Mom, Lung Cancer and COPD

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My mother 70 has COPD, she was diagnosed years ago.  Last October 2016 she was also diagnosed with Lung Cancer, In December we found out it had spread to lymph nodes.  She was not eligible for any treatment.  The Oncologist estimated 6 Months.  In July she was in hospital and they estimated 2-4 days.  It is now November and she is still here.  She is in a Long Term Care home.  She is also a CO2 retainer.  She is now delusional, hallucinating, confused, lost her memory.  Her breathing has become worse, very wheezy, she is in pain all the time.  Eats very little.  Has been bedridden for 6 months.  Lost most of her eyesight.  What I am afraid of is how will I know when the end is close?  Its been such a rollercoaster, up, down, up again.  The nurses at the home are not helpful, not knowledgable.  She has told me a few times she will be gone by the next morning, and looks terrible, looks believable and then she is perked up the next day.  She is confused so she doesnt realize the stress this is.  Now her legs are darker and bruising, she is coughing more.  She has stressed she wants me there when she passes, I am afraid the nurses do not pay enough attention and would not know if the end is close.  She has been so bad for so long and suffered so much but it just goes on and on.  I have a family and a job, I cannot be with her all the time for months.  Confused, stressed and sad.

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  • Posted

    I'm very sorry.

    This is really difficult - no one can predict it.

    She may die peacefully in her sleep - I wouldn't set your heart on being with her when it happens.

    Try and make the most of the time you have left.

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    • Posted

      I know no one can predict it.  If she goes peacefully in her sleep that would be a good way to go.  If possible I would like to be with her.   In some cases there are indicators when things are really going downhill and Im hoping but not betting that the psws are aware enough to let me know.
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    • Posted

      Yes she is.  Last night she was convinced that we were in a garage.  She was seeing all the cars, and upset I couldnt see them.  So she became convinced "they" have brainwashed me so I still see the normal room.   She has had all the signs.  A Nurse Practioner said she had mottling, sunken eyes, white toes, all the signs back in July , then two days later she was much better.  It goes up and down.  The Nurse Practioner was very suprised that she made it past those two days...and she is still here.  I will give her that she is strong.

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  • Posted

    Hi Michelle,I am so sorry for you.What a worry for you.Do you have anyone who you can talk too? I am also worried sick as my Hubby who will be 70 soon has either got COPD or Lung cancer.Hes not lost any weight,But he's done damage to his ribs & it hurts to cough.Hes also severely sighted in both eyes & deaf.We have to go back next week for the results.His sister will be coming up & a carer will be taking him in.As I suffer from Anxiety & osteoarthritis of hips, hands & knees.My poorly Husband has also got osteoarthritis of hips & knees.& lower back.Where abouts are you? We are in the UK.Take good care of yourself regards Amanda

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    • Posted

      Hi Amanda, Sorry to hear about your hubby and yourself.   No not really anyone to talk to.  Thats why I tried posting here.  
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  • Posted

    So sorry for your Mum's situation Michelle, the only thing you can do is to be sure each nurse attendant to your Mum and the Manager of the nursing home, knows to contact you immediately if there are any signs of rapid deterioration.  I am sure they already have your contact details in emergency situations but it wouldn't hurt for you to remind them that you can be contacted any time day or night regarding your Mum.

    You may want to visit each night after work briefly or extended so you can see for yourself how your Mum is doing each day.

    When the time comes or if your feel you need extra support for yourself now don't hesitate to ask your doctor for a referral to a counsellor to help with the stress and emotional upset your are experiencing. (see link below)

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    • Posted

      Thank you.  I am not in the UK.  And taking as much time as possible with my mom, being back to work late at lunch, taking time off to be with her.  Taking time for me at this point does not seem to be an option.  Re the attendants, I just worry that they don't know the signs, don't pay much attention.  I received a call from her one morning, she said she was going, she was really upset and crying.  When I got there the psw told me she was in a good mood...so I said what? I just got a call from her crying, so upset she couldnt speak and the psw just replied oh ya well....       Right now her breathing seems much more labored, wheezy and noisy, she is much more tired.  But the nurses and psws are not telling me this, if I call in to check on her they say she is fine.   It has been quite a time with the home...30 pages of journal of complaints against them.  But it would not be good for her to move her now. 

