Copd care and the caretaker.

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My father passed away from copd, now my mother is in stage 4 and I'm caring for her. I have been going through this for 2 years. She doesn't want to be left alone at all and doesn't want to do anything for herself. My father drove and even took care of HER until a week before he passed away. He never gave up for 1 second. He went to pulmonary rehab for 22 years. She won't even get up and go to the bathroom because it makes her short of breath to move around. She did quit smoking a year ago which was a blessing because she is on oxygen 24/7. She wants me to do everything for her and I have been trying to live her life for her for the past 2 years. I am unemployed now, my marriage is suffering along with every other relationship I have. My brother works during the day and is home at night, he loves with her. I have 2 brothers by the way, yet every single thing falls on me. I love my mother, but I am circling the drain trying to care for her. She has no will, power of attorney, etc... Won't hear of it. I'm in a terrible position because my brothers promised her she would never live in a nursing home.

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  • Posted

    I feel for you Lisa.  You are definitely in a difficult and sad situation.  If it`s your brothers that promised your Mom that she would never end up in a nursing home, I would be asking them to lend a hand with the care of your Mom.  If you keep going on the way you are you will end up sick and needing a rest.  Then what will happen to your Mom, I bet your brothers would re-think their position on a nursing home if you weren`t able to care for her during the day. 

    So she lives at one of your brother`s homes and you take care of her during the day while your bro is at work, is that the picture.  (my question mark is not co-operating with me!).  Is there any way, even for a day or two a week, that you could get someone in to care for her during the day.  

    My adoptive Dad totally shut down after my adoptive Mom died.  He refused to eat and he quit walking.  He was a big man 6`2`and big boned, not heavy, just big.  I could no longer take care of him and HAD to put him into a home, it nearly killed me to do that, but I had to.  It too, was affecting my family life and I had to make the extremely difficult decision to put him into a home.  He ended up in hospital and refused to eat, either by mouth or tube, it took a few months but he eventually passed away.  It was horrible to watch him fading away, physically and mentally. 

    Can you talk to your Mom and explain to her that if she doesn`t make a will, take care of power of attorney, etc. that the government will step in and it will be out of your hands and your brother`s hands when she passes.  Maybe put it to her along the lines of ``Would you want Dad`s money, that he worked hard for all of his life, to go to the government Mom` 

    Tough love might be needed in your situation.  Tell her she HAS to get up and walk to the bathroom because you insist on it and if she doesn`t, you are leaving, right now.  

    I wish you all the luck in the world and will be thinking of you in my prayers.  Take care Lisa. 

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  • Posted

    then they need to step up and help take care of her. if the promise is broken that is on their shoulders.

    Iasked my children to put me in a nursing home when the time came but they and my husband say absolutely no

    I may have to admit myself so they have no say. I will not be a burden,. I am so sorry that you are going through this it will be the memory of

    your mom when she is gone and that isn't fair. maybe mention to your mom that she needs to help take care of herself more and mention to her that their are adult daycares available maybe your brothers

    will help pay for that.

    talk to your brothers make a schedule of care so that you each share the responsibility of her care.

    prayers and hugs

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  • Posted

    I too care for my mothere who has stage 4 copd and pulminary fibrosis but she does try to do stuff and i just took a leave of absence because she cant be left alone. Im sorry you dont gave a will or poa. Its tough either way no one wants to help so sad that we,are left to do this but it us what it is. Take care of yourself and god bless you
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  • Posted

    Get in touch with social services to have your mother's needs assessed .They will help you by maybe getting carers I to help

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    • Posted

      Yes I was thinking exactly the same thing.

