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Paul p

Hi everyone, not been able to get on the site for a while. I hope all is well with you all!

I have a bit of a problem. I live in rural Scotland and my hospital is 50 miles away. I do not drive and it takes 3 busses and 2 and a half hours 1 way to get to the hospital. It is very expensive for me as I am currently a full time carer for my elderly mother. I need this illness like a hole in the head! I just can’t afford to be sick I have a lot of responsibilities.

I feel like I’m isolated and forgotten about I’m worried sick about the future or if there is one!

Does anyone know if there is any financial or practical help available? I don’t want to miss my appointments but I can’t see any way around it I just can’t be away for 7 hours! I don’t want to sound like a moan but this is a issue for me.

Thanks for reading and all suggestions greatly appreciated!

Happy holidays everyone!!! … Paul

Ps wrapping prezzies is a major task with MS eh? So footery!

Hi Paul

Some NHS hospitals offer a refund on travel costs to appointments. You would need to check with your hospital and it’s for those on certain benefits. You could phone the hospital cashiers office to check.

A claim form needs to be completed and signed by a medical professional at the hospital. Then the patient takes the signed form, appointment letter with travel tickets to the cashiers office to claim the refund. You would also need to take proof you are claiming benefits such as a letter from the DWP.

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Why are you full time sole carer for your mother, Paul? How is that feasible? What happens if you are laid low by the flu or by MS? What happens when you need a break from it? If the answer to these questions is a mirthless smile and a shrug, then quite honestly I think that is the issue that needs addressing before anything else can be made more manageable.

If you mother has no money, social services should be able to arrange for carers to come in to help her get washed and dressed and fed and medicated if that is what she needs. If she does have money, then buying in help of that kind is what it’s for. In my experience, adult social services are very helpful about providing details of who they use themselves, even if the means-testing rules mean that they are unable to help with funding. I know it can be difficult, selling the notion that you should be co-ordinating your mother’s care, and helping out when needed, rather than doing it all yourself. Particularly if your mother is reluctant to accept People Coming In - a notoriously common complaint with old people, and one that we should all make a mental note never, ever to do ourselves!

Please forgive me if I am way off-beam here and have just completely misunderstood your circumstances. But if any of this rings even a faint bell, then please steel yourself to address it. Of course you will want to take a keen and active interest in your mother’s care package. But it is just not sustainable for the care package to be just you.

Alison

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And yes, wrapping presents is a desperate footer - I hate it too.

A

x

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Hi lenny, thank you that’s something I didn’t know. I will definitely investigate further on. Thanks buddy!..p

Hi Alison, I just got diagnosed with ms in September so I’m still learning. The good days still far greater than the bad but I now know that I can’t just do the bloke thing and be an ostrich. I’m starting to try to find out what this actually means for me.

Mum has COPD but can still wash,dress and use the toilet but I have to be around in case she has a fall or a asthma attack. I only do washing,cleaning,shopping, medication, cooking,etc. It’s good for me to keep active! I’m 42 and just don’t want to let her down when she needs me the most. It’s important to me to look after her and act as normal as I can. After all she made a great job looking after me growing up its my turn now. I wouldn’t like to say that it’s my male pride but it’s not jus that you see she doesn’t know, nobody knows! However I know I can’t bluff my way out of this! I do know that in the future I will have to think about help with care but at the moment things are not bad. I know I should tell my family but I just can’t bring myself to do it. I’m supposed to be the strong one in my family and don’t want to disappoint, but I will have to confess at some point.

Anyway thanks for letting me have a wee moan! Hope you are well and thank you for reading and responding to my post.

Take care… p x

That’s a fair old burden you have to bear at the moment - all the wrenching shock of an MS dx is no joke, as we all know. You’ll be the best judge yourself of when you feel ready to share the glad tidings, and how. I prefer to take things at my own pace too - one step at a time and no rush unless circumstances demand it. In the meantime, I wish you well with finding ways around the practical headaches of transport and covering hospital appointment absences from home.

There are always people on this forum who know that things can feel a bit lonely and a bit difficult too sometimes although everyone’s story is different. Good to have you here.

Alison

Hi Paul

If you don’t already claim Carers Allowance, then that is definitely something worth applying for; even though I work full time my husband gets Carers Allowance for all the stuff he has to do for me, the cooking, cleaning, shopping, helping me with fiddly buttons and zips (why are the buttons and zip pulls on women’s clothes so flaming small @~$**" things).

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PS: As a full time carer, your Local Authority should be able to arrange some form of Respite for you, even if it is just someone being there on the days you need to attend Hospital appointments.

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