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Quill

Shortness of breath (MIL) - Negative Update, but pertains to SIL. Updated at last post.

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On 1/28/2020 at 5:10 PM, Quill said:

Yeah he went when we went to UC. 

Wow, I’m surprised everyone thinks she needs to go to the ER. Didn’t expect that. 

I’m very comfortable with the SIL who has had her down south. Well, several of the siblings, actually. I talked to this SIL a lot this weekend about the UTI. 

Honestly I’d worry about pulmonary edema.

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On 1/28/2020 at 7:29 PM, unsinkable said:

So I talked to my medical person...

And his thought is she could be filling up with fluid, check for CHF, and that the UTI is coincidental to the shortness of breath.

I'm sorry, Quill. Lots of hugs and best wishes. 

 

On 1/28/2020 at 7:26 PM, Melanie in WI said:

Does she have congestive heart failure? I would be concerned it is getting worse. I would take her in.

Yup.  This is the way my thoughts are going on this.  I am praying for her, and hope it is nothing.  Big hugs!

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1 hour ago, school17777 said:

Anxiously checking this thread.  Hopefully everything is ok.

Everything is OK. I just have nothing more to post at the moment. We haven’t taken her anywhere. Im a little embarrassed to post anything more because everyone thinks she needs to be seen and we don’t. 🤷🏻‍♀️ I cannot say her breathing is perfectly fine; it’s not. But it just doesn’t look like an emergency. Even with questions people have had about anxiety - I don’t see any indication that she’s anxious. She has been in pain, yes, and takes pain meds. But she’s not wide-eyed or frantic or anything. She just sits on the couch, endlessly tuned to the impeachment trials and naps a good portion of the day. 

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47 minutes ago, Quill said:

Everything is OK. I just have nothing more to post at the moment. We haven’t taken her anywhere. Im a little embarrassed to post anything more because everyone thinks she needs to be seen and we don’t. 🤷🏻‍♀️ I cannot say her breathing is perfectly fine; it’s not. But it just doesn’t look like an emergency. Even with questions people have had about anxiety - I don’t see any indication that she’s anxious. She has been in pain, yes, and takes pain meds. But she’s not wide-eyed or frantic or anything. She just sits on the couch, endlessly tuned to the impeachment trials and naps a good portion of the day. 

Okay.  But if she feels like her chest is tight or heavy with the out of breath, or like someone is sitting on her, please do take her in.  That’s a red alert symptom.

I wish you all the best in making care decisions, it’s not straightforward and it isn’t easy.

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1 hour ago, Quill said:

Everything is OK. I just have nothing more to post at the moment. We haven’t taken her anywhere. Im a little embarrassed to post anything more because everyone thinks she needs to be seen and we don’t. 🤷🏻‍♀️ I cannot say her breathing is perfectly fine; it’s not. But it just doesn’t look like an emergency. Even with questions people have had about anxiety - I don’t see any indication that she’s anxious. She has been in pain, yes, and takes pain meds. But she’s not wide-eyed or frantic or anything. She just sits on the couch, endlessly tuned to the impeachment trials and naps a good portion of the day. 

What is her pulse? If it is elevated while resting, that is a sign she needs to go in. 

My ex (now late) DH had a heart condition, but it wasn't a big deal. Until one day he was coughing a bit, and short of breath. He stopped by my work for something or other, and mentioned it. He planned to go home and take a nap.  I didn't like how he was breathing, and forced him to come in the back and we checked pulse ox (normal or at least not concerning) and heart rate. Heartrate was over 100 while sitting still resting. Sent him to the ER with dire threats if he didn't go, even though he said he just wanted a nap. 

They got him there and he was in serious congestive heart failure. They said if he'd gone home and taken a nap there was a good chance he would have died in his sleep. And he was up and about, driving himself, etc. Just short of breath with a bit of a cough. 

It may be she just needs an increase in her diuretic, it may be that she was taking some ibuprofen or aspirin and is having a go bleed that is causing anemia, etc etc. 

Instead of the ER, can you just take her in to a regular doctor?

