Sorry for the dramatic user name. I was in dire straights when I created this account.
My mom (who is in assisted living) has been making gasping sounds for months now. Like she has to work to get air. She said it exhausts her but has become her normal. And she's shaking when at rest which she also never had when living with my dad before he died last November.
Last night I asked her to take long deep breaths for a while and she said, "My hand just stopped shaking! For the first time in months!" Every time I ask her to breathe deep the shaking stops. She was on a CPAP for 20 years and when I asked her, months ago, if she had her CPAP she said my sister told her she didn't need it anymore (don't get me started). I thought that sounded strange and asked my mom to go find someone who worked there and hand them the phone. They said they noticed it too and were concerned. I asked why she isn't on the CPAP and they said that they were never told she ever used a CPAP. My mom sounds like she's in pain but says she isn't..."it's just exhausting" and says she can survive until Monday. Said she can survive until I come to get her to move if she has to. She's a trooper. Too much of one sometimes. I didn't realize all this time that she was gulping for air. They're calling my sister and maybe conferring with the doc there on Monday.
My mom has short term memory issues but only mild dementia. My dad was taking care of her and planned to continue taking care of her. She can still talk for hours and understand subtle humor and sounds like her old self. She's moving out to another state to be by me in 5 weeks but I don't feel like I can wait that long. I want to fly down with an oxygen generator asap. :/
Thoughts? She also feels like she can't sit down without popping back up and paces all around her apartment, takes many walks every day. That happened to me a few times after surgery. I had more drugs on board than I could clear. Awful feeling. She said they recently cut back on her medications. I wonder if they maybe recognized it was too much and maybe it is still too much on board or if this is some kind of withdrawal? Or if it's maybe all related to the oxygen. I know when she first got the CPAP she was hyperactive from not sleeping well at night...running on adrenaline.
Her oxygen was normal when they checked it today but she's having to gasp/gulp to keep it at that level. I suspect that on oxygen she would be able to breathe normally. She used her CPAP religiously and even took it to Mexico where they lived for years, and were about to return to when my dad died suddenly of Covid.
It has been one of those days. Please respond compassionately or not at all. I'm fried. Thanks.....
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Grrrr......
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Has she been declared incompetent?
Your mother needs medical assessment to look at cardiac function, possible infection, and level of anxiety, as well as more obvious lung issues. Can that be arranged while you are waiting for her move?
Can you call them back? Can you explain that the problem doesn't happen at rest, but when mom is pacing and talking?
I think I would try to get hold of the social worker, if there is one at the AL to explain the problem. And while I know mom only has mild dementia, I wouldn't rely on her to tell you what was said or promised.
I came late to this thread as well. I hope you can tell us that the POA for your Mom (I am not clear if that is you) has asked that Mom be transported to the ER. Do know that they can at the ALF do an O2 sat on Mom, assess her color, etc. and do some few other things. They should be able to report to you on the outcome of those simple assessments.
I hope the MD there has seen her. If not, and if this has continued, Mom should go to the ER now.
I am certain it is very difficult to be so far away.
It is my feeling that no ALF will supply O2 (which is in most places considered a prescription) without a diagnosis. Things that we think might help as lay people can actually have a bad affect.
Please encourage whomever is POA, or the facility itself, to get Mom to an ER for a pulmonologist.
Hoping you will keep updating us. Wishing you and your Mom well.
1. Forget about purchasing an oxygen concentrator; they're expensive, very expensive. This kind of purchase is more suitable when arranged by a medpro. The DME supplier provides all the supplies, and (in my experience) was available for phone advice during an potential emergency.
2. Your mother needs to be tested by a pulmonologist, NOW. She can be tested in the office, as well as overnight. That's the route our pulmonologist took. Overnight testing is necessary, and must be evaluated by a pulmonologist (preferably) to determine her breathing capability and the rate flow that's appropriate.
3. If your mother does need oxygen even just at night, or periodically during the day, the pulmonologist will prescribe and the DME oxygen supplier will bring either a concentrator and probably a portable concentrator for use outside of the home (i.e., to doctor appointments outside of where she lives).
4. If I understand correctly, more evaluation was to have been done yesterday. What were the results?
5. I admire your perseverance and concern in attempting to find a solution, but med pros absolutely need to test her oxygen levels, at night, while walking/moving, and while stationary. Don't take on this role yourself, even if you may have medical training. Rely on the pros, and do it quickly.
6. Apparently she's living in some type of AL? (She has an apartment.) Does she have a medic alert? If not, get one. If her breathing becomes more labored and she can't call out, the alert pendant will contact the supplier (or you, or someone else as would be arranged when it's rented).
