COPD and mom

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Hi, my name is Jackie

I have knowledge of COPD as I have taken my mom in to live with me and she has severe COPD.   I would like to share my experience with my mom and her condition with you all and hope you may find encouragement and or information.  Also, I have read some of your discussions and think it may help me with mom and thank you in advance for this. 

Mom has lived with me now for 2 and a half years and she has severe COPD among other major illnesses like Cancer in her right lung.  Although her cancer has not grown in the time she has been with me, her COPD has worsened from unit 3 oxygen to 5.  The docs say it will probably be the COPD that kills her first even though this is her second time with lung cancer. Mom has been on Oxygen for 11 year now as it started when she took Congestive Heart Failure all those years ago.  We do not believe she should have been put on oxygen then but the docs at the time did not do extensive tests then and did not seem to think it was necessary I guess.  They were wrong.  Tests should always be done before giving someone medicine of a potentially long term nature as we learned later in years, actually, in  2013 for mom.  As it was,  mom was not even put on the correct Puffers or medicines for her condition and this could have actually made her condition worse.  The experiences I would like to tell you about right now is her memory loss, both short and long term.  With her memory losses she has changed.  This condition with mom has been getting worse with her oxygen rising as her COPD worsens.  Mom was a seriously dedicated smoker since she was about 17 years of age and actually started smoking at 14.   I have done a lot of reading to find out as much as possible and found this site.  I have been seeing that some of you have mentioned different types of Medication for your COPD and am now wondering if I have the right meds for mom.  Our doc just put her on new stuff called BREO and SeaBri which he only just replaced a few days ago and continues to take the Subutamol.  Mom was on Spiriva and Advair but the doc said the SeaBri and Breo was the newest med on the market and of course I am hoping he's not just selling for a company.  I am wondering What more you may know of this debilitating disease as I am watching my mother die slowly and it is scaring me.  As I have said her memory is bad and I cannot tell you how hard it is to help her.  Her mind plays nasty tricks on her and it is not easy living with her at all.  I have so much to say on this subject and hope to discuss further here.  Thank you

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  • Posted

    Hello Jackie, first I have to say this is just the best site to be on. I'm so sorry to hear about your mom and I can relate to you. My husband is now end stage COPD, he also has Bronchiectasis, and TB. He also now has the dreaded pseudonoma bacteria. It's such a horrible disease and to watch a loved one suffer in this way is heartbreaking. I care for my husband and I can only say that if ever I feel down or worn out then I just look at the life he had, puts it all into perspective for me. My thoughts are with you both. Xxxx
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    • Posted

      Thank you Susan, may I ask how you know he is at the end stage?  I am not aware of when that is. I have to say our doc is not all forth coming with information about it.  I only know that mom is up to unit 5 on her concentrator and that they thought she was dying when I brought her here but she did not which was what I was striving for.  The only thing that really gets me down is moms memory issues.  There are different stages to dementia and mom is at the stage where she accuses people of things they don't do.  I am very protective over her but she wears me down trying to appease her when her behavior changes.  I try very hard not to let it affect me but I do spend a lot of time finding things she thinks is lost and or stolen.  It is the mind frame she is in at this point.  Also, I absolutely have no life of my own.  I cannot leave her for even 5 min alone because she has almost burned my house down three times now.  She does things that are not sensible and that could harm her.  She has care providers when I am at work but when I come home I am it for the other 16 hours a day, 7 days a week.  It is very difficult to live with mom at least 2 to 3 weeks out of every month.  She has a history of behaviour problems and some mental issues such as she is very jealous of me having my grand children or even her own children or grand babies here to see her or me.  She lies a lot and she cannot stand me correcting her at all about soties and events.  She does not like when i I help her take her medicine correctly simply because she sees not sense in doing it the docs way.  She does not like me talking on the phone to others because she is always thinking I am talking about her.  I am not sure how to handle this stuff sometimes.  It is just weird.  I did not know she had a lot of these issues until I brought her here. It seems odd that I did not know her very well but that is because of my difficult childhood with them.   I am told that the COPD causes her memory issues and it is going to get worse.  Although some days get my nerves very bad sometime,  I am self motivating and do try very hard to make her happy and confortable. These really are the end of her days even though I cannot tell how long that may be.  

      Jackie

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  • Posted

    Hi Jackie ,my you have got a lot to tend with haven't you ,your mum is very lucky to have such a lovely caring daughter ,

    I'm not in the medical profession ,I'm a fellow suffer  of  copd ,an ex smoker ,I'm aged 69  and  was diagnosed in 1992, that was when I also stopped smoking ,the medication I have ( and been on from the start ) I take Venolin inhaler ,seratide inhaler and the last few years I've been on topiotropium,

    I suppose I'm lucky as I don't use oxygen ,

    in your mums case I don't think there will be many of us on here to give you advise ,we are all in the hands of doctors and consultants who we hope know what they are doing for us is the right thing ,

    but we ARE here for  you ,

    take care and God Bless .