Edited by Ktgrok
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It is so hard to make these decisions. And we are just "people on the internet." ❤ 

You are asleep now--I am 7 hours ahead and it is only 1am where you are. I am going to say, though, that as little as my opinion matters, what is the harm of taking her in. Why do you think labored breathing is not an issue? The benefit could be peace of mind for you, later, and more comfort for her, or it could be really life-saving. 

 

Edited by Chris in VA
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5 hours ago, Chris in VA said:

It is so hard to make these decisions. And we are just "people on the internet." ❤ 

You are asleep now--I am 7 hours ahead and it is only 1am where you are. I am going to say, though, that as little as my opinion matters, what is the harm of taking her in. Why do you think labored breathing is not an issue? The benefit could be peace of mind for you, later, and more comfort for her, or it could be really life-saving. 

 

Part of my reluctance is just this: it takes time. It’s a day or more of lost income for my dh. Nobody pays him if he’s not at work. I also don’t want to put her around germs any more than necessary. While we were at Urgent Care, three people came in sick as can be and only one - an adult - put on a facemask. 

The last part of why not is because three other family members have seen her now and nobody is like, “OMG! Take her to the hospital right now!” She’s been in poor condition for more than a year. And - I don’t mean to sound calloused - I think all the family members accept that she doesn’t have years and years of life ahead of her. I have not seen her Advanced Directives but I *think* at this point nobody is going to extraordinary lengths for her to live longer. For instance, she has no food restrictions. When she had the blockage, diet was discussed but it was decided that at this point, there was no purpose in, say, cutting out eggs, sugar and butter. She’s eaten like a farm girl her whole life. So the decision wasn’t, “We must clean up her diet so she’ll live to be a hundred!” It was, “90 years is a good long life. Let her eat the bacon.” 

I mainly just hope she doesn’t die on my watch. And yes I feel like a terrible human being just saying that. I keep erasing it and retyping it. But I guess I’ll let it stand. 

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20 minutes ago, Quill said:

Part of my reluctance is just this: it takes time. It’s a day or more of lost income for my dh. Nobody pays him if he’s not at work. I also don’t want to put her around germs any more than necessary. While we were at Urgent Care, three people came in sick as can be and only one - an adult - put on a facemask. 

The last part of why not is because three other family members have seen her now and nobody is like, “OMG! Take her to the hospital right now!” She’s been in poor condition for more than a year. And - I don’t mean to sound calloused - I think all the family members accept that she doesn’t have years and years of life ahead of her. I have not seen her Advanced Directives but I *think* at this point nobody is going to extraordinary lengths for her to live longer. For instance, she has no food restrictions. When she had the blockage, diet was discussed but it was decided that at this point, there was no purpose in, say, cutting out eggs, sugar and butter. She’s eaten like a farm girl her whole life. So the decision wasn’t, “We must clean up her diet so she’ll live to be a hundred!” It was, “90 years is a good long life. Let her eat the bacon.” 

I mainly just hope she doesn’t die on my watch. And yes I feel like a terrible human being just saying that. I keep erasing it and retyping it. But I guess I’ll let it stand. 

This is such a healthy way for the family to navigate her aging. Too often, families want to force the new diet and do all the things and the poor aged person is put through hell. I love that she gets to eat her bacon. And your feelings are completely understandable. 

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Quill, I’m so impressed that you guys are all on the same page as far as how to care for mil. Good for you! It helps to know you have each other’s backs and you all decided together.  Having said that, I understand your comment about hoping she doesn’t die on your watch. I felt that way every time I was left alone with mil. 
 

My mil was in horrible pain due to to lung cancer. And was suffering from constipation so badly.  We wanted her to have pain meds, dh’s sister did not. FIL felt pulled between his son and daughter and couldn’t bear to accept mil was suffering. Two years later Dh and I ate still haunted because the family couldn’t agree and mil suffered.  (MIL had dementia and couldn;t advocate for herself). 
 

 

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I think you have your head on straight about it and I'm glad everyone is on the same page.  Sending hugs and hope she can be comfortable in the coming days!  ❤️  

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2 hours ago, Quill said:

Part of my reluctance is just this: it takes time. It’s a day or more of lost income for my dh. Nobody pays him if he’s not at work. I also don’t want to put her around germs any more than necessary. While we were at Urgent Care, three people came in sick as can be and only one - an adult - put on a facemask. 

