adamclan

[adamclan]

hi new to this first post have done I am 80 years old have cystic fibrosis just wondered if any one knew if I could get any help of any sort I live on my own have no family I have been very independent all my life and never asked for help from anyone .my lungs are getting very bad now just had 4 nights up on a trot not sleeping and not able to breathe my doc has not recommended any place to go just gives me inhalers the doctors I see at the hospital I just got to know he has gone on a years holiday the same as the last three doctors its getting so bad here we soon will not have any doctors so those of u who have are luckier than we are here any advice would be good and very welcome

[mumofmums]

I am not sure if my advice is worth anything but if you lungs are bad habe to not been give steriods i get inhkes but your righ they are rubbish

[adamclan in reply to mumofmums]

thank you so much for your advice you have helped me so much loads of love to u all

[knitter]

Hi adamclan , the BLF have a helpline which is available for those members in the UK. They can advise you 03000 030 555.

The phone line is open during the week on office hours, so you could try on Monday.

The Citizens Advice Bureau can help too. Have you tried contacting someone at your doctors surgery , your respiratory nurse maybe?

If you are really struggling at the moment could you ask for advice from 111.

Sending best wishes

[scardycat in reply to knitter]

OH THANK GOD FOR YOU KNITTER!!! I AM SO HAPPY ! GOD FOUND A GOOD SOUL BEFORE I EVEN GOT MY REPLY SENT TO ADAMCLAN :)) YOU ARE A BLESSING FOR ADAMCLAN~ AND HE NOW HAS THE INFORMATION HE NEEDS! I AM JUST THRILLED!! I REALLY WAS SOOO SICK OVER ADAMCLAN'S SITUATION ... ..YEA FOR KNITTER! THANKS FROM ME AND AGAZILLION TIMES!! MY FIRST MOTHERS DAY WITHOUT MY PRECIOUS MOTHER TO CARE FOR AND SHE WAS 94 AND SHARP LIKE ADAMCLAN :)) I LOVE AND RESPECT OUR SAGES! THEY ARE SOLID GOLD <3

[adamclan in reply to scardycat]

hi scardycat so nice to hear from you and thank you for your reply I have never had to ask for anything before but after hearing from you lovely people I know where to start the doc is the first one then I need some where with smaller gardens the one on the side of the bungalow you can build another bungalow on it then there are 4 more gardens to do it is a council property and these are supposed to be for old and infirm people when I signed up for they only showed me the back and front gardens when I questioned it they said you signed for it then the bushes on the edge of the garden is about 60 foot long I was told the council do it but now they have stopped its more than a full time job I feel like I am drowning in problems but I am looking on the bright side cannot even get to the gate without loosing my breath so there is not much chance of me doing that all of u people thank you for your help xx

[scardycat in reply to adamclan]

Oh I am so glad Adamclan that so many that live in the UK knew the right people and phone #s that you needed to get help!

I wish that you had a visiting Advocate, so that person can make all the calls and inquiries, to voice all your needs, concerns, and get you into exactly what YOU want, and you can save your breath, and the stress that goes along with addressing & expressing, applying etc...

Yes, NO garden would be wonderful!! All the luck and I am so relieved & pleased you found so many that live in the same area as you that jumped right on board here to help you get that help! Oh, God bless them all !!!!!

Oh, and don't think you need to answer this Adamclan~ I want you to save that energy and apply to getting yourself ALL the help YOU deserve!!

You are soooo right on spot !! And I am soooo happy to know you will be okay now! Again, God speed & many blessing to you! It is all going to work out !! You just relax, and keep a song bird in your heart. *-* xo

[scardycat]

YOU NEED TO GET HOLD OF A SENIORS HELP LINE OR SERVICE AND GET AN ADVOCATE THAT CAN AND WILL HELP YOU GET THE INFORMATION AND HELP WITH THINGS THAT YOU NEED! YOU NEED SOME VERY IMPORTANT ANSWERS TO VERY IMPORTANT QUESTIONS AND YOU SHOULD HAVE ASSISTANCE IN HELPING YOU!

I WISH I LIVED THERE, I WOULD CERTAINLY BE AN ADVOCATE AND HELP YOU TO GET THE QUESTIONS YOU WANT ANSWERS TO, AND HELP GET YOU FEELING SAFE AND SECURE. YOU DESERVE ALL THE HELP YOU CAN GET.. YOU HAVE EARNED THE RIGHT TO IT !

I HOPE SOME ONE ON THIS SITE WILL KNOW WHERE IN YOUR AREA YOU CAN GET HELP~ YOU ARE SHARP AS A TACK, GOT ON THIS SITE FOR THE FIRST TIME, AND YOU ARE JUST AMAZING! GOD SPEED ADAMCLAN AND I AM HOPING TO HEAR YOU HAVE FOUND SOME HELP VIA SOME GOOD SOUL'S ON HERE THAT CAN SUGGEST SOME IDEAS FOR YOU....

