Wish I understood

Hya guys, hope everyone is as well as can be!

I seem to be getting no where.

My dads copd has got worse over the past 6 months resulting in him on 1l of o2 throughout the day and a bicap mask worn at night.

At the moment I feel I'm on the verge of a breakdown, my dad seems to hit the bottom again. Not eating or drinking just sat in his chair having hot and cold flushes with each wave of anxiety that passes.

I feel I'm banging my head against a brick wall and throwing the towel in and just leave him be. But I can't.

I truly understand that he's not well but when he's not willing to help himself I get annoyed and found myself shouting at him( bad I know) but I need him to understand if he listens to me he'll feel much better. How can I get him to know that I'm only telling him the truth and what's best for him. Before its to late.

Thanks for taking the time to read x

43 Replies

  • Hi Melissa87

    It is very difficult getting some people to understand that they have to help themselves. I had a friend who has suffered from Asthma most of his life, was diagnosed with copd beginning of last year. Ended up in hospital twice with breathing problems, his last visit he was in for 9 days, could not smoke. Huge hospital bill which his sons had to pay Plus their flights to get here as he told them he was on his way out). Was told by the doctors that he needed heart surgery. Came out of hospital and immediately lit up. Within 24 hours he was back up to 50-60 cigs a day and first whiskey at midday. His sons were disgusted with him. I tried to talk to him about changing his lifestyle, but he would not listen me saying that i did not know what i was talking about. In the end i gave up and have not seen or spoken to him since last March.

    All i can suggest is to get your Dad to read some of the stories on here, get him to watch pulmonary exercises on youtube...which he can do sitting in his chair. He needs to realise that there are people on here with worse symptoms than he has and they are getting on with their life.

    I suppose it comes down to whether he has a computer and if so is he able to use it.

    Good luck


  • Thanks Merv, I have should him and explained the stories of some of the people here hoping that he'll stop feeling so sorry for himself and start helping himself. It's got to the state that he'd rather sit with his dressing gown on sweating rather than take it off and have to put it back on again if he gets cold because he gets out of breath! He won't drink during the day because he doesn't want to walk to the toilet. He's acting like a child I've obvisouly checked his obs and they're fine.

  • Hi Melissa

    Being dehydrated is only going to make him worse.

    If he won't eat or drink, try making some fruit smoothies. This will hydrate him plus give him vital vitamins. A smoothie made with berries, black, blue and rasberry, plus a banana and honey. The berries are full of vitamins.

    I juice fresh veg, apples, ginger, oranges and lemon every day, then add to a blender with berries, banana, pineapple and mango. I make enough for 3 drinks, one immediately, one with my lunch and another mid to late afternoon This gives me all the vitamins and nutrients i need each day plus....i have not had a cold or flu for just over 5 years.


  • Hi Melissa, I know it's difficult to understand as even health practioners don't sometimes....that a good SATS reading doesn't always match up with the level of breathlessness, fear and panic.

    Thinking of you both.

  • I afraid they are old school my dad had empysemua and was on 24 hr oxygen but still continued to smoke even 48hrs before he died didn't matter what you told him he still did what he wanted if only he had listestened he could have had longer it is so difficult for you to but no matter what I still just did what he wanted because he was my dad and I wanted him to be as comfortable as possible we also had help with carers coming in which did help is that something you could do just to take the pressure off you they can be so stubborn

  • He doesn't smoke and hasn't for about 20 years, but he suffers with terrible anxiety and is using his ventolin pump to the point he's using one pump a week.

    He is only prescribed 12 diazepam and 2 ventolin inhalers but they're gone in 2 weeks so the he goes into melt down. The respitory nurse has told him that his lungs are so bad that the ventolin is having no effect on his lungs but he won't part with it. I'm waiting to here from the resp nurses to try and sort is meds out because his gp isn't interested.

  • Hi Melissa again, your reply came after I had written mine...sorry.

    I would ring your GP s surgery today and explain what is happening both to you and your dad......your GP has a duty of care and you are both suffering.

    His medication needs reviewing now....I could not manage my breathing with just Ventolin .

    Can you ring the BLF helpline today as well, they can make an appointment to ring you back if they are busy.

    Please ring your GPs surgery as soon as you can ....you both need help today...

    If you get no joy ring 111 and explain about your Dad.