The last part of why not is because three other family members have seen her now and nobody is like, “OMG! Take her to the hospital right now!” She’s been in poor condition for more than a year. And - I don’t mean to sound calloused - I think all the family members accept that she doesn’t have years and years of life ahead of her. I have not seen her Advanced Directives but I *think* at this point nobody is going to extraordinary lengths for her to live longer. For instance, she has no food restrictions. When she had the blockage, diet was discussed but it was decided that at this point, there was no purpose in, say, cutting out eggs, sugar and butter. She’s eaten like a farm girl her whole life. So the decision wasn’t, “We must clean up her diet so she’ll live to be a hundred!” It was, “90 years is a good long life. Let her eat the bacon.” 

I mainly just hope she doesn’t die on my watch. And yes I feel like a terrible human being just saying that. I keep erasing it and retyping it. But I guess I’ll let it stand. 

I don't want to be all doom and gloom...But there is a chance it is another blockage that is causing the shortness of breath.

And IMO, some ILs can close ranks and turn on a dime. Especially sisters. I'd hate to have them point fingers at you, Quill. 

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13 minutes ago, unsinkable said:

I don't want to be all doom and gloom...But there is a chance it is another blockage that is causing the shortness of breath.

And IMO, some ILs can close ranks and turn on a dime. Especially sisters. I'd hate to have them point fingers at you, Quill. 

 

I agree. 

Also, I would take her to a cardiologist, not an urgent care. That would help avoid things like flu germs. 

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2 hours ago, Quill said:

Part of my reluctance is just this: it takes time. It’s a day or more of lost income for my dh. Nobody pays him if he’s not at work. I also don’t want to put her around germs any more than necessary. While we were at Urgent Care, three people came in sick as can be and only one - an adult - put on a facemask. 

The last part of why not is because three other family members have seen her now and nobody is like, “OMG! Take her to the hospital right now!” She’s been in poor condition for more than a year. And - I don’t mean to sound calloused - I think all the family members accept that she doesn’t have years and years of life ahead of her. I have not seen her Advanced Directives but I *think* at this point nobody is going to extraordinary lengths for her to live longer. For instance, she has no food restrictions. When she had the blockage, diet was discussed but it was decided that at this point, there was no purpose in, say, cutting out eggs, sugar and butter. She’s eaten like a farm girl her whole life. So the decision wasn’t, “We must clean up her diet so she’ll live to be a hundred!” It was, “90 years is a good long life. Let her eat the bacon.” 

I mainly just hope she doesn’t die on my watch. And yes I feel like a terrible human being just saying that. I keep erasing it and retyping it. But I guess I’ll let it stand. 

Hugs @Quill!  Your first post sounded pretty bad (especially if your DS thought she was dying).  I totally get the hoping she doesn't die on your watch!!!  I am praying she is ok until she goes back to your SIL!  My dad isn't in that bad a shape, medically wise, except his balance is getting worse and he has fallen 5 times in the past year.  I am so stressed with the worrying and trying to keep him safe and alive.  I wish someone would take the burden and worry from me for a bit.  So...I really do get it!

And...I would be masking her and and anyone that is with her if you go to a GP, UC or ER to help keep her safe.  I don't ever rely on people at these places to do the right/smart thing!

 

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I know people keep talking about not subjecting your MIL to a lot of medical procedures and if that's what she wants, I agree with that, but this is about her comfort. If she is having trouble breathing, that is an awful feeling and it must be terribly frightening for her, even if she isn't complaining to you about it. If nothing else, maybe some oxygen would make her more comfortable. I'm sure a good doctor (not urgent care) would be able to help figure out what's going on, and then the family can make decisions based on that information.

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22 minutes ago, Catwoman said:

 

I agree. 

Also, I would take her to a cardiologist, not an urgent care. That would help avoid things like flu germs. 

I'd tend to agree with the cardiac doc. Except this seems emregent, if I am reading the chronology right.

It might be worth a call the the doc who dealt with the blockage.

I wish you lived here, Quill. My medical person would get you straight into a disinfected room, so you all could bypass the waiting room and triage if you decided to go in.

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I do wish doctors did housecalls in cases like this. So much easier than dragging a frail old person out in cold weather to a place full of germs.

