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

[Ginevra]

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. 

 

Edited February 5, 2020 by Quill

[hippiemamato3]

She should go to the ER if she is that short of breath. How scary for her! 

[Selkie]

Did you ask her doctor about the gasping? I'm no expert, but that doesn't seem normal. I'd be worried about a heart or lung issue.

[Guest]

1 minute ago, Selkie said:

Did you ask her doctor about the gasping? I'm no expert, but that doesn't seem normal. I'd be worried about a heart or lung issue.

No; it is worse now than Sunday when she was at UC. 

[Selkie]

2 minutes ago, Quill said:

No; it is worse now than Sunday when she was at UC. 

I agree that she should be seen right away. So sorry you're having to deal with this - it must be very stressful.🙁

[mlktwins]

I am fully responsible for my dad's care now even though he lives in an apartment 10 minutes away.  Very stressful having this responsibility so I get it.  I would take her either to the ER or UC, but have her wear a mask so as to avoid getting the flu or whatever from being there.  I'm not sure which would be the better choice to go to, maybe the UC where she was on Sunday, but I would be very nervous with her gasping like that!

[Junie]

(((Quill)))

Is it possibly a reaction to her new medication?  Or possibly the meds are interacting badly?  I agree with the others that she should be seen.  You should take an updated med list with you.

[Tree Frog]

I think she should be seen, too. Let us know how she does!

My MIL was visiting and and told me she collapsed because she couldn't breathe while we were gone on a short errand. She didn't want to go to the ER when we got home, but when she complained of shortness of breath later, we went. She was given oxygen and a nebulizer. When she was feeling better, she went home. One of the best things I did when I took her in was to put all her meds in a paper bag and took them with us. When the triage nurse asked if she was on any medication, she only mentioned 2. When I asked about the other 4-5 meds, she dismissed them as unnecessary prescriptions (i.e., "it's only a water pill," which was correct, but it was still prescribed and she was taking it daily.)

[mlktwins]

Your DH needs to go with her in case there are decisions to be made.  I know the siblings trade off on her care.  Is there one of them that you are comfortable calling to ask them what you should do?  My FIL called me one morning saying he was very weak and his heart rate was really low.  He wouldn't call an ambulance so I went and got him and took him to the ER.  I stayed with him, but I got one of their kids to the ER ASAP (My DH was in court about an hour away so he was not the first one to get there).  I was not going to be responsible for any big decisions if they were needed.  He ended up getting a pacemaker put in and if ok for now.  He is 93 also.

[mlktwins]

2 minutes ago, wilrunner said:

I think she should be seen, too. Let us know how she does!

My MIL was visiting and and told me she collapsed because she couldn't breathe while we were gone on a short errand. She didn't want to go to the ER when we got home, but when she complained of shortness of breath later, we went. She was given oxygen and a nebulizer. When she was feeling better, she went home. One of the best things I did when I took her in was to put all her meds in a paper bag and took them with us. When the triage nurse asked if she was on any medication, she only mentioned 2. When I asked about the other 4-5 meds, she dismissed them as unnecessary prescriptions (i.e., "it's only a water pill," which was correct, but it was still prescribed and she was taking it daily.)

Yep!  I now have knowledge of all my dad's meds and carry a list in my wallet just in case.  I put them all in their pill cases every week and call to make sure he takes them everyday.

[prairiewindmomma]

I would be sending out a group chat to the siblings and getting a consensus on how they want to proceed.  Do you guys have working guidelines on when/to what degree you want to intervene and when you don't? I would get those parameters and then take her in as this is a new/sudden problem. 

[Guest]

1 minute ago, mlktwins said:

Your DH needs to go with her in case there are decisions to be made.  I know the siblings trade off on her care.  Is there one of them that you are comfortable calling to ask them what you should do?  My FIL called me one morning saying he was very weak and his heart rate was really low.  He wouldn't call an ambulance so I went and got him and took him to the ER.  I stayed with him, but I got one of their kids to the ER ASAP (My DH was in court about an hour away so he was not the first one to get there).  I was not going to be responsible for any big decisions if they were needed.  He ended up getting a pacemaker put in and if ok for now.  He is 93 also.

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. 

[Guest]

2 minutes ago, mlktwins said:

Yep!  I now have knowledge of all my dad's meds and carry a list in my wallet just in case.  I put them all in their pill cases every week and call to make sure he takes them everyday.