    Thinking of you both

  • Hya hun sorry I didn't make myself clear. He's also has a steritide pump to use twice and day and spiriva once. He must use his inhaler 15-20 times a day, then complains his heart is racing. X

  • Melissa,

    If his lungs are so bad that the inhaler isn't working, this means he isn't inhaling deep enough to get the meds down in them. He should be using a nebulizer. I have to use the nebulizer for all of my lung meds for the same reason. I do carry ventolin with me, but I use the nebulizer for my albuterol and it works so much better than using the inhaler. I woke up one morning about 3 months ago, walked to the bathroom and felt like I had ran a couple blocks, I was so short of breath I couldn't believe it! My 02 sats were 95/97 but I sure didn't feel like they were.

    I started Pulmonary Rehabilitation last week and praying this will help with the SOB. Anyway, I think you should ask the nurse about the nebulizer. As for his gp, I would fire him and get one that cares. It sounds like he is one of those that feel the most of us with COPD brought it on ourselves so we shouldn't be bothered with!

    You are a wonderful daughter, he is very lucky! Please take care of yourself, being the caregiver takes so much out of a person, physically and mentally. I hope the nurse can help.


  • Thank you for your kind words! Unfortunately he won't entertain the idea of using a nebulizer I've tried to get him to have one. The gp just say that they can't adjust his medication he has to speak to the resp nurses but their so busy. He's got an appointment in March to see the consultant but if things continue I don't think he'll be herex

  • I gained from reading your reply to Melissa. I purchased an oximeter and at times when I am sure I must have a very low oxygen reading it will turn out to be not that bad and it puzzles me. It also puzzles me why my doctor doesn't want me "sucking on my nebulizer" (as he puts it) all he time. I purchased a small, hand-held, battery operated nebulizer that has just been such a blessing to me. I don't know if it's allowable for me to state the name of it here so I better not. I would highly recommend this nebulizer for anyone with breathing problems and if you know that it's okay to print the name and you want it let me know.

  • My husband has panic attacks and is on laraspan and now l antibiotic every day and although his breathing has not got any better in himself he is so much better and happier.

  • Hi Melissa, I do feel for you as my mother refused to eat or drink either....but she used to shout at me....she wasn't breathless though.

    Remember the effort of breathing is all consuming for your father, as you say just taking off his dressing gown will make his breathlessness worse and his anxiety levels rise. I have felt the same on occasions even when my SATS have been reasonable I feel very short of breath and tight chested.

    My friends mother is not eating or drinking enough too, and one reason is that her bathroom is upstairs and she has emphysema.

    If you live in the UK , Social services can help with physical aids ...does he have carers coming in to take some of the pressure off you.

    I would talk to your father's GP as well as your own about the situation you both are in and how you feel.

    Take care...and remember there is someone here to listen .

  • Thank you, no we don't have carers. I couldn't just sit back and let them look after him. Atleast I know what's what when I'm there. He does live in a house but we have a downstairs toilet but he does get out of breath just going that short distance 30 ft if that. I can totally understand his reluctance to do things because he'll get oob but he'll end up just staying in bed if he had his way. X

  • I have COPD so I know what your dad is going through. And believe me when I tell you that there is not anyone who understands that who does not have this disease. No matter how much you think you know, there is no way you do or can understand what your father goes through.

    It broke my heart to read that you shouted at him. If I had to deal with someone who is supposed to love me shouting at me, on top of everything else this disease brings, I don't believe I could go on.

    Do you and your dad have the Lord to take your burdens to when they become too much? I could never go on with life if I didn't have Him to talk to and to depend on.

    I'm sure it is hard for you being the caretaker for your dad. But please be patient and kind. Take this to the Lord, who loves you both, and ask for guidance and strength.

  • Nikilet, do you think you could edit out your sentence beginning 'it broke my heart'.

    Thank you. It is obviously horrendous to suffer as you and Melissa's father but chastising her wont help, only make her feel worse.

    She is doing her very best here. She is on her knees with looking after him, is probably sleep deprived, exhausted, frightened of losing him because she loves him so much.

    It is extremely hard to look after ill people and she does not have the help and support she needs so badly. she has looked to us for a little support.

  • Yes, you are right and without really meaning for it to go that direction I can see that my reply did. I apologize to Melissa for this. It's just that because of my own life, I think it is just so hard for people who are not continuously struggling for air to know what it's like. There have been many times when I have sat on the edge of my bed in the wee hours, having to go to the bathroom so bad and scared to get up and try to make it the 12 feet to my bathroom and back again.