 

oooo. Check this out!

https://heal.com/

Edited by fairfarmhand
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Continued prayers. And I hope you don't feel judged in the slightest by my concern. My opinion is just that, and I really, really commend you for being there for her. ❤❤❤❤

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3 hours ago, Quill said:

She’s been in poor condition for more than a year. And - I don’t mean to sound calloused - I think all the family members accept that she doesn’t have years and years of life ahead of her. I have not seen her Advanced Directives but I *think* at this point nobody is going to extraordinary lengths for her to live longer.

 

It sounds like you have a good understanding of the spirit of her Advance Directive, even if you don't know the exact contents.  And that you are what is right for her. 

Edited by wathe
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I agree with at least Calling her doctor and talking with family.  I am totally behind just care and comfort, letting her eat what she wants, etc.  If it is extra fluid, etc a med change just might make things a lot more comfortable for her 

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4 hours ago, Quill said:

Part of my reluctance is just this: it takes time. It’s a day or more of lost income for my dh. Nobody pays him if he’s not at work. I also don’t want to put her around germs any more than necessary. While we were at Urgent Care, three people came in sick as can be and only one - an adult - put on a facemask. 

The last part of why not is because three other family members have seen her now and nobody is like, “OMG! Take her to the hospital right now!” She’s been in poor condition for more than a year. And - I don’t mean to sound calloused - I think all the family members accept that she doesn’t have years and years of life ahead of her. I have not seen her Advanced Directives but I *think* at this point nobody is going to extraordinary lengths for her to live longer. For instance, she has no food restrictions. When she had the blockage, diet was discussed but it was decided that at this point, there was no purpose in, say, cutting out eggs, sugar and butter. She’s eaten like a farm girl her whole life. So the decision wasn’t, “We must clean up her diet so she’ll live to be a hundred!” It was, “90 years is a good long life. Let her eat the bacon.” 

I mainly just hope she doesn’t die on my watch. And yes I feel like a terrible human being just saying that. I keep erasing it and retyping it. But I guess I’ll let it stand. 

Absolutely agree with this/  I am in my later 50's and do lots of things to improve my health with all of it's chronic and now long acute illnesses.  But do not talk to me on going on some kind of extreme diet--- no, absolutely no.  With so much pain and medical issues in my life, i am very glad I can still enjoy a tasty meal.  Let her enjoy tasty meals too.

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2 hours ago, unsinkable said:

I don't want to be all doom and gloom...But there is a chance it is another blockage that is causing the shortness of breath.

And IMO, some ILs can close ranks and turn on a dime. Especially sisters. I'd hate to have them point fingers at you, Quill. 

You’re not wrong and I have experienced that before. But honestly, if the worst happened and she died on my couch watching the impeachment trials and somebody turns on me with accusations, honestly? I just feel like, bring it.

I talked to the “main” SIL, the one who has been her nurse for a year. I talked to her extensively about all the things: the UTI, swelling ankles, the breathing, everything. And one of the brothers was also here and on speaker phone, so we were all talking about all of the things together. And I sent SIL a video I surreptitiously took of her breathing yesterday. Neither of them are saying she must go to the ER and my SIL said there isn’t anything they can do and that this is just the fact of her life right now. “I listen to her breathe every night and I know one day, it will stop.” So. All that to say if the worst happens and some pinhead in the family wants to blame me for not doing the right thing or enough things or whatever, I just feel like - well, be a pinhead, then. Almost all of her kids have seen her current state now and nobody is freaking out. For my own mental comfort, of course I very much hope she does not die on my watch. But if she does, I do not feel at fault. Old, sick people die sooner or later, irrespective of who is watching them. 

Sorry that was such a long paragraph. Thanks for your caring. I do appreciate it.

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10 minutes ago, Quill said:

You’re not wrong and I have experienced that before. But honestly, if the worst happened and she died on my couch watching the impeachment trials and somebody turns on me with accusations, honestly? I just feel like, bring it.

