Forgetting how to inhale breathing meds

ButterflyWings

Starting a new thread to continue the emerging discussion from our Hospice Recert - good news posts.  https://www.alzconnected.org/discussion.aspx?g=posts&t=2147561124 

Others dealing with chronic respiratory conditions may want to chime in if their PWDs have gone through the issue we are having — DH is no longer understanding how to take the meds he needs, to breathe

QBC, I will be back to answer your question soon.

ButterflyWings

Quoting (excerpts moved from a different thread & topic)

Gracious Battlebuddy, that's tough. 

We haven't had swallowing issues (yet) but some impromptu choking, periodic aspiration, and also forgetting how to inhale his asthma meds. That's fun. And dangerous. Here we are in respiratory distress, and he uses the little bit of air he can muster to blow OUT, instead of sucking IN so the meds can act quickly and give him some relief. Just so hard to keep smiling, speaking softly and patiently without panicking, to help instruct a dear one who doesn't know what in the hell I'm asking him to do, nor how to do it, nor maybe even why...at just the time that he also surely is feeling about ready to just be left alone. Sigh. That was our 3 a.m. activity today. But at least the oxygen is here as well as the meds he needs, delivered to our door and without copays thanks to hospice. Finding the good amid all the hard stuff.

Bless you for being such a wonderful spouse and caregiver. With the tough road our LOs are on, it is truly important to have a strong partner (and village) to help provide safe passage. Heartbreaking for us, but on the toughest days when I am feeling frustrated, sad, overwhelmed or just down in the mouth about all this really heavy lifting we caregivers must shoulder, I try to remember it could be even worse...they drew the short end of the straw. The least I can do is try to make sure DH is as comfortable as possible and treated with the dignity he (and all humans) deserve as this thing runs its course. I hope and pray something else intervenes before 7f or whatever. 

Hang in there.

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  zauberflote Posted: Friday, June 3, 2022 9:55 PM

Joined: 10/24/2018
Posts: 1483

Butterfly, re the asthma meds, can you get them rx as a nebulizer? My MIL didn't use any meds for her COPD until it was way too late to learn how to use an inhaler. Two of the meds in her nebulizer cocktail were two I take (as inhalers) as maintenance for my asthma. And perhaps long ago you took a croupy baby to the pediatrician and they stuck you with 30 minutes of albuterol baby-nebulizer. All they have to do is breathe. And for MIL, hospice paid for the machine and meds because her COPD was what she was on for. Back to top

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  ButterflyWings Posted: Saturday, June 4, 2022 11:48 AM

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Joined: 12/11/2018
Posts: 922

Hey Zauberflote, yes the nebulizer is better but he’s still confused about the different techniques for each device. He’s getting about half that mist most times. Either he tries to blow into it or thinks it is smoke and I need to get it out of his face. Clenching teeth or putting his tongue in the way of the little spout, or just deciding “that’s enough” before the breathing treatment is done. 

We had the machine already but hadn’t needed it since before covid! He had started using a 1x daily disc with dual meds and life was great, breathing wise. That and the 1x daily Singular (Montelukast) pill was all he needed. (BTW, I learned on these boards that Singular may have some benefits re cognitive impairment and I do believe it may have helped mask his MCI and early stage AD for a while. Good and bad in that lol)

Anyway, we had a honeymoon couple of years asthma-wise with no exacerbation except when triggered by a UTI. Funny, covid masking and isolating helped a lot. The past several weeks though, you’re right, the nebulizer is our best option but it’s not yet enough. Unfortunately, the disc he’d been using 1x daily which worked miracles, is totally confusing to him now. It loads a dose of powder form that he has blown out into the room every time this week Brilliant invention and a no-brainer to use...unless your brain is broken. Confusing. As are the traditional albuterol inhalers, even (or especially) with the extender thing that helps with the timing coordination needed to get those lifesaving meds into the lungs vs the tongue or roof of the mouth. 

It’s things like this that remind me every day how many separate but automatic brain decisions and physical actions we make constantly just to stay alive. And PWDs control towers are offline which is one big train wreck. Over and over. 

