Difficulty communicating with loved ones about severity of health

Hi all

I have severe fears that I am going to die soon. I feel like life is a constant struggle. I find it hard to do the most basic things that others take for granted.

I gasp for air upon walking 100 yards outside. I have to double over frequently to regain my composure.

Sometimes I feel that my husband thinks I a being lazy or just not keeping up on purpose.

As for my family,I do not think I can burden them with the way I feel.

Dying is a real possibility and yet people seem to want to "gee me up" say I am being negative or just not see that it's real.

Just wanted to air that.

Thanks for listening

Marianne

18 Replies

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  • Hiya Gatsby

    A terrible place that you find yourself in.

    Please please do talk to your close family and friends - tell them of your fears and worries - they may or may not understand, but you will have at least shared with them how you are feeling.

    So many people, after the event, will say "If only she had told us" etc etc,. Give them the chance to share with you your fears and worries. Your husband may be in denial - possibly thinking that you are as you quote lazy, because he does not/cannot accept the truth of the situation - that you are seriously ill and that this is his way of coping.

    I am alone and have no close family and just a couple of really close friends from whom I hide the truth because I do not want to upset them / be a burden. Like you I feel that I am not long to live on this mortal coil - but who knows! I have had a couple of heart attacks over the last few years and recently came within minutes of dying from a saddle pulmonary embolism, after collapsing in the local high street - lucky to be here still.

    My advice - be true to yourself - make what arrangements you want/need too, in my case I have now made arrangements for the long term care of my dogs and knowing that I have done what I can for them, I am content to accept the future - whatever that may hold.

    Gx

  • Dear Marriane

    I so acknowledge and empathise with your feelings.

    I also agree totally with Lymdor's comments.

    I have put on this link for you which I hope will go some way to helping you.

    kevinmd.com/blog/2011/05/ch...

    With love from one of your friend's who totally 'gets it'.

    XXX

  • Hi Marianne,

    I am so sorry you feel unsupported by your husband and he probably feels helpless as to how he can help you. I do believe you have to have this disease to truly understand how frustrating and depressed it can make you feel. Firstly copd goes hand in hand with many other 'ailments' and depression is one of them so I do think you need to see your GP for a chat about how you are feeling. I also believe you can do a lot for yourself.You say you 'have a severe fear that you will die soon' but you could live for many years with the right medication and treatment,C.O.P.D. is not a death sentence but it is a warning to change 'your way of life and your way of 'thinking', you could live with this illness for twenty or thirty years or more, lots of people have and do! So Marianne, a visit to the Drs, perhaps oxygen to help with walking and exercise ( VERY IMPORTANT ) eat well, lots of fresh fruit/veg and protein/carbs . If there are 'puliminary rehab' classes near you then perhaps your doctor could get you attending.

    emphysema-copd.co.uk/ click on this website and read about John Kirtley,he was a lovely man and there is so much information on the site,perhaps your hubby will look at it with you.Wishing you all the best,let us know how you get on,Huff x

  • Hi Marianne,

    I agree with all the previous comments especially the last one , I am 57 years old and have had Bronchiectasis since i was 3 , i now have emphysema and asthma too but not sure when i got them , i think asthma when i was 21 no idea on the emphysema . I have been on oxygen for nearly 10 years , at first only at night , which i have never understood as when it was discussed i said i had trouble doing housework and walking !!!!???? . However , for the last 2 years i have been on oxygen during the day only and until a year ago on a CPAP at night which helped with sleeping , as i used to wake up at night thinking i had been dreaming i was being strangled and couldn't breath , it used to take me an hour or so to calm down enough to sleep again , if atall . This was swapped for a BIPAP last october and for me it is great , if only i had been prescribed this 10 years ago i am sure my health would have been better now . It is so important to get as much information as possible about different treatment and tips on diet , exercises etc and this site is suberb for that ( and support ) , there are some very knowledgeable people on here with a wide range of experiences .