    Again, if you are still reading these replies, I apologize to you, Melissa.

  • Bless you for that 😘

  • Believe me I didn't do it with intention to make him worse! He sits there begging for me to help him but when I offer what he needs he refuses. He's 62 probably not 50kg he's not eating or drinking and he wonders why he doesn'tfeel well. I just want him to know that he's not doing himself any favours.!

    In respect to asking the Lord for guidance my faith isn't at the strongest I lost my mother 13 years ago to breast cancer. She was 42 Iwas 16, now iI'm watching my dad die infront of me. Thank you for responding x

  • Hi Melissa you don't need to apologise. You are doing the best you can for your dad. I lost my husband 3 years ago and my mum 5 years ago and can under stand what you are going through. Try and speak to your GP to see if you can get help take care thinking of you xx

  • Melissa, what a bag of sh** life has thrown at you.

    It's ok for someone to say "you can't understand what it's like" but until THEY have nursed a loved one through a long terminal illness, and felt the complete frustration and impotence, bordering on rage, when they refuse to do a thing to help themselves, and seem determined to fade away in front of your eyes, apparently without thought for your feelings, THEY can't possibly know what that's like.

    I've been in your position, and felt exactly the same. You're a loving daughter, doing your utmost in the most difficult and tragic of circumstances. You have absolutely NOTHING to reproach yourself for.

  • Hi Hanne, I think I can see the situation from both sides...my mother refused all food and drink ....she was suffering from paranoia and no one could help her.

    But I also have been so breathless that even the thought of moving a few feet was truely terrifying .

  • Hi Melissa....seems there's not much more you can do.

    I guess that after banging my head on the wall....I would come to my sences and tell him that it not fair having to put up with so much stress and unless he acted sensible you can not help him anymore.

    Try speaking to his doctor...you can phone and explain yours and your dads situation he will be able to help you.

    Just keep on pushing for help and you will get it.



  • Hi again..Melissa....am a bit slow in writing so there was other replys that I did not read...

    Kititter has said all the things that I was trying to say...

    I hope you will take that advice.


  • Dear Melissa, what a difficult time you are both going through. My thoughts and prayers are for you both.

    The sad thing is, that there is probably very little you could say that will change the choices your father is making. After getting him all the help you can, such as going back to the doctor as others have suggested, the only thing you can hope to change in the situation is your own attitude, for your peace of mind. As painful as it is, sometimes we need to let others make their own choices, even if we realise those choices are destructive.

    My mother gave up eating and drinking after she'd had three disabling strokes, because she had given up and didn't want to live with locked in syndrome any more, hastening her death. My previous husband Bob continued to smoke after his COPD and asthma and heart failure diagnoses, and hastened his own death too.

    So do what you can - involve the doctor, make the smoothies, offer the food and fluids, visit and love him for being your father. But if he chooses not to accept what you're trying to give, try not to think of it as his rejection of you - as Nikilet says above, you don't fully know what he's going through.

  • My heart goes out to you Melissa. Please do as knitter suggests and call in help from GP. If you collapse they will have to get the state to look after him full time so it's in their interests to help you to help him.

    Also, the BLF have counsellor advisors as well as medical ones. Please, please give them a call 03000030555.

    You are doing a great job, I know exactly how tough it is, when you are emotionally attached it's even harder. Bless you. I can only send you a huge supporting hug.


  • Hi Melissa,

    It is very difficult for you I fully understand. I was diagnosed Emphysema but since March last year also Stage 4 lung cancer.

    I often don't want to eat or drink and too feel like giving in.

    I'm positive you are doing an excellent job. Perhaps, like me the long nights and dark days are depressing him. Keep trying. My family sometimes shout back at me and it brings my fighting spirit back.

    Please don't give up on him, deep down in his heart I'm sure he appreciates all you do.

    Get in touch with all the Services you can, even if they say they can't help. Make a list and ring them all. Someone somewhere is just waiting to help.

    Love Suzyxxx

  • That's what I want him to-do! Shout back at me tell me he's not going to mop around anymore and he's going to make the most of what he has.

    Myself and my sister go there everyday, my nephew is 8 months old and is in to everything and my son is 6. All he does is huff and puff making us feel uncomfortable but I thought a distraction would be a benefit to him but doesn't seem so.