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   Quilting brings calm Posted: Saturday, June 4, 2022 12:06 PM

Joined: 10/16/2020
Posts: 978

Butterfly Wings -  the nebulizer, disc,  and inhaler issue you mentioned is something I needed to be aware of and wasn’t.  So thank you for mentioning it. My step-dad has COPD and allergies,  a big oxygen machine for at night, an Imogen portable machine, a nebulizer, two inhalers, and probably more.  I just don’t know exactly what all the medications he has are for which issue.     I leave that between the doctors, pharmacy, and nurse at the assisted living center. He takes the generic Singular too.   Right  now he’s capable of using everything as long as the nurse and pharmacy get it all there.  

Can you give me some idea of what stage using the inhalers and disc become problematic?  Or did the isolation due to the pandemic give you such a reprieve that you aren’t really sure if he could have used it a year or two ago? 

dayn2nite2

Comes a time with this disease where people stop being able to utilize an inhaler.  At that point, you're left with nebulizer but you or someone else will have to hold it in the vicinity of their mouth while they're breathing so MAYBE they'd get the benefit of the medication.

My mother did Spiriva and first she refused to rinse her mouth out (you're supposed to) and shortly after that she just couldn't inhale, would only exhale.

M1

Having to give nebulizer treatments to demented or sedated folks is fairly common in the hospital--they are usually administered by face mask, so that the aerosol is inhaled through the mask.  If you have a nebulizer machine at home, ask the company supplying it to send a respiratory therapist out to check it.  They should be able to help you get the right equipment and prescriptions for it.  Might help a bit for a while longer...

May flowers

I don’t know if something like this would work but we used a chamber for my son’s albuterol when he was younger (similar to this one:. https://www.amazon.com/dp/B095GZPFJR/  )

PlentyQuiet

Just a minor note - nebulizers are dosed taking into account that not every drop will be inhaled. Yes you want to maximize the treatment, but not to the point of causing hyperventilation or such stress that the breathing is worse after the neb than before it. 

Working night shift in the hospital we would frequently do a blow by neb. Aim the mist at the nose or mouth (watch for it to be inhaled) and just let them breathe without waking them. 

Masks were great as long as the people accepted them, but many PWD I worked with would think it was a gas mask and that I was trying to harm them. A blow by neb also works if you are awake, in fact it is how most inhaled meds are given to babies and small children who can't follow direction.

25 years in respiratory care and my knowledge has been put to use outside of the hospital, I feel useful today

ButterflyWings

PlentyQuiet - thank you! I am now proficient at the "blow by neb". Sayra had mentioned the same technique on Lorita & friends' thread. I am happy for the professional guidance. Now all I need is a silent nebulizer so DH won't wake up as I try to help him breathe at night lol. For such a tiny machine it is REALLY loud. His hospice nurse was cautioning me not to get the steroid in his eyes as it can cause major problems - he uses a duo neb vial which actually has both steroid and albuterol. No worries since he closes his eyes when (if) taking the nebulizing treatment. Actually, I have been getting more mist in MY eyes over the last few weeks as I am holding the mouthpiece part for him with my face really close so he can see me (poor peripheral vision), and I can watch the signs that he's taking in the med or not. Just what I need, to have vision problems from the steroid after this. Gosh I hope not, but would never know some of the workarounds and precautions if not for you wonderful forum mates + our hospice nurse is gold.

QBC - so much for be back soon, right? I'm sorry. Saturday afternoon...well I don't even recall Saturday at this point but Sunday went off the rails so I got sidetracked. DH smacked the breathing treatment out of my hand and I almost decided to let him deal with AD and asthma by himself from now on (!) But we all know that won't work. So, I decided to focus on self care via small, completable (not a word sorry) tasks that need doing and which I enjoy. Like painting porch steps, then railing, then back door, then bathroom door...anything that can be done in 15-20 minute intervals while I still keep DH in line of sight. (Now I remember Saturday afternoon and the rest of Sunday after I calmed down lol. I got lots of little things done that have been catching my eye and almost depressing me for a while. Being homebound and almost handcuffed to a late stage PWD LO is no joke). I will also be doing yard work sporadically like that now. Feeling accomplished as well as not focusing 100% on the sinking ship of AD.

