Hi, I used to use the BLF community where I found a lot of advice and comfort as I have been speaking to a few people about my Nan's condition, having COPD, and coping with it.
I'm hoping that a few people that used the old site will have come over to this one, I will post their names to see if they still use them, as well as my first message to see if anyone remember's me and my post.
""I just thought I would come on here and get some advice and comfort as I've been looking round and there are so many people going through the same thing as me and my family. I am 19 years old, the oldest grandchild of 6 and therefore I do a lot for my nan and grandad and I am very close to my nan in particular.
My nan was diagnosed with COPD - emphsemya - around 11 years ago. Over this time she has gradually gotten worse, more so over the last 2 or 3 years. At first she could carry on doing everything she used to do, work, cook, clean and go out with friends and family. But slowly she has got worse over 3 years so now she is house bound, uses a NIV at night, uses nebulisers 4 times a day and takes a large variety of medication to help her. Last Thursday, 19th May she was taken into hospital by ambulance as when she came off the NIV machine she couldnt get her breath, started to sway and her lips were blue and she had a terrible lower back pain that she had never experienced before, she was taken to the resustation room at hospital where they gave her a steriod drip and antibiotics as well as chest xrays whist she had about 4 nebulisers to help her breathing and the doctors monitored her.
The whole time she just held onto my hand with both of hers and I stood there and felt so helpless. A few hours later she was put on a ward in a side room and a doctor came to see her and my grandad. When my grandad came from the room he was fine, although he was upset at seeing my nan this way (they have been married for 50 years, so they really are soulmates) we said good bye to nan and went home as it wasnt visiting time so we had to go home. As soon as we got outside the ward my grandad broke down sobbing, which was so hard to see as I have never seen him cry before; once he composed himself he told us that the doctor had said to my nan that there was nothing more that they could do for her and it was a matter of time and making her comfortable because she might not go home again. We went home and later went back to the hospital for visiting hours to find that they had put nan back on the ward.
She didnt say anything about what the doctor had said, and neither did my grandad, we just sat and talked to her whilst she sat there on her NIV machine, so she wasnt talking back to us, but she held our hands and tried to be strong but in hy heart I know she is so tired. Her lungs were a very low capacity but now they have almost stopped working. They kept her in hospital for a week and she came home on Tuesday 24th May, something that I didnt think would happen if I am honest, when she went in on thursday last week. She is still really breathless and struggling with her breathing but they let her home as they have said to her she has approx 6 months, and she could have stayed in hospital for this time or to go home.
Our family are the type that hear some news but when we get home we never talk about it, we just go on with our day, but we all know that she is really not well, I'm strong in front of my nan, but as soon as I get home all I want to do is cry, but I cant talk to my close family about this and my friends dont understand what she is going through. Which is why I came here as I hope someone will be able to give me some advice or just have a chat with someone. Sorry this post is so long but my heads full of things I guess I just need to get out.
Abbey x""
I posted that last year, with the same user name that I have now, I spoke with a few people, I hope that people will remember me and I can still speak with them.
Wheezy
ingrid
Lorien
Allison
harry
CarrieMe
rita
Tru
Hope you get in touch soon
xxx
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abbey-1991
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I was not here last year Abbey but I hope you don't mind me replying. You tell a very sad story and one we are all familiar with. However, what shines through is the love in your family and I hope this keeps you strong and helps you pull together.
Hi Mary, thank you for replying! I have found a lot of comfort from just chatting with people that have the knowledge of COPD, a lot of my friends don't understand what it means or how it feels. I posted that comment over a year ago, things change so quickly and sadly I lost my Nan last wednesday, after her 15 year battle. I felt I wanted to update everybody as they've all been such a comfort to me.
