the restbite centre have been wonderful and have tried to accomodate us very much. They have given us extra days when they have cancillations so we can get better as we are really tired out and the pair of us have been unwell for months.
On Sunday they phoned and said did we want to have an extra night - which would mean putting Dan in the car and running him up to the town at the top of the penninsula and meeting the restbite bus as they come from the other side of the lough with another young person who happend to be going home. We naturally said yes! We did this as Dan normally gets lifted from the day care centre so we had to do the transport as it was the weekend - lucky for us the restbite Bus was comming up near a local town so we were able to hand over there.
Anyhow - I didn't think anything of it. I had kept Dans daycare bag seperate from his restbite bag so when the day care bus came Monday morning( it comes our way to pick up others as well) - although Dan was not here having been gone to the restbite on Sunday at least I could give the day care bus his day bag and weeks supply of dipers and all that kind of stuff. I said to the care assistant on the Bus - please remember not to phone us unless it is an emergency and explained I had done that with restbite too because these were our "days off!"
Fine until this morning. - A person I didn't know from the day care phoned up out of the blue and said they had changed their pollicy and we can no longer put Dans restbite case on the bus for the day care centre. She said it was because it had meds inside. Well I always make sure the meds are well wrapped up and I tell them so they can lock the case in the office at the day care. So I said well then I can leave his meds for the month with the Restbite centre and then you can still take his bag. - OHHH NO she said we are not taking bags because they can be used as a weapon>????
I am thinking hang on what about his day bag for the day care centre????? Wont that be just as much a weapon???? And what about the meds he brings to Day care??? Surely if they can get to these bags/ or meds in them and use them in that way there is an issues with level of suppervision????
Thing is now - if Dan isn't allowed to take his overnight case on the day care bus it causes a deal of problems for us!
- I can get him to the day care centre to be picked up by the restbite bus but he wont have any clothes or meds so they simply wont take him for overnight without them? Which is only right!
- Where we live it now means that Dan cannot attend day care on the day he goes into overnight restbite or the day he comes home simply because they wont take his bag. So he losses a day of day care everytime he goes to restbite if it is not on a weekend. Which is most of the time.
- it also means because we live on a penninsula we have to pay ferry fees or drive miles round the lough - that means extra fuel costs to take him over the other side of the lough and Ferry fees to the restbite centre
- Technically we are supposed to be having the DAY OFF! IT eats up our precious time and takes £12 return on the ferry everytime! So we have extra costs to pay just because they wont take a bag?
- It also means of course that my DH who is ill has to now drive all the way just to take the darn bag with Dan!!!!!
- usually Dan gets the adult day care bus spends the day at Day care and the restbite bus collects him with bag - he stays with them the other side of the lough and is returned to Day care by them with his bag on the day he has to come home so he spends the day as usual at day care then comes home to us down this side of the Lough on the day bus with his bags.
- Now everything is changed and we lose out on yet another service. More so Dan misses out too!
SO the knock on affect is now hubby has to do a lot of driving even though he is also disabled and on a lot of pain meds or I have to drive the way over! Even though it is supposed to be our restbite time>? Meaning we lose two days of restbite because we would have Dan until 2pm and pick him up at 2 pm when normally he would be in day care. We also get the extra costs of the ferry and fuel - and they say - this is helpful and restbite is supposed to relieve stress. - I am totally stresses and feel like I want to grab the idiot who cancelled the bag taking on the bus by the neck and squeeze !!!!!!
So I have been boiling away now for hours thinking I should go to the MP or the press or just find the horrible person and poke them in the eye a few times. Of course they just HAD TO OHONE ME ON MY DAY OFF DIDN'T THEY!!!!!!!!
I am STRESSED - what to do??????