We do all have a google doc on our phone with meds, doctors, etc. 

 

[Guest]

3 minutes ago, prairiewindmomma said:

I would be sending out a group chat to the siblings and getting a consensus on how they want to proceed.  Do you guys have working guidelines on when/to what degree you want to intervene and when you don't? I would get those parameters and then take her in as this is a new/sudden problem. 

Two siblings have witnessed her breathing; one BIL was here today and he was there when she said chewing toast was exhausting, and also a SIL came yesterday to bathe her and saw her breathing. I guess this is why I wasn’t thinking she needs to go to the ER. 

I know she has Advanced Directives and a will and SIL has medical POA. 

[prairiewindmomma]

1 minute ago, Quill said:

Two siblings have witnessed her breathing; one BIL was here today and he was there when she said chewing toast was exhausting, and also a SIL came yesterday to bathe her and saw her breathing. I guess this is why I wasn’t thinking she needs to go to the ER. 

I know she has Advanced Directives and a will and SIL has medical POA. 

I want to chime back and say that I absolutely am supportive if you choose to stay home, and that there is some risk in actually taking her to a doctor/ER visit....but I would say that everyone needs to be on the same page.

[mlktwins]

4 minutes ago, 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. 

I agree with Prairiewindmomma in that maybe a group text/chat about this and what to do.  Include your DH on it as well.  I would be nervous that she said chewing a piece of toast has her gasping for breath.  That is not good and seems much worse than before Sunday.  I also like the idea of calling 911 and letting them check her out and decide.  

[itsheresomewhere]

ER or UC now.  
 

I know with her age, it can be a hard decision on what to do.  But if it is fouls related, it is like slowing drowning.  Not pleasant at all. For me, I would want to get her check out so I knew what was going on and make sure it is not fluid related. 

Edited January 28, 2020 by itsheresomewhere

[prairiewindmomma]

And that, really, all of the medical team needed to be on the same page before today's crisis as well.

But,  yes, this is crisis level.  And if you guys are choosing *not* to intervene, you need to take her to the doctor to evaluate and consider what the advanced directives say....if you want to do supportive oxygen, address any air hunger, etc.  With my relative that passed this summer, her Alzheimer's was advanced enough and there were enough other issues going on with her health that, considering her age, everyone agreed not to intervene on certain issues.  

[BlsdMama]

Quill,

Is she retracting? How is her anxiety?  (Anxiety can make breathing worse, ask me how I know...)

Does she have any other symptoms of something respiratory?  

Constipation is a very serious problem with the elderly and, coincidentally and less fun, any neurological issues.  It's something that I'm surprised she hasn't had an issue with, but *really* needs to be managed.  How long since she's had a bowel movement?  It concerns me almost as much as the breathing, but not quite.  If she is noting a difference in her breathing too and it's exhausting to chew, I'd say she needs to be seen.  Is she on any types of supplementation?  (The reason I ask is because poorly absorbed B12 and therefore iron can affect the ability to transport oxygen, so she'll feel breathless.  On the other hand, if iron isn't gentle it will cause constipation and B12 needs to be methylcobalamin.  The gut not working properly can mess with the absorption of necessary vitamins and minerals - I'd assume antibiotics will mess with that, but I wouldn't think so quickly?)

[Annie G]

Does she have any fluid retention? That can contribute to shortness of breath. When we were caring for mil we noticed fluid retention and constipation and uti often kind of clustered together. Does your mil take a diuretic?   Sorry you’re dealing with this- it’s sometimes hard to know when to seek help for an easily solved issue vs. letting the body work through it. 

[Guest]

35 minutes ago, BlsdMama said:

Quill,

Is she retracting? How is her anxiety?  (Anxiety can make breathing worse, ask me how I know...)

Does she have any other symptoms of something respiratory?  

Constipation is a very serious problem with the elderly and, coincidentally and less fun, any neurological issues.  It's something that I'm surprised she hasn't had an issue with, but *really* needs to be managed.  How long since she's had a bowel movement?  It concerns me almost as much as the breathing, but not quite.  If she is noting a difference in her breathing too and it's exhausting to chew, I'd say she needs to be seen.  Is she on any types of supplementation?  (The reason I ask is because poorly absorbed B12 and therefore iron can affect the ability to transport oxygen, so she'll feel breathless.  On the other hand, if iron isn't gentle it will cause constipation and B12 needs to be methylcobalamin.  The gut not working properly can mess with the absorption of necessary vitamins and minerals - I'd assume antibiotics will mess with that, but I wouldn't think so quickly?)