Thank you so much for your comment, it really does mean a lot - I've had a bit of hard time watching my Nan be so poorly and not being able to help, however I feel I can speak openly about my feelings and everyone else is understanding
I'm sorry your Nan is gone. However, what you must do now is focus on the good times you had together and don't underestimate what you did for her by being there and letting her see how much you cared. You can always talk on here. Good luck for the future. xx
what a lovely blog, your parents and grandparents must be very proud of you and the love in your family is obvious. keep coming in and talking to the lovely people in here. I have seen wheezy blog on here not very long ago. xxx
Hi I havn't been on this site very long but realise I can say anything on here and people understand your family are very lucky to have such a careing person in their midst.
I have emphysema and don't think my children realise what a struggle it is day to day.
Hi Abbey, i was not around last time you wrote but like your nan i to have copd but in the early stages [i hope] and i get tired shaving in the mornings.
the trouble is that most people dont like talking about illness and things that are worse but since i have spoke to my family it seems better and have told them not to shy away from asing me questions. I send you my best wishes and to your NAN be strong i am here if you want to talk and live in Manchester where there is a lot of COPD.
Hello Abbey It's good to 'meet' you. I'm fairly new on here too, and I hope you will accept my deepest sympathy and sincere condolences on the loss of your beloved Nan. Please also pass on my kindest regards to your Grandpa.
I had a similar experience to yours with my own mother, who died of emphysema at only 58 years old, although it's a long time ago now I still remember the struggle of coping with the fact that there was nothing I could do to relieve her suffering. I remember the doctor, at the time, telling her that what she needed was a new pair of lungs but unfortunately that was not possible then. Amazing advances have been made since.
My thoughts are with you and your family at this sad time. There are no other words, just yet, that will help alleviate your loss but you are taking the right step forward in being able to talk about it.
I too am quite new but was moved by your story. What a caring person you are. I also have COPD but am doing all I can to try to stop it getting any worse (I am moderate).
Hi Abbey, I am ingrid, and yes I remember you well. I am so sorry to hear that you lost your wonderful nan. You can take heart though that she is now at peace and free from the struggle and pain. Your grandad will miss her dreadfully, but you will be a tower of strength to him.You are a grandaughter to be very proud of, you have been there every step of the way. It is very hard when family dont want to talk about things, but some people are just made like that, and that is the way they cope. Others need to talk and bring it into the open, thats why places like this are a godsend. You can say how you feel, ask for advice, or just find a friendly ear to listen.. I send you big hugs Abbey, you must feel lost now, but your nan has left you with beautiful memories to treasure, so try and focus on the good times, and share them with your grandad. We are here Abbey, whenever you need us.
Thank you Ingrid and thank you to every single person. I am so proud of my Grandad for the way he so selflessly cared for my Nan until the very last moment. I am so proud of my Nan for fighting such a hard battle, I moan when I have a cough or cold, so how she remained strong for 15 years is beyond me!
For those with COPD, be strong like Nan - no matter what happened she laughed everyday and you all must too!! Its the main memory I have, Nan throwing her head back, laughing!! It makes me smile because it shows how carefree and happy she was even at times of struggle!
I will stay on here for a long time, I do feel like people care and I am so greatful for all the support.
Bless you Abbey, I am sure you have made us all smile with the picture of your nan in our minds, throwing back her head and laughing. Laughter is the best medicine :0) although not always easy. I am so greatful for every day that I am able to enjoy my family. I am now on oxygen, but its not so bad once you get used to it. I am looking forward to my daughter coming home from australia for xmas with her hubby and my 3 yr old grandaughter. There is always something to look forward to. I am so glad you are going to stay around Abbey, I look forward to hearing from you and know how your grandad is coping. Enjoy each others company with happy stories of your nan. Yes Abbey, there are lots of people who really do care. I am so happy that I saw your post. Take care, Thinking of you xx ingrid.
