My mom has pneumonia - desperately seeking advice

December 29, 2012 5:56 PM

My 90-year old, very hardy but recently frail, mother now has pneumonia. Has anyone been through this, or something similar? Do you have any advice to offer about the whole thing - what to watch out for in her, what to say or do for her, how to deal with the hospital staff, how to handle my own emotional ups and downs as well as those of my sisters?

She has had chronic lung issues (bronchiectasis) for many years, but it has been under pretty good control the last half-dozen years or so with only occasional flare-ups. Other than that, she has had no serious medical problems. The past six months or so, she's been sick with flu-ish things several times. Each bout of it has left her a little bit weaker and frail. Less than a month ago, she started using a walker outside of her apartment.

Just a few days ago, her stools were dark and tarry. The blood is believed to have come from the upper GI area. Before the doctor treating her for it could really get a handle on that, she had breathing difficulties and one of her lungs collapsed. When the pulmonologist went in to clear the mucus, he had to put her on a respirator because her oxygenation dipped. She's in the ICU. Since the procedure, her blood gases have improved and they're starting to wean her off the respirator very slowly. Her blood pressure, which is normally low, has taken a few dips which makes them worried about sepsis.

posted by DrGail to health & fitness (10 answers total)

Well, my dad had one of these that he pulled through, much to everyone's astonishment but mine, and one that he didn't. If your mother has a nurse case manager assigned to her case, that person may be a good central source of information (I know not every hospital does that). ICU staff are incredible in my experience---Dad was in for six or seven days with his first crisis, and everyone was just amazing to us.

This is so hard. Please try to take care of yourself and of each other. It sounds like your mum has a good quality of life to return to, so my hope is that she'll come through this and recuperate all the way back to her baseline.

You'll be in my thoughts.
posted by Sidhedevil at 6:22 PM on December 29, 2012

For something to temporarily distract you and maybe help you feel like you're doing something, if you aren't already aware of it home pulse oximeters for measuring blood gas levels are now very affordable and widely available. I've seen really basic ones at Walmart for thirty bucks and as you spend more they get very sophisticated, feature-wise, with some able to connect to a computer and do long-term charting of the blood gas readings.

(So you could pick a pulse oximeter up somewhere and learn how to use it now, and then if you check on her regularly after she gets out of the hospital you could use it to check her blood oxygen level, which will probably start to go down if she starts to develop respiratory problems again. And you can teach her to use it so she can monitor herself. The respiratory technicians you'll probably run into as they're attending to her are usually happy to talk at length about all aspects of their work.)

I wish you guys luck, and my sympathies. I have a relative—much younger than your mother, actually—who has COPD and has been in the hospital a dozen times in the last few years for similar ailments, and each time she's back in the hospital the point when they're weaning her off the respirator is the most anxious part.
posted by XMLicious at 6:29 PM on December 29, 2012

Been through this with my mother-in-law in her last year. She recovered but was never really well or strong again and died less than a year later. Couple key things we found were to make sure she had really great nursing both in the hospital and in the nursing home afterwards - your mother won't get released directly home most likely but will end up in an extended care place for a while. The keys are good nutrition (bring her favorites if the food isn't good!) and even more importantly make sure she gets turned frequently and that the nursing care is very focused on avoiding bedsores. You may need to hire private duty nursing to address this -we did.

While my mother-in-law was at her sickest we took turns staying in the room with her, never leaving her alone. Both for her reassurance and to make sure that we were able to catch medical staff when they rounded - often extremely early in the morning. It helped when she was confused if one of us was in the room in the middle of the night. It's exhausting to care for someone in this situation - take care of yourself too since this could be a long haul.
posted by leslies at 6:46 PM on December 29, 2012

Does your mother have a healthcare proxy? Have you talked to her about her wishes for end of life care? I am NOT saying this because I think your mother is clearly dying, but she is quite elderly and in a life-threatening situation, so this is very important. Assuming she makes a recovery from this scary episode, make sure all these things are in place. The thing is, she's on the ventilator for a temporary issue right now, but because she's very elderly and and chronic lung disease, it can become hard to get her off the ventilator. Within a week they would likely be talking to you about whether to give her a tracheostomy, and you'll want to know what your answer is. It's much easier if your mother has chosen a HCP herself/filled out paperwork about her desires for her care herself, because it can help minimize conflict within the family.