I talked to the “main” SIL, the one who has been her nurse for a year. I talked to her extensively about all the things: the UTI, swelling ankles, the breathing, everything. And one of the brothers was also here and on speaker phone, so we were all talking about all of the things together. And I sent SIL a video I surreptitiously took of her breathing yesterday. Neither of them are saying she must go to the ER and my SIL said there isn’t anything they can do and that this is just the fact of her life right now. “I listen to her breathe every night and I know one day, it will stop.” So. All that to say if the worst happens and some pinhead in the family wants to blame me for not doing the right thing or enough things or whatever, I just feel like - well, be a pinhead, then. Almost all of her kids have seen her current state now and nobody is freaking out. For my own mental comfort, of course I very much hope she does not die on my watch. But if she does, I do not feel at fault. Old, sick people die sooner or later, irrespective of who is watching them. 

Sorry that was such a long paragraph. Thanks for your caring. I do appreciate it.

It sounds like the family all all on the same page  (which is a huge thing!) and that this type of finger-pointing outcome sounds unlikely. 

Her Directive is your rock solid defense if any family opinions go off-side.  Is a copy available to you?  If you are the one making decisions on her behalf at this time - and it sounds like you are making many practical daily life decisions on her behalf right now (ie she's on your watch) - you might want to at least thumb through it.

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33 minutes ago, wathe said:

It sounds like the family all all on the same page  (which is a huge thing!) and that this type of finger-pointing outcome sounds unlikely. 

Her Directive is your rock solid defense if any family opinions go off-side.  Is a copy available to you?  If you are the one making decisions on her behalf at this time - and it sounds like you are making many practical daily life decisions on her behalf right now (ie she's on your watch) - you might want to at least thumb through it.

 

I would agree that having a copy of this paperwork available - not just for you, but whatever member of the family is currently hosting her - is important. Especially with a DNR, if you were to have to bring her in or call for emergency services, they need to see a copy of this. It’s important because it will actually help *prevent* them from doing any heroic life-preserving measures, things they automatically do in the absence of a document.  

It’s easy to keep an electronic pdf copy on a smart phone. Have it scanned (or even photographed) and emailed to you/dh. 

I applaud your advocacy for her to have a comfortable end, as long as she does not appear to be in mental or emotional distress. I believe having a quickly accessible copy of that advance directive would be a great tool to help you carry that out. 

Don’t fret about the siblings. This has been a long road for each of you, and all of you can see the end is near. It will be fine. You are right to not let that trouble you. 

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You could call local gerontologist offices and ask if anyone would do a house call.  They routinely visit nursing and assisted living homes.  Even an office visit there would mean less flu and more routine care.

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With the support of everyone else who has seen her and you've talked to, I would just keep doing what you are doing unless she seems in distress. Which is what it sounds like you are doing. If she started getting anxious or seemed uncomfortable, I'm sure you would look at other options, but under the circumstances, I'd just try to keep her as comfortable as possible, and her surroundings as peaceful as possible (well, except for the TV shows she is wanting to watch, lol).

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As long as she’s not panicking and is feeling ok, I think you’re doing the right thing.  I *think* you may be on the same page as I am wrt prolonging (I won’t say any more) and as long as she’s comfortable, that’s the most important thing.   When I called 911 for my grandmother (technically Dh’s grandmother), she wanted me to.  If she’d said no, I may have just made sure she was comfortable and stayed with her.  (Caveat: I was making medical decisions with her at that point)

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I might be 100% off base here, but I'm just sharing a personal perspective on comfort and breathing, and Quill, absolutely disregard if you like (and it's not like you have much of a say anyway).

The poorer my breathing gets and the worse I feel (chronic lung disease), the less I complain. I lie quietly on the sofa, can't eat, don't want to drink, and feel resigned to dying because it costs less breathing energy than any other option, including that of exhibting anxiety, or saying 'I feel terrible, help'. But I feel anxious and I feel terrible and I am very grateful when someone who is not me takes me to hospital for help.

Something about SIL saying 'this is how she breathes, can't do anything about it' doesn't ring all that true to me (but I could be wrong but I don't think I am about the second part) and I would err on the side of going in, not because I'd think MIL had a long time to go, but because I'd want her remaining time to be as comfortable as possible, and I would not to rely on her self-report, self-advocacy or voluntary behaviours to indicate levels of distress.

 

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6 hours ago, Annie G said:

Quill, I’m so impressed that you guys are all on the same page as far as how to care for mil. Good for you! It helps to know you have each other’s backs and you all decided together.  Having said that, I understand your comment about hoping she doesn’t die on your watch. I felt that way every time I was left alone with mil. 
 