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    • Posted

      Thank you Nanny.  I am also called Nanny by my grandchildren...I love to here them say it...I am sorry that others go through this type of condition it is not very nice to have breathing problems of any kind but, I figure while I am given the chance to learn about it all, I will do what I can.  I myself have conditions that sometimes get in the way of caring for mom as she usually does not remember anything about me 5 minutes past me telling her..But that is ok with me.  I have Bronchial Asthma.  I also have Sleep Apnea and that is also why I try to learn as much as possible about these type of conditions.  I have to say it is wonderful to see other being able to write about it in a forum like this.  One can learn so much I think.  I am on a Machine at night.  It helps me get the air I need into my lungs.  I am a shallow breather and an Insomniac to boot..hehehe.  The doc says I stop breathing for to long about 75 times a night.  Hence, the machine.  Thanks again for rellying.  I hope you get better.  Bless.. 
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    • Posted

      Hi  again , my grandaughter is my life my world my reason for breathing ,she is 12 and the most  beautiful  child in the world ( to me ) she's no brain box , but she's confident and has a great charm and a wonderful personality ,just like her mum ,she's a very popular girl at school and the teachers often refer to her as ,,,,,aw the lovely Lois ,,,,she is very caring and understands my capabilities or lack of , I go to the gym twice a week ,,,,yes I did say gym ,and I have built my self up to achieving over 3klm in 43 minutes on the treadmil I'm aiming to reach 5 Klm ,Ive been going since 2008 after a spell in ICU with SEPTASYMA  ,I was rushed in on 23rd December 2008 and I  was discharged on the 8 th January 2009 ,I missed Christmas ( and spoilt chritpstmas for family ) and not a good way to start the new year ,,,,that was when I came in contact with the COPD rehabilitation nurses and physio's ,who in my opinion are my life savers and now my first port of call when I need help ,it was them that I did the PR course with and they said I should try to follow up the course by going in the gym ( it's in the next room so they are close by if I need them ) I have had a number of set backs since then ,due to chest infections ,pneumonia ,and broken bones after 2 falls that needed surgary to fix ,but as soon as I can I'm back in the gym ,

      it would be so easy for me to put my feet up and watch daytime tv ,as my hubby looks after me so well ,,,,,but I need to keep going to the gym and get the oxygen into my lungs ,,,,,,I intend to be here a good few years yet God willing ,,,,and I want to spend as much time as I can with my Lois ,she's in Florida at the moment on holiday with her parents ,,,but she's face timed me every day and she says she's bought me some lovely bath bombs that smell of the ocean ,bless her ,she's so thoughtful and caring ,I have been truly blessed to have my hubby my daughter ,and  my  Lois ,and of course not forgetting my son in law ,,,who was the one many years ago who bought me a computer after I said ,,,," I don't want one ,,,I don't need one ,,,I don't know how to use one  ,,," you will be glad of it one day he said ,,,,how right he was  and after speaking to my Lois yesterday ,,,,,( she can't keep a secret ) they have bought me a mini I pad ,,,haha,

      well I've gone on a bit haven't I ,,,and none of it very helpful to you .but I hope my stop has lightened your day ,,,,just a little bit .

      God Bless you for taking such wonderful care of your mum ,big hugs ,x

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  • Posted

    Your mother is very lucky to have you for her daughter.  I can't comment on the medication she's on, as my COPD has stayed stable at 30% lung function loss for the last 3 years.   I haven't heard of the newer medications you mention, as I'm having good results with Spiriva and Symbicort, but of course I'm nowhere near as ill as your mother is.

    Is her memory loss due to dementia or low oxygen?   I do hope you have support with her care because it sounds like very hard work and you're entitled to a life too!

    Please remember to take care of yourself as well as of your mum!

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    • Posted

      Hi, Jude,  I have just taken mom off the new medications as she has broken out in a terrible rash on her face for the first time in her life, something is wrong and she is reacting.  Mom only has 20% oxgen capacity but gets 100% mcuh of the time at unit 5 on her concentrator.  And her memory is affected due to the low oxygen of her own capacity and her body works very hard to keep her lungs working.  We do not have memory issues in our family so it is easy to tell what the cause is Thank God.  But it reeps havoc on her day to day funcitons.  Mom has a very hard time when she gets up and around.  It take very little for her to lose her oxygen in her lungs when she tries to do little things like get up out of bed or put her cloths on etc.  She can not longer make her own bed or anything like walking more that a few feet when she loses her air and comes into stress.  Life is not easy for her at all at this point.  Her own depression is hard to deal with, she really just wants it to be over.  I can't seem to let her give up.  I am not convinced that is the way she really wants it because after two and a half years and she is still alive when she should have not been, I want her to have more time.  I thinkk sometimes I may be selfish but she did not have a good life so there is a personal reason I want her to live a little longer so she can enjoy things that I try to bring into her life.  Things she never had before.  I just hope I am doing the right thing. Thank you for replying ..Bless
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    • Posted

      Well all I can say is that if I get to the stage of wanting it all to be over and someone prevents me I will be very very very angry!  And if there is an afterlife I'll come back to haunt them for prolonging my agony.  

      Quality of life is much  more important than quantity.     

