I don't know what to do to help

Hi all. I am new to this site. My Mum was diagnosed with COPD a few weeks ago this has made her world come crashing down and is now going through a state of depression. She is a member of this group and wrote a question a few days ago regarding breathlessness but it was me who sat with her and encouraged her. I thought she was getting through the initial shock (she didn't even want to phone the helpline) and her mood picked up a bit when I told her about all the wonderful people on this site. She visited the dr the other day who prescribed Anti depressants and told her to forget she had COPD and to let them deal with it. I have tried everything to help her, encouraged her to exercise and to practise the pursed lip breathing. She has now told me to stop looking on this site as when I talk about it she feels her heart racing. She doesn't want to do anything and when I invite her to come out somewhere she says "Maybe but I don't know how I will feel" I have gone from being upset with the prognosis to feeling angry because I feel she is not helping herself. She said she wants to wait to see a consultant so she knows exactly what is wrong and how bad it is.

What do I do now? Shall I keep on at her to exercise and get out or just leave it? It's very hard reasoning with someone with depression and no one will ever know how someone feels unless they are going through it themselves but I just don't know what to do for the best anymore.

Any advice would be greatly appreciated.

You are all wonderful people :-)


44 Replies

  • Hiya Kim. I think the best answer at the moment is to wait to be honest. Perhaps just a bit of gentle chivvying now and then. Mum has had a terrible shock. Many people, when first diagnosed, feel that their life is over and it does depress them. Best wait to see the consultant and find out the true score.

    Many people go on for years after diagnosis. I was diagnosed 13 years ago at the age of 58 and I am still going strong. Others on here have been going for 20 - 25 years.Just keep telling mum it isn't the end of the world even if at the moment she thinks it is.

    You will need to be patient and strong with her. But don't forget to look after yourself too. Just keep coming on here for advice and guidance. There is no other site with as much experience of lung disease as this one. If you get stuck click on the red balloon at the top of the page for the BLF phone number. Their nurses are wonderful and full of advice. Wishing you every happiness.

    Bobby xx

  • Thank you Bobby, this site has been great. All I did was cry at first and think the worst. I have my own family but I have felt I have neglected them recently. I go to bed thinking about my mum and I wake up thinking about her. I just want to take it all away from her. I feel helpless. I'm hoping things. Will improve once she has seen a consultant. God bless you. X

  • What a lovely daughter you are . Firstly it is normal for your mum to be feeling the way she is . Its a huge shock to the system but as many of the lovely people on here who will post replies after me (lots have much more experience of living with these conditions) once she has seen the consultant hopefully she will get lots of information local to her where she can go to meet others with similar so she can see first hand that life does still go on normally . When your down and being told you have a chronic illness it does take time to come to terms with things . Once this happens im sure your mum will see things clearly . Exercise healthy eating no smoking will all help plus making more effort with hygiene to stop picking up germs . Im usually infection free in warmer months but as soon as the cold and flu season starts i catch infections which knock me for six. So get some manuka honey 25 every day antibacterial wipes for use out and about boots or vicls 1st defence spray up nose when going out in public vitamins and taking precautions will help keep infections at bay. Take care and dont beat yourself up you sound lovely xxxx judith

  • Thank you Judith, you have all been wonderful. She normally knows when she has picked up an infection as she coughs a lot more but I will encourage her to be more cautious in the winter months. She keeps saying how it doesn't seem true what the dr has told her and that's why she wants to wait for confirmation from the consultant before she can concentrate on anything. Thank you for replying to me. God bless. Xx

  • Hi Kim, Please try and get your Mum to come on this site even to read some of the posts or questions, we have all been there everything from mild copd to aggresive stage 4 or 5 Idopathic Pulmornay Fibrosis, we all need help and support and answers at some time or another, once she gets used to her condition and starts her medication it's not all doom and gloom beleive me, She can pick someone and pm them (personal message) if she just wants to be reassured on some aspects of her condition, I would love to do a pm with her when she feels like it I have only been here for 16 months but it's the best thing i have ever done I was the same as your Mum very scared and confused and depressed, Good Luck Mattcass

  • Thank you so much Mattcass. Lets hope she starts to feel better soon and I can tell her about all you wonderful people and hopefully she will message you when she is ready like you said. She is in a dark place at the moment (drs words) and she needs to overcome this first. I wish you well and thank you again.xx

  • You are a wonderful, concerned daughter who wants to do all you can to help, encourage and support your mother. You have found this site which has lots of info, help and advice which you want to share with her.