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    • Posted

      Perhaps the people on copd canada forum can advise you more appropriately Michelle just put copd canada forum into google search engine.

       

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  • Posted

    Hi I am so sorry to read how ill your poor mum is.  I can only advise you from my own experience.  My mum was 90 and had been bedridden for months.  She was eating and drinking a bit though.  When she stopped eating and drinking entirely the care home staff warned us that she wouldn't last much longer.

    A nurse came and fitted a syringe driver with morphine to make her last hours/days peaceful and me and my sisters arranged for one of us to be there 24/7.  I had just taken over from a sister when her breathing changed (I was told this happened just before death) and she died a few minutes later.  It was peaceful and she just slipped away. 

    I don't know if this will help you at all but I do wish you all the best.  x

     

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  • Posted

    Hi Michelle

    You are a good and loving daughter. No matter what, remember that.

    Sometimes people get a period of lucidity shortly before death, sometimes a week or a few days before. My mom, who didn't have health issues except for malpractice during surgery, came out of a 3 day coma for about 8 hours, then passed back into the coma. The breathing changes in her case probably started a few hours before death, much worse in the last 20 minutes. My mom was 59 and quite healthy so the breathing change probably was much longer than Hypercat's mom and probably longer than your mom's will be.

    There is no guarantee of a period of lucidity, I am sorry to say. It sounds to me as if y'all might be Stateside & dealing with one of the majority of our pretty awful nursing homes. If so, I am very sorry. (I'm freaked a bit right now, about to have back surgery, may need a nursing home briefly and the 2 nearest are horrendous.) I don't know what a paw is but in any nursing home setting, they certainly know the signs of impending death. Perhaps it is time to butter them up with some lavish gift boxes for each shift, nuts, fruit, a little candy with & w/o sugar, with nice "thank you for all you do for my mom & me" cards. MUCH cheaper if you make them yourself, we did this for my aunt's nursing home bc my aunt was a pill. That and tears are the only things I can suggest as possible ways to get some cooperation now.

    You are going above and beyond the call, and it does sound like your own well-being is suffering a bit. At this point there isn't a whit of suffering that you can save your mom. Please set yourself a schedule for visits and try to stick with it. Those end of day quick visits suggested by Vee or Hypercat sound good, and come with the added bonuses of you having a reasonable lunch and not having to worry about being late.

    And yes, once they stop consuming food and water an end will come. Took a week for one friend last year, age 71, but took almost 3 weeks for a much more frail 90 year old a few months earlier. But a doc or an RN can predict pretty accurately how long it should take.

    I do hope for your sake that she goes gently in her sleep while you are there holding her hand.

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    • Posted

      Thank you for your message.  I am in Canada.  I think our Nursing homes, called long term care....seem pretty good, and would seem good, if you only visit once in a while or if you dont pay attention.  My mother had two falls within a week of each other, the second one landed her in the hospital black and blue from her eye to her leg.  So they incorporated two fall alarms.  I know they wont be 100% in preventing her from falling, but they will at least alert someone that she is trying to get up.  They are not on a lot of the time....I have to keep turning them on ....every day. Just an example.  I have called our ministry of health, I have called the Director numerous times.  Its like a whole other full time job, trying to make sure they are taking proper care of her.

      "You are going above and beyond the call, and it does sound like your own well-being is suffering a bit. At this point there isn't a whit of suffering that you can save your mom. Please set yourself a schedule for visits and try to stick with it. "  Thank you for this, but I do believe I can save her additional suffering.  They were not giving meds correctly  so I had to argue with the nurses, get the director and doctor involved.  They dont seem to realize when she is in additional pain for days on end, so I have to let the doc know so he can up her pain med....its tiring.  But I have to do the best I can for her. 

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  • Posted

    It's maddening. My dad was up and down for 2 months before he passed. I'm guessing your mom is getting morphine which adds to the delirium. I was with dad the day he died, and mom was with him also. I had to leave for a half an hour, and dad died while I was gone and I am greatful. My mom was traumatized. She said it was awful watching him go.

    That being said. Dad had the same ups and downs that day as he had been the last couple of months. It's not that the nurses aren't paying attention, they really just can't know. Sad would have good days back and forth.

    I'm sorry, it's hard. Though when your mom does pass, I figure that like me, you will feel relief and calm knowing she isn't suffering. The sadness didn't hit me until a few months after my dad passed.

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