Actual supplemental oxygen use

Quilting brings calm

Question for you all. What’s the likelihood that someone at stage 4 will wear the supplemental oxygen as often as they should? and does the possession of a Inogen bring that likelihood percentage up?

Mom had an 86% oxygen level on 3/27 and an 84% level on 4/11. It had been over 90 in late February. PCP prescribed supplemental oxygen on 4/11. We are still waiting for Apria to get approval/deliver the big machine. In the meantime, mom is supposed to be using the Inogen that my step-dad used prior to his death in February.

Usage is spotty at the moment. Part of that is probably because of the battery life. Part of that is her. When I got to the AL at 9am this morning, she wasn’t wearing it. It sat on her nightstand plugged in and fully charged. My guess is she hadn’t worn it overnight even though she could have. She also doesn’t like taking it out of the apartment with her- even though that’s what it’s main purpose will be.

I’m not hopeful that she will use the big machine any more than the portable one.
She was really confused when i spoke to her on the phone last night and then when I saw her today. I’m sure the oxygen level isn’t helping.

For the doctors here: what’s the prognosis if she doesn’t wear it like she should? And given her oxygen level with just a little activity( walking from the waiting room to the exam room), I think she should be wearing it all the time.
FYI- her DNR form said no code and comfort care in section B.

M1

qbc you’re probably fighting a losing battle on this one. My partner is in a similar situation (though further along than your mom, stage 6) in that she needs a walker but won’t/can’t use it, keeps falling.

She will get worse quicker without the oxygen, no question. And at some point the low oxygen levels will make her feel bad, so it becomes a comfort measure. But I don’t know that there’s anything you can or should do about it. You could consider telling them to quit checking it if you’re not going to do anything about it. But as we’re discussing a lot on other threads today, sometimes it’s very hard to convince people to quit collecting data that you’re not going to do anything about.

Quilting brings calm

@M1 - thank you. I thought that was the case. We will get the equipment and just go with the flow. The AL staff will be the ones reminding her to wear it over the course of every day( as best they can). The readings were at doctor appointments. I’m not expecting AL staff to check her oxygen daily.
The pulmonologist appointment is in June. The PCP recommended we keep it. It may at least give us a timeframe. I’m sure her lung issues will continue to progress.

What is interesting is that even with long term COPD, my step-dad had higher levels without wearing his oxygen than mom’s levels. Up until his last month, he was always over 90% at the doctor’s office. He most reliably wore his oxygen while sleeping.

harshedbuzz

@Quilting brings calm

I'm not a doctor, but I am familiar with Inogen, in-home concentrators and the use of O2 for COPD.

A couple of thoughts. The capabilities of the models varies. The lightest weight one, which weighs about 2.5lbs and offers settings 1-3 has a battery that lasts a little over 2 hours at 2. The heavier G5 offers more time, especially with a 2nd battery and settings up to 6.

Compliance, even without dementia, can be spotty. My mom doesn't always need O2 yet, but when she needs it, she finds it a PITA. At home isn't too bad, but she finds it stigmatizing and prefers not to be seen as she thinks everyone is judging her for years of smoking. My friend's husband found his unit cumbersome physically and emotionally having to tote the bag with his bad shoulders and always watching his time and scanning places for outlets in case he needed a charge. He would sometimes "forget" it. Things improved somewhat when he got a backpack for it.

Given that this is new routine and technology to mom, I wouldn't be surprised if she mostly ignores it. Like M1, we had that with dad's walker which he never believed was his.

Given your mom's vision issues, the in-home concentrator unit is a concern. It's easy to trip over colorless tubing. My friend's husband did this once. He also sat on the tubing and cut the airflow off a few times.

It's interesting about the differences in baseline O2 levels. My mom and dad both have/had COPD. She has asthma as well, but his lungs were worse from scarring. His O2 tended to be steady at 94-ish. Hers is all over the place— during her recent UTI it dropped to 84 which triggered the ER visit where it magically rose to 94 within an hour and 96 at discharge. A big part of this is how she breathes— or doesn't. She tends to be a breath-holder when stressed or really focused on something which causes her numbers to drop. When prompted by nurses to breathe, she tends to over-do it an hyperventilate which makes it worse because she doesn't empty her lungs. It works better when she uses the meditation app on her Apple watch or we lead her through slow breathing.

FWIW, I notice O2 levels really impact mom's mood and cognition. When they get lower from illness, the first symptoms are seen there— she gets vague, confused and even a little paranoid. I'm not sure whether MCI would be impacted.

HB

Quilting brings calm

@harshedbuzz

This one is a G3. Internet says the battery life is 4.5 hours. I’ve suggested to mom that she watch the TV in her bedroom since she can leave the unit plugged in while she’s wearing it in her recliner. I don't know what portable unit the supplier would eventually send if we didn’t already have the G3.

Step-dad’s last fall 3 weeks before he died was thought to be because he got tangled up in his own tubing/clothing in the bathroom.

The PCP told mom her brain, heart and kidneys would work better when she used the oxygen.

My thoughts on compliance match yours and M1’s. I think the next year will bring a lot of changes for mom, not in a good way physically. She will be 86 next month, so I can’t say it’s all totally unexpected

harshedbuzz

@Quilting brings calm

My mom was 86 in February. Sometimes I feel like things are just wearing out on the dear woman. And your mom's been through a lot the last year so yeah. Hard stuff.

One of the ones my friend's DH had was a G3. It's the lightest one and has the shortest battery life. He liked it because he could plug it into the wall when he went to play cards with his buddies (2 were doctors who would rag on him when he didn't bring it) or into the car when driving somewhere. He had the bigger one when his needs changed but he'd cheat using the smaller one.

I hope they can prompt her on this enough to get significant time on O2.

HB

Iris L.

HB, can your DM be coached in deep breathing? She can take a deep breath and blow out slowly, like blowing out a candle. A few deep breaths throughout the day might help keep her O2 levels up.

Iris

harshedbuzz

@Iris L.

That's exactly what I do with her. Slow inhale through the nose for 4 seconds followed by a slow exhale through parted lips like a candle for 5-6 seconds. She can't go any slower than that. This usually gets her back to a decent— for her— baseline unless she's got something like pneumonia or RSV fairly quickly, but it doesn't come intuitively to her.

She has ADHD (combined type) and tends to rush through things and get back to what she wants to do. It's been a challenge, for instance, to get her to do her PT exercises slowly and deliberately because she wants to rush through and be done. She approaches a low O2 in the same hyperactive manner as if it will right things more quickly.

At least she's remarkably compliant with her bi-pap.

HB

Iris L.

Good to know! I'm kind of a rusher, too, but I think it's because I'm a native New Yorker and we're always rushing. 🙂

harshedbuzz

https://alzconnected.org/discussion/comment/205848#Comment_205848

She's a Bostonian by birth and also has the tendency towards fast speech and fast driving.

Quilting brings calm

Mom has never spoken fast ( central Illinois), and speaks slower all the time. Like she walks. She also mumbles - or maybe I need a hearing aid.

One of the therapists ( occupational,physical, speech) at the AL gave her some instructions about breathing last week - before her wellness appointment.