    I'm sorry to hear of your recent diagnoses my thoughts and prayers are with you and your familyx

  • Sometimes you need someone from the outside to tell it as it is. My mother told the hospital how much she can do at home just so she could go home. But even after we told them she cannot do the things she says she can they still sent her home! It took a visit from the OT to actually tell her "okay do the things you say you can do now in front of us!" Most of the problem was pride which we all fully understood but it was of no help to her failing health.

    I feel for you as I know how you are feeling but sometimes stating "The bloody obvious" is the only way.

    Be Well

  • HI Melissa

    Sorry that you are having a hard time with your dad. I too am on 1 litre of oxygen virtually 24/7 and use a Bi-Pap at night. I have severe COPD and am a co2 retainer hence the Bi-Pap. The machine applies positive airways pressure to the lungs to keep the airways open at night so your oxygen levels don't plummet while you sleep. I still mange to do stuff around the house and drive. However, I do have an appetite despite being thin. I can really sympathize with your father as It is difficult with this illness because you are struggling to do what most people take for granted; breathing. It can be very hard to come to terms with. Does he have a COPD Nurse who visits him? Perhaps you could contact the BLF they are usually pretty helpful.

    Look after yourself.


  • totaly agree with you what difference does it make even if he was to become addicted on diazapam. he is never going to be cured of this illness so he should have what makes him cope. i myself have servere copd i asked about valium has i get bad anxiety had even before i got this dreadful disease they said no and gave me something else i didnt want to take .i read the leaflet guess what it said they can become adictive and the side affects terrible so i havent touched them if i was this person i would change g.ps xx

  • Totally agree with Rusty4lever,Melissa. You are definitely not getting the help you need,and more urgently,neither is your father. I am in the UK and lucky to have COPD care and Gr8 consultant. She offered me Oramorph. I said why she said it helps ease S O B,only bout 5ml in a day. I also have Lorazapem,1 behind tongue if anxious. I have severe Empysema and have been on 18hr(I just stay on) 1and half litre at rest,3 mobile. I have been on O2 for 20monThs. I use the oramorph if and when. The lorazapem the same,usually mornings. They can be the worst,dreading how the day will go. I am very lucky with support Melissa. You have no one,except us of course,giving you support! You are wonderful but stop battling alone now. Demand Dad have the Meds that can help his mood aswell as lungs. My consultant also prescribed anti-morbidity tabs as well when I was low. I changed as they didn't suit,to Sertraline,anti anxiety/depressants. Gentle but effective. Your Dad has become Morbid and depressed. Once he gets meds for mood,things will change. You can not go it alone. Please shout for help Melissa,metaphorically. I wish you good luck and God Bless. Talli xxxx

  • Have you. Tryed to get enagey drinks from his doct keep on saying to him that you and every one around you needs him not just for now nomaly grand children will pull people who have given up if he have them I know it is hard as we had an uncle who was the same who just give up but when he was seeing the children most of the time he came out of it. Try it and tell them to try and get him to interact in something with them I know it sounds hard for children to see some one like that but it might by the only thing he will act on try it hope he gets a little better

  • Hi how awful for you and for him and I do feel for you both. I am sure he knows what's best for him but maybe he is in denial? Or he has given up? You sound like you are shattered and at your wits end and I don't blame you for one moment.

    I know it's very difficult but you need to back off a little Melissa - you will be no use to him if you crack up and it's not selfish to make sure you as a carer will be able to cope. Is there anyone else who looks after him too? Can you access any more help maybe via the doctors? When you feel like shouting at him take a deep breath and if necessary take time out to get your control back. Go into another room etc.

    I think the way forward for you is to gently encourage him (even though it's very frustrating I know). When my mum went very thin and refused to eat we got her on a build up drink from the doctors (Ensure). She liked this and we got her doctor to tell her it's medicine and she must have one every day and just sip it throughout the day. She did and it helped a lot.

    Good luck with it love. We are here for you and we will try and support you as much as possible.

    Oh and you dad knows you love him you know! Bev xx

  • Hello Melissa. It seems you are stuck between a rock and a hard place, and that is soul destroying.

    May I suggest that you talk to your fathers doctor and if he is unwilling to give your father the help he needs then you must change to a different doctor. Your father needs medication for his anxiety because while he is anxious and panicking nothing you say or do will get through to him, because he is convinced that life is no longer worth living, and he might as well give up, I know this because I had a severe anxiety and panic attack which last for weeks, but my doctor gave me Diazepam and 30mg Citalopram which, after about 4 weeks calmed things down so that I was able to listen to what I was being told. He really must get help and the proper medications.

