Palliative care NP at the hospital told DH yesterday that in her current condition, it’ll probably be a few weeks.
I really cannot say anything to MIL about this. When I raised my concerns w/DH yesterday, he got pretty mad at me, accused me of treating him like a child, etc., so I told him that I’m keeping my mouth shut and I’m here to help out with whatever he & SIL need or want help with. DH is primary on the healthcare directive and he’s decided not to fight w/MIL’s church friends, so she’s going to be placed in a hospice care facility in MIL’s area.
Hospice facility, not hospice care at home. She’s beyond the point of being where hospice care at home is a viable option. My mom had hospice care at home for awhile before she moved to a hospice facility and the home hospice care was, honestly, garbage…a nurse showed up once a week and my dad had to handle all the rest of it himself.
Prior to this, MIL was living alone. She cannot and will not be moving in with us or SIL.
Doctors have explained to her what the cancer treatment entails. She emphatically said she didn’t want it. My MIL does not have dementia problems and although there’s been many times over the years that she’s driven us bananas, one thing we’re all in agreement on is that MIL gets to decide what she does and does not want.
She’s decided that now, so DH & SIL are now taking action on that.
My father died just about 3 weeks ago, in hospice care. What I learned here, and through my family’s experience, is that the #1 goal is to give each other grace. Lots of it.
Everyone is shocked and grieved and so, so, angry at times like these. Try to avoid questioning motives and decisions because there will be so many to make even when everyone agrees. The struggle to control comes from an understandable human reaction to Do Something.
The goal can’t be to have MiL at a certain place, for any certain reason. The goal IS to not come apart as a family in an irrepairable way. That’s really it. Hospice is a new frame of mind and you’ve only just decided so give yourself grace as well. You can do this. Scream in the shower, cry, be honest but give each other grace to say stupid stuff and behave in different ways.
Go forward, and treasure the days you have, the visits you can make. Behave in a way so you have no regrets later, and hang in there.
So I assume MIL’s choice still trumps those on healthcare directive, rights? (Actually it is a self-serving questions. We’ve been encouraging Dad to get his will etc updated … want to understand more).
Around here you cannot enter a hospice facility unless you meet certain pretty restrictive criteria so @sbinaz glad it is different where your MIL is. It is very burdensome on the family when only home care is offered by hospice until the very end.
The cancer must be very advanced if only two weeks might be left, so declining chemo probably makes sense in that context. This seems sudden for your family and wishing you all the best in coping.
Just a bit of clarification, based on my experience. All 4 parents who did hospice had hospice in charge of medical things, but day to day care was handled at home, be that actual home or their board & care or SNF.
There was a stay in Hospice facility which charged, IIR, ~$350/day for the day to day care, the ADLs. Hospice, the Medicare service, is merely that the Hospice wing of the plan handles all the medication, is much more flexible, comes to them, wherever they are, etc.
In my experience, two different states, Hospice does not take over 24/7 care for no extra charges.
I think things vary on hospice programs. For my mom, hospice was really helpful, but mostly for the life-end logistics (and thankfully that was fairly quick). She did not even want the weekly nurse visit but complied for my sake. She stayed at her apartment (with me visiting once or twice a day) and then my house the last week when totally bed ridden. There were services available from hospice that we wanted her to use… aid for shower help biweekly etc…. but she was not keen on strangers. She did absolutely LOVE the hospital bed hospice provided at her place (and a 2nd one at my house). There is locally an option for a hospital hospice bed that my friend used for her mother, but with Covid at the time we did not pursue.
I will add that I was not prepared for all the various people we’d interface with (social worker, intake nurse, weekly nurse, backup nurse, chaplain/required 1 visit, a slew of phone coordinators). I should have started a notebook - more than a dozen contact names, and this was for a situation where very little home help was wanted.
I think that is very good advice Greenbutton about giving grace to others. It’s been 6 years since my mil died and the four siblings with the exception of 1 who stay connected to everyone are just now starting to relate to each other again. I thought the hard feelings would never go away and am glad to see them stating to reconnect.
Sbinaz, I hope your mil’s remaining time will be comfortable for all involved.
In our state, and since it is Medicare I would assume elsewhere, there are certain criteria for coverage of inpatient stays at hospice facilities, and they also tend to have a few private pay beds. One of the criteria is a need for pain relief. My mother would have died at home (assisted living) except the intensity of pain meant oral morphine wasn’t enough and she needed IV.
It is important to be kind to one another in times when our loved ones are very ill and dying. We may well have to live with one another for several more decades and everyone is doing their best—even if we may disagree about what the best should be.
we all cope in different ways, and I think it is underestimated and under-discussed how angry eldercare makes both the patient and the family. You are truly helpless, but the decisions feel so urgent and important. Yet there is nobody to blame and nobody to talk to, often.
Everybody manages that anger and sadness and stress differently. As long as we accept those “terms” with clarity, we’ll be okay, I hope.
