Should Mom go into Hospice or a get new doctor?
I've asked this question in various ways, I'm sorry if I'm getting to be a bore. Mom is 91, has CHF, pacemaker, post stroke with vascular dementia, chronic pleural effusion. Has had pneumonia 4 times this calendar year. At this point, since her last hospitalization, which was initially an ER visit for a fall, but turned into a thorocentisis for the effusion, which turned into Sepsis, she is back in NH. She can no longer walk or get herself out of wheelchair without help; her speech is so much more disordered than it was before the hospitalization and she's very frustrated. I am medical POA (brother is financial); I've spent hours in the last week trying to find out if the NH had the Xray done that the pulmonologist ordered on followup. Mom is still getting OT, PT and Speech, but does not seem to be making any progress. I am suggesting to my brothers that it's time for a Hospice organization to come in and evaluate (in part because I think that we are at the point of needing Hospice and the NH is saying no, she's not there yet). My brother's response is, let's get another MD in to evaluate her. Well, the MDs at the hospital evaluated her, they talked to the palliative care team, who, without seeing her, said, no, not one of ours. Really just venting, I just am so exhausted from being on the phone with NH all the time, trying to get information (did you do the Xray that outside dr ordered? Has she seen the dentist? What does the PT think?) and thinking that I need to go up to see her once a week (75 miles each way). I work very much full time at a stressful job for NYC. My brother and SIL are saints; they are 15 minutes away and go to see her several times a week, but I'm the daughter. I had a total meltdown on Friday night and told a huge whopper, that I had a bad cold. Spent the weekend doing things I wanted to do; going to Synagogue, having a sabbath lunch with friends, going to the theater today with my husband. Tell me if you guys think that at least a Hospice eval is NOT a bad thing to do. We can always say no, right?
You've been going with what mom indicates she wants and she's not really wanting hospice. You've about had it with medical crisis after crisis, but she is the one actually enduring them more directly. Lots of people with this degree of medical concern would feel differently, so no, you are not at all wrong to consider hospice, but you are getting feedback not to go there just yet.
My mom was in skilled nursing, and when she was on hospice the facility was not totally nuts about it because it meant calling the hospice staff for any med orders or anything she needed; but the problem was she had a horrid time in the hospital and there was nothing more a hospital could do for her, so I wanted to skip that for her. She had inoperable coronary artery disease and the best we could do was get the angina controlled with IV nitroglycerin, which was limited by her BP dropping out, and then max dose of Ranexa. There was an option called EECP that I looked at long and hard and finally decided not to put her through it. She had bad peripheral vascular disease too that made it relatively contraindicated. But, once things were more imminent, the skilled nursing folks actually wanted her to go to the inpatient hospice facility, and it really was a nice place; I told mom it was a different kind of hospital where they would focus on trying to make her feel better instead of so many tests and procedures. She actually rallied at first but liked it well enough there that she stayed for a private pay residential program they were doing in a different wing...sadly, we ended up getting most of our first month's payments refunded because she quickly took another turn for the worst and then passed away. The place was even closer to us and I was able to stay in the room with her and was able to be there when she died, and she had said she did not want to be alone, so that meant a lot to me.
For my dad, he was never on hospice but they had a plan to do everything including IV antibiotics without a trip back to the hospital too. Dad was OK in a regular hospital setting, but not really so good in an ICU. I did point out to his doc that his quality of life was pretty good when he was not sick - he'd sit and read, and take his time with his meals, and interacted with people though very confused (and he did not like to hear the word "confused" either.) So we did not really stop any care except when his last infection worsened and did not respond to IV antibiotics that was the end, they didn't rush him to the ICU again for a pressor drip or a ventilator. I think those might have been the right decisions to have made for each of them...yours may be different decisions, for a different preson with different values and medical situation, and you are not at all wrong to consider everything and to need a break from the distress every now and then. Hugs...
My dad had lung cancer and an expected 12 months of time per his oncologist. At twelve months and four days, his doctor (a gerontologist mind you) thought he was depressed and wanted to start him on an anti-depressant. I thought my dad was preparing to die and wasn't depressed. He died on the day the meds were to start. So even a pretty good gerontologist can't tell when someone is ready to go. But I knew my dad and I knew it was his time. So listen to your heart and your gut. I will always do what I think is right for my mom now, regardless of what the doctor says; I know my mom better than any doctor.
I think everyone has a point when they would say, "Enough is enough." Time for nature to take its course. Your mom, in her healthier days, knew where the line was for her and counted on you to carry out her wishes. Yeah, sure, it gets fuzzy. But, in my case, I can guarantee you my mom would drop over dead if she knew I'd had to change her diaper three times today because the suppository worked in mysterious ways.
Consider this:
OMG! My heartbeat is so irregular I'm dizzy and weak, Time to go, But wait! Here's a pacemaker for ya'. Then, after a while, the pacemaker type that regulates your heartbeat isn't enough. So...time to go. But wait! We'll put in a defibralating pacemaker! WHACKO!! And unless you whack your head on the toilet on your way down, you're probably: Good to go. Then, even with all of that intervention, your heart muscle gets weaker and weaker and can't adequately pump fluids around your body. Time to go. But wait! Diuretics! Then, as you see-saw between fluid build-up and dehydration, as you lose potassium and get flooey then get better, then get worse, myriad trips to the hospital, eventually your kidneys begin to fail. Time to go. But wait! Dialysis! 3X a week for 4 hours or so. Then you lose your appetite. Time to go. But wait! Appetite enhancers! Then a feeding tube! Then you lose your sense of thirst. Time to go. But wait! IV fluids!
And all the while you can't bend over to pick a weed out of the garden.
Don't misunderstand, I'm not saying which way you should go, But what I'm VERY thankful for is that I'm an "only" and I don't have to decide by committee.
*Hugs again*
I'm a little confused. If you have her on palliative care, why would she get an x-ray? That's not really what I thought palliative care was all about. I could, of course, be wrong.
If you've read some of my posts, you know that I love my mom to bits-and-pieces. As an only, I am here for her in spades. Now? I'm looking for a way for her to exit comfortably, painlessly, and begin her NEW journey on the other side; all the while knowing I've done everything and more that I could do.
Another evaluation isn't going to take ten years off her age . . . or restore her to having some quality of life. But I'm confident that, if what you (your brother) wants to hear is that it's not time yet? That's exactly what you'll hear.
It's interesting that our moms are suffering from the same ailments, plural effusion, CHF, pacemaker...not the stroke on mom's part though. She's bed ridden, has no quality of life, and will probably die of pneumonia (according to hospice).
Yesterday, she had a fever. The hospice nurse said, "If you want me to, I will call the doc to see if he'll prescribe antibiotics." I have absolutely NO doubt that he would have done so had he been asked. I said, "No."
It's time for mom to "go home." Yours? Well, only you can answer that. But remember, when she made you her power of attorney, she probably understood it wouldn't be easy.
*Hugs*