My mil was in horrible pain due to to lung cancer. And was suffering from constipation so badly.  We wanted her to have pain meds, dh’s sister did not. FIL felt pulled between his son and daughter and couldn’t bear to accept mil was suffering. Two years later Dh and I ate still haunted because the family couldn’t agree and mil suffered.  (MIL had dementia and couldn;t advocate for herself). 
 

 

 

This is so sad.

The pendulum does need to swing away from 'life at all costs!' but pain meds (and other comfort treatments) are not part of that cost. 

How traumatic for you all that your MIL was denied pain medication.

That's terrible.

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42 minutes ago, StellaM said:

 

This is so sad.

The pendulum does need to swing away from 'life at all costs!' but pain meds (and other comfort treatments) are not part of that cost. 

How traumatic for you all that your MIL was denied pain medication.

That's terrible.

Thanks for understanding. It was pretty awful all around. And now fil has passed away and dh has almost no relationship w his sister. Some things are just that hard to forgive. She thinks we were wrong for wanting mil to have pain meds and we think she was wrong for not giving them until the last three days, and then only once a day.  You’re right- people deserve that middle ground of being kept comfortable but not extending life beyond what is reasonable. 
 

Quill, still sending you support, and praying for your mil. 

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57 minutes ago, StellaM said:

I might be 100% off base here, but I'm just sharing a personal perspective on comfort and breathing, and Quill, absolutely disregard if you like (and it's not like you have much of a say anyway).

The poorer my breathing gets and the worse I feel (chronic lung disease), the less I complain. I lie quietly on the sofa, can't eat, don't want to drink, and feel resigned to dying because it costs less breathing energy than any other option, including that of exhibting anxiety, or saying 'I feel terrible, help'. But I feel anxious and I feel terrible and I am very grateful when someone who is not me takes me to hospital for help.

Something about SIL saying 'this is how she breathes, can't do anything about it' doesn't ring all that true to me (but I could be wrong but I don't think I am about the second part) and I would err on the side of going in, not because I'd think MIL had a long time to go, but because I'd want her remaining time to be as comfortable as possible, and I would not to rely on her self-report, self-advocacy or voluntary behaviours to indicate levels of distress.

 

I would say the main difference, though, is that you’re 49 or whatever age you are and she’s 93. I’m assuming you have reason to hope you’ll be around for several more decades, but I think that becomes less true for MIL every time another friend, sibling or cousin of hers dies. Her other behavior is so average it’s boring. She eats. She drinks (although she has to be nagged constantly to drink water). She gets dressed and brushes her teeth and hair. She reads Sue Grafton novels, though I think she promptly forgets the storyline. And then she watches TV alll day, lol. 

For your last paragraph, I’m sure you realize I’m not going above the heads of her actual children. If her actual children do not want or believe she needs to be seen, it’s not my place to go beyond that. 

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3 hours ago, StellaM said:

I might be 100% off base here, but I'm just sharing a personal perspective on comfort and breathing, and Quill, absolutely disregard if you like (and it's not like you have much of a say anyway).

The poorer my breathing gets and the worse I feel (chronic lung disease), the less I complain. I lie quietly on the sofa, can't eat, don't want to drink, and feel resigned to dying because it costs less breathing energy than any other option, including that of exhibting anxiety, or saying 'I feel terrible, help'. But I feel anxious and I feel terrible and I am very grateful when someone who is not me takes me to hospital for help.

Something about SIL saying 'this is how she breathes, can't do anything about it' doesn't ring all that true to me (but I could be wrong but I don't think I am about the second part) and I would err on the side of going in, not because I'd think MIL had a long time to go, but because I'd want her remaining time to be as comfortable as possible, and I would not to rely on her self-report, self-advocacy or voluntary behaviours to indicate levels of distress.

 

I think this is true - in my experience with asthma anyway, as well as anemia. 

I would not take her in an effort to extend her life, but I would take her in to possibly make her end time more comfortable. It is not comfortable to be out of breath. It really is just a primitive thing. 

And it really may be she just needs to increase her water pill a bit, or have some oxygen at home for when she feels she needs it. Not forced on her, just for when she wants it. 

