I think this is the beginning of the end.

Oh Barb. Glad you are on the same page as your bro. That helps. At her age and stage, as you know, anything can happen. Comfort care is just that. Mother is on comfort care when and I heard about her being in pain from sitting in one position too long I was not happy. She has vascular dementia too and no ability to shift herself around for comfort. Even when she is in bed she is uncomfortable, though not in pain. I told them to give her more painkillers if necessary. The other thing is to let her stay in bed more. I know it is good for them to be up, but not if they are in pain, The concept of comfort care is pretty simple, I thought. Like your mother, it is all that can be done for her.

Hope the nebulizer treatment helps your mum.

Barb, if she has pneumonia, will she be treated for that?

Sounds like this is another one of "those kind" of weeks for you and your family. I hope you're each finding a way to relax at night to keep some level of balance in your life.

Are the trees turning color yet in your area? There are perhaps half a dozen or so here, and they provide such a bright and vivid splash of color.

Barbara, thinking of you and mom.

My goodness Barb, two black eyes ?

Will nH also use suction to clear some of the mucus? Oxygen, the inhaler, mucinex and suctioning helped my mom recently when she was discharged from a short hospital stay and was having trouble breathing

Hope she, you and family can get some rest

Barb - How is your mum this morning and how are you?

Still not getting out of bed, is taking ice cream when offered, eyes mostly closed but smiled hugely when told a funny story about one of the Ggkids.

Interestingly, in listening to old messages from, brother, there is one from last Friday that I never got the info from. Mom's o2 sat had dropped into 80s, she wasnt eating, they were going to do a metabolic panel to see if anything was going on. I saw her on Monday8.14 and she was happy to see go baby, but tired. She fell later that week.

I think we are seeing a slow downward slope.

If she gets pneumonia, will we treat it. Good question. I don't know.

What do you all Think? I'm terrified of either the chf, gasping for breath, and I really want to not get to the point where she's incontinent of bowel. My mother has a lifelong horror of all things fecal. Long story.

Tell me what you think about pneumonia, please!

Barb - (((((((hugs))))) It certainly looks like your mother is declining. Mother is on comfort care and they said they would treat any infection with antibiotics. I am good with that. There does come a point, with decline, that the body's immune system is so compromised that even antibiotics do not help.

You may want to refer to this question on AC to which you gave the first answer - https://www.agingcare.com/questions/treat-infections-on-comfort-care-197298.htm

This article discusses the pros and cons -
"Antibiotics may carry more cost than benefit for patients at end of life
By Kathy Holliman" (ACP Hospitalist)

Antibiotics can provide symptom relief (as well as having curative value) which would come under comfort care. However, they can also prolong a life with lesser quality. It is a hard decision.

Each case is individual and sometimes there are no good answers, just better or worse ones, but you may need a crystal ball to know which is which.  I know whatever decisions are made for your mum's care will be made with deep consideration and knowledge of her and the various factors, and with much love.

H Barb
Such difficult decisions

Pneumonia is often what takes them but then your mom has had it before too

I'm not sure what decision I will make if faced the same, as mom's memory care cannot administer IV antibiotics - it wasn't easy to get through the 10 days of oral she just finished

Barb, my dad was bedridden and had pneumonia twice. The first one, he had problem breathing and it was very, very painful for him to try to inhale. Definitely, if your mom is in pain - I say do the treatment for her comfort.... My dad's 2nd bout with pneumonia, he did Not get the painful-to-breathe symptoms. Instead, left untreated, it went septic. The infection spread out from his lung. That morning before I called 911, he was sitting up and aware. By the time I got home at 6:30pm, he was unconscious, high fever and vitals signs failing (not that I knew this - only after it all happened.) The sepsis was causing his organs to fail.

Throughout dad's stay in the ER Trauma, they aggressively sought medical treatments. It was very difficult for us to just stand by and watch this. Dad was tired. His body was failing. And the medical doctors were doing their best to get him better - despite his history of aversion to seek medical help.

I was torn emotionally - should I do it? Should I not? Should I? Or not? And every single time I had doubts, I would ask myself, "What would dad want?" vs. "In reality, what would Dad really DO?" ... Yes, dad would want to live (afraid of death). In reality, he would never ever faithfully do the dialysis... And in the end, I had to keep convincing all his different doctors, surgeon, internists, etc.. that in the end - Dad would NOT do dialysis if he survived and was released from the hospital. In the end, the doctors acknowledged this. They discussed it and then presented it to us as a family that based on dad's current condition and his past history of Not seeking medical help, they recommend taking him off life support. We agreed.

