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Junebug17

Mother dying from lung cancer/copd

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My Mom is at home, here on hospice.   My name is Aileen, and me and my son are basically taking care of her.  Hospice comes 2 times a week and my mom has gone from walking with her walker, then within a month she has declined rapidly.  She is now in bed, full-time.  In a matter of a week, she was able to get herself from the bed to the bathroom...A few days later, she was unable to do that, so she was able to get to the bed to the portable potty, next too her bed...After a week or less, she was unable to do that.  Now, she was coherent in that time, able to speak and drink her ensure and resource, but now she can't drink anything except water.  She was able to speak three days ago and the other day she woke up from her nap and began to babble.  She didn't get a biopsy, however, she has a 3 by 4 in mass on her left upper lobe and 3 smaller masses on her right and left lung...Plus COPD.....She has muscle twitches and she is breathing out of her mouth, not nose, which makes me suspicious of excess CO2 levels, that is causing the decline....W/o a biopsy its hard to tell.  It's in her lymph nodes and it could have spread to her brain... Lastly, I think it was a mini-stroke... I'm just speculating.  I don't think she has much time.  Hospice doesn't think they need to come 7 days a week because she's not truly at the end, however, if you could see her, you'd think she was.  Hospice is good, but I've had to demand things that I needed that day...For example a "Bed-pan"....They said they'd deliver it on there next run, whereas, I needed it that day...Things like that.  Finally, I had to get pissy and demand one.... If anyone has any advice, I'd sure appreciate it.  What bother's me is that I gave her some ensure in a syringe and she vomited it up.  She has had no food at all in 4 days total.  Water is even hard to administer now.  I'm hiring nurses to come and stay with her at night now because I am not getting any sleep.  If I'm no good for myself, I can't be good for anything (not true but that's how I feel).  I have the means to get help.  Okay, she coughing again and I'm going to give her another breathing treatment...Thanks...Aileen   Ps/ I wrote this fast, so I hope you can understand it.

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Aileen,

No need to apologize. You've really helped our community giving us insight into hospice care and end-state disease.

I've been with several who've passed under hospice care and your description of functional and cognitive losses matches the timing and sequence I've observed.  Without exception, there was a period where food was refused and it is likely related to morphine dosage. To ease her breathing, in addition to the albuterol treatment, you might ask if hospice can bring a humidifier.  Adding humidity to her room sometimes eases hampered breathing.

At this juncture, the symptoms you've observed are likely caused by advanced cancer metastasis coupled with COPD.  As far as what hospice thinks, I think their opinion is irrelevant. If you need them everyday, they should be there everyday.  I'd make that quite clear.  It is my experience that when the patient becomes bed-bound, hospice attends at least once everyday.

I do agree with your need for rest.  You've got a lot on your plate already and more to come so your strategy for getting rest is a good one.  I wish I could do more to help.

Stay the course.

Tom

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Aileen I’m so sorry to hear about your mom.  I helped my father through an in home hospice and it was a difficult time indeed.  I also found the  hospice service frustrating at times.  I felt like they should have been able to better tell us what was happening, why, what would happen next and when that was going to happen.  The truth is it’s different for everyone.  The thing that is important to remember about late phase hospice is the body stops needing to do the things it did for life in order to prepare itself for what is next.  My father did a lot of the things you are describing.  He slept all day/night without waking up, stopped eating/drinking, was not conscious, his breathing became very shallow and light and his body temperature got cooler.  Giving your mom breathing treatments and making sure the proper amount of painmedication is being adminster so she is comfortable may be all she needs right now. 

 I’m so sorry for what you, your son and your mother are going through.  Making sure you and your son are taking care of yourselves is important.  Rest when you can.  My thoughts and prayers are with you.  We are here for you.  

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37 minutes ago, Tom Galli said:

Aileen,

No need to apologize. You've really helped our community giving us insight into hospice care and end-state disease.

I've been with several who've passed under hospice care and your description of functional and cognitive losses matches the timing and sequence I've observed.  Without exception, there was a period where food was refused and it is likely related to morphine dosage. To ease her breathing, in addition to the albuterol treatment, you might ask if hospice can bring a humidifier.  Adding humidity to her room sometimes eases hampered breathing.