Having a family member in the ICU is very hard. Be sure to get the rest you need and to take shifts with your family members. Find out when the ICU team makes rounds, and make sure that if you can't be there at any other time of the day, you're there for that. Find out whether it's an 'open' or 'closed' ICU - in an open ICU, patients are being cared for by different physician teams depending on who their primary care is, or what their problem is. In a closed unit, there is an ICU team who is the primary team for all patients in the unit and who writes all the orders and makes the plan of care with input from any needed consulting teams (like in your mother's case, GI would be one of them). Once you find out this information you will know who the primary team caring for your mother is and you can ensure that you are there for their rounds and that you schedule 'family meetings' with them as needed to discuss what's going on. Try to make sure family members are all there for any such meetings so everyone is on the same page and you don't have to relay messages. If you have to relay messages, take notes. Make a list of questions to ask for when you are meeting with the team.

Also one thing you should know is that after an episode like this, the recovery is usually tough especially on the elderly - they may need several days of recovery time for each day spent in the hospital bed. Usually they would go to a rehab facility for this. You would work out a plan for this with the social worker/case manager for your mother.

One other ICU specific thing I can think of - even though your mother has been doing relatively well until this admission, don't be surprised if they get her off the ventilator and she is confused or delirious. "Sundowning" is very common in elderly hospital patients who are out of their normal home situation, and ICU delirium is also very common for a lot of reasons. There are things you can do to help keep her more oriented - a clock in the room and a board with the date on it, verbal reminders that she is in the hospital and why, having a room with a window in it if you can. I hope some of this info is helpful and I wish a speedy recovery to your mom. Anyway, I've worked in ICUs before so if you have any other questions feel free to MeMail me. I know it can be frightening, disorienting, and extremely stressful.
posted by treehorn+bunny at 6:46 PM on December 29, 2012 [6 favorites]

Oh and I want to second leslies' excellent point - having a family member there during the night can be hugely helpful if she is confused. I wish more families would do this because the staff's options are pretty limited to giving sedating medications and physically restraining people, which are both things that can make them even more disoriented.
posted by treehorn+bunny at 6:48 PM on December 29, 2012 [1 favorite]

Yes, be ready for her to be confused--possibly very confused--due to the illness and the medications. As she recovers, this will decrease, but she may be very agitated and frightened for a while. If that happens, it's usually not helpful to argue about any weird ideas she may have; just reassure her and distract her with TV or something like that. Ask her questions about her childhood, as those memories should be clear. This will be very frightening, but it should pass. I've had a lot of experience with delirium and dementia with my father, so please feel free to memail me.
posted by WorkingMyWayHome at 7:08 PM on December 29, 2012

Oh yeah, that's another good point! You can start doing research on the nursing homes and other care facilities in your area. Medicare.gov has a searchable directory and rating system that we found really helpful.

And not just for looking into permanently moving her to long-term care: twice now my relative has done a stint of a few weeks in a skilled nursing facility for intensive physical therapy and occupational therapy and those have been more helpful in improving her health than probably anything else. But we really had to advocate for her with the hospital staff to get those (not to mention argue with her a bit because she just wanted to go home) so be aggressive in getting the doctors to think about and explain what options are available and take notes so that you can go over it all with her when she's thinking more clearly.

Once she's well enough to move out of the ICU into a normal ward or be discharged from the hospital entirely (and my fingers are crossed hoping that happens for y'all and happens quickly!) it can be like a game of hot potato and the system and staff re-focus on the next patients to come in the door, so it's worthwhile to take advantage of their attention and advice to the greatest degree possible.
posted by XMLicious at 7:08 PM on December 29, 2012

Oh, and I second the advice to have someone there all the time if you can. When my father was agitated after a knee replacement, the hospitalist gave him Haldol, which made him worse; we stayed with him to keep him calm and coax him to eat (eating is often a problem; you might confer with your family about her favorite foods so that you can bring them in once she's able to eat). The nurses thanked us for the help many times. It really helps if you know the staff and they know you, so they know who to talk to; my experience has been that they don't always give you updates unless you're there and they see you. Make sure they have a couple of cell phone numbers they can call.

I wish I had some advice on the emotional side of it for you. It's really hard and scary, and the only advice I have is to try to rest, try to eat right, and try to find someone to confide in so that you don't have to keep it all inside. Again, please memail me if you'd like to talk.
posted by WorkingMyWayHome at 7:24 PM on December 29, 2012

I'm sorry to hear about what your mother and you are going through. It's hard enough to see someone you love become ill, harder still to see them lose their strength and will as they become older and more frail.