I KNOW what you're going through inside, the indecision of what's good for mom vs what is the right thing to do. All I can say is - do what is Best for mom and for Her Comfort. (Unlike my niece who wanted to go all out for grandpa. With lots of questions from me, I realized she wanted grandpa to be alive For The Family. NOT for him!) If treating the pneumonia means alleviating any pain/discomfort your mom's experiencing - so be it - do the treatment. Go with what's happening with your mom now and always discuss this as a family (so that no one does the blame game after it's all said and done.) {{{{{ HUGS }}}}}

BArb, this sounds like the final weeks. What is happening with your Mom sounds a great deal like what happened with mine..except mine was home in my care the whole time.

Now you and family must find the strength to accept the end and help your Mom with that strength. I know only too well what this will cost you emotionally.....be sure that you are not alone, have a shoulder to lean on.

After all these years, you might think this will not be any harder than what you have already come through....but, all this history really doesn't prepare us.

Hugs to you!

I don't know Katie, we've come right up to line a couple of times and mom bounces back.

About treating pneumonia. Had some time to think about that. We won't send her to the hospital ( Heck, i wouldn't have sent her to the hospital after this fall, would have asked them to x-ray wrists with portable and ordered splints in house. Going to the hospital via ambulance is a big part of the trauma now). The last bout of pneumonia took two rounds of antibiotics to cure, one via IV. But she recovered.

Barb, I'm sure you know a lot more about pneumonia than I do, but I've read that it used to be called the old peoples friend. Do you feel your mom has enough quality of life left to make it worth fighting for?

I am with you on not sending her to the hospital. I want to avoid that for mother too. It is too traumatic. If antibiotics make her more comfortable, I am for them - on that basis - as part of comfort care.

Let us know how she is.

Barb, I've only seen gasping for breath when associated with oxygen deprivation, or the oxygen hasn't been turned on, or isn't getting through, or there's been exertion and the lungs haven't yet caught up. This has been other than in cancer situations though. So I don't have the experiences to be really unsettled by this, but it doesn't frighten me as I've had anaphylactic type reactions from food additives.

As to pneumonia, in my experience the presentation has been one of coughing, lots of congestion, weakness, debilitation and general decline. We go through pneumonia generally a few times per year. The last two times have included sepsis, which scared me as I had always thought of it as being fast moving and frequently terminal, especially with older people and co-morbidities.

It was also complicated because a donkey's posterior of an internist and a similar anatomical resident were obnoxiously abrupt, rude, and totally unprofessional in advising my father that he shouldn't consider resuscitation in the event of cardiac failure, and further they would be cracking his chest in order to do that. In their infinite wisdom, they both advised that he had already "lived long enough," "is 98" and had a good life (how they perceived that I don't know).

I tried to replace them but they refused and challenged my efforts. I still plan to write a complaint letter to the hospital; they were both totally unprofessional.

I raise the issue b/c of the attitude by some physicians that it's just time to let go - don't expect them to want to do CPR on a 98 (almost 99) year old person. So we didn't get the treatment we would have with a younger person. And that's a consideration when deciding how to proceed.

I've been thinking about pneumonia and if there's anything I could share in terms of your mother, and I guess I'd have to say it would depend if it's in both lung lobes, how much oxygen has to be turned up to stabilize her breathing (8 liters is as far as we've gone and that's kind of "freaked me out"), whether or not the pneumonia and/or sepsis can be resolved, and whether or not oxygen weaning will be present in post-pneumonia recovery.

I wonder if the next bout will be severe enough to require 10 liter flows of oxygen, and what the prognosis would be at that time.

The weaning is I think critical, because being on 6 or 8 liters of oxygen significantly compromises mobility. That mobility compromise drastically changes one's daily outlook.


When on an 8 litre flow rate at home, and going out for doctor or other trips, the little portable concentrators can't be used b/c they don't have the capacity for liter flow that high. E-tanks have to be used; they're more klutzy. And even then, I've been advised by the DME supplier that an E-tank which normally lasts 6 hours will only last about 2 (I don't remember specifically) hours. I began taking 2 tanks, one primary, one for switching in the event of longer trip duration, and one as backup in case one of the others failed.

