I know they were up front with my aunt a few years ago because she was able to call extended family and get round the clock help when my uncle was dying, but they knew it would only be about two weeks. here I am pretty sure the problem is most people go on hospice after a hospital stay, and the stupid hospital talks it up like people will be getting hospital level care at home which is not true, and then hospice nurses are so busy they don’t get a chance to explain. At the height of Covid here people were waiting two weeks to get signed onto hospice and dying in the meantime. It is honestly not much better now and is all due to no staff. I don’t know if your agency tries to do the 24/7 and just doesn’t have staff or what the deal would be and why they’d tell you that if they can’t do it. It varies so much from community to community and agency to agency. We’ve never had 24/7 hospice, or even aides, at least as far back as 1996 when my grandfather was dying. Even then the expectation was family would do all patient care and the RN would come out only to help fill medication prescriptions(it was a horrible situation because he lived so much longer than they were expectating, but continued to need round the clock personal care. My uncle used up all his vacation time and then some and my dad almost got fired because they spent weeks and weeks caring for him at home). But I also have talked to people who moved here from other places who are shocked because they did have hospice aides and volunteers there. So I know it exists.

I am so sorry about your mother. I interact frequently with hospice. It’s one organization here that covers 3 counties and is, like everyone else, very understaffed. Hospice funding is weird and they can’t pay nurses the best so they don’t attact anyone who doesn’t really want to work hospice. There is one hospice facility for three counties and they only have a few beds. Most is either in home or in a skilled nursing facility(and there is only one here that is decent at all). We get fairly frequent 911 calls from families who are completely overwhelmed and don’t realize that hospice doesn’t send CNAs or other help in. I do not understand why doctors and their staff aren’t clear about that. I know people don’t want to enter a hospital or a skilled nursing facility for their last days, but that means you really need family that is able to assist you 24/7. Truthfully in today’s world, very few people actually have that. There is a nice hospice facility but they have 8 beds for three counties. But aside from some rare places, it seems hospice is there to prescribe meds for comfort and pay for things like a hospital bed. I follow two hospice nurses on TikTok and have learned a lot, like why hospice does not give fluids. But overall, I have met many, many people who have not understood the level of care and how rarely a nurse will actually be there, so I don’t think your situation is unusual or that you’re dumb or were taken in. It seems to be very common. The truth is that end of life is just hard and there often are no good choices. I feel that many of us are so removed from end of life and death that we don’t know what to expect. I am not really sure why, unless people just really did die earlier of other things like pneumonia when my grandmother and even my mom were growing up, because they’re all so surprised at how poor my grandmother’s quality of life at 89 is—but my observation is that, generally, the super geriatric population has a poor quality of life. But I am very sorry for your loss. I am sure there is nothing you could have done differently that would have changed the outcome.

I don’t understand the insurance thing either, unless the facility’s policy is just that they don’t accept insurance—but that’s weird. It is possible Medicare doesn’t think he will benefit from PT. My grandmother just lost services like PT and OT because Medicare hasn’t seen the progress that they want to see. Medicare only pays if they believe the patient will actually improve due to the service. I believe it’s typical for a facility to only allow their providers.

The oxygen tubing isn’t really a fall risk. It just kind of lies flat on the floor and you’ll step on it but not really trip over it. I’ve never lifted anyone off the floor who’s tripped over their oxygen tubing. A home concentrator with lots and lots of tubing is probably her best bet; it’s simple to use and she will probably even forget she’s wearing it in time.

Obviously I need a monolith of my own.

My middle child’s private school does half days the first week to ease on in, which I think is smart. Have a blah day and don’t feel guilty. It’s rainy and miserable today. I’m making cookies and hot chocolate.

I think of her as religiously hating religion lol. I think there is a host of unresolved mental health issues and I try to be compassionate and keep some communication open. She lives states away so it’s not something I really have to deal with often.

The rain ruined all my plans, DH is at work and my kids were literally climbing the walls. I mean like actually trying to scale the walls while playing the floor is lava, the freshly painted walls….

One of my ex boyfriends(who is now a trans woman so I use “she”) is like this. She grew up in a very fervently religious home and her mother died very young after a painful illness. Then dad sent her to a Christian college and that is where she became fervently atheist. I would call it a religion with her, if not in general. Mostly because every time I post something on FB about my faith or Christianity she very much sends me a message or leaves a comment either trying to convert me or telling me only stupid people believe in God. Atheism is a core value of her personal beliefs. I don’t try to convert anyone and have no interest in what others believe for the most part, so it annoys me that she does this.

One note about the makeup: I’ve been on TV a couple of times and it’s not regular makeup. The lights and cameras will really wash a person out and make them appear sick or super pale, just not a good look. It’s why TV anchors wear pancake makeup. The makeup for TV wasn’t about changing her, it was just about making sure she appeared to be a normal healthy person. I don’t wear makeup most of the time either. TV pancake makeup drives me crazy, but it’s not about changing anyone. Just lighting.

Wesleyan is what I consider myself. My husband was raised independent(but not necessarily fundamentalist) Baptist—women wore pants, they didn’t use the King James Version, they have a worship team instead of hymns. My younger two kids attend an independent Baptist church now. How I was raised depended on my parents whims. They were incredibly religious until my teens, but my mom fell more and more into fundamental homeschool-ism and the family integrated church nonsense, and along with that she started bouncing from church to church because none met her ever growing standards. We barely attended church after I was 14, though I really wanted to go. My mom was hostile towards Christians who didn’t live the way she thought they should, so attending on my own wasn’t an option(and a lot of it was a really weird time in my family following my brother’s death). strangely, she’s never gone back to church despite dropping all of those beliefs. I went to a Wesleyan college and generally align with their beliefs. Of course I then married a man who became hostile towards church after we married so I still don’t go. He wouldn’t say anything and is clear that I’m welcome to go, but I work two Sundays a month and I’m shy and have social anxiety, so finding a church without him going with me seems daunting.