So, to answer your earlier question about timing and how/when/if your LO might experience some of this troublesome "forgetting how to take his meds". Every PWD is so different that your LO may not experience this at all. For us, it has been a respite from the nebulizer or any rescue inhalers since covid pretty much as I said. But when you asked I started reflecting as well as looking back here on some of my prior posts. And there have been signs and benchmarks come to think of it, that other skills losses are tracking about the same time as the problems I'm noticing with his meds. So I could say his current asthma problems are caused by his AD, however heads up - it was really jumpstarted by the respite folks not giving his asthma maintenance meds the first couple of days (3 or 4 days likely) That will do it. PO'd is me.

This is all hindsight: 

• MCI/Stage 3 - DH was having breakthrough wheezing more and more. I realized he wasn't always taking daily meds and wasn't refilling his meds in time.  He reported intentionally not doing that, to save money. Which is crazy. We had the money and you just don't do that - skip mandatory meds, what? Especially with breakthrough symptoms that remind you. (Now I know: Judgement issues, financial and memory challenges, executive function)
•  
• Stage 4 - World War III period soon after AD diagnosis due to me trying to take over med management. DH was not having it. But it had to be. Lots of lost rescue inhalers (expensive) e.g. Symbicort ($300 when replacing it "early" for ins coverage). DH also forgot to pay insurance so it lapsed. Including life insurance which we were not allowed to reinstate. Still crying over that when I think about it. File that under the financial ruin heading in our AD saga. Long sad story. I wish I had known anything about this disease and could have (maybe?) avoided some of the permanent harm that the PWD and also spouse and family will suffer due to plain lack of awareness that he was ill, and also of dementia generally. It isn't just forgetfulness as you know. Anyway --I also was watching him intently by now, per neuropsych and saw incorrect med administering (wrong time of day or frequency, wrong technique even with the spacer, etc). Started not recognizing his own symptoms. Not taking maintenance meds regularly. Confusion about purpose for various meds. Refuses mask for nebulizer unless in ER, which means he absolutely has no breath left to resist...almost dying. (Short term memory declining, anosognosia, executive function, personality changes - no longer cooperative)
•  
• Stage 5 - More of the same, but also less recognition of me as spouse and caregiver. Trust declined further. Questioning what I was giving him and why. Resistance despite trouble breathing and obvious improvement once nebulizer or rescue inhalers were given. I let him hold the disc one day before he started having the new problem of blowing into it, instead of inhaling the powder (I know, why? lol) so I could set his breakfast tray down and realized he was using it like a fidget gadget and the click, click, click...was 5-6 days worth of meds and money up in smoke, as he was just clicking daily doses of steroid+albuterol into the air. (Delusional thinking, Alz progression re trust, cooperation, etc. Caregiver permanent learning curve and increasing burnout )
•  
• Stage 6 - More of the same, plus obvious new issues with confusion on how to take AD and asthma meds. Chewing or sucking pills versus swallowing them. (I'm not sure what happens when you chew meds that are not supposed to be crushed, but can't be good). If sucking them despite my coaching to swallow with liquids provided, he later hides or spits these meds out due to bitter taste. Seroquel as well as Singular/Montelukast. Not good to miss either. He ALWAYS swallowed meds, no problem. Seems to be confusing this with technique for cough drop lozenges used constantly for years -- for dry mouth and post-nasal drip. (AD Progression complicating his chronic lung disease. Yikes.)
•  
• 6d - And now, major confusion about the steps or techniques for various devices and how to properly take his asthma meds as I shared in the OP.  DH is blowing versus inhaling from the disk or inhaler, biting or just refusing mouthpiece of nebulizer, mask is not tolerated (very resistant to anything over his mouth and nose...even covid masks but we rarely go outside the house.) Etc. I have to really wear him down to do this and Sunday he swatted it out of my hand. Had I insisted he may have pushed me or swatted/slapped my hand so I just stopped. Tried again hours later but that's not great to delay, and even then I had to just hold it under his nose and if he got some it is better than none. Since duo neb has steroid, nurse and doc do not want me to try doubling the vial and then assuming he gets a full dose that way as there is no heart monitor at home, unlike the ER. Life in the fastlane... (AD Progression)

I hope everyone has a peaceful and non-eventful day. QBC I hope and pray your LO does not develop any of these issues. Maybe the routine at MC is ingrained and there is no issue with missing the meds which is excellent. I would assume the nurse administers the meds and watches to see they are taken properly. The only sign I had was, breakthrough wheezing and then it gets out of control and once triggered, it is tough to get it back to baseline = fully managed.