    A lot of people find our condition difficult to understand , especially if they are very healthy , my husband had hardly ever been ill in his life and at 71 is still pretty fit , so it was hard for him to understand . He has recently had chest infections during the winter and has far more empathy now that he knows how i feel a good bit of the time , he still smokes though (not near me i hasten to add ) . I would be interested in hearing what your condition is and what meds you are on if you want to chat , i am here , you are not alone and it is not nessecarily a short road xxxxxx Dinny xxxxxxxxxxx

  • Hi Marianne,

    I'm a newbie, I live with my Mum who has COPD, in the last year we've changed a few things, Mum's health isn't great, but it's amazing how small changes can make a difference! Living with someone with lung disease can be tough, the changes we've made help me too! Find out how your husband feels and share your breathlessness struggles!

    Well done for finding a supportive website and expressing how you feel it's a good step!

  • hi maryanne, i emphasize competely with you. i was diagnosed 2 years ago with severe c.o.p.d and emphasema and immediatly thought the worst....( strange how it came about though) my 5 week old grandson had to go into hospital for emergency heart surgery (i stopped smoking immediatly through stress, 3 months later dr's found a lump in my lung that needed investigating ( severe c.o.p.d and emphasema) depression sunk in and thinking the worst, life wasnt to good emotionally for me. i had to learn about depression, panick attack's as well as my condition (which to be honest i wasnt really interested in at the time as i had it in my head that i had to start making arrangements for my family after i left) what a shake up wake up call i got 3 months later = my husband did all he could to be supportive through my condition but my 2 son's weren't ( in there world it's me me me....) well anyway shake up wake up call = my husband went to bed with a headache and didnt wake up = he died 4 days later with a brain anurysm (something that shook my world apart) - i now had not only my condition but a grandson who medical and emotional need's that came first then there was supporting my son and his partner through this as well as supporting them through the grief of my husband, my youngest son sunk into depression so bad that he ended up self harming... so all in all no time for me to think, grieve or anything (i had to stay sharp at all times for them) which helped me beat the depression, healthcare workers called at my home every few days making sure i was all right and getting the right support for my illness as well as aid's for my home. just under 2 years later thing's are starting to settle for me health and family wise so all in all great. Life is one Heck of a Roller Coster Ride... but we can get through it with help... blessing to you maryanne x p.s this is the most i have ever shared with anyone in my life..

  • Hi Marianne, I'm so sorry to read your posting, I'm in a similar boat, can I ask are you on Ambulatory (walking) Oxygen, have you even had a full assessment of your condition?

    May I suggest you take your husband into the doctors surgery with you, he will then be fully aware of your condition and your family hopefully more supportive.

    As for dying; that is the only outcome of everyone’s life sooner or later.

    COPD (I assume you have it) is a horrible disease involving depression among other problems, have you talked to your GP about this?

    I'm replying without prior reference to others comments, so lets see if we concur.

    Be kind to yourself and be as happy as you look on the photo with your pint of Guinness (stout is available from other suppliers LOL)

    Take care,

    Dave

  • Hi Marianne

    I have just read with sadness your post, i am a wife of someone who is suffering from severe copd and like you cannot do what most people take for granted , making a cup of tea is as much as he can do these days

    i think your family are in denial of your illness and are not coping them selfs which is so a shame as support at this time is needed

    on a positive note , we are all dying no matter what we have , we are born to die

    it is not easy and i am frightened off both mine and my husband dying

    what we should do is make the most of everyday we have on this earth no matter what small things we do

    please talk to your family you know how they feel let them know how you feel

    all the best

    maureen

  • I have seen some good posts on this one Marianne. Much the same problem as I felt I had at one time. Several years ago i could only walk 6 to 10 paces before I was left gasping. I knew I was dying, and that it was going to come soon. You are reading this so yes I was very wrong. But it did take a big change in my attitude and learning how to control this beast we call copd to get a little better. I do have just 25% lung function. I get out of breath doing the most mundane of things. Yesterday I was out on my little mobility scooter on a cycle path in the country and needed to 'pop behind a bush'. Even that made me breathless. But I can now though walk a bit more than 10 paces before I get out of breath. Unless I am going up a slope and then it is different. It took me a long time to 'come out' as I called it and admit to people I was severely disabled. Why had i left it so long. Why was I almost ashamed to admit I now had a disability? Of course I then had to talk, I mean sit down and talk, about my fears. I felt such a burden on my wife. I started to think she would be better off without me. to find someone else that was not disabled like me. Lucky for me she reaffirmed her love for me and said whatever she would be standing by me, and when and where needed care for me. I guess I am one of the lucky ones. I am not afraid of dying. We all get there in the end. But, I do not wish to beckon the reaper. If you have not been yet, get yourself urgently onto pulmonary rehabilition. It will give you a good understanding of your illness, show you ways to make your life better, enable to to become fitter. And if need be you will be reffered for oxygen assessment. it is easy to become depressed with lung illness. Yes things are harder, but we must fight it. Talk to your husband, open your heart to him, explain your fears. I wish you all the best and hope to hear some good cheer from you soon:-)

