Devices to remind my cognitively impaired mom not to remove her oxygen?
September 13, 2012 2:13 PM   Subscribe

Please recommend devices/tools/strategies to help my mom—who has mild dementia—remember not to remove the oxygen she is now required to wear 24/7 for COPD. Longer story inside...

My mom is in the hospital; she has had COPD for some time, and it had been progressing blessedly slowly until now. The doctors now say that she needs to wear the oxygen 24/7 and I agree. Now, without oxygen when resting, her oxygen saturation goes down to a very low level. The problem is that she also has some cognitive decline and (even in the hospital) she tends to forget why she's supposed to be wearing the oxygen and takes it off; hours later the staff will find her very confused (due to the aforementioned cognitive issues combined with not getting enough oxygen).

She's had oxygen at home prescribed by her pulmonologist for a while, but hasn't needed to use it. Her levels were such that the doctor did not require her to use it unless she needed it.

The hospital staff is of the opinion that my mom needs 24/7 supervision to ensure that she does not remove the oxygen. My mom is still relatively independent, and a fierce advocate for her independence; this suggestion strikes me as a bit extreme. While she does live in an independent living facility and have a care giver who attends to her regularly none of this is round the clock care, nor should it be.

Are there any reminder devices, strategies, or suggestions that the community of mefites might recommend so that my mom is reminded not to remove her oxygen but is able to maintain her independence for as long as possible? I'm thinking of something would go off when she removes the oxygen, but such a device does not appear to exist. She does not have an iPhone or use a computer regularly.
posted by JuniorBCat to Health & Fitness (12 answers total)
Would a sign that she could read help? We put up a sign for my grandmother each day with the day and who was visiting, and that helped her remember those things.

I know that there are alarms for people who get out of chairs/beds - perhaps one of those could be modified to the mask? The ones I have seen are made to hook onto a chair/bed and seem like they would be heavy, but maybe there are others?
posted by needlegrrl at 2:20 PM on September 13, 2012

Does she or can she wear a digital watch? Get one that allows you to set recurring alarms. Set one for every 30 minutes, or whatever interval you feel comfortable with. Work with her to ingrain the concept that watch alarm = check that you have your oxygen hooked up.

Assuming that she doesn't want the alarm going off all night while she sleeps, keep the watch in the kitchen and put a large bright sign on the bedroom door on or her night stand saying "Put on your watch when you get up" to remind her.

Also, signs around her room or apartment - "Check your oxygen" or "Are you wearing your O2?"
Perhaps along with that, create a few different signs, with different text and in different colors that the care giver can rotate every few days or each week so your mom won't start to tune them out as just part of her decor.
posted by trivia genius at 2:25 PM on September 13, 2012

I've seen people write on tape over a port or tube to remind the wearer not to futz with it...but that would be difficult, I think, for something on the face, considering it would either be bothering her more or could tear her skin if she were pulling it off, seeing the note, then putting the tape on again repeatedly (mature skin can be quite fragile and even sensitive surgical tape can create a wound).

Signs and alarms combined sound better.

I hate to say this, it may be time to accept that general independence means having someone check in on her at regular intervals. Perhaps someone could call every hour?
posted by batmonkey at 2:34 PM on September 13, 2012 [1 favorite]

Best answer: You say she's currently in the hospital? Previously, at home, although she wasn't required to wear O2 all the time, she did use it at all? How does she manage medications (if she's taking any)?

The thing about hospital visits is that it completely throws a person off their routine. Firstly, they're ill, so they're not feeling their best. Secondly, they are in a new, strange environment, where the primary goal is to care for the person medically. This can be confusing to a typical person, never mind someone with dementia!

All this to say that hospital staff see people at their absolute worst. They need to make recommendations based on the presentation at the hospital, but it's possible that once your mom gets back to familiar surroundings, she might be better at complying with the new O2 requirements. All the suggestions for signs and explicit reminders are good ones (alarms, although a good idea, can go unnoticed if not paired with a sign or note, or she might forget why the alarm is going off and just turn it off. But you can try it and see how she takes to it.)