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1 hour ago, Ktgrok said:

I think this is true - in my experience with asthma anyway, as well as anemia. 

I would not take her in an effort to extend her life, but I would take her in to possibly make her end time more comfortable. It is not comfortable to be out of breath. It really is just a primitive thing. 

And it really may be she just needs to increase her water pill a bit, or have some oxygen at home for when she feels she needs it. Not forced on her, just for when she wants it. 

I agree with KT and Stella about what this feels like.

The last time my throat swelled up badly I could not talk at all without coughing so hard that it felt like it was going to close.  I felt like I was breathing through a soggy paper straw that was about to collapse and that my life depended on staying very still, not talking, and staying calm enough not to gasp or even breathe fast.  Got a breathing treatment at the ER and was immeasurably better in the first 30 seconds (although it lasted half an hour or so to get to completion.)

I think suffocating would be a horrendous way to die, and I hope very much that my heart stops before my lungs do, from a comfort standpoint.

Quill, I think you are doing a great job, and you're obviously being very diligent in keeping the family informed which is good for everyone.  I just wanted to comment on the 'how it feels' thing above, because how it feels is so bad *in the moment*--not because I'm too young to die but because it is torturous.

 

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I wonder if the doctor can prescribe her a nebulizer for breathing treatments?  Medicare won’t pay for oxygen until pulse ox is 88% or lower, I believe. 

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36 minutes ago, Thatboyofmine said:

I wonder if the doctor can prescribe her a nebulizer for breathing treatments?  Medicare won’t pay for oxygen until pulse ox is 88% or lower, I believe. 

Would that help though if it is congestive heart failure? 

If she is already on a diuretic my guess would be that she needs the dosage increased or one of her other meds increased 

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I think there’s varying opinions on whether it helps.  If she doesn’t have heart problems, like tachycardia (since albuterol can up the heart rate), it might be worth trying as an easy at-home attempt to feel better.  Obviously her dr would be the person to ask and I’d probably give them, a call in the am to ask.  

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On 1/28/2020 at 4:42 PM, Quill said:

Not sure what I’m looking for here, other than maybe some reassurance or information I may be lacking. As some of you know, my 93yo MIL is staying here at present. I had two main goals for her stay: 1) do my utmost to prevent her getting a cold/the flu and 2) avert UTIs. I failed on point two. We had to take her to Urgent Care Sunday due to a UTI. 

She’s got antbx on board now and says her urinary symptoms have mostly abated. She still has back pain which, on Sunday, was obviously quite awful for her. She had a very poor night sleep last night and was up for the day (sort of, though she dozed in the chair) at 4:30am. She also (sorry for TMI) has constipation today, which she doesn’t usually have. 

When she arrived here this month, it was quite apparent she had become much more frail from a year ago. She has practically zero stamina. Making the trip from the couch to the toilet exhausts her. She naps about 80% of the day. 

My main point, though, is in the past few days, roughly correlating to the UTI, has her absolutely gasping for breath. She commented today that chewing toast was making her gasp for breath. Making the tiny journey to the bathroom and back also has her gasping. It’s fairly terrifying watching and listening to her gasp like that. It makes me fear she’s going to drop into cardiac arrest at any moment. Even my ds asked me if she was going to die. 

Might the UTI be causing the extreme shortness of breath? Or more likely - she’s aged. She’s got a lot of issues. She takes like nine medicines. She has had an arterial blockage before, a few years ago. I’m glad I have been of service to her this month but - I feel ashamed to say it - I want her to go back to my SIL’s soooo much right now because I don’t want her to have a serious medical crisis on my watch. 🙊 It’s super stressful. 

Okay. Thanks for listening. 

 

I’m sorry to hear she’s not doing well.  My first, and really only, thought, was a reaction to the antibiotic. Was it the same antibiotic she’s used in the past?  Or something different because a new place/doctor?  My mom was extremely sensitive and allergic to many antibiotics which is why that stuck out. One reaction was severe shortness of breath. Keflex and cipro were some of the worst for her.

its something I look out for as well. I’ve had two meds that I reacted with serious breathing issues.