What does retracting mean? 
I don’t think her constipation has been long, but I don’t actually know the answer to that. It’s possible she last went Saturday; she may not have gone Sunday because we left early for help with the UTI. 
I don’t think she has any supplements except she takes a cranberry pill that is supposed to (but didn’t) prevent bladder infection. I’m positive she is not on iron. 

[Guest]

23 minutes ago, Annie G said:

Does she have any fluid retention? That can contribute to shortness of breath. When we were caring for mil we noticed fluid retention and constipation and uti often kind of clustered together. Does your mil take a diuretic?   Sorry you’re dealing with this- it’s sometimes hard to know when to seek help for an easily solved issue vs. letting the body work through it. 

She does have some fluid retention; it’s one of the things we monitor. She has a diuretic but only takes it if the fluid reaches a particular point. We weigh her every morning. She wears compression socks. We also monitor oxygen levels with the finger oxometer. 

[prairiewindmomma]

Retracting is a pulling in motion of the body when breathing. It is usually seen in the ribs, or where the throat meets the clavicle. You can google for video. It suggests struggling for breath.

What does the pulse oximeter say? Is there a change from her baseline normal?

[Annie G]

42 minutes ago, Quill said:

She does have some fluid retention; it’s one of the things we monitor. She has a diuretic but only takes it if the fluid reaches a particular point. We weigh her every morning. She wears compression socks. We also monitor oxygen levels with the finger oxometer. 

Sounds like you’re monitoring all the things they had us watch w mil.   We never weighed mil- does your mil’s weight fluctuate enough to warn you about fluid?
When my mom had fluid accumulate in her lungs or around her heart, her weight didn’t noticeably change. We really didn’t know until a doc visit.  But mom didn’t have it accumulate in her legs- just in her chest area. 
Hope she’s feeling better tomorrow. Feeling short of breath can be so scary.

[Melanie in WI]

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

[unsinkable]

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. 

[lauraw4321]

How is her pulse-ox?

my thoughts would be pneumonia or CHF. (Not a doctor, just a lot of elder care). 
 

Unless she has said she doesn’t want to go to the doctor or have treatment, I’d take her. Does she have hospice? If not, this diagnosis may get you hospice support. 

[Kebo]

I wonder if she could have walking pneumonia.  I had it once for months before I was correctly diagnosed (by the 4th doctor I saw) and I had shortness of breath as a persistent symptom.  

[Tap]

I would take her to the ER. So much has changed in one week, something seems to be going on. If she will wear it, have her wear a medical mask at the ER to reduce the chance of flu exposure. If not, have her sit in a wheel chair and that way you can push her chair away from anyone who is coughing or showing significant signs of illness.  The nice thing about an ER is that they can get tests or imaging done and get the results ASAP.  

 

[mlktwins]

When does the she go back to SILs?  I do not blame you - it is A LOT of responsibility.  And...I know she is your MIL and you love her, but what you are dealing with at the moment should not be falling so much on your shoulders.  It should be on DH and his siblings to be taking caring of this - with support from you.  Please keep us posted!

[Guest]

2 hours ago, prairiewindmomma said:

Retracting is a pulling in motion of the body when breathing. It is usually seen in the ribs, or where the throat meets the clavicle. You can google for video. It suggests struggling for breath.

What does the pulse oximeter say? Is there a change from her baseline normal?

There’s no change. It measured this morning at 95 and this evening at 95. 

She was retracting in her breathing, yes. If I’m interpreting this right. But it looked like her chest caved in on the exhale. Even at rest on the couch, that’s how she was breathing. 

[Guest]

2 hours ago, Annie G said:

Sounds like you’re monitoring all the things they had us watch w mil.   We never weighed mil- does your mil’s weight fluctuate enough to warn you about fluid?
When my mom had fluid accumulate in her lungs or around her heart, her weight didn’t noticeably change. We really didn’t know until a doc visit.  But mom didn’t have it accumulate in her legs- just in her chest area. 
Hope she’s feeling better tomorrow. Feeling short of breath can be so scary.

