Is repeated aspiration pneumonia common?

TrumpetSwan

My mothers MC facility called me a couple days ago saying they wanted to send her to ER because she had a persistent cough that was not getting better by her standard nebulizer. She has COPD. My dad passed away last year and most of mom's friends have died. She only has my sister (who has POA) and me. My sister spends two weeks a month in a second home she has in the southern part of the country during the cold seasons. So, right now mom only has me around.

This is the second time in the last four months mom was hospitalized with pneumonia. My first question is, is repeated pneumonia common? If so, how long can she keep cycling with this?

I visited her to check that she was OK, and she seems to be improving. She is however very confused. She has limited mobility too, so I talked to the nurses about getting her out of bed, and we have moved mom out of her room and to a "dayroom" down the hall where she can have company with others for a few hours before returning to her room. She seems content.

My second question is, the case manager asked me about physical therapy when mom gets released. I said I supported it, but told her she should confirm with the daughter with POA. She later told me that the POA daughter denied PT because mom usually refuses to participate. Is it common for a POA to refuse PT after a hospital visit? It seems to me that it should at least be attempted since mom's mobility will likely be impacted during another hospital stay. Even if PT is occupational and someone visits mom in her MC unit, I was just a bit stunned that my sister refused to accept anything for her mother.

Thank you.

sandwichone123

Physical therapy requires cooperation and memory, two characteristics often in short supply among pwd. Requiring PT doesn't really help anyone, makes quality of life worse, and wastes limited resources that someone else could benefit from.

TrumpetSwan

I worry about the repeat aspiration pneumonia and how many times she can overcome it. It seems obvious to me that her ability to chew and swallow are getting worse.

As for the PT, I dislike the thought that she has been in bed for several days then will be released with no attempt to ensure she can at least reach for a cup of water or brush her teeth on her own. At least an attempt to engage her in the activity she was able to do before did not seem unreasonable to me. I would not think in-house rehab would be appropriate, but standing, reaching, etc., sort of just seemed good to at least try to support her with after she is released. Otherwise, it sort of seems like we are facilitating her downward mobility more quickly.

Jgirl57

Your mother has a terminal disease and there is no re-hab for this . Pneumonia is common and at some point families bring dementia hospice or palliative care on board and decide to no longer go to ER and allow Hospice nurse to coordinate care. ( hospice for dementia is a bit different than other hospice contracts) Therapies will not help and general social interaction at the hospital or MC that she can tolerate is probably the best you can hope for .As the DPOA for my DH (Who just completed PT) , I will never approve this again. Talk to your sister to make sure you are both on the same page as this disease progresses. It’s probably time for a serious conversation. You have been a great advocate for your mom. Have you and your sister read the book 36 hour day ? Hugs to you…

SDianeL

so sorry you are at this point. Please ask for a hospice evaluation due to swallowing issues. Don’t delay. Yes, the aspiration pneumonia will continue to happen. It’s because they can no longer swallow. If the facility has a speech therapist they can explain it to you. When my husband was at this point, I made the heart wrenching decision not to transport him to the ER after discussing it with the head nurse at the facility. I regret not calling hospice sooner although the facility implemented hospice protocols immediately without hospice being called. During my husband’s time in Memory Care, PT and OT was not effective for him because he didn’t understand the instructions and he also refused to participate. The therapist cancelled after the 2nd try. I agree with your sister.

towhee

Yes, repeated aspiration leading to pneumonia is common in the later stages of dementia. There are some minor modifications you can make in seating position while eating and dietary changes (textures, pureed foods, thickening liquids), but these will only offer short term minor help, they will not stop the problem or the progress of the disease. These modifications need to be tailored to the individual, usually by an evaluation done by an occupational and speech therapist. I agree that PT would not be helpful, and you would also not expect your mother to be able to comply with any instructions given by OT and ST. Their input would go toward revising your mothers plan of care at the facility. What facilities can offer varies, it might be that this facility does not have the ability to make dietary changes.

You do not know what the case manager offered to your sister, or how well they explained the benefits. There is nothing wrong with expressing your concern to the case manager about coordinating care with the facility upon discharge. However, please be careful not to harm your working relationship with the facility. By being able to visit your mom, you have helped greatly in her care.

harshedbuzz

@TrumpetSwan said:

This is the second time in the last four months mom was hospitalized with pneumonia. My first question is, is repeated pneumonia common? If so, how long can she keep cycling with this?

I am so sorry you are dealing with this situation, not just your mom's dementia but not having a say in her care decisions. That is difficult. I have been through the aspiration and COPD issue with both parents and it's not easy.

Repeated pneumonia is very common for a couple of reasons. Firstly, as the brain damage from pneumonia progresses it impacts the mechanics of swallowing. That, along with common late-stage behaviors like chipmunking food and spending more time reclining create a perfect storm.