Mom, for example, has a doctor appt this week. PS says “be sure to ask about xyz ,and who is taking her”. I offer 3 different scenarios, run them past PS, LS, and Mom. LS maintains radio silence except to say the appt probably isn’t important and does not offer to take her. PS & I are pissed at LS but only say so to our spouses. Mom is mad at me (constantly) for continuing to say she should not drive. But at least we are still all in this together; it won’t be very long before we’ll have to make decisions for Mom like we just did for Dad.
@sbinaz one caution: my mother was conversational and even joking, but when a low dose of 2mg morphine was given by IV, she became unconscious and never came out of it. I wish I had known beforehand so I could have told her I loved her. So just want to let others know of this possibility.
That is so difficult! I appreciate your example, the LS may be feeling at their limit but also doesn’t want to admit it.
And from the point of view of LS, there are so many tasks that need attending, can seem difficult to prioritize, or one even becomes numb and worn down.
The non local siblings get frustrated with lack of communication and outright disagreement.
And even spouses can feel stress.
May all caregivers have serenity to accept things they cannot change, courage to change things they can, and wisdom to know the difference.
We’ve observed that already. And prior to the IV pain meds and even before oral pain meds were started, her pain levels were high enough that she could barely hold a conversation because everything hurt so much.
My DH and SIL are ok with and have come to terms w/their mother’s decision. Over the weekend (or maybe it was on Friday? the days are all a blur right now), DH spoke w/either a nurse or an NP at the hospital about his chemo questions. The nurse/NP told DH that since the oncologist was recommending a lymphoma regiment of chemo, what that does is if the person starts out younger and fairly healthy, the chemo brings the patient down to the level that MIL was before all of her pain began a month ago.
…and then when you take where my MIL started health-wise a month ago and then you were to add lymphoma-style chemo on top of that, many of those patients don’t last very long because either the chemo kills them or an infection does. AND the nurse/NP said that it’s not a cure. It’s just to give the person more time to live.
MIL has chosen quality over quantity. She’s 78 and, honestly, has the body right now of somebody who’s 10 years older. Every day beyond 70 is a gift, in my opinion, and she’s lived a long life. DH & SIL & I all feel frustrated, though, because the uterine cancer could have been caught sooner if she’d just gone for regular healthcare screenings.
My MIL has had many years of practice at living her life trying to pretend like hard decisions and problems didn’t exist. It’s been very frustrating for her kids. Her retirement life could have been a lot easier if she hadn’t been so stubborn. For example, she should have worn eyeglasses, but refused because she thought they made her look old. She should have been using a cane or walker because of severe problems with mobility, but refused because “they make me look old.”
DH tried to get her to do grocery store online order pick-up for the past 3-4 years. She repeatedly refused because she didn’t trust online ordering/purchase systems.
It would take her over an hour and a half to do her grocery shopping in person because she used a scooter but went through the store to pick items up based on the order that she wrote the things down on her list (i.e., rather than going up one aisle and down another in aisle order). Eventually, her BFF who’s driven her everywhere for a few years now said, “Enough. Do the online grocery store pick-up or I’m not taking you grocery shopping anymore.”
She’d get her monthly prescriptions filled at 3-4 different pharmacies across town and they’d all get filled on different weeks of the month, so she’d have friends drive her every week to 1 pharmacy or another. DH tried explaining mailorder pharmacy to her many times for maintenance medications. She refused.
She’d complain all the time about how everything is ‘expensive,’ but for her, anything more than $20 is expensive. Complained about how much her home phone bill was costing. DH & SIL suggested for years that she get a cell phone and just switch to that. She refused until her senior friends started giving her a hard time about how come she’s in the dark ages and won’t use a cell phone.
…so then she finally switched to an iPhone, but would never have the phone ON her. And because she’d refused for ages to get hearing aids (until about 9 months ago…thank goodness!), she’d never hear the phone ring. Or she’d put it in her purse and forget she left it in her purse. She never could figure out how to actually use voicemail and listen to her voicemail messages.
Text messaging? Forget it. She couldn’t figure that out either, despite all 4 of us in my immediate family trying to show her very patiently how to do it.
She’d complain that my kids “never” returned her phone calls. But they did. They’d leave voicemail and she’d never call them back. And when she did call, it would be in the middle of the school day anyway.
We have a friend who is blind (total vision loss) and he uses an iPhone all the time, uses its visually impaired “siri will read everything out loud to you” technology (I don’t know the proper term for this). He’s a wiz at this. We tried explaining to MIL that she could do this, too (she still has vision, but it’s just peripheral vision and she no longer sees color…only black & white). There’s even a school in her area for the blind and we offered to get her connected up with them to get her some resources and assistance.
She refused. Repeatedly.
So you know the phrase about how you can lead a horse to water, but can’t make him drink? That’s my MIL right there. That being said, we still love her a lot. What’s going on just totally sucks eggs all the way around and it’s so frustrating that there’s nothing we can really do about it.