Quilting brings calm

BW-  no worries about the response time. My question didn't need a quick response.  My step-dads pills are administered at the right time by the assisted living staff.  Pills are kept in a locked cabinet in their apartment and staff opens it, finds the right pill pack etc.  However  all his inhalers, disc, nebulizer and oxygen is left in the apartment for him to use as needed without supervision.   Your earlier post made me realize that will need to change at some point.  The nurse does keep an eye on when it all needs reordered. The staff would also notice if his breathing seemed off or his wheezing increased.  

Step-dad has never been cooperative in his life.   However this forum has helped me realize why  it’s gone to a whole new level … anosognosia.  I finally realized yesterday ( I’m on my vacation so I got a minute to think) that has a lot to do with why he’s calling me and several other people liars, etc. It is also  why he  keeps refusing to go to the doctor that might actually diagnose him. He’s already saying he won’t go back to the Neuropsychologist  for the 3 hour testing.   I don’t know what he’s going to test out as anyway since he’s never been able to do ‘adulting’ to begin with and only had an 8th grade education.  He doesn’t hear well, and his voice is strained from all the thyroid cancer surgeries  so he doesn’t converse a lot.  His symptoms are a lot different than my moms.  No repetitive questions, no demonstrable anxiety. He’s not noticeably off to people that don’t know him.  The staff doesn’t complain to me. He saves his anger, paranoia  and delusions for mom and me.   

I think you answered my question very well.  I know what to watch for now.  I hope what you are having to deal with never comes for him.  He’s 82 with severe COPD ( according to the doctor) but he seems to keep his oxygen stats up during the day.  

I think the pills that aren’t supposed to be crushed are extended release.  Meaning the tablet or capsule dissolves slowly and rehearsed medication slowly. Chewing them would result in a faster release  and then nothing remaining later in the day.   

I’m sorry your weekend was so rough.  You seem to have decided on a productive way to deal with it though.  

We lost my spouse’s railroad group life insurance when he was off sick longer then he had paid sick days.  I didn’t realize he needed to contact  someone  about paying the premium.  We couldn’t get it back when he returned to work either. So all we have on him are a couple small policies that will pay for the funeral etc  and a policy that only pays for accidental death available through our credit union.    There no point in trying to obtain a policy with all his heath issues ( not dementia) 

ButterflyWings

QBC - I'm happy my long, and long delayed reply helped. Yes, I too hope your PWD and others don't go through this. My DH would be disgusted and humiliated if he only knew about all the things he doesn't know and can't do anymore.  It is so, so sad.

Final point that I forgot to add for the last bullet point is...in addition to forgetting how to take the meds, AD is now effecting communication more and more. And that is making his asthma management very iffy. e.g., DH is recently having a lot more trouble with understanding words generally. What I noticed in Stage 5 and early Stage 6 was obvious word retrieval trouble and then increasing periods of nonsense convos or even word salad. But in the last few weeks/ months his AD is now progressing to include trouble comprehending what he hears and what it means. 

I'm sure it was happening anyway, but it is obvious seems like every day now there is more decline with understanding what words mean, period. He honestly doesn't know what I mean. No clue what I am asking him to do, though he has done it hundreds and hundreds of times over the decades. So, even when he wants to cooperate it is hard. He starts to blow and I say, oops, you're blowing...gotta breathe it in, not out! And I even try to demonstrate but he doesn't understand my instructions when I say, breathe in, or suck it in, or inhale. He sometimes blows out anyway, or will puff up his cheeks and not send any air in or out. I'm there trying to time it as soon as he exhales to be ready for the intake at just the right second and well...it doesn't work too well. The disc and rescue inhaler with extender aren't really set up that way. Meanwhile we are wasting dose after dose trying anyway. 