My SIL told us to weigh her in the morning every day and to be alert if her weight increases by, say, five pounds over a day or two. That was the state of things at another time when she had very bad fluid retention. She said her skin looked shiny and taunt and the doctor said she was 136lbs. Her typical weight is 131-132. She has not fluctuated more than a pound or two at most. 

[Guest]

2 hours ago, Melanie in WI said:

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

I do not think so. But she has had blockages of the artery. 

[Guest]

55 minutes ago, mlktwins said:

When does the she go back to SILs?  I do not blame you - it is A LOT of responsibility.  And...I know she is your MIL and you love her, but what you are dealing with at the moment should not be falling so much on your shoulders.  It should be on DH and his siblings to be taking caring of this - with support from you.  Please keep us posted!

She’s supposed to go back on or about next Monday. It’s honestly not falling too heavily on my shoulders, though I appreciate you caring. Dh has been very involved and siblings and their spouses have been mostly involved. (Just the one brother and one brother’s wife who are little to zero help at all.) 

So, it’s 9:34pm and, obviously, I’m still posting so we have not gone anywhere. Dh has been with her since 5:30 when I left for an appointment. He is not terribly alarmed. The SIL who was here yesterday was not terribly alarmed, though she definitely saw how short of breath she is. (We have to get her up to the second floor for a shower, which is never easy, but was worst than usual.) My BIL who was here today witnessed her breathing, too, but also didn’t seem terribly alarmed. 

The plan at the moment, assuming she doesn’t have some bad episode in the night, is to see how she is in the morning. (Dh is sleeping on an air mattress nearby to her so he hears her in the night and can help her if necessary.) 

[wathe]

4 hours ago, Quill said:

Two siblings have witnessed her breathing; one BIL was here today and he was there when she said chewing toast was exhausting, and also a SIL came yesterday to bathe her and saw her breathing. I guess this is why I wasn’t thinking she needs to go to the ER. 

I know she has Advanced Directives and a will and SIL has medical POA. 

Do you know what her Advance Directive specifies?

i agree with PP's that all caregivers and family members need to be on the same page with respect to goals of care.  It's great that she has an Advance Directive.  Everyone in a caregiving role (including you!) needs to know what the directive says and what the directive means in practical terms.  At 93, with what sounds like significant functional decline/increased frailty over the past year, UTI and cardiac co-morbidity - you need to be prepared because the the probability of a sudden decline and sudden need to make end-of-life care decisions is not low.  You need to know the answers about her wishes -- CPR?  ICU?  BiPAP? IV's for hydration or meds?  Or limit treatment to comfort care? 

It's way easier to make these sorts of decisions in the heat of the moment when the plan is known to all parties in advance.

[Katy]

I know her kids have decided not to do anything for now, but if she's decided to not pursue aggressive treatments that's different than getting a diagnosis.  If you take her in and she gets diagnosed with heart failure or anything else that's likely to be terminal she'll get additional resources like hospice care that will not only make HER much more comfortable, they'll make it easier to care for her.

[lauraw4321]

Since her pulse ox is good, I would guess she has congestive heart failure. 
 

I would also note that frequently moving her is likely going to cause her to decline faster. Has the family considered skilled nursing?

[Scarlett]

26 minutes ago, lauraw4321 said:

Since her pulse ox is good, I would guess she has congestive heart failure. 
 

I would also note that frequently moving her is likely going to cause her to decline faster. Has the family considered skilled nursing?

I don’t think they are frequently moving her. She has been at the other family’s house for over a year and has only come to Quills house because of some home repair or some such. I think. 

[Guest]

@Scarlett is correct. We are not (normally) moving her anymore. She came up for Christmas + January because my SIL sold her ranch and has to do some work on it. (It is five hours away from where she lives with MIL.) This SIL is basically the skilled nursing. The siblings arranged to pay her to be MIL’s nurse rather than hired care because she is childless, retired and able to devote her time and attention to caring for MIL all the time. This is just an unusual temporary thing. 

I do think, however, there won’t be many more trips for her from down south to here. It seems grueling whether she goes by car or air. 

[Tap]

What does she want to do? Have you asked to see if she would like to see a doctor about her breathing and constipation?

[TravelingChris]

13 hours ago, BlsdMama said:

Quill,

Is she retracting? How is her anxiety?  (Anxiety can make breathing worse, ask me how I know...)

Does she have any other symptoms of something respiratory?  

