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
Has any of the fluid from the effusion been drained off?
Sounds like this is a difficult waiting time for your family; I'm hoping it gets better though, for everyone involved.
The decision was made based on the fact that mom has lost a ton of weight in a short period of time, has almost zero appetite, her pressure sores are not healing, and her cognitive ability is declining.
I have found the hospice team to be amazing. Their goal is to prevent hospitalization and to make every day a good day (as possible) until the end.
They are able to provide better/stronger pain management a whole lot faster than regular facility staff. They give her an extra bath and wash her hair each week. Music therapy comes, pastoral care comes. They can have volunteers come to sit & visit with mom. There's a social worker for me to talk to.
Don't wait too long to call in hospice because they are a great anxiety reducer for the whole family, not just the patient.
CM, you hit the nail on the head. My sil so wants to "fix" this, in so fsr as things are fixable at this stage. She is our eyes and ears because she is able (and enjoys) to visit my mom frequently. So it's not like she's sitting back being an armchair quarterback. But it gets wearing.
Fingers crossed that by the time they get back there'll be an improvement and SIL can stop chewing her fingernails and stressing you out in the process. I know she means well, but how is she helping? Wish you a nice calm weekend with your mother beginning to feel better.
I went up today because my SIL and brother called me last night...Mom was wiped out, sil says that the klonopin is too much, yada, yada, yada. She's got an MBA, I've got a professional degree in psychology and my brother is an Engineer. I.e., we're not doctors or nurses. I watched all day. I called my brother and said "I'm not interfering any more. She's wiped because she had pneumonia" (opinion of all the med professionals there).
Brother and sil are going away till Tuesday, so I need to be on call and visit again over the weekend and probably Monday. I'm going to try really hard to sit on my hands a bit.
When lunch came, I needed to feed her some soup. She was able to manage picking up a tune sandwich alone, ate a bit. She was able to handle the spoon for the cup of ice cream. Then, got an awful look on her face, wanted to be put to bed. SIL, who visited later, said that apparently she'd asked for Tylenol for a headache. Was smiling again later when grandson came to visit. Ate more ice cream that SIL brought. So far, she's improving, slowly but steadily.
Try not to thump her, won't you :) And meanwhile I'm glad your mother is feeling more comfortable. Eyes on the prize. Hugs.
Meanwhile, my sister in law, who i love and who visits mom almost everyday says says "well if you guys want to give up...." I'm standing firm on this. Thanks all of you, for travelling with me.
I wish you and your Mom comfort and peace.
Yesterday they called my brother to say they were hearing rales in the bottom of her left lung ( the god one). Tonight she's on antibiotics for pneumonia again. Ah well, let's think good thoughts!