I am, at different times, a medical director of a group of physicians, a hospitalist, a son of a critically ill father, and an atheist who somehow finds himself spending a lot of time in churches. I'll try to keep this succinct.

My first piece of advice would be to try to take care of yourself. You're her primary advocate, know her infinitely better than anyone else in the hospital, and are a most sensitive detector of clinical abnormality. You must eat, sleep, and take time off for yourself, if only for a few minutes, though I know it can seem impossible to step away from the bedside or out of the room, or even out of the hospital itself. But as your mother's daughter, you are the last person on the planet who should be getting sick.

By detector of clinical abnormality, I mean that you know when things seem awry, or changed, for better or worse. Or if she's not acting like herself, or in pain or distress even when all the studies and labs in the world are normal. As such, staff should (should, I say, because not all staff or physicians are learned enough to realize what valuable insights you have on their patient, your mother) be engaging you regularly on how you think she's doing. And you should be reporting your observations as well.

This can be difficult these days, with races of all sorts: administrative efforts to move patients from ward to ward, or ward to out of the hospital, or ED to ward. Time is valuable, not just in the literal and financial sense, but in that there are only windows of opportunity to interact with care providers, at ease. If you haven't already, try to set up a regular time or appointment to meet up with the intensivist, or hospitalist, to get an update and to give an update, realizing that any actual set time must be flexible for emergent issues. Be understanding, but persistent.

Keep a notebook and a pen handy. Take notes if you'd like, but definitely write down questions you'd like to ask. It is difficult to remember them off the top of one's head. You can even mark questions in order of priority to you, or have a section in your notebook for "draft" questions, where you can freely write your thoughts down which might be able to be distilled into a single question or two. Move those questions to the "non-draft" section.

Realize that, while there's a lot we do know about in medicine, and while that we have protocols for this and that, there are a lot of questions we have no answers for. That labs are numbers and plus/minus signs and nothing more-- which isn't to say that they're unimportant, but that the focus should be on how your mother looks overall. Her "clinical appearance." If one measure of her blood count drops by 0.2 on one day, then up 0.3 the next, but she looks worse, the weight should be on the worsening.

I'll try to answer your questions here:
- What to watch out for in her: well, anything. And everything. How is she feeling? Is she more or less sleepy or anxious, or distressed? Does she look like she's breathing harder? Is she coughing more, and if she is, is she coughing anything up? Is she getting perkier, or showing elements of her personality more brightly? eg: my pop's a stubborn ass. When he's being a stubborn ass, I view it as a sign of improvement.
- You could choose to focus on numbers: her SpO2 (level of oxygen in blood), her heart rate, her respiratory rate, her blood pressure-- you could stare at that monitor for hours and see changes in patterns and numbers that might represent something normal, better, or worse. This takes away a bit of attention from your mother, and the things could say or do for her.
- What could you say or do for her? Just being there is a lot. Also: not being there is a lot. Everyone needs rest, and patients, however sick, are poked and prodded for labs and tests through the evening and morning and afternoon. They worry, too, and even when they're so sick that they're unable to communicate, I believe they worry: that they hear familiar voices, and worry for them.
- So what could you say or do for her? Ask questions. Basic ones, to see how's she's responding and communicating (nods? hand gestures?). Tell her about what you've been up to, or what the people in her world are up to. Ask her if she'd like some rest and time by herself, or if it's ok for you to go out to get dinner: let her make some decisions, if she can. As a mother, let her make decisions for you. Tell her when you'll be back (soon). Tell her you can pick something up for her (I'll fly to NY and get that fancy salad you like at that one place, ha ha). Tell her you love her. Very much.
- What else could you do for her? Bring in a small radio, tuned to something she'd enjoy listening to. Not too loudly: everything sounds loud in the hospital. Ask staff if it's ok to massage her arms and legs, where you'll feel how much strength she's lost already, and her muscles, and sinew, and bone, and know that you're not simply helping with blood flow, but that you're also providing touches, from her daughter, and not the colder contacts of clinical assessment and care.
- When she gets stronger, and out of the ICU, ask the physician if it's ok to bring specific foods x or y in for her to eat, from outside the hospital (there may be dietary restrictions in place for various reasons). Then do it. And, perhaps, pick something up for the staff, who are undoubtedly overworked and understaffed. It's not a bribe. It's a token of appreciation.
- How to handle the emotional ups and downs of this unfortunate situation? This is much more difficult to answer. It's unavoidable. You can, perhaps, take some solace in that it's unavoidable. That despite everyone doing their best, including yourself and your sisters, your mother's health may wax and wane day-to-day, or even minute-to-minute. Ups and downs are inevitable, and you can choose to try to float above it all, looking at how's she's been doing from time T to time T+x. Wholly, how has she been doing? How does what she looks like now correlate? What are your hopes and goals and expectations? And what questions might you have that would relate to progressing towards those goals (write them down!).
- Realize that the ups and downs are normal. They may be maddening and frustrating and terrible, and I don't mean to belittle them by saying that they're normal. Rather, find strength in their normality. Seek out friends or family, or staff at the hospital who have experience with similar circumstances. Consider seeking out the chaplain, even if you're not religiously congruent: he or she may be surprisingly supportive.

