pulmonary sarcoidosis

Chest and lungs
1

my mum was diagnosed with sarcodosis a few years ago, she has deteriorated since September last year and is now on 8 litre of oxygen constantly - her oxygen need is constantly increasing.  She is unable to exert herself with normal daily activities and chores - she does try but she then suffers for it.  I am doing her shopping, cleaning washing etc to try and help but am struggling to keep on top of it whilst looking after my kids and family and my dad is registered disabled.  Can anyone advise me if there is any help out there, i have no issue doing things for my mum, but she is needing more and more and i would actually just like to have some quality time with her whilst i can.

i would appreciate any help

thanks

2

Contact adult social care in your area. They will help you. Hope you get help. All the best.

3

many thanks amanda,

i did try to get my mum some attendance allowance so i could get some help for her, but as she was still managing her own hygiene needs they declined it! 

thanks again

sharon

4

Where do you live?

Is there any point in contacting your political representative?  A clergyperson? The media? Your own medical doctor?  An official advocate for the elderly or disabled, like an ombudsman?

5

I would ring them and tell them your not coping . Unfortunately you have to lay it on with them as they try and fob you off. Go and shout loud it's your family and you deserve support . Good luck x

6

many thanks amanda x

7

thanks i will look into it 

8

The problem is that they don't want to help or give you any attendance allowance. When I was in the same situation (I had sarcoidosis stage 4-- this means with fibrosis -- + total pneumothorax +TB infection, and I couldn't stay without oxygen not even for 10 minutes; I also was on oxygen mask because  cannulas were not enough for me), they told me to get some oxygen extension tubing and try to manage by myself. These people have no heart and, as I like to say, laws are made for healty people and not for sufferers. As Anhaga suggested, I think it's best to contact someone who can put in a good word for you or the media...Sad but true, contacting the media sometimes works faster than anything else... 

9

hi

yes it is sad but it is true, mum my has to use a mask now too, its sad when youve contributed into healthcare all your life and when you need something back you're told NO.

Many thanks and i hope you're doing ok (as ok as you can be :-))

sharon

10

Good luck.  I hope you find someone who can help. 💕

11

Hi Sharon you can contact your local social services department. Just explain to them your circumstances and how your mum is they normally get someone to do an assessment to see how they can help. I don't know about any cost involved has each local authority is so different. I hope this helps x

12

Hi jean,

Thanks I will give it a go, thank you so much for taking the time to reply x

13

You are very welcome Sharon x

14

Which country are you in Sharon? The help available can vary tremendously by country or even areas within a country.