I had to create a special carrying area, braced and cushioned (even though the tanks aren't delicate) for the tanks in the trunk of my car. Add the rollator, extra cannulas in case one or more failed, and the back seat of my car filled up as well. I could see hunkering down at home becoming a pattern. So did my father.

Plus hauling the equipment aggravated a back injury. This changed my outlook on trips, even short ones, and I really began to dread them.

This also changes travel, movement, flexibility and freedom issues. You need 2 E tanks just to go to a doctor's office, one as backup in case something happens to the first (which it did to me). Everything becomes so complex on a higher level, especially if oxygen weaning isn't part of the rehab protocol.

At that point, frustration really sets in, and just the basics of breathing become more complex.

I think that would be a time to evaluate options. Lessening value to life can come from co-morbidities, and disasters like cancer, but it can also come from complex challenges just to getting through a day without dragging tubes around, tripping over them and worrying about falling, running out of oxygen if the car breaks down or is in an accident, and more.

I could see how it changed my father's and my outlook. And it wasn't at all positive.

You Barb, will do what is best for your Mom.
I am for comfort care at end of life.
Sorry that she is declining, and these hard decisions fall to you.

Thanks for all your input. Just got an email from SIL; mom has now been in bed since she returned from the hospital on Wednesday night; eyes closed. Smiles when told a funny story.

I'll be up there tomorrow to see what there is to see.

Yes, I've heard pneumonia called "the old people's friend".

These decisions don't fall on me entirely; my two brothers and I make these decisions jointly. Thanks for all of your support!

This is the complication. I know what mom explicitly told me when I was growing up, and later as an adult, about keeping folks with compromised minds and multiple medical conditions live with feeding tubes, breathing tubes, pacemakers and other measures. She taught me the phrase "pneumonia is the old person's friend"--her mother died of gangrene--we were PRAYING for her to get pneumonia, believe me.

If I were managing this alone, I would have turned down the pacemaker two years ago. My mother, in her early old age, would have been horrified to be kept alive in this condition. But I don't make these decisions myself.

And my brother is certainly correct; at the time that mom's heart started to fail, she was able to express her opinion and it was "yes, I want the pacemaker".

This time, I don't think she's got the capacity to chose one way of the other and we ARE going to have to make the call about what to treat.

Thanks for listening to my ramblings. It really helps to write this stuff out.

Anytime day or night, Barb

You have friends in all time zones here

Let us know how mom is after your visit tomorrow

Hugs

I'm going to practise magical thinking and bring a dress :)

I think it'll be a bit easier to assess the situation when you visit tomorrow, and speak with the staff.

I'll be thinking about you and hoping that the visit brings some sense of resolution, or movement to it, for you and your family.

Such a difficult time. Big (((((((hugs))))))

Peace and love to you and your family.

Barb,
I will start praying for God's will for your Mom, and that there will be no more suffering, no more pain, and no more tears, dear one.

Barb, how was the visit yesterday? Your family have been in my thoughts.

Oy. Mom has pneumonia. They are starting her on Levaquin and will set up a saline drip to try to protect her kidneys.

She looks totally miserable, but is still able to eat lemon ice and take drips of juice.

Talked to my brother earlier, glad I did. He was thinking that mom would be more comfortable in the hospital (???????)

We talked it through and he thinks that letting her be is a good thing. He said, " you know, if SIL were involved in this discussion, she'd be arguing for the hospital " ( i know, I know. He also told me that the smiles that they've been reporting to me are a figment of SIL'S imagination.

Just oy. Well see what happens. Mom has fought through several falls, pneumonia. What happens depends on her will to pull through this.

((((Barb)))) I know we can't help, but I wanted to send a big hug to you.

Thanks for the update, Barb. My heart goes out to you. it is a difficult time. I am glad your bro came around to not sending her to hospital. The feedback about the smiles was good to have. No matter how prepared we think we are for a situation like this, we never are ready for it. The Levaquin will keep her more comfortable and her will and body will decide if she can go on. I am sorry she looks miserable. (((((((hugs)))))))

Barb, thanks for the update. Sounds like it's kind of a wait and see situation at this time.

Make sure you get plenty of downtime for yourself although I know that's hard to do in a situation like this.

Thanks for all your thoughts and prayers. They are keeping me buoyed. It's a 90 minute drive each way and fortunately I have a wonderful audiobook from the library to distract me; it's called The Fortunate Ones, author's last name is Umansky.

Oh crap, Barb

Hope the drive home wasn't too exhausting