Understand, that in medicine, there's always the weigh of risk vs benefit, for any treatment, medication, procedure, or test. Similarly, there's a balance between what can be done to fix problems and cure disease, and preventing pain and easing suffering. Many times that balance swings evenly between the two. Sometimes it swings strongly in one direction over another. And then it might be time to consider what you think she would want to do, should she ever be in the position of being unable make decisions for herself.

Modern medicine has so much to offer. Sometimes the best we have isn't enough when it comes to fixing probems or curing disease. In such cases, medicine still has something to offer-- when it can't fortify quantity of life, it can still do very much to support quality of life, with palliative care and hospice services. If nothing else, they're people you can talk to, and learn about what services and options they can provide.

And do talk. With your friends and family. About everything about your mother: not just the terrible nonsense of her being critically ill. Talk about her, so that the staff at the hospital learn about her as a person and get to know her through you, so that they may address her as a person and not merely a patient.


My hope is that any bleeding will stop. That any infections are treated. And that she's able to be weaned off the ventilator and breathe on her own, demonstrate stability, and be moved out of the ICU. I hope that this happens, so that she can be assessed by physical and occupational therapy, find her strength back either at home, or a skilled nursing facility, and that she'll recoup and be able to go back home and enjoy everything the hospital is not. Even knowing that this process is itself long in terms of time, it is my best hope.

Always be hopeful. Always remember the realistic possibilities. Never give up loving her. And so take care of yourself, so that you may take care of her as much as you want to, as best as you can do.
posted by herrdoktor at 8:57 PM on December 29, 2012 [12 favorites]

Talk to a hospital social worker and get some help talking to your Mom about the health care proxy, and about her wishes. She sounds strong, and likely to pull through this event, but she is getting weaker, and she may not want to go through another ICU visit like this. Or, she may.

If there are any special treats you can bring in that would be meaningful, like her favorite lotion, or a _tiny_ amount of a scent she loves, or music. My Mom had a cd of favorite songs from WWII that she really loved, and it cheered her up to hear it.

Don't be shy. Tell her, "Good morning Mom, it's Gail. You're in the ICU at N Hospital, and you're getting great care. I love you, and I'll be right here." "Hi Mom, looks like you had a nice nap. It's me, Gail, here at N Hospital. I've been working on some knitting while you slept." Hold her hand, hug her as well as you can, stroke her arm, etc. Touch is important. She may not get all of what you say, but if you are low-key and calm, she'll get that, and your familiar voice will be a comfort, and something she can use to get/stay centered. When medical staff come in, ask what they're doing, and tell her. "Mom, this is Nurse Q; she's going to help you with your breathing" and "Mom, this is Jamie; she's an orderly, and she's giving you a washup." If you observe things that will make her more comfortable, like a pre-warmed blanket, or a fresh pillowcase, request those things.

Figure out who is coordinating her care; in a large hospital, it's not always obvious, but you and the rest of the family need to have a good understanding of what's going on. It's helpful to have 1 family member that the health care providers can use as the central contact.

One of these visits will be her last. I am forever grateful that my brother gave me a heart:heart talk in the hospital, even before we knew how really gad it was. Say every loving thing you've ever thought of saying, and, when she gets better, she may not remember, so say them again.

Take care of yourself with good nutrition, not relying on too much coffee/sugar, and getting outdoors for fresh air & a walk. It's quite intense to be with a sick family member in the ICU. You may find it helpful to keep a journal, meditate, pray, work, etc. There's a probably a chapel, and while I'm not religious, it's a calm, quiet space for meditation or prayer. The health care providers are there to do a job, but the hospital likely has support services for families, though you'll probably have to ask.

If you're there at night, and there's a birthing floor, go look at new babies.
posted by theora55 at 10:12 AM on December 30, 2012