Dementia is such a crazy disease and it complicates everything to an unbelievable level. As hard as it is caring for a PWD LO, thank goodness they have us and the many helpful, well-trained professional carers and healers. I don't know what would happen otherwise but it would not be good.

PlentyQuiet

I used to send home 20 foot tubing with parents who had to neb their babies. That way you keep the noisy machine in the hall. Not perfect, but better. Ask the homecare company for some, or even for 2 long tubings plus a connector to get the range needed.

Also the Duoneb does not have a steroid. It is Albuterol and Atrovent (Ipatropium). The Atrovent can cause issues if it gets in the eyes so still be careful, but there isn't a steroid so there is no issues about rinsing the mouth after. 

Good luck

ButterflyWings

PQ - Thank you! Huge help. I will get the extra tubing somehow. And will let you know when it is plenty quiet at our place I know - one of my best qualities is I get giddy and silly when sleep deprived. Which is better than getting irritated and cranky I guess. Anyway, joking aside I really appreciate the tip. Who knows, lowering the noise factor even during daytime attempts with the nebulizer may help him be less resistant too. 

Also, that is good to know the correct class of medication we are using and that it is not a steroid - but also scary that his nurse told me with great authority that it was (in the duo neb). (Yikes!) I have great confidence in our hospice team and her about things like that so it is a little disconcerting. But I REALLY appreciate having that correction from you.  I like to trust but verify and after 7 months have been firmly in the trust camp for the most part -- considering them the medical experts. Though I will question some things (and refuse to do others, like no I am not giving him morphine hourly around the clock for asthma exacerbation...sorry --how about let's get his asthma meds straight).

But she got her point across to me that it could be harmful to the eyes and I definitely had my own face all in the mist for a week or 2. So it was partially right. But I don't like to be misinformed and if they think he has a steroid in his meds right now...and needs one...well... Hmm. Thank you again! I will look into this.

I really, really appreciate the caring and sharing of expertise on these boards. Otherwise I tell you, many of us would really be up a creek without a paddle more often than not. Thank you!

ButterflyWings

PlentyQuiet wrote:

I used to send home 20 foot tubing with parents who had to neb their babies. That way you keep the noisy machine in the hall. Not perfect, but better. Ask the homecare company for some, or even for 2 long tubings plus a connector to get the range needed.

Also the Duoneb does not have a steroid. It is Albuterol and Atrovent (Ipatropium). The Atrovent can cause issues if it gets in the eyes so still be careful, but there isn't a steroid so there is no issues about rinsing the mouth after. 

Good luck

PQ - Thank you! Huge help. I will get the extra tubing somehow. And will let you know when it is plenty quiet at our place  I know - one of my best qualities is I get giddy and silly when sleep deprived. Which is better than getting irritated and cranky I guess. Anyway, joking aside I really appreciate the tip. Who knows, lowering the noise factor even during daytime attempts with the nebulizer may help him be less resistant too.   

Also, that is good to know the correct class of medication we are using and that it is not a steroid - but also scary that his nurse told me with great authority that it was (in the duo neb). (Yikes!) I have great confidence in our hospice team and her about things like that so it is a little disconcerting. But I REALLY appreciate having that correction from you.  I like to trust but verify and after 7 months have been firmly in the trust camp for the most part -- considering them the medical experts. Though I will question some things (and refuse to do others, like no I am not giving him morphine hourly around the clock for asthma exacerbation...sorry --how about let's get his asthma meds straight). 

But she got her point across to me that it could be harmful to the eyes and I definitely had my own face all in the mist for a week or 2. So it was partially right. But I don't like to be misinformed and if they think he has a steroid in his meds right now...and needs one...well... Hmm. Thank you again! I will look into this. 

I really, really appreciate the caring and sharing of expertise on these boards. Otherwise I tell you, many of us would really be up a creek without a paddle more often than not. Thank you!