    I can't imagine what you are going through my friend, loving your father and wanting to scream at him all at the same time must be dreadful, but you must not ignore your needs, you both need nelp and if your doctor shows no interest then get another doctor, one who will listen to you and give you the help you need

    One question Melissa, have you told the pulmonary nurse about the treatment, or lack of it that your father's doctor is giving you, she may be able to help in some way, the pulmonary nurses where I live are fantastic, and they are always my first port of call.

    I am not sure if any of this is of help Melissa, but my thoughts are with you and I hope that you are able to get things sorted out for both you and your father.

    Love and big hugs xx

  • Hi cybergran, I do so agree with you....I too suffered severe anxiety when my breathlessness was so bad....I seemed to be locked in a bubble of fear. I was prescribed Seroxat for a while.

  • Thank you all for each of your replys, it upsets me seeing him the way he is. I know it's just a vicious circle at the moment. There's someone calling to the house Monday from psyio perhaps they could speed an appointment with his nurses and sort his meds out before its too late.

    Even though he's not eating or drinking (he may have a complan) hes asking for 4 cans of cider. I said he needed to try and eat something first but he just begged me like a child for sweets. I gave inand he has 4 440ml cans of strongbow a night.

  • Dear Melissa87: I ever intended to lay some big guilt trip on you about your father, but I may not have worded things the best. I am sure you are doing all that you know to do and that this is stressful for you. I was just trying to give you a different perspective from someone who has COPD, quite badly. There are many times when I have to dig very deep to pull up a desire to go on. I lost my mother 4 days after she celebrated her 60th birthday. It was completely unexpected. I thought surely I would die from the pain of it. Then 1-1/2 years later I lost my brother at age 39, again out of the blue. But I didn't blame God. He is your rock and comfort to get through the tough parts of this life and your salvation for the life to come. Don't turn away from Him.

    If I have again worded this badly, please forgive my poor use of words and know that my heart is in the right place. I don't know you, but God knows you and your father and I ask His blessings on all of you as you cope with this situation.

  • Hi Nikilet. ..don't worry yourself to much over a missed place word or two...most of us have done that...I can see you didn't mean harm by what you said....

    I have from time to time deleted a response after reading again and not feeling comfortably with it....

    Hope you o.k.


  • Hello Melissa,I agree with all that has been said.Don,t beat yourself up you are doing as much as you can.Us oldies can be very stubborn.I have very severe emphysema and struggle to breathe.By what you have said you are not getting the support you should be from your GP.Talk to the practice manager.Making yourself sick will not benefit anybody,I wish you the very best of luck.Many of us here will be happy to offer As much support as we can.Take care of yourself.D. 🌹💐🌹

  • You are in a difficult and worrying position because he is your Dad and you just want the best for him. Does he have friends or relatives he can talk to? He must feel frustrated like you, and I really feel you need some of the pressure taking away for your own benefit. If he won't drink how about an ice lolly - it might cool him down a bit when he is feeling the heat. There are so many lovely people on here, and I hope what they say you will find helpful.

  • I know it sounds a silly thing to suggest when he is so breathless but do talk to the pulmonary nurse about getting a physiotherapist to visit and work up an exercise programme with your dad. Gentle exercise will increase his breathing capacity so that he will not be as breathless. x

  • Melissa I am sorry you are having such a rough time. You can only do what he will allow you to do. He is a grown man and although it appears he is not doing the right things, he is doing what he feels comfortable doing. It is miserable when you can't breath and you feel like no one understands. You are the closest person to him and he is going to take a lot of this out on you. I work in a nursing home and see the elderly come in and they are bound and determined to do what they want to do. It is a way of controlling what they have left. At this point he has lost so much of his independence and he is scared. I know you are too. It is a very sad situation to be in but if you two could just sit down and have a very frank conversion about what your limits are and what his goals are maybe you two could come to an understanding. As a daughter your job isn't to push him to but to help him do the things he can and wants to do. Just remember this could be you with your child and how it would feel to lose control of so much. He is not an infant he is an adult who is very sick. I know you want to keep him around for a long time but what does he want? A lot of COPD patents are too tired to push. You can best be of service to him and yourself by backing off and let him lead the choir.

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