My oldest does not attend church and hasn’t since he was 9 or 10. We don’t force it, as my husband never attends church either. DH was forced to, then attended as an adult for a few years to keep the peace, and has so many negative feelings towards church now that I will never ever force anyone to go. My oldest does choose to go to youth group and I encourage that. I would love to attend church but right now I feel like it would create issues with my marriage due to how strongly my husband dislikes church(he still considers himself a Christian though). Our younger kids go with their grandparents and love it.

If it was a mixed aged bus I would be fine. Or if there was some kind of supervision at the high school. But due to conflicting times she’d be arriving at the high school after the kids are gone and waiting in an unknown area where there might or might not be a staff member present. DD10 is very smart, but very innocent in many ways that I’d like to keep for a little while longer. We’ve figured out a pickup schedule thanks to two grandmothers and an aunt, and a drop off schedule thanks to an understanding boss letting us come in late, a different aunt, a grandmother and an uncle. I also think my frustration with this school district makes me overreact. DS7 made zero academic progress according to their own data since November 2021. But they refuse any academic supports. And I’m frustrated because I was homeschooled, DH was homeschooled, and I know in my heart that our parents gave us a much better education than my own kids are getting. I definitely am not knocking any type of schooling, just frustrated.

I don’t know. I actually think most people drive their kids, but the vast majority of kids in this school have a stay at home parent and homeschooled younger siblings. The district’s stance is that they are offering transportation, I’m just being difficult because I don’t like what they’re offering.

We are organizing the grandparents to carpool—the school starts 30 minutes later than the public schools so I can get DS7 on the bus and then take DD10. It’s pickup that’s the issue because there isn’t time to pick up DD and still be home to get DS7 off the bus. Fortunately my SIL works part time at the school and can bring her home two days a week and my mom can get her one day a week. The other days we have both parents home in the afternoons so we can tag team. I think I am just overly done with this school district, I hate that they weren’t going to fully tell me that she’d be left at the public high school for a period of time(a relative who works at the bussing department alerted me), I’m so tired of fighting them over DS7’s academic progress or lack of it, and I really just want to pull the kids out because I’m so frustrated.

Update first post

Paramedic(we have two that I know of on the board). Over the last year I’ve morphed into more of a speaker/writer/educator/consultant though and I’m rapidly moving more towards that than working 60 hours a week on an ambulance.

I threw ours out. We don’t mask any longer and I figured they were probably dirty and nasty. I have an endless stream of disposable masks at work if we need some. I do kind of wonder about the environmental effects of all these disposable masks though.

His vision going black for a few seconds combined with a history of low blood pressure doesn’t really lead me to the TIA/neuro route. If it’s near syncope, like he is almost passing out, a cardiology work up makes them most sense. If it’s happening at predictable times, like standing up, it’s probably a postural hypotension especiallY if he’s usually on the low end. But yes, that sounds like he needs cardiac work up to rule some things out. I wouldn’t really consider that a sign of a TIA in the absence of other neuro symptoms though.

One of my coworkers was told by his optometrist that they believed he’d had a stroke in the past from something they saw—maybe on the retina? I honestly don’t remember now. There were no acute symptoms and no stroke like event he could remember. He followed up with a neurologist who didn’t really think it was anything. Every now and then an optometrist calls 911 for something they see in the exam that must indicate a stroke, but I have never had a patient who went in from the eye doctor’s office who wound up actively treated for a stroke(small hospital so they all get sent to a larger facility by ambulance if they wind up getting urgent neuro treatment). So if your son is not having active TIA/stroke like symptoms, I’d follow up but not lose sleep if that makes sense. If anyone is ever experiencing stroke like symptoms though please call 911 or go immediately to your local ER. I don’t know why they’d tell you to follow up with cardiology though; TIA/stroke falls under neurology services. There are cardiac conditions that can increase the risk of a stroke, but usually you don’t start with a cardiologist.

I think people just go to Canada all the time. I assume he won’t be there for months on end.

No way!!! I’m excited. It’s 5:30 pm and I’m still trying to figure out what to make for dinner because DH is not picking up on the take out hints.

Your mom needs to write a cookbook already.

I am so sorry. The patients I’ve had or transported far away(usually five or six hours) post lung transplant seem to struggle a lot, with a poor quality of life especially with Covid. Covid, flu, a regular colds are just so brutal. I had one patient recently tell me he has not seen his grandkids in person in almost three years because of Covid and it truthfully doesn’t look like he will be able to. His own care is five hours away and so many risks now in getting to and from his appointments. I would ask to see if there’s lung transplant patients she can talk to, if she’s interested. It is a very difficult recovery and lifestyle. Everything about pulmonary fibrosis is so hard. I will be praying for all of you.

Situations vary so much. But I wonder if the goal is truly independent living for her? If so, I would probably charge rent and begin to scaffold independent life that way. However, it sounds like between her salary and needs, she may not be able to live completely independently. In that case, I think I’d work more on budgeting for every day needs that she’s responsible for and not frittering away money.