    Unfortunately she is not ready to 'receive' all this info. She is in shock and cannot/does not want to hear it, yet.

    You need to be patient and, in your keeness to help, not overload her. She has said she'd like to wait until she sees the consultant so I would accept that, take it at her pace

    It is very difficult for you to see your mum like this but as judith says it does take time to come to terms with things. I know because, although I have had my condition for many many years and thought I had come to terms with it, I had to start oxygen therapy last autumn. It took the feet from me emotionally and I still haven't been able to go into town with my oxygen on. My hubby is very good and will take me wherever I want to go, but when he starts 'pushing' for me to do something that I am not ready to do I get a tight feeling in my stomach, tell him to stop asking and I will do 'it' when I am ready. Sounds like your mum? I feel guilty snapping at him because he is trying to help.

    It is hard to understand, but she needs to grow into her condition a step at a time. And she will settle down. The consultant will give her info in bite size pieces on a need to know basis. Unfortunately, with internet access, in todays world we can get hold of so much info about our conditions that we can know too much too soon, and jump to all sorts of conclusions scaring the life out of us!

    So what do you do. I would do as she asks and stop talking about it. I know you are feeling angry at her because you feel she is not helping herself but you need to give her space. Step back, and be the loving and supportive daughter that you are. Talk about spring, the weather etc and let her know that, when she is ready, you can take her shoppping/ for a little drive/ to visit someone. Tell her its not important if she feels at the last minute that she can't do it - she's not letting anyone down.

    Meanwhile you need this site! Come to us when you are upset/frustrated/angry or just looking for info. No one here will snap at you or judge you - we will support you and guide you. Take care of yourself, your mum needs you.

  • Thank you so much you have got it spot on. I want to wrap her up in cotton wool but yes she probably feels overwhelmed with all the information I am giving her and I need to take a step back. I know she doesn't want to just sit around all day doing nothing as that is not like her so once she is feeling better she will let me know. You have all been so wonderful and when she is ready to come on this site I will tell her about all your lovely comments.

    You too sound like a wonderful, brave lady. Like I said unless you are going through it no one will ever understand what it is like. Wishing you well and thank you again. God bless


  • Hiya yes this website is an life line, i am Tigerhouse's worst half ( hubby ) think it best to let your mum know that you will always be there for her, but Perhaps above all else you must allow her to live at her own pace & time, she will need all the support you can give, but on occasion you will find it hard to summon the strength to do that, it can be as hard on you the carer as it is your mum, wait until your mum has seen the consultant & go from there, my wife has just started going to the royal brompton in london , they are the specialists and so far them seem to be quite impressive, but as other members have said this sight is a goldmine of information & if you are stuck you can ring the b.l.f helplines for almost anything.

  • That was very kind of you to post on here Mr.Tigerhouse. It's nice to see things from a carers point of view.

  • Thank you Tigerhouse's worst half. I'm sure she doesn't see it like that. I'm sure she appreciates all that you do :-)

  • good evening, she's a real fighter, god bless her , love her so much , yet she suffers so much

  • Thank you all for your wonderful replies. I'm sitting here with tears in my eyes. Our family have been through so much in the last 5-6 years. My Dad is 81 but you wouldn't believe he was, he hides his emotions. We have nearly lost him twice when he had a perforated bowl. My Mum was the strong one before then, enjoying long walks and never needing the dr for anything. Since my dad was ill her health slowly declined and just after my dad started to get better my mum's health started to deteriorate. 4 years ago a scan showed a shadow on her lung and at first they thought it was cancer but it turned out to be TB, we think this is what caused the COPD she has never smoked in her life. She is nearly 76 now. I have a brother who works away a lot and never seems to be here when things are tough, I feel I am carrying the weight. I have my own family but my Mum and Dad are my world and I will do ANYTHING for them, as would any son or daughter. My Mum keeps saying "You have your own family now" I give her lots of hugs and tell her everything will be fine and that we will get her through this. I asked her today if she wanted to come over for Easter dinner but she just said "I don't know yet, see how I feel"

    You are all wonderful people and I am very grateful for all your advice. Thank you so much.


  • This may be of very little help ...... Its been about 10 weeks since my big fright. At home I don't like general talk about my condition; I don't like hard questions when I know I won't like my own answers; I don't like being given 'helpful' information about it. I can manage to mention things like getting a bit of weight off or food tasting a bit odd or my odd crokey voice. Nothing heavy. I want things sort of normal for now.