You might want to consult with a nurse, or a therapist (SLP or OT) at her facility to see if they have some suggestions. You might be able to arrange for a CNA or other aide to check in on her (as previously mentioned).

Good luck!
posted by absquatulate at 2:40 PM on September 13, 2012 [1 favorite]

I have had several relatives who were very independent enter this stage of life, and both would have screamed murder (well, protested) if asked how they felt about losing independence.

Both, when finally more care (and less independence) were relieved.

There are O2 alarms one can wear, but the last time I looked at them (maybe six years ago) they generated a lot of false alarms with movement.

The doctors are saying this: "mom needs 24/7 supervision to ensure that she does not remove the oxygen."

Your mom is doing this: "she [forgets] and takes it off."

You and she may feel happier doing what the doctors are saying afterwards when neither of you has to stress about her being low on oxygen.

So I would suggest, gently but firmly too, have courage to give it a try over Mom's initial protests, say for two weeks, and see how you and she are doing then.

You may find, like my relatives did, that their real fear was of change rather than of the result of the change.
posted by zippy at 2:45 PM on September 13, 2012 [6 favorites]

I'm knee deep in a dementia/Alzheimer's situation with my mom right now. I've had to make some decisions that really piss her off, and make me feel like I've failed her. It just goes with the territory. Understand that it isn't going to "get better". In fact, it only gets worse...just do what you have to do, and keep your head up.!
posted by lobstah at 6:33 PM on September 13, 2012 [2 favorites]

Another issue with having oxygen all the time is tripping over the tubing. And having the machine set to the correct level and maintained. When my relative was using 24/7 O2, there was a portable machine that she used when going out, and switching that out for the equipment she used around the apartment and turning things on/off was a big issue as well. Can you start with a sitter in her current apartment for a while and see how things go?
posted by momus_window at 6:48 PM on September 13, 2012

One thing to keep in mind is that ongoing low O2 saturation leads to more confusion and can lead to further cognitive decline. This may be why the doctors are recommending round the clock monitoring.

If your mom comes off oxygen at night and is alone, she could – due to low oxygenation causing additional confusion – be off oxygen until the next morning.

Imagine she's a scuba diver with a breathing apparatus and an oxygen supply. She needs a diving buddy with her in case things go wrong. Someone who has her back if systems fail or come unhooked.

This doesn't have to be someone waking her up all night or hovering over her; it's just someone in the next room who is on duty and can check on her when the low-saturation alarm goes off.
posted by zippy at 8:59 PM on September 13, 2012

lobstah really nails it.

If she isn't remembering why she has the tubing on now, it's just going to get worse. A common thing Alzheimer's patients resort to are leaving notes in easy view. A big, obvious note next to her bed saying something like "Do not remove the tubes! They help you breathe!" is probably in order. Vocally telling her...reminding her...really isn't going to sink-in. Dementia ravages the short-term memory first. She simply isn't going to remember your warning, 5 minutes later.
posted by Thorzdad at 6:07 AM on September 14, 2012

That said, notes are just a stopgap. They'll eventually not see the notes, too.
posted by Thorzdad at 6:08 AM on September 14, 2012

Is she really forgetting or are the tubes that uncomfortable and inconvenient? I sure as hell wouldn't want something attached to my face all day. Is there anything that can be done to make it more comfortable?
posted by desjardins at 8:16 AM on September 14, 2012

Response by poster: Thanks to everyone for this guidance. It turns out that absquatulate was on the money. When my mom got home, she got some good sleep and became (relatively) reoriented to her surroundings. She also quickly realized that she was a lot more comfortable while wearing her oxygen.

There is, of course, a long road ahead of us. But for the moment, the situation has stabilized and my mom is comfortable and content. Again, thanks to everyone for the guidance.
posted by JuniorBCat at 8:44 AM on October 6, 2012 [1 favorite]

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