  • I have recently come to this site and albeit I dont have your problem most of those I love know I am dying and know it can strike fast like you my daily life is a struggle and some people dont understand but my plight is that people in authority dont seem to believe I am dying even when they get it in black and white I often wonder how they would feel if it was a member of there family my sympathies with you

  • Dear marianne, i understand how u feel my mum passed away in 2007 from copd, in 2008 i was diagnosed at the age of 39, people thought my mum was being lazy until she died, u could see the shock on peoples faces. She didnt get around to writing letters will etc as although she was ill it happend very quickly. I now have the same with my children and my eldest ones are in denial too i think its too much or them going through this twice! I am thinking of getting copd nurses to talk to my children and explain because sometimes its better coming from a third person especially one who is professional in this feild and they cant get angry and walk away or back chat!

    love and best wishes to u xx

  • I had a hard time deciding what to do to make sure my family was informed of my wishes, so one day I sat down and wrote it all down on paper. Insurance polocy numbers, bank accounts, passwords to my online accounts. email addresses and passwords, etc. and I gave a copy to my husband. That's how I dealt with putting my affairs in order. I am more concerned that they aren't left with having to sort it all out. So now they know what to do if something should happen. My husband also shared his wishes once he saw my list.

    I hope this helps. Get it out of the way and enjoy the life you have rather than worry about not being around. You should also make sure you are getting the right care because about 8 years ago I felt much like you do (unable to breathe, walk more than a few feet). I was placed on oxygen and medications and feel better now than I did then. Don't give up!!

  • Hello, My husband suffers with COPD and for a few years he was very frustrated and quite cross - a lot of the time! As a carer it was difficult to watch and even more difficult to understand. He completed a pulmonary rehab course which just helped me so much. He understands his illness, his meds and knows he can carry on just at a slower pace. Perhaps you could ask your doctor about that - it might just help you come to terms with the illness and it is not necessarily a death sentence!! Perhaps you could try talking to your husband - it is such a difficult subject but the BLF have some great booklets including one for carers. Good Luck and keep going!! The sun is shining here it makes everything seem more positive!! Take care. TAD xx

  • PS I meant the pulmonary rehab helped HIM !! (but it did help me too) xx

  • Hello Marianne, you say you can walk a 100 yards I walk ten feet and that's it I have to rest to get my breathing back this is while I am on oxygen. I have been unable to walk more than 50 yards for about 20 years and it has slowly gotten worse until I am now on oxygen 18 hours a day and I have to use a power wheelchair. We all have to die but I take each day as it comes each day I wake up its a blessing. I think you really need to see you doctor and have a lung function test and a spirometery test done to check the state of your lungs.

  • I had a lung function test last week (I have them every 3 months)

    My capacity is up but my lungs are not using oxygen well my TLCO was 74%

  • Hello Marrianne,

    The BLF have some fantastic counsellors on their Helpline: 03000 030 555 who are there to support your and your loved ones. You and your family might find it useful to talk through these important things that are on your mind.

    You could also get this 'Looking after someone with lung disease' leaflet from the BLF which might help you explain what it's like for you and how they can support you:

    blf.org.uk/Page/Looking-aft...

    All the best,

    From BLF Family, friends and carers project

  • hi Marrianne

    You are not alone most people on this site are going through the same problems as your self,

    There are plenty of trained people in the BLF who can help as i'm sure everone who has answered your email have said,

    You can also ask your own doctor to talk to a councilor and take family members with you,

    I found that having my wife at each meeting has helped us both to come to terms with my illness.

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