I think this is the beginning of the end.

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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


at mealtime in ednas NH they drag everyone into the lunchroom . some never lift their heads off the table . i think they drag them in three x a day just to keep them from lying in bed and wasting away . i saw an old gal yesterday who by all observation was already dead, frail -ly reach out to see what was in her dinner plate . most of them seem to be flying on narcotics and tho we dont see any QOL they still seem to hang onto any little enjoyment they can find . my aunt obtained shoe pads that made her shoes stay snugly on her feet and youd think she was rich . she has 20 bucks hidden that nobody knows about and it makes her feel powerful and secure . dont underestimate them . they may be trippin on pain meds and having a pretty good time inside their heads . my mother didnt die until she was at peace with her review of her life and was ready to accept that it was the end of her time . if your mom can and wants to talk , just listen to her .
Captain you are such a wise man!

Ba8alou I don't have words of wisdom for you, just a big virtual hug. This caregiving can be such a roller coaster ride of emotions with the physical and mental ups and downs of our loved ones. It's enough to wear anyone down and out.

As for your mom's prognosis, the nurse told me my dad was doing OK when they started him on oxygen (told me not to come) and 45 minutes later he was gone...so doctors and nurses don't always know the ways of our bodies. I hope your mom and your family has peace and a continuation of a lack of pain (even when she moves). Hugs.
I wish my mom were tripping on pain meds! Had a two day battle getting them to put her on scheduled rather than prn meds. This is "good nh" where they don't overmedicate. Sigh
Thanks to you both! And all ! My dad died in 1997 of leukemia; I'm not sure why this is so much harder. Maybe I was more distracted by my younger children or the fact that my mom was doing the caregiving and controlled the flow of information. I just feel quite ineffective and at sea. I'm just in need of venting and posting. If anyone is listening, that's fine. And if not, that's fine, too.
We're listening...and we know what you're going through. It IS tough for anyone. Since none of us control the universe, you just have to go with the flow. Do the best you can and know that it is enough.
I read your previous rant about discontinuing any further treatment for your Mom.
of course this is the begining of the end. Each new day bring us all closer to death.
As far as the pain is concerned she is living in the moment and when she is comfortably in bed she probably has no pain but when she moves the moment changes. Good reasons to keep her on a regular pain management plan.
Too soon to send for Dr Korvorkian. She is a fighter she has proved that many times. As long as she wants to continue to eat and I don't mean forceably spoon feeding her and is interacting with you and others and able to be pain free and continue a little PT she is making the decision to continue to fight. She is in a good place and recieving excellent care so the decision for hospice at this point is moot. Hospice can provide a lot of support and guidence and I would definitely recommend it if you were caring for her at home. The major decisions you will need to make will be whether to treat any further infections and you already know you wont authorize any further invasive treatment. the pacemaker was a good decision and has contributed to her comfort for as long as she lives.
There is currently a lot of dicussion about fractured hips. Many say the fracture occers first and that causes the patient to fall. No one really knows but she beat the odds on that one. Would you want her to lie in bed waiting to die with an untreated fracture and finally sucumb to the inevitable pneumonia. Each case is different and the personality of the patient is very important. To hospice or not to hospice that is the question. It really does not matter as she is getting all the care she needs right now. So relax and enjoy whatever time she has left. We can decide for our pets and of course should but with our loved ones we do not have the right to make that decision even where it is legal. That is the loved one's decision. When they can't make the decision and we have to decide to turn off life support we should do it with love and not be rushed and follow your loved ones wishes
Veronica, such wisdom contained in your post. Thank you so much for talking to me. Thank you for being my friend here.
at NH dinner , one old fellow reached out to get his polish sausage and came back to his mouth with an oversized , padded spoon handle and proceded to try to eat it . an aid pointed it out to another aid and they both had a hearty chuckle . edna was cracking up herself at the sight but turned to me and said those aids shouldnt be laughing at the old guy .
in the worst situation i still think some harmless humor can be found.
the NH dining room looks like the aftermath of a foodfight when the meal is over .
the same old guy a night earlier picked up a bowl of soup to drink it and immediately dumped it right over the side of his chair . it might not have been an accident , that was the worst soup ive ever eaten .
I must not understand what palliative care is....? The NH doesn't think "it's time yet"? I don't get that. Mom is on palliative care . . . no looking for problems, but treating what she has. If she's uncomfortable, I would let them do tests; outside of that? Her "test" days are over. What am I missing that a HOSPITAL would say that a 91-year-old woman who can barely get around isn't yet ready for palliative care?
i think docs are reading bloodwork . they can tell from bloodwork how well each organ is functioning .

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