Safe feeding, an SLP can advise on this, can lower risk somewhat but a PWD in the late stages can aspirate their own saliva. We didn't thicken liquids/mechanically process solids but the MC made sure dad was upright when eating and drinking, they banned mixed texture foods like cereal & milk, chunky soups and straws. These are risky because the liquids can travel past a sluggish epiglottis before it can close to protect the airway. That said, a PWD can also aspirate their own saliva and certain medications can lead to reflux which can be a contributing factor. (Just putting this out there— mom had 5 hospitalizations around aspiration last fall/winter which were the result of aspiration caused by Fosamax)

Secondly, the combination of scar tissue from previous pneumonias and COPD do seem to make avoiding pneumonia as a complication of other URIs.

I visited her to check that she was OK, and she seems to be improving. She is however very confused. She has limited mobility too, so I talked to the nurses about getting her out of bed, and we have moved mom out of her room and to a "dayroom" down the hall where she can have company with others for a few hours before returning to her room. She seems content.

Content is great. The increased confusion could be a result of the recent hospitalization; it may take a week or two to improve to her new baseline. I would check her O2 as well. If her oxygen is low, it could be contributing to her dementia symptoms. My mom doesn't have dementia, but if her O2 drops below 85 she goes off the rails cognitively— confusion, poor memory and executive function really tank. She even conflates stories about people.

My second question is, the case manager asked me about physical therapy when mom gets released. I said I supported it, but told her she should confirm with the daughter with POA. She later told me that the POA daughter denied PT because mom usually refuses to participate. Is it common for a POA to refuse PT after a hospital visit? It seems to me that it should at least be attempted since mom's mobility will likely be impacted during another hospital stay. Even if PT is occupational and someone visits mom in her MC unit, I was just a bit stunned that my sister refused to accept anything for her mother.

I'm a strong proponent of PT but my experience with PT with dad in the middle stages of dementia was that it was pointless. A PT will assign "homework" between visits and unless someone is able to coerce her into doing them properly and she is able to meet her benchmarks, she will be dismissed from the service quickly.

Aspiration pneumonia is a very common cause of death for PWD. My dad died from complications the first time he developed aspiration pneumonia. While we weren't expecting his passing so soon, I will say that he died peacefully in his sleep.

HB

TrumpetSwan

Thanks everyone. I just find this heartbreaking. I did not know we were at the aspiration pneumonia part. I read about it, but, just ugh.

It is Thanksgiving and mom is in the hospital, alone.

My sister may be going the route of not treating her for this. We do not speak and have been estranged for years.

While visiting my mom, she asked me if she would ever be able to breathe well again. I told her "of course". The nurse told me mom keeps telling her to please not let her die there. One nurse told me my mom asked her to hold her hand. So, while I was there I made sure to hold mom's hand.

When I see my mom, I will give her instructions that she follows easily. I tell her to sit up, take a few steps, reach for the cup of water, etc., and she will. It is heartbreaking to me that no one will arrange anything for my mother in regard to OT. I feel like this will hasten her spiral and make a bad thing worse.

Just one big sigh.

​fesk

As I think mentioned above, I would recommend a speech therapist to do a swallow evaluation for your mother. They will advise changes to diet and how she is eating to hopefully avoid aspirating again. I don't know what stage your mother is at, so I cannot comment on repeated aspiration. However, my mother aspirated once and we successfully have avoided it again. We did not have to thicken or puree food. We had to make sure the food was the proper size , she was taking one bite at a time, and that she was eating slowly. Also, we needed to make sure she was not being fed when she was sleepy That was actually the reason she aspirated in the first place. There will probably come a time when the eating ability diminishes, aspiration becomes a bigger issue and more changes will need to be made, but we are not there yet and it has been years from that first aspiration.

Also, I would encourage PT or OT. Movement is actually very important when someone is sick to help avoid bigger issues. My mother is in the advanced stages and continues to do what exercise she can - range of motion exercises, standing, etc. Yes, it has diminished over the years, but we adjust and continue to avoid bigger issues. Can she follow elaborate instructions? No. Can she follow simple instructions and do functional exercise (standing, walking, etc.)? Yes. I recommended trying.

MN Chickadee

I totally understand how badly you want to fix anything you can for your mother. But the reality is that PT and OT are often a waste of time and resources in these situations. PT is not going to change the trajectory, she will continue to have swallowing problems and aspirate because of her deteriorating brain. It sounds like you and your sister do not get along so it is understandable you would be suspicious of her decision making, but from what you have shared it is a valid viewpoint. We did some PT and OT for my mom in stage 5 after a fall, long before she was getting to swallowing problems, and it had very limited effect even then. Often this disease is a freight train that has left the station and try as we might there is very little to offer. Personally I would bring in hospice now. They will focus on making the most of mom's remaining days and can help with the anxiety and fear she is feeling. There is much to be said for the idea that once a PWD gets to this stage the kindest thing to do is make them as comfortable as possible and don't do anything to prolong it. Often prolonging it comes at great expense, both resources and your emotional capital, only to have the same outcome after putting you and the PWD through undue hardship. I understand how hard this is. I felt helpless, even as the POA decision maker. The beginning of the end can come suddenly and unexpectedly. You think you have all this time left with them and one day it becomes clear that is not the case and you aren't ready and you grasp at straws because facing it head on is so damn scary and sad and unfair. At least that's how it felt for me. Do keep us posted and take it one day at a time. This is hard.