The other day, after posting a "rant", I realized that I need a place to write down what is going on. So I'm going to start here. I'm not asking for advice, but all is welcome, without push back.
My mom is 91. She's had a good long life. Had a stroke in June 2013. Was in acute rehab for 2 weeks, then sub acute for 4 more weeks. She developed vascular dementia, i.e., she knows us all, knows the day, date, etc, but thinks that there is a union trying to take over the facility she's in, that there are floods all the time and that the Communists are about to take over (she watches a lot of Fox News.....). We tried her in a lovely AL facility, but she was paranoid and couldn't remember to push the button when she needed help; she fell and we moved her to memory care. She didn't do well there and we added a full time aide. She fell THERE (with two aides in the room!) and ended up with a broken hip. Anyway, post surgery for that (September 2013) we admitted her to a lovely NH. She's done really well there, gained weight, become very mobile with a walker. Great therapists (PT is a sadist, but I think they all are, she's pushed my mom to do stuff none of us would have expected!). Mom was in the hospital for pneumonia in Januray, recovered well and was back up and walking in a few weeks. Fell in June; discovered in hospital that her heart rate was quite low; we ended up doing a pacemaker. Back on her feet in a few weeks. Mom started feeling out of breath in NH a week or so after pacemaker placement. NH dxed pneumonia. Several rounds of antibiotics; chest xrays, etc. We made an appointment to see a pulmonologist, because mom has had pleural effusions in the past. Before appointment happened, she fell in NH, ER via ambulance; blood tests were all out of whack. Long story short, they tapped her chest and the little pocket of bacteria in the bottom of her lung blossomed and sent her into sepsis. She made it through that, is back in NH, after 5 days of being bedbound. No fractures, but she's still in pain. On tramadol. Talked to her this afternoon after second PT session. She said "I'm not in pain, but my legs don't work". Okay, NOT in pain is huge. At least they've got pain meds on a schedule and not PRN, because if you ask her if she's in pain, she says "no". But then she is if she moves.
My POA brother is in Europe for ten days; younger brother is supposed to get back from vacation this evening. Hey, I'm not a hands on caregiver by any stretch, but I'm trying to take care of my mom the best I can. Trying to figure out the next steps. She's got CHF, doesn't seem to be progressing anywhere! Dementia is not of the 'mean" kind, she's just confused about the facts most of the time (asked me the other day if youngest brother had 3 or 4 kids, she was concerned that she couldn't recall 4th kid). NH says not time for Hospice. Hospital says that we are not at palliative care point yet.
Frankly, if this were one of my dogs or cats, I would have put them out of their misery this week. There. I really needed to say that. I don't think that there is any redemption in physical suffering
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!
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 }}}}}
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
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.
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!
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
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.
Hope the nebulizer treatment helps your mum.
Being the troubleshooter with the NH is enough to send one screaming into the night!
Take care of yourself.
Hey, I'm not a hands on caregiver. My mom is getting decent care in a NH. She's docile and only occasionally agitated. She saw her third greatgrandbaby for the first time on Monday!
She's 94 and has had a good and long life. I don't want to subject her to any more poking and twisting than we have to.
I was following this thread when you were Babalou but lost track of this thread. I had no idea your journey is so challenging and ongoing. I found it after you mentioned it on the Whine Thread.
I just don't know what to say...
I hope you and your Mom find peace soon.
Those words just don't seem to cover it. I just don't what else to say.
SIL upset at mom's facial bruising, discharge from two black eyes. Wants an xray of mom's face. Said mom does seem to want to talk or think.
(INSERT SILENT SCREAM HERE).
Okay, so if we do an xray of her face and there is a broken bone, are we going to rush her into surgery? (no).
Why should mom talk or think? She's got Vascular dementia and aphasia. She's not in pain.
Why do I keep having thus conversation?
Went up to see her yesterday. Naturally, this was the two days that I'd arranged to have a rare overnight with my 5 yo grandson, but I took him with me and We stopped in twice.
Mom was out both times. Doesn't look like she's in pain.
Talked to NH doc today who confirmed that we don't need to do followup with an ortho (the ER said to my brother " of course you'll followup with an orthopedist". Yeah, right.
Doctor is concerned because she is getting congested from being in bed so PT will attempt to get her up today.
Doctor (NH director, who is lovely) emphasized that the aim is comfort.
Thanks for listening. Dating this 8/2017
Thinking of you BB
I explained that we all are trying to be team players here and are trying to provide useful information to the facility to further mom's care. NOT trying to play a game of "gotcha".
I got a very thougthful email from her yesterday; they've been keeping track of mom's input/output and are finding that she should be drinking more; and that when she stays in bed, she hardly drinks anything. She asked if I thought this was a true decline or simply infection/dehydration.
I gave her a brief hx: graduated summa cum laude from college at 82, suddenly at 88 presenting with terrible anxiety which led us to cognitive testing, which revealed a stroke and dx of Mild Cog Decline BEFORE her "big" stroke in 2013. She seemed grateful for the background and I also pointed out that these declines (which always herald "the new normal" always seem to occur at this time of year, when the weather turns warm. Allergy related? Dehydration?
No clue. Just feeling happy that I was able to give someone information who appeared to be listening.
Head of rehab emailed today; they evaluated mom for self feeding today and will be applying to Medicare for some sessions to improve mom's utensil use.
Good news all around.
She's not really self-aware now, BB, it won't horrify her as the thought of it would have done years ago. Doesn't make it any less awful for you though. Hugs x
Mom does seem to decline in the summer. I'm not sure if it's the heat ( she's in an air conditioned environment, but allergens, etc) or what, but there always seems to be a decline at this time of year. They are going to review her meds, monitor i/O and have the aprn check her again tomorrow. They say they are seeing significant cognitive decline.
This is so NOT what my mom wanted.
Mom was a very bad eater for 20 years but toward the end she stopped eating entirely. It sounds like your mother still has an appetite which maybe is a good sign she is not giving up.
Somethings up; I sent an email to the RN director on the unit and the SW; she was apparently weepy earlier in the week as well. There is something that troubles her, we don't know what it is. If she can get a few words out, she'll say to us "you know, you KNOW what it is!" Once, when I told her that I truly did NOT she said "don't put me through this!" She sometimes thinks she has MRSA or leprosy and wont' let us bring the great grandbabies to see her.
Ms. Madge, they hand fed her breakfast. She had eaten a good deal of her lunch when I got there, but in slo-mo. Very strange.
It seems so good that she ate and drank what you brought her. Keep watching out Barb. Tonight I started reading what you wrote 3 years ago, not knowing it was not today.
And I felt so bad about your Mom's troubles. But it was not the end 3 years ago. I encourage your journal here, keep it up!
Bless you for bringing her a latte - do you suspect they let her sleep through breakfast and lunch ?
Went to visit today; she was still in bed at 1.30PM, very sleepy, eating in slow motion. Drank the latte I brought her and ate most of the chocolate muffin. Her vitals have been checked and they are fine. Sent an email to the DON to ask for a UTI check and to let them know that we are concerned.
I'm trying to navigate my way into a "let go, let God" state of mind. Which I could probably do, left to my own devices. However....
My sister in law, who is our eyes and ears, as she visits mom several times a week, in the evening, notices the little things. Then I call up the facility, find out what is going on and what I find out is that, while they are taking good care of mom, they are not telling us about stuff.
sigh.......