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
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.
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.
she had a followup xray which was sent to the treating pulmonologist. He called me and said "I don't think we should put any more holes in your mom. There will probably be one more hospitalization and then a sharp decline". (This is someone who's dad died of chf, just like mom has). So I'm not eager to do another tap unless she gets uncomfortable. Right now, she's not short of breath or feeling pressure and she's not coughing. So right now, we're leaving well enough alone and hoping the antibiotics will get to the infection.
But mom seems chipper and comfortable. But according to my sil, who saw her tonight, uncharacteristically confused about who a card was from. So we'll see how this plays out.
My brother and I are both leaving for vacation at the end of next week. That should be interesting (he's going to Spain;I'll be in Massachusetts). We always try to coordinate, it doesn't always work!
Best wishes.
Still, if it puts her mind at rest and she wants it attended to that'll be worth the trip on its own. Hope it goes smoothly and turns out unproblematic.
And mom's had melanoma once on the past, as did one of her brothers. From what uve read, melanomas increase with age, in part because they arise as the immune system slows down. My mom was a medical secretary to a group of cancer surgeons at Memorial Hospital in the 1930-40s and so knows enough to be really worried about stuff like this. Unfortunately, her knowlege is based on sccience that is 75 years old and is being filtered through a very damaged brain. So we'll get the biopsy and go from there. Thanks for listening.
To confess, I AM in favor of ignoring things that we're not going to treat (no none marrow buopsy 3 years ago. They found a couple of atypical cells in mom's pleural effusion). But this is something that may be easily cured by removal, and to ignore it is to worry mom.
My mother used to comment when we were preparing strawberries for eating that some of them liked to sit down instead of standing up. It was so spontaneous, and so sweet.
Let me rant for a sec. My mother is, and always has been, the worst awful in er on the planet. She worries to death any minor symptom before, during and after diagnosis. It makes insane. What's sadder still is that, while the doc was cutting, I stood behind her and held her. And I thought, my mother never did this foe me. I don't recall any medical or other procedure during my childhood where she reached out and touched. I was told to "offer it up".
And some lady on this forum wants to know why my mom, with dementia yet, doesn't live with me (well, not really, it's more complex than that)? Because there was no milk of human kindness in my childhood directed at me. Not feeling very good about my mean- spiritedness at all, but it is what it is.
I know what you mean, though, about the bitterness you can't help feeling, and you really can't help it. I remember my mother very firmly putting me off her knee (I think she was reading, so fair enough) but I don't remember ever trying to climb up again. Hugs R Not Them.
Still, you do provide comfort because it's the right thing to do, no? What else can you do?
I hope you and your family are able to have some peaceful days as you await the results.
I remember watching a PBS drama on the Plantagenets years and years ago. It was historical as well as social, addressing the draconian practices preventing women from equal status to manage their own finances. While fascinating, it's also hard to repress anger at the way women were treated by society during these early centuries.