7. BTW, "belly breathing" or stomach breathing is a practiced art of singers. I learned it when I took voice lessons. It allows the person to breathe more deeply while also controlling the breathing. I do it when I become "out of breath" and try to incorporate it all the time, but typically forget to.
I hope you can get pros involved, get an analysis quickly, and get oxygen delivery started. Even if your mother will be moving closer to you, in my experience the DMEs used by Medicare can be either local or national. Switching won't be difficult and would be arranged w/i the company.
https://www.medicalnewstoday.com/articles/dyspnea-on-exertion
Unless “sister” is a pulmonologist herself, Sister is a poor source of information. She may be poorly informed on how serious breathing issues can be.
DH and I (late 70’) both underwent assessment for obstructive sleep apnea before COVID. The importance of follow up and the repeated references to the link between night time oxygen deprivation and other geriatric symptoms scared us both into action.
You seem to have developed an action plan based on your hunch that your mother may need much more comprehensive care than she is currently receiving. If you have access to her Monday medical consultation, get as much information from that as you can.
if you have to finesse your attempts to work with your sister, be as tactful and diplomatic as you can manage. Overt hostility never really advances the progress to problem resolution.
Hoping you will be receiving enough information so that you, your mother AND your sister can find a solution you all can manage comfortably.
For the record I would have seen my mom by now but soon after I was last posting here I pulled off a miracle and bought a house in another state in record time so that I could get her out there. It has been one crazy year.
My mom can happily chat for hours laughs and enjoys our conversations. She's even more lucid now so I enjoy our conversations too. I got her on a few herbal tinctures and her memory and focus are amazing. She feels consistently like my mom from 30 years ago. Good natured, curious, anxious to begin again and explore and travel. Smart, funny....cheerful. She's bored out of her mind and says no one can have the kind of conversations she wants to have in there. I ran some of the cognitive tests by her and she knocked it out of the park (1A 2B 3C...) she was all the way to "I" before I stopped her. "Is this supposed to be hard?" She can calculate change from a $20. She can tell what things a boat and a car have in common. She does better on some of the tests than I do. The first day she asked me 8 times how many drops and how often and four days later she starts the conversation with "Should I take the drops? I took some earlier." She's taking them daily now at a good rate (I ask her how much is left in the bottle) and has very little confusion. Things she wouldn't remember at all before she now says, "Oh yes...." New events are often still dropped but she's remembering the things that matter to her most, has consistent wishes and opinions. No mood swings. No dramatic responses...just "Oh brother..." She's a realist and highly adaptable. I read some of the stuff people go through and I feel really lucky. I told her I was going to start considering getting any house and she said, "No, get the right house. It's your first house. It has to be a house you love."
I have no way of knowing which doctors my sister has taken her to as she is very narcissistic and locked everyone out of the information loop as soon as she acquired power. She was always the black sheep of the family and is making the most of it. She has a hair trigger and anything that could be taken as judgment isn't received well. Retribution will be doled out. She's a contrarian and will do exactly the opposite of what you ask her to consider doing just to let you know she won't be told what to do -- whether it's in my mom's best interest or not. I have to lay really low and remain submissive to get anywhere with her and even then she's paranoid and hostile.
I don't believe my mom has ever had heart issues. She walks several miles a day, always has, was doing 4+ miles a day in Mexico a few years ago. Normal weight. Eats healthy. She can go out all afternoon, attend local festivals, shop....the breathing is worse in the evenings but they knock her out with something every night and she sounds like she's had half a dozen margaritas 10 minutes after she takes it and the breathing gets better as she gets sleepy and she's out all night.
My mom breathes like someone who needs more oxygen and can't afford to slow down and take measured breaths. She can breathe slower if she thinks about it. Not super slow. Not Yoga slow. But she can slow it down. And almost immediately her hands stop shaking. No pain or pressure in the chest. I called her this morning and it was better, still there but less severe. She says she's fine but is tired of feeling so wound up but feels like she can deal with it as long as she needs to, which hopefully isn't long. I'll get her to a pulmonologist as soon as we get out there if they don't get her to one where she is sooner.
I absolutely cannot wait to have her with me. Being locked out of a mother's care really helps you to appreciate the opportunity to help her.
I have to wonder if she's actually going to medical appointments as whoever is in charge of her care has mysteriously missed the gasping which has been going on for months. I figured out the connection to the shaking from 1000 miles away by just doing a little experiment.
I'm glad that you've been able to arrange your mom's move; 5 weeks is a long time to wait (for both you and mom) but I'm sure you'll feel better having her close.
It seems to me that only a doctor is going to be able to figure out why mom is gulping or gasping for air. Most ALs have a doctor who calls in or who has hours on site a few times a week.
Who is mom's current PCP? When was she last seen?
Does your mom have cardiac issues?