    Don't forget, she is your mum not your daughter ! You must do as you are told...

  • She mentions exactly the same thing. She doesn't want to eat because the steroid puffers give her thrush and can't speak for long because of her croaky voice. Everyday I phone hoping that one day she will say "I am feeling good today"

    Yes I she is my Mum but the way I see it is she has looked after me for most of my life, it is now my time to look after her. I have started to stop talking about it. Maybe she just needs someone to listen to her rather than someone to keep going on at her.

    Thank you for your reply and wish you well.

  • I could relate exactly to how your mum has reacted to her diagnosis. my husband and myself are the same age as your parents and we both found it hard to come to terms with my copd. I went through stages of depression, panic and being very irritable with my family when I couldn't breathe, and coughed so much I couldn't talk. However 3 years on, after many infections which needed treatment in hospital, I am living happily (most of the time) with the condition. it must be hard for you, watching your mother's decline. Give her time to accept her condition. This site is wonderful as everyone here knows what lung disease is like. Encourage her to enjoy the good days, especially now that summer is on its way. She already knows she is fortunate to have a daughter like you who cares, so don't loose heart, and continue to be patient. Her life has been turned upside down.Good wishes to you both x.

  • Thank you so much and wish you well. X

  • Hi, my husband was similar when he was diagnosed. I think it is the same for many people shock, fear and also maybe a sense of losing control in some ways. Keep as positive as you can when with Mum, it may take time but eventually when she sees the consultant and has all the facts and sees all the help available she will adjust. Don't forget to look after yourself though. Take care

  • Thank you. I think my little ones help to keep her mind off things so I take them round as much as possible. X

  • Has she had spirometry test. I used to use a peakflow you can get easily ...to monitor my breath capacity. .. can help to see it improve slightly when doing things good for you .... not immediately after exercise though:). It may be a gentle start into seeing for herself that she hasn't got as good breathe as she did and that she can help herself as much as poss too. Best wishes. She is very lucky to have you as a daughter. Your own anger at this just being so is very natural you know. X

  • Yes she has had a test done but dr didn't tell her the results. She did have an emergency appt a week or so ago because her breathing was so bad that she couldn't manage it and the dr (who was filling in) took her oxygen levels and he said they were very good. The steroids he gave her seemed to do the trick but then when she went back to see her normal dr he took her off them and she seems to have got worse. I told her to go back but she says she will give it a few days. I have mentioned that people's lung capacity have improved through doing the breathing exercises etc. I will mention the peak flow or maybe just get it for her without her knowing.

    Like anyone you just ask "why us?" thank you for your advice and comments. X

  • That's great thank you.

  • Oh bless you ....its not nice when loved ones become ill and tgrough that illness becomes changes in personalty. Your mum is

    Probably trying to make sense of it in her own mind......i know i amstill coming to terms and like your mum i have never smoked so to end up with something to do with lungs is very hard to deal with. It is a process to go through but by taking precautions and getting good advice (do you think shes been looking on internet? Because that will scare anyone!!!!) By coming on here you or mum can ask questions and people who are living with same will answer truthfully . Take care of yourself too as ive beej in your shoes and it can run you crazy we are not superwmen!!! Xxxxjudith

  • It isn't nice but she has lots of support through family and friends. I think at the beginning we didn't know exactly what we were dealing with. I think as soon as you hear 'Lung disease' you automatically think the worst. I don't think she has been on the Internet. I started to look but as soon as I saw the words "Life expectancy" I stopped myself. I was honest with her. I told her that I was worried, I had thoughts of her not living much longer and in a way I was going through slight depression. Then when I came across this site my outlook totally changed and I feel so much better. What broke the camels back was when I was talking to her on the phone she was going through a breathless moment and she said to me "I don't think I'm going to be in this world much longer" for a daughter to hear that is heartbreaking. It was like she was sitting around waiting for something bad to happen. I thought we need to get off our backsides and find out what exactly this COPD is and what can be done and I'm so glad I did. I thought if the drs are not going to help or give her information then I will do it myself. Life is so precious and we must take one day at a time and just enjoy it. Thank you Judith for taking time to respond. Xx