At this juncture, the symptoms you've observed are likely caused by advanced cancer metastasis coupled with COPD.  As far as what hospice thinks, I think their opinion is irrelevant. If you need them everyday, they should be there everyday.  I'd make that quite clear.  It is my experience that when the patient becomes bed-bound, hospice attends at least once everyday.

I do agree with your need for rest.  You've got a lot on your plate already and more to come so your strategy for getting rest is a good one.  I wish I could do more to help.

Stay the course.

Tom

Thank you so much!  OMG...I'm so glad I conveyed my thoughts here.  I need some advice and you absolutely gave them to me.....Yes!  A humidifier.  I have a brand new on at home and I'll bring it as soon as I possible can.  I'm meeting with the nurse coordinator this afternoon, so I have been extremely busy.  Perhaps, I can get my hubby to bring it to me...Yep, I gonna call him right now.  How long will she live, really?  My son and I are guessing any day now.   Were on pins and needles, not knowing the (when)… I lost my Father 2 and a half years ago to aspiration pneumonia and he went fast...3 days.... My sister passed suddenly, a year ago last month.  She was only 60 and got that bad pneumonia that was going around.  Her eyes told the story.  The dull, lifeless eyes...She was brain-dead, and I didn't even know it.  I see that in my mom's eyes.  That dullness look..UGH.  Its been so hard, but God is giving me the strength.  I have to go tend to my mom again!  Then I have to post a reply to the next awesome person who replied to my post....Thanks, Aileen

 

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Hi, Aileen,

Just wanted to send you an encouraging word.  This is the hard part--and maybe it will comfort you to know it's probably much harder on you than it is on her.  

Wishing you all comfort and her a peaceful passing.

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1 hour ago, Curt said:

Aileen I’m so sorry to hear about your mom.  I helped my father through an in home hospice and it was a difficult time indeed.  I also found the  hospice service frustrating at times.  I felt like they should have been able to better tell us what was happening, why, what would happen next and when that was going to happen.  The truth is it’s different for everyone.  The thing that is important to remember about late phase hospice is the body stops needing to do the things it did for life in order to prepare itself for what is next.  My father did a lot of the things you are describing.  He slept all day/night without waking up, stopped eating/drinking, was not conscious, his breathing became very shallow and light and his body temperature got cooler.  Giving your mom breathing treatments and making sure the proper amount of painmedication is being adminster so she is comfortable may be all she needs right now. 

 I’m so sorry for what you, your son and your mother are going through.  Making sure you and your son are taking care of yourselves is important.  Rest when you can.  My thoughts and prayers are with you.  We are here for you.  

 

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I would suggest you talk with your mother’s doctor about getting her approved for hospital hospice unless you just want to care for her at home which I am sure is one big burden for you.Nine months ago wife was in the same situation as your mother, I got her approved for hospital hospice which turned out to be a godsend and cost nothing as my wife had Medicare and supplental policy.  Moreover, she was put on drugs from the day of her entry and passed away without suffering.  The hospital room had couple extra beds for family and even proved free meals to her visitors.

i too am so sorry for you and your family.  I hope this may be helpful to you.

 

 

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5 hours ago, Junebug17 said:

 

Thank you  all so much for all your awesome advice... I'm so glad I found you.  I'm tired now.  xoxoxoxoxoxo

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I'm sorry to hear about your mom. My mom was in hospice at the end. She had metastatic breast cancer and had lost the ability to walk or even transfer independently to a wheelchair, due to neuropathy. She lived in a different state from me. She was hospitaized for a blood clot that was inoperable and it was clear that she had not long to live. She went to a hospice house that had  5 patients and round the clock nursing staff. They were wonderful-- they let me sleep on the couch so I could be close to my mom. Her last few days were like what you described your mom being like now. She stopped eating, then she stopped drinking. She gradually stopped talking and faded in and out of consciousness. She had IV pain meds, and also some med that helped dry up secretions so that her breathing was easier.  The nurses there helped me understand that what she was going through was a natural part of the dying process. She no longer had a wish or a need to eat or drink. Her passing was pain free and peaceful and I was at her side when she died. I hope your mom's passing will be as peaceful and pain free. I agree with Tom that you should request (and insist on) the hospice services that you need.

Bridget

 

 

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