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7 hours ago, matrips said:

I’m sorry to hear she’s not doing well.  My first, and really only, thought, was a reaction to the antibiotic. Was it the same antibiotic she’s used in the past?  Or something different because a new place/doctor?  My mom was extremely sensitive and allergic to many antibiotics which is why that stuck out. One reaction was severe shortness of breath. Keflex and cipro were some of the worst for her.

its something I look out for as well. I’ve had two meds that I reacted with serious breathing issues.

Interesting. I think it is Keflex, though I don’t think that’s different from what she’s had before. 

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8 hours ago, matrips said:

I’m sorry to hear she’s not doing well.  My first, and really only, thought, was a reaction to the antibiotic. Was it the same antibiotic she’s used in the past?  Or something different because a new place/doctor?  My mom was extremely sensitive and allergic to many antibiotics which is why that stuck out. One reaction was severe shortness of breath. Keflex and cipro were some of the worst for her.

its something I look out for as well. I’ve had two meds that I reacted with serious breathing issues.

Might be worth calling the urgent care to tell them that since she started the meds she's seemed more short of breath and see what they say. 

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21 hours ago, Ktgrok said:

Would that help though if it is congestive heart failure? 

If she is already on a diuretic my guess would be that she needs the dosage increased or one of her other meds increased 

 

Meds can only take you so far with Stage IV congestive heart failure. Once the max dose is reached, it’s just a matter of time for the meds to lose effectiveness and fluid buildup is not preventable, or the heavy diuretic load deals a final blow to the kidneys and they fail. 

It’s not a comfortable end, that’s why palliative care is so important.

 

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3 hours ago, Seasider too said:

 

Meds can only take you so far with Stage IV congestive heart failure. Once the max dose is reached, it’s just a matter of time for the meds to lose effectiveness and fluid buildup is not preventable, or the heavy diuretic load deals a final blow to the kidneys and they fail. 

It’s not a comfortable end, that’s why palliative care is so important.

 

Yes, this, but it can be a comfortable end with palliative meds. 

Quill—since she is headed 5 hours south this weekend (if all is still going as planned), have you all been able to get whatever photos or closure you need? She could hang on for years or just hours...it’s kind of a crap shoot when you are that old and things are trending down. 

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12 hours ago, prairiewindmomma said:

Yes, this, but it can be a comfortable end with palliative meds. 

Quill—since she is headed 5 hours south this weekend (if all is still going as planned), have you all been able to get whatever photos or closure you need? She could hang on for years or just hours...it’s kind of a crap shoot when you are that old and things are trending down. 

Yes, we are taking her south today. We have taken lots of pictures of her while she’s here, and I have made it a point to tell her I love her over the past year or more. My dh made a big production of taking pictures of her eating the special meals he made. My boys are here to bid her goodbye. 

None of us knows what will happen, of course, but I don’t think she can make that trip any more times in the future. Whether by air or car, it’s pretty grueling and I don’t see more of that in the future. In many ways I feel as though this time of having her here for a month is my one last major act of service I get to give to her. Maybe she will be around for a long while still but if not, I am at peace with the love we have heaped on her this month. 
ETA: For your viewing pleasure, youngest ds with MILthis morning. 💕

B2E5F637-C0F2-4108-A73B-ED08DDEF2E3A.jpeg

Edited by Quill
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13 hours ago, Seasider too said:

How did the trip go, Quill? 

And yes, your son is a cutie!

It was okay. We spent the night there and are driving back now. 

That trip is absolutely stressful for her, though. She had a couple breathing episodes along the way and I think it was due to the stress of being on the road and also having to use rest-stops for the bathroom. It was such a relief arriving there and my SIL was well prepared to help get her right. Their house is set up so much better for it. 

They’re such nice company, my SIL and BIL. I wish it wasn’t so far from our house. 

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Unhappy Update, though not what you might think: 

THe SIL down south, who is caretaking MIL, had a bad accident today with her horse. She has two crushed vertebra. ☹️ This is actually a more extreme version of what I have always thought was the one major drawback of MIL staying down there. All the help is up here, a couple hundred miles north. (She is married, but BIL cannot do all the things, though he can do some of them. They have a nurse who sometimes comes; maybe the nurse will be able to come for showers while SIL is convalescing.) 

I have no idea what the plan will be. Prayers and healing thoughts/asking the Universe for solutions appreciated. 

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