      WHAT DOES SHE WANT?  That's the priority always, not what you or the doctors or anyone else wants and that's the right thing to do..    I feel very strongly about this and personally I don't intend to hang around for the end stage of COPD, it's too horrible. 

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  • Posted

    Hi jackie03510,

    Do you live in the UK or the States? Bless your heart..I can hear your weariness in your words. I know it must be very hard on you. I know bc my husband is kind of my caretaker too...but not so much for my COPD, I have other issues as well.

    Anyway...I just want to say that I too have experienced a big difference in my memory and I'm sure it has to do with not enough oxygen at times...and then maybe too much other times. I was first diagnosed in September of 2014 and at that time was put on oxygen 24/7. But on September 3rd the day I was diagnosed I stopped smoking after 36 years and my COPD actually got a bit better after that and so now I only require oxygen when I exert and do not use it all the time. I know that oxygen can mess with your memory and so I never tried to go over 2 liters. I'm actually glad that you brought this up because I have an appointment coming up myself and I'm going to ask the doctor about it because it's been a concern of mine as well that I'm kind of scatterbrained at times which is totally not my nature and seem to forget things that I should have remembered. It certainly does mess with my dignity I guess but I try not to get depressed about it because I feel like what's gone is gone and I don't think I'll probably ever get back what I have forgotten. But I guess I would like to know for sure if it's both lack of oxygen and too much oxygen that has done it. I am also on Spiriva as well as Advair. I have moderate to severe COPD and for now these two medications seem to be managing me pretty good. The best thing I could have done was to stop smoking because that actually improved my numbers a little bit. Please keep us posted. I don't know if I said anything that helped but I did want to at least share with you my situation to see if you could relate at all. There's some really knowledgeable people on this site that are happy to help as well but your doctor is always the most qualified way to go and if you question that...DO NOT HESITATE to get a second opinion bc it's your right and they aren't perfect. You need to feel good about the Dr for sure. Prayers up..ladyjack51

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    • Posted

      Thank you Ladyjack,  I am in Canada.  It is such a releif to see these pages because I think it can help with the day to day struggles with what we are faced with here.  I sometime have to tell the doc what we need becasue sometimes it just seems like they only want to go so far.  Mom told them she would not take treatment for her Cancer but they seem to think that she should not need simple meds for her infections or anything else.  Although she did at first give them that impression but I think i have changed their minds a bit.  I can be forceful when I have to be.  I am not sure they like me for it but I am the one giving her the reasons to live and figure she should get most out of it.  I am a Caregiver by trade and believe I know when it is time to let go...I think...not sure ...but oh well...I won't have the choice will I, at the end. Jackie..Bless
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    • Posted

      You'll have the choice if you want to have it, Jackie, as we all should.

      My mum kept saying she was ready to go and why didn't god take her?  Until I pointed out that if she really wanted to go she wouldn't sitll be taking all those medications!

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  • Posted

    Hi Jackie03510,

    I am so sorry to hear about your mum.  I had a friend who passed away in her sixties from CoPD and I know how hard it is to watch when there is nothing you can do to help.  Medicine has moved on a lot since your mum was probably diagnosed, and hopefully today what happened to your mum, now  wouldn't happen, i.e. given the wrong medication (oxygen). I myself have mature onset asthma, and am treated with Salbutamol and symbicort inhalers twice a day.  I also have my own nebuliser which I only use if I need it, thankfully this is not too often at the moment.  While I can't give you any advice about your mum, I can offer my support to you especially when you are having such a bad time at the moment. Feel free to contact me on the site if you need to talk.

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  • Posted

    Just a note to say that when I was last in hospital (Brisbane Australia) which was last April, they gave me Breo. So I am sure it is not something they give out willy nilly. Regards to you
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    • Posted

      Is it better than Symbicort or something prescribed when that doesn't work so well?   Is it also a cortisone bc I'd prefer something that doesn't have the immune suppressing qualities of cortisone.
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    • Posted

      Sorry Jude, can't comment about Symbicort as I have never been on it. I am not a professional, just another COPD sufferer with Emphysema and Asthma. Have been on Spiriva, Ventolin and Seretide since 2005.

      Suggest checking on the internet for Breo Ellipta. There is a wealth of information on it. Could give you the net site but I don't think it is allowed on this forum.

      Tony

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    • Posted

      But do you know if it's cortisone or not?  I did check on the internet before I messaged you and it wasn't there
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    • Posted

      Hi Tony, will have to check that out with my doctor as I use ventolin and symbicort twice per day, Thanks. Patsy43
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    • Posted

      Thanks Tony, I am sure where it is a new product it will help a lot of people but as mom has had a reaction, I have to take her off for now and put back on her other meds.  I will consult the doc to see what will be done. I do believe in trying new things.   Bless
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    • Posted

      Hi again ,I was asked to try Montelukast last year and this year Slo-Phyllin 

      but both gave me terrible side effects ,so it was taken off both ,now I'm back on the sa rep me duplication I've been on since 1992 ,ventalin inhaler ,seratide inhaler and tiotropium ,

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    • Posted

      Hi  fellow COPDer I to have the same medication as you ,since 2008 ,,seems to work for me ,
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