      Lisa you need to ask her doctor for help as she needs carers duing the day.   It should be available on the NHS but if not then can anyone afford to pay for it?   Does your mother get DLA/PIP. if not she needs to apply for it and that money will help to pay for carers.  x

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  • Posted

    I personally would have a discussion w my brothers to discuss a nursing home or they'd better start helping w her...n take turns...that's crazy it being all on u!!!! I went through a similar situation years ago but my sister and I was trying to care for my father n my mom didn't want her to help n that's crazy,It was the ha rest thing ever n have any kind of life,I also had a daughter n G son that needed me,My father became combative w Parkinson, Alzhiemers,n he hit me n my mom n didn't who we were for a moment! My mom needed me also she had a heart attack earlier so I had both of them n I needed my sister n she jus refused to have her to help out n I said ,One Day that's it's it! Either sis helps me or else! And again there was a long story behind that one,I also had a brother who couldn't help much! Anyway Get help or tell them or else? I personally would anyway....Jus my opinion! Give ur husband time or he will find time w someone else! Not that's the way it should b ,but that's the way it is! IT SHOULD B Sickness or in health but these days. ....The vowels don't mean nothing anymore! Have a forum...n speak with everyone Inc ur mom! It's hard! But COPD STAGE 4 COULD GO ON FOR YEARS ,DEPENDNG ON OUR LORD! WHEN HE IS READY?

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    • Posted

      U should also b able?????.To get help w hospice or CNA'S TO HELP N ASST W HER! TALK TO HER DR.

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  • Posted

    I think you have done your duty.  If your brothers made her this promise then they need to get up off their duffs and supply some respite help and get themselves over there to help her out of the bed cook, clean and do all those things that you have had to do.  If your Mother has not made a will, power of attorney or a DNR, you are really in a pickle.  I know you love her, but you did not cause this mess..  I would never put this on my sons or daughter n laws.  1.  I did this to myself  2.  If something happens to my husband I would put myself in a nursing home and that would be the end of that.  I think God has positioned you and now it is time that YOU LAY DOWN THE LAW TO YOUR BROTHERS.  NO ONE IS EXEMPT FROM TAKING CARE OF YOUR MOTHER.    The responsibility is not just one persons.  You need to call in an advocate and you need to get some legal advice and quickly.  I get the feeling your Mother is being even more needy than she has to be (I could be wrong)  but I am in stage 4 severe COPD and I don't ask anyone to cook, clean, or go the the restroom for me.  If I get tired, I rest.  But I refuse to put this burden on my family..  I pretty much live in a bubble due to the risk of pneumonia or other infections, but I do not expect the rest of my family to do this.  Take care of yourself and your husband.  Your brothers need to step up to the plate and do their duty.  Otherwise you have no choice but to take some extreme steps.  And believe me, if it's money they are waiting on...it's not worth your life and happiness for some inheritance that may or may not come to pass.  Kudo's to your Dad.   he did exactly as God commands.....for better or worse, richer or poorer in sickness and in health.  Now...God bless you and take care of yourself.  If you leave...she will have to get up and go to the bathroom.  Do you know what stage she is in?  I would set up a meeting with her doctor.  You cannot take this on and sacrifice your own marriage and life.  You made a commitment to your husband...  Don't let that die on the vine.  God bless.....Breathless

     

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    • Posted

      I have a question for breathless, ....What happens the stages 2-3? Do u start using Oxygen in Stage 3,? Ty for answering !
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    • Posted

      I agree with you 100% breathless with your advice to Lisa.  Easier said than done though.  Please let us know how things are going Lisa.  Hopefully you have taken some steps to rectify the extremely difficult situation you find yourself in.  Good luck to you.  You are in my prayers. 
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    • Posted

      I guess when they can't breath without it.  I am in stage 4 (end stage) and I do not use oxygen nor do I want to start.  I don't want to carry a tank around or even take up space in my home with tubing.  I know it sounds ridiculous but sometimes I think people start on it way way way too soon (kindof a crutch) and then once you get started on it you can't just put it down.  The only time I have used oxygen is when I am hospitalized for pneumonia.  Unfortunately that is my biggest complication Getting Pneumonia can take me out.  So I just have to be proactive.  Don't worry about it.  Just make up your mind what you want to do, how you want to live you life with this diagnosis and see where it takes you...Even with the added problems I have with COPD (Asthma, Allergies, Cold Weather, Humid Weather , Heat, Pollution, Crowds) which only complicates COPD I have never even been asked if I wanted Oxygen.  Which I hope to God I don't have to have it.  I wish you the best, but you know your body, do what is best for you.  Hope this helps....Take care....God Bless.