  • Until you all know exactly what she has all you will do is let your mind run rings into every worse case scenario. I know because ive been there but now i inow what im dealing with i can do as much as possible to stay healthy. I had similar experience with steroids and my dr has kept me on lower dose could you go with mum to ask for this till she is seen by consultant? It is unfortunate that some gp s arent up to speed with breathing probs ive found some to be yes there you go you need them or no you arent bad enough for them. Once her meds are sorted she shoukd begin to feel better. The tiredness that hits you when your breathings bad is horrendous hence why shes saying wait and see for Easter. When is her appointment to see consultant? Take care love Judith xxx ps my youngest daughter used to say to me mother come on we are going out in the car end of!!! Xxx

  • She hasn't had her appt through yet. She is having a down day today. Said she feels shaky and doesn't know whether it is the anti depressants. She said she can't be bothered to do anything and has lost more weight because she just doesn't want to eat. I did actually say I will take her out for a drive tomorrow but she didn't reply. It is days like this where I feel helpless and frustrated. X

  • It could be the anti depressents causing the shakes but hopefully this will go once in her system if not dr will be able to change them. Apart from letting her know you are there for her etc theres not much you can do until she sees consultant . If you havent heard in a couple of weeks then id be chasing it up with gp. Please try and keep calm (easier said i know) just being there for her and your dad will help . Sorry i cant help much but keep coming on here it will help you xxxx

  • You have been a huge help Judith thank you. I don't want people thinking I am craving attention and feeling sorry for myself because it is far from it. I just want what's best for my Mum. I will go with what the majority have said and just go with what my mum wants with gentle pushes here and there. I am sure I will be on here a lot and knowing people are here to listen and advise is a huge comfort. In time hopefully it will be my Mum you will be talking to :-) Thank you again.xx

  • You are more than welcome . She will feel better once shes on correct meds etc . Im only 50 and ive lived in my chair since before xmas!!! Ive been similar to your mum i couldnt be bothered with children or people because i was so worn out just breathing but slowly ive got better but ive stropped and stamped like a spoilt toddler at times so try not to worry to much at the minute. Im out and about now and feel more like me again at worst i couldnt be bothered to go and see my beloved horse (who is my world) and thats not me at all but this infection just knocked me for six. Im sure your mum will feel better once shes seen her dr and gets good advice . Anything else you know where we are take care love Judith xxxx

  • Well I did what you said and took her out for a drive today. I turned up with a hot chocolate and cake. Her eyes were filled with tears (not at my presence) but just at feeling so down. She said she shouldn't be feeling like this as its been about a month now since her prognosis. I stated you don't just forget what you have been told and expect to just get on with your everyday life it is a huge shock and it is common to feel the way she does. I haven't told her that I have been on this forum but I have relayed back what you and others have said. She enjoyed her drive and I bought her a couple of magazines I told her to sit out in the garden and have a read of them which she said she would do. My aim was to leave her with a smile on her face, even if it was a small one and I did :-) This is all down to you lovely people. I have taken your advice and your experiences and I'm so glad I did. Thank you.xx

  • Ah thats good for you to see bless you . She will come back to you just takes bit time . Im so pleased you both had a smile mind chocolate cake has amazing power!!! Keep in touch and very best wishes to you and mum xxxxx

  • Thank you squady. She is on anti depressants now and has been told she has a fast heart rate which she seems to be worrying about more now. We waited so long for a hosp appt that I paid for her to go private. She is eating a bit more now. Like a lot of people have said little and often is the key. My little baby boy wasn't well the other day and we were at hospital with him. My mum wanted to come to and it was strange because even though being there wasn't for a good reason it did seem to do my mum good, as she had to walk a fair bit to get to where we were and she wasn't breathless at all. She used to work at the hospital so she saw people she knew and she was smiling and laughing, it was like she was back to her normal self. Seems she needs that distraction. One dr told her how well she looked. We will get there and it's thanks to all you wonderful people. Keep well and thank you for your reply. X

  • It,s important your Mum keeps as active as she can.I made the mistake of stopping doing stuff and it made my condition worse.Your Mum is lucky to have such a caring person looking out for her,good luck to you both.D.

  • Yes this is what I keep stressing to her that she has to to exercise but she just doesn't want to do anything which is getting me cross. I don't want her to get worse but then I think once the depression is sorted then hopefully she will feel more like going out. Thank you.