YOU TAKE CARE ADAMCLAN DON'T YOU GIVE UP!!!

[katieoxo60]

Hi there, and welcome to the site. The social care situation in most areas is changing, you can ring for an assessment of needs or fill a form in on line. Most help has to be paid for these days sadly. Age UK can advise you on most rights and tell you where to go in your area to find help or who to ring. At present in most areas they are trying to combat isolation for people like yourself. I live alone, with health problems & over 70 too, so understand your concerns. Until you ask you never know what you are entitled to, so take that first step all our circumstances are different and what we are entitled to is often different too. Best Wishes, do let us know how you get on with your enquiries as we may be able to advise further.

[adamclan in reply to katieoxo60]

hi katie oxo you have given me a bit of get up and go been in touch with housing my biggest prob is housing without a garden as I have not got the puff to do it and I have massive gardens I have taken notice of what everyone has said I want an flat with no garden that is my biggest prob thank you so much for careing adamclan

[katieoxo60 in reply to adamclan]

Sorry for delay in reply I have been away for a few days in devon with some lady freinds. But glad to hear you have summoned up some ideas from mine & others replies to your post. The council generally is a slow process for finding suitable accomodation, but as your needs are small they may come back quickly to you. Did you have any luck with other help or advice? did you try Age UK ? Just catching up on posts so maybe more news from you elsewhere. Have the family coming to do my lawn tomorrow, little cheaper than a professional.

[Izb1]

Hi adamclan, ring the blf helpiine in the morning 03000 030 555 they will advise. Good luck. Irene x

[adamclan in reply to Izb1]

will do thank you first thing in the morning adamcian

[Ellena]

Lots of good advice here adamclan. I pray you get the help you need and deserve. I know what you mean about Doctors in Surgery’s, happening in all areas these days. Good luck, we are all rooting for you, you are not alone when you can ask friends on here. Take care. X

[adamclan in reply to Ellena]

hi ellena thank you so much for the advice I already started today you have all given me a kick up the bum I feel better knowing what to do loads of love to u all adamclan

[Ellena in reply to adamclan]

Well done adamclan, all good wishes to you xx

[cofdrop-UK]

Hello Adamclan,

Not sure from your post what kind of help you are particularly referring to, but it sounds to me you need help perhaps on three fronts. 1. Treatment for your cystic fibrosis. 2. Help with personal care. 3. Finalcial help.

I am assuming here rightly or wrongly that you are in the UK.

1. I am wondering at what age you were diagnosed with cystic fibrosis. It does seem strange to me that even if you had non cf bronchiectasis, let alone cystic fibrosis that your treatment consists solely of inhalers. You should be seen within a cystic fibrosis unit, which are usually within large cities. If you could let us know roughly what area you live in, we could probably let you know the most appropriate consultant for you to see. Your GP doesn’t sound very clued up on CF either, but if you are experiancing what sounds like an infection you need to see your doc and perhaps ask for a sample of sputum to be sent off and marked ‘CF Protocol” It is important to know what bacteria you are growing.

2. Personal care or care in your home. You have had some very good advice from your new friends above - BLF, Age Concern etc. You could also contact social services and/or your GP may know who to contact i.e. Social Services/Occupational Therapist.

3. You might want to apply for, if you don’t already get Attendance Allowance. It will make it easier and less stressful for you with regard to the extra cost of living with your health conditions.

I have just turned 70 and live on my own and have also lived with bronchiectasis, as you must have done if you have cystic fibrosis, from being a baby. From the high self management I have every day to try to control my bronchiectasis, it sounds as if you need lots help and better treatment to manage your cystic fibrosiss and all it entails.

Please keep in touch with us and let us know how you get on. We are all here for you.

Love cx

[adamclan in reply to cofdrop-UK]

cofdrop I am in awe of you have got loads done have been in touch with occupational therapist and social services have been in touch with doctor who I see tomorrow the hospital they have given me an appointment for the end oy june all the doc says your lungs are terrible you only have a quarter left I am not someone who complains but I am starting tomorrow I am in a bungalow for the old and disabled there is more than 60 ft of hedgeing a 60 ft garden and 4 more gardens to look after got a big list here I am starting toadamclanmorrow with the council you have released an ogre thank you to each and everyone

[adamclan in reply to adamclan]

adamclan

[cofdrop-UK]

Good on ya. Go for it and be your own advocate. You deserve to be treated well. Here’s to the new ogre!

Let us know how you get on.

Love cx