Oes
We managed a while ago to finally get restbite care for one of the twins. So we were delighted that this was falling into place after so many years without a proper out of home care package. Things have been going well and Dan is settled and happy. He is always more vocal when he returns home and more communicative which is wonderful. Anyhow we really have needed these times that he is away for us to recover and wind down and recharge. All very important to us. So when the restbite centre felt the need to keep phoning us on the days Dan was with them for various reasons we put a little note in to say don't phone unless in an emergency. Mainly because I now reguard those days when Dan is not here as our days off. Like any other employment you don't expect to be contacted on your days off unless it is really urgent! ( And I felt the need to switch off of Dan !) So anyhow the restbite centre have been wonderful and have tried to accomodate us very much. They have given us extra days when they have cancillations so we can get better as we are really tired out and the pair of us have been unwell for months.
On Sunday they phoned and said did we want to have an extra night - which would mean putting Dan in the car and running him up to the town at the top of the penninsula and meeting the restbite bus as they come from the other side of the lough with another young person who happend to be going home. We naturally said yes! We did this as Dan normally gets lifted from the day care centre so we had to do the transport as it was the weekend - lucky for us the restbite Bus was comming up near a local town so we were able to hand over there.
Anyhow - I didn't think anything of it. I had kept Dans daycare bag seperate from his restbite bag so when the day care bus came Monday morning( it comes our way to pick up others as well) - although Dan was not here having been gone to the restbite on Sunday at least I could give the day care bus his day bag and weeks supply of dipers and all that kind of stuff. I said to the care assistant on the Bus - please remember not to phone us unless it is an emergency and explained I had done that with restbite too because these were our "days off!"
Fine until this morning. - A person I didn't know from the day care phoned up out of the blue and said they had changed their pollicy and we can no longer put Dans restbite case on the bus for the day care centre. She said it was because it had meds inside. Well I always make sure the meds are well wrapped up and I tell them so they can lock the case in the office at the day care. So I said well then I can leave his meds for the month with the Restbite centre and then you can still take his bag. - OHHH NO she said we are not taking bags because they can be used as a weapon>????
I am thinking hang on what about his day bag for the day care centre????? Wont that be just as much a weapon???? And what about the meds he brings to Day care??? Surely if they can get to these bags/ or meds in them and use them in that way there is an issues with level of suppervision????
Thing is now - if Dan isn't allowed to take his overnight case on the day care bus it causes a deal of problems for us!
- I can get him to the day care centre to be picked up by the restbite bus but he wont have any clothes or meds so they simply wont take him for overnight without them? Which is only right!
- Where we live it now means that Dan cannot attend day care on the day he goes into overnight restbite or the day he comes home simply because they wont take his bag. So he losses a day of day care everytime he goes to restbite if it is not on a weekend. Which is most of the time.
- it also means because we live on a penninsula we have to pay ferry fees or drive miles round the lough - that means extra fuel costs to take him over the other side of the lough and Ferry fees to the restbite centre
- Technically we are supposed to be having the DAY OFF! IT eats up our precious time and takes £12 return on the ferry everytime! So we have extra costs to pay just because they wont take a bag?
- It also means of course that my DH who is ill has to now drive all the way just to take the darn bag with Dan!!!!!
- usually Dan gets the adult day care bus spends the day at Day care and the restbite bus collects him with bag - he stays with them the other side of the lough and is returned to Day care by them with his bag on the day he has to come home so he spends the day as usual at day care then comes home to us down this side of the Lough on the day bus with his bags.
- Now everything is changed and we lose out on yet another service. More so Dan misses out too!
SO the knock on affect is now hubby has to do a lot of driving even though he is also disabled and on a lot of pain meds or I have to drive the way over! Even though it is supposed to be our restbite time>? Meaning we lose two days of restbite because we would have Dan until 2pm and pick him up at 2 pm when normally he would be in day care. We also get the extra costs of the ferry and fuel - and they say - this is helpful and restbite is supposed to relieve stress. - I am totally stresses and feel like I want to grab the idiot who cancelled the bag taking on the bus by the neck and squeeze !!!!!!
I am STRESSED - what to do??????
Oes
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