  • That word "exercise" is the problem it suggests pushing oneself.Maybe just suggest a short walk to the end of the road or just to the corner for some fresh air.I,m going by how I would react,we are all different and Copd is a particularly individual disease.Also remember you have your life to lead too,it must be so hard for you,poor thing!

  • Well today I rang home to see how she was my dad answered and said she was in the bath, he said she just wants to sit in the chair and do nothing, he also said that as much as she loves my 2 boys, her grandsons, obviously, she doesn't want to see them because she feels she has to play with them and this wears her out. I didn't know she felt like this and he said she is almost like a manic depressive. I always thought it helped bringing my boys over but clearly not. I'm heartbroken. Dad even said please dont stop phoning or coming over, like she doesn't want to see anyone. Last week she was doing so well, I just dont get it. My Dad is 81 and has been through so much he needs looking after and my brother works away. I am the only family they have.

  • Dear Kim,

    For both yourself and your mum, take it gently. No use forcing someone who doesn't want something, and no use forcing oneself. As others have pointed out, your mum will bear this until she sees the consultant. After that will be a reassurance for your mum to see "an expert".

    In the meantime, you can talk to us and ask questions.

    Should I mention my wife? I've told her about exercises, but she has never wanted to follow me to the gym or do any Tai chi at home. Getting angry, is out of frustration, but take the gentle approach rather that the "bullying" one ( I don't say you are a bully, but your mum might feel it that way if you go on about it!).

    if she sees a consultant, perhaps you should go with her and suggest to him that she should be referred to a Pulmonary Nurse Team. The nurses are really good and kind. They know what patients go through. They also know about Pulmonary Rehabilitation, which is about assessment, meeting with others and doing exercises. This approach might be more softly, softly, especially if your mum could see others and get friendly with people with her condition.

    Play it by ear ... gently! with a smile. Hugs from all of us to a terrific daughter!

  • Thank you and yes you are right, I need to play it by ear and take each day as it comes. I suggested a spring show tomorrow at our local nurseries but she said no, I then offered a little drive and she said maybe so I compromised with starbucks hot chocolate and cake which she agreed to :-) she said she was feeling extremely down today and went to bed early. I was once again in tears. Hopefully she will get an appt through next week and yes I will go with her. Thank you for your advice. Take care.x

  • Hot chocolate is a favourite of mine! I make them with whole milk, gets me fatter as I need to gain weight! Take care and... good sip!

  • It went down a treat and so did the little drive I took her on. Like I said to Judith in a previous comment my aim was to leave mum today with a little smile on her face which I did. It's all thanks to you and other's advice and experiences. Thank you.

  • Hi Kim, I know exactly how you feel because my Mum also has COPD and was diagnosed with it about 8 years ago. My Mum refused to read this website and like you I told her about all the wonderful people and how it is nice to know that you are not alone. However this has recently changed as my Mum is now coming to terms more with her illness and realising that she is not alone with it. So be paitent with your Mum, its not easy and it can be heartbreaking. I sometimes try and imagine what it is like to be a sufferer and can understand to a certain point how frustrating it must be. I try and listen more to my Mum rather than tell her what to do and the more you get on at them the more my Mum would dig her heels in. Anyway Kim, Its nice to meet someone who also has a mother who has COPD. I'm here if you wanna talk. Janice x

  • Thank you Janice, this forum is certainly a godsend. Everyday I was asking her, how is your breathing? Are you practising your breathing? Make sure you exercise, have you eaten? I was also relaying info from here to her everyday. She listened but you could tell a lot of the time she was thinking 'Ok Kim enough now' She has now been diagnosed with Tachycardia (fast heart rate) so is worrying about that. I booked her to see a consultant privately so she got seen a lot quicker. She seems a little reassured. She is also on anti depressants. I think there is only so much you can say or do, I told her this and I said the rest is up to her. She is slowly beginning to smile again but I know it will take time. Thank you for your kind words and if you also need someone to talk to I'm here. Take care. Kim x

  • Thanks Kim and its always nice to know someone is there to listen and just chat. My Mum also got diagnosed in January with slight heart failure, very slight but it was really scary and I just felt at my wits end, I cried that night and like you just wished that I could take it all away from Mum. Now Mum is feeling a lot better and doing regular walking (only around the block) but its exercise for her. It will take time Kim and you have to be patient and just be there for her. You too take care and thanks Janice x

  • Seems problems with the heart go hand in hand as it is working harder to get blood to the lungs. It is scary though. Need to take each day as it comes. Look after yourself.x

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