Constipation is a very serious problem with the elderly and, coincidentally and less fun, any neurological issues.  It's something that I'm surprised she hasn't had an issue with, but *really* needs to be managed.  How long since she's had a bowel movement?  It concerns me almost as much as the breathing, but not quite.  If she is noting a difference in her breathing too and it's exhausting to chew, I'd say she needs to be seen.  Is she on any types of supplementation?  (The reason I ask is because poorly absorbed B12 and therefore iron can affect the ability to transport oxygen, so she'll feel breathless.  On the other hand, if iron isn't gentle it will cause constipation and B12 needs to be methylcobalamin.  The gut not working properly can mess with the absorption of necessary vitamins and minerals - I'd assume antibiotics will mess with that, but I wouldn't think so quickly?)

THIS

One giant reason I do not want to have an advanced directive but just a POA is because of the breathing issue.  There is no way that I want to die suffocating or live with so little breath that I can't function.  Everyone I have seen who cannot catch their breath gets anxiety, usually severe anxiety.  For me and my family, do what you can to prevent suffocation and if that can't happen, give anti anxiety and pain relieving medication and resolve the suffering permanently.  My mother had that done when she was at the er with severe breathing issues and we were all with her trying to comfort her.  She had ALS and that is what the doctor did.  That was in 1986.  That is what many doctors do with the family's and patient's do when the end comes.

As to bowel movements, that is something that anyone with multiple medical issues eventually deals with.  Iron is constapiting.  Antibiotics usually are not.  You should be giving her s. boulardii with the antibiotic to prevent c. difficile. 

[TravelingChris]

8 hours ago, Katy said:

I know her kids have decided not to do anything for now, but if she's decided to not pursue aggressive treatments that's different than getting a diagnosis.  If you take her in and she gets diagnosed with heart failure or anything else that's likely to be terminal she'll get additional resources like hospice care that will not only make HER much more comfortable, they'll make it easier to care for her.

Yes. 

[Chris in VA]

Thinking of you and your mil today, Quill. 

[BlsdMama]

Quill,

There are several videos on YouTube to show retractions.  With an adult, you're most likely going to see a "pull" around the collarbones or a "tuck" up under the ribs if she's laying down.  It means that she is needing to use other muscles to breathe adequately.  The pulse ox isn't going to adequately measure how hard her body is working to keep it at 95% - like increased breathing rate or retraction.  If she's retracting and she's at 95%, she's truly struggling and needs help.  This might be in a little added oxygen, it might be a bi-pap, but she needs to be seen - pretty much immediately.  The underlying cause could be a TON of things that we could only begin to guess, but the truth is that it is really disconcerting to be short of breath - especially when you know that you have an underlying condition that's going to end you - whether it's a disease or being really old, know what I mean?  

And the other thing that MUST be addressed is the lack of a bowel movement.  If it was Saturday, we're going on the fifth day?  Beyond discomfort, it's not good for her health.  She really needs a doctor appointment ASAP.  Constipation is a tricky b... She has to have enough liquid to rehydrate that movement and the strength to pass it.  In the realm of horrid things I deal with that I never understood was a serious issue, constipation is one of them.  And I rank it only below being terrified of falling and being terrified of not catching my breath.  I identify closely with elderly can you tell? It isn't fun, but it makes me cognizant of a whole world that old people can't make younger or healthy people fully grasp, no matter how compassion filled they are.  It's not the healthy generation's fault they can't fully understand how scary and overwhelming this can be, it's just a lack of context to grasp the magnitude of the problem.

My dad and his siblings adored my grandfather.  They were beyond good to him and cognizant of his care.  For goodness sakes', a kid went over every morning to put his socks on because he preferred it over a nurse and because it gave them a chance for a cup of coffee.  But he fell stepping off a scale once and it scared him pretty good.  He was losing his balance at the same time I was beginning to really fall more often.  Dad could not grasp the need to get rid of rugs and "only one or two steps" was a HUGE deal if there wasn't a stable rail.  Huge.  

[Chris in VA]

How are things now, Quill?

[BlsdMama]

Anyone else worried?

Praying.

[Innisfree]

I haven't had anything helpful to offer, Quill, but I've been following along and thinking of you.

[school17777]

Anxiously checking this thread.  Hopefully everything is ok.

[Guest]

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. 

[school17777]

That’s a relief!