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  • Posted

    Hi Lisa,

    I can only advise if you are living in UK.

    Get Social Services involved.

    Phone the British Lung Foundation helpline and get their advice also.

    You cannot go on like this it is bad for your own health and if that suffers then so will your Mother.  You need help,  Involve as many people as possible.

    The community Matron (who will visit as required) your local Breathe Easy Group may be able to advise who this is. Access through your Mother's GP

    The OT Team (occupational therapy) also access through your GP

    Consider paying someone to come 3 days a week to give some relief.  Ask social services about this, and respite care.  (Money may need to come from your mother's pension fun or DSS depending on your circumstances.

    Having a chat with your local breathe easy group Chairman may be able to advice you on the help that is available contact via BLF website.

    Take extra good care of yourself.

    Best wishes V

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    • Posted

      How did u know u were in The End Stage? My bro n sis also have COPD BOTH ON OXYGEN ALONG W me w COPD,I'm at stage 2 no oxygen,So when do people normally start using Oxygen n I know ...No 2 people r the same!

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    • Posted

      When you present symptoms.  On annual checks, everything initially is checked, if oxygen levels are low using oxymeter, further checks will be carried out through arteriel blood gas.  Not every one will require oxygen and oxygen is not normally prescribed unless blood oxygen levels are dangerously consistently low.  The consultant (UK) can prescribed oxygen if required and not everyone will be prescribed the same literage.

       

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    • Posted

      I'm glad ur not on oxygen! I thought by the 3rd stage u get on oxygen, So that's good to know that not everyone needs oxygen w COPD!

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    • Posted

      charlene you will learn a lot by studying the lung foundation / association website of the country you are living in.  COPD, Pulmonary Rehabilitation, looking after your lungs in cold or hot weather are just a few of the title searches you may want try on the appropriate lung foundation / association website.

      Patient UK information pages can be viewed here:  http://patient.info/search.asp?searchterm=copd&searchcoll=All

       

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    • Posted

      I tried to speak w someone at THE LUNGS INSTIUTE HERE IN TEXAS, N THEY SAID THEY WOULD SEND ME PHAMPLETS ON THE LU G BUT THAT WAS 3 WEEKS AGO N NOTHING SO I DONT KNOW? I'M JUS GOOGLING! I APPRECIATE U SO MUCH FOR TRYING TO HELP ME! TY!

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    • Posted

      I have a pet peeve and it`s that people tend to think because one person is on a medication or inhaler or oxygen and it`s working for them, then it should work for you.  We are all individuals and totally different in our response to meds., inhalers and the need for oxygen.  Even if you read on a search that by Stage 3 you need oxygen or wherever you garnered the info, doesn`t mean it`s written in stone and is true for you.  Your Dr., and pharmacist are your go to people for questions about meds., etc. and you are the expert on you. 
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    • Posted

      Terri, I am as knew to this disease as a baby learning to crawl, so I completel understand what you are saying.  I for one am trying to do my homework on what is best for me.  (What's best for me is not what is best for the next person)...so, I hope and pray that I have not responded to anyone thinking that my meds were what they needed.  That is not what I have intended.  Have a very blessed day.  Breathless.

       

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    • Posted

      Don't recall your name being mentioned in regards to recommending meds.?  Yes, I too do my homework and try and figure out what is best for me, which most certainly, as you say, is not best for someone else with

      COPD.  It happens to be a pet peeve of mine Breathless, in a general sense, people sometimes if not going as far as recommending, strongly suggesting that because this med. or that inhaler works for them perhaps it might work for you.  (not literally meaning you, obviously, at least I hope its obvious).  Don't worry, you are being nothing but helpful and informative in your posts on this forum.  A lot of the time I can't respond or share my experiences with COPD because I don't have a clue as to what stage I am in, what my numbers are, etc.  Head in the sand?  Probably firmly planted and that works for me.  Not to say that I have not actively changed a lot of my lifestyle, ie. quit smoking, which was the BIG ONE, watching my diet more, etc...etc... If I knew all my numbers and the stage I was at with respect to COPD I would obsess over it and that would not be healthy.  

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