not sure where to turn next

janetredgold

Hello

Thanks for welcoming me to this forum. I have never joined a forum before, so please forgive me if this isnt the correct aproach.

To cut a very long story short.

My father was diagnosed with MS,when i was 14. i am now 53 (39 years) and i am  still lucky enought to have both my parents but sometimes i wonder??

My dad is now completely bed ridden and has developed probably moderate to severe dementia (diagnosed). Mum still cares for him at home, with a little help from a care company and myself when im not working, supporting my 15 year old son, plus being a nanny to my other two childrens kids. I have also just had major surgery for lung cancer, (by the way i have never smoked) Mum is reluctant to have strangers in her home. She has health issues herself. Which im sure others would probably receive help for but not mum. She is a battler.

Over the last 2 years Dad has been in and out of hospital with various infections and problems. He has a stoma and a permenant catheter which needs constant attention as he has a tendancy to pull it out and off. He relys on other to do everything. Now even feeding.This is no kind of life for him or my mum. Its just so painful, sad and frustrating to see. He has suffered enough over the years.  He is in hospital again at the moment and has been for a few weeks. Only 1 visitor, the same 1, for 1 hour a day. How is this still ok when we can go to football matches, eat in restaurnats with strangers and go to festivals and music concerts.

I dont know where to turn? I feel like he needs one specialist doctor to over see the complete care but that is impossible. He needs to be in a proper nursing home but i cannot seem to convince my mum, as when she is with Dad, she believes he is still able to make those decisions for himself.(in denile) She has recently completed all the correct forms for medical power of atterney. Dad has just enough saving to take him over the limit to receive finacial support benefit but that wont last for ever, then what happens he gets shipped out to a poorer quality care/nursing home.

That wasnt really a long story short, was it? i could go on for hours, what they have been through!!!!!

Not really sure whats next, the doctors say his heart is strong, which is what keeps him going.

Last year mum completed (NHS)Continuous Health care benefit forms but apparently missed out by 1 point???? so not entitled. I dont understand that. How unwell and disabled does a person have to be to receive what they should be entitled to after employing others and running his own business for many many years, until illness took that away too and paying his taxes. I dont want to get into the politics, i understand its means tested. Im just ranting!!

Not really sure why today i have decided to join but just putting it down in words helps. Hopefully there are others out there that understand.

jane xx

janer1967

Hi and welcome to the community 

I'm sorry to hear about your situation and your concern for your parents and it's great you were able to share that with us 

I don't have any advice and not sure that is what you want but we are here for you and will support where we can 

You might find age UK or a dementia charity website with some good advice 

We also have specific sections on here you might find useful 

janetredgold

Thanks jane 
just airing my frustrations, writing them down and knowing someone has read them is a great help. I’ll look into Age UK. 

janer1967

I agree getting things off your chest is a bonus and this is a great place to do that 

It also gives you chance to connect with others and maybe find others in a similar situation