Hi Abbey , your message has choked me. My children are very close to their grand parents and I know how grateful they are that they still have their nan and grand dad who are both almost 90 years of age. Your grand dad is very lucky to have you. I expect you are a tower of support. Try not to ignore your own feelings though. You need to cry and grieve too. My very best wishes go to you. Take care love x
Hi Abbey Yes I have read your comment time and time again. Yes I was one of the people that helped with the trial of the very first forum on the BLF community. Yes your Post as really moved so many people myself included Abbey. What I can say which I would never have believed me saying just 12 months ago. Then I met a young 20 year old young lady on that same forum and we became very close friends till My Rach lost her fight for life at 24 years of age. That young lady inspired me more than anything in my life. I was invited to go over to her home town to say my cheerio to her and it was then when Her aunt was looking over a beautiful casket saying. The time for tears is over now is the time to celebrate this young lady's life and from that very moment I now believe in Angels because I know I have one in Rach.
Yes Abbey my love you now need to celebrate your beautiful memories you hold in your heart of your times when your life brushed along side that of your Nan. I can honestly say that She will be looking down on you with so much pride. My family and I was going on holiday however the week before we were due to leave My Aunt lost her fight again Alzheimers. This Aunt was infact the Mum That I never had. So we cancelled the first week. I knew that it was the end of my Aunts confusion and what pain she was going through. But Yes we again are now enjoying the memories we have of this beautiful Lady.
I help and support people with Cystic Fibrosis and others awaiting Transplants, on my chat line there were 3 young friends at this time. One Emma was 21 on Sunday Hay 20. Tuesday evening they let me know that they had lost their young 16 year old friend. Yes she was awaiting new lungs but they never arrived. Yesterday I was invited to a large meeting with the NHS To Explain what the NHS meant to me. Yes I was so struggling to talk and had to turn to Humour to get me through it, Because Abbey each time I checked my mobile there was a text from Hayliegh desperately needing my support So Yes I explained to the chairman why I needed to return the text and WOW everyone understood fully. I think What I am saying Abbey is yes we need to stay strong for the people like your beautiful Nan have left behind, but always remember Abbey you will be getting looked down on with so much pride Yes from your Nan, What a Special Young person you are. Now I need to go to our special site for family and close friends to talk and comfort My Rach's Mum, Family and Friends. Yes it was 12 months this evening when we lost Rach. Blessings and Love travelling to you Abbey. X
Again, everyone is so kind and I do love hearing about everyone and how they are also doing;
Ingrid - when my Nan first had her oxygen she didn't like it and we thought it was strange; but over the years we became used to it, only beiing reminded of it if we tripped over the pipe, as Nan had a machine in the dining room and a long pipe as she used to walk all round the house and even had a bath when she was well - how strage it must look to an outsider to see a mass of pipes going everywhere. But we never noticed it, it became such a regularity we never looked at it. I always say, we overlooked the pipe to see the person we loved.
Breathless - it is so lovely to hear about your family coming over from Oz, must be exciting expecting them!! But so very sad to hear about Rach and how much of a friend you are; I admire you becoming a support for other people - its amazing how people can go through heartache, yet help other people overcome their own sadness! I wish I could do the same!
You say such lovely words to me, always making me smile; bringing me happy tears, and not so many sad!! You are all very inspirational to me!!!
Hi everyone; Nan was finally laid to rest today. Rain was forecast however he sun shone all day! We played 'REM - Everybody hurts' as we arrived in the church, which was packed. And then Nan requested 'Barry White - My First, My Last, My Everything' to leave the church - rather fitting for my Nan and Grandad as they were each others first and only love! We had so many flowers, they were beautiful! I didn't speak in the church, no one did, the emotion was still far to raw. At the graveside we said a prayer and I stroked the coffin one last time and Nan was laid to rest. The white dove was released by my Grandad and he said 'off you go Jan, peace at last' which was so lovely because it was like Nan being set free from pain and being at peace. A feather fell from the dove, which I have now got and will treasure forever. That to me was my Nan leaving a little piece of her and a little bit of peace behind.
Remember:
Its not good bye forever, its just farewell for now!
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