Kieron

This is a classic situation. I believe it's being called "gentrification" nowadays, and the Paltrow types always find the true and the authentic, and then manage to cheapen it and exploit it for the almighty dollar. Just ask any Native or Indigenous person; they can tell you stories.

Welcome. you've covered a lot of territory in your post, and much of it is familiar to us in one way or another. This is a real thing, a real concern, never to be dismissed with any platitudes. We are human, we get weary of the same futile conversations, routines or actions, and we find our patience shorter, or nonexistent. I'm sorry you're both caught in this situation. Just know that many of us here "get it" and we are here to support, having been through it already.

The real kicker is this: insurance, 9 times out of 10, will deem these as "experimental" or "non-covered service" and will deny you any coverage. I have always paid out of pocket for acupuncture, or anything else viewed as "alternative." I keep saying my "health insurance" is junk insurance. It's insurance for the sake of having insurance. America's only real health insurance model: "don't get sick."

I can relate to each of you in different ways. There are some things I did and said and thought, during the aftermath, that I would hope no one remembers. It's enough that I remember it.

Aw. He knew you needed some puppy loving. 💖

Gosh, Gwen, I am sorry you are facing all this. I wish there was something we can do from our various locations.

OMG, razorclam. I would report that one to the state Board of Social Work or Board of LMFT/LPCC, whichever she belongs to (assuming she does!!!) if you can muster the energy. Totally, totally off-the-charts unprofessional. ECR, I'm sorry, but the other comments are on-target. It's normal to encounter grieving "switchbacks" in which you feel like you have made progress only to backslide or return to the same territory you thought you had been over. It can feel discouraging, but know you are not imagining that, and it is all very real and natural to go back and forth like this.

And please utter the magic words "I want to see the Patient Advocate" if, at any time, you are getting less than stellar service, support or treatment. That is your RIGHT as a patient.

I can't believe it's been 3 years since I joined this place. Seems like last week or so. Where does the time go?

As you say, they shift you around for THEIR convenience. When I had to have major surgery years ago, they did this kind of thing to me and I pushed back and got my way. It's my freaking surgery and my state of vulnerability, not a chess piece to be moved around or be hauled around like a sack of potatoes! Good for you that you pushed back, both of you. People who can hop in the car and go anywhere forget that when you don't have a car, have to set up a ride, or have kids, pets or elders to arrange for cares, or can't walk/move around easily, can't walk far, in pain etc. then it's a whole new ball game. They never listen.

Gwen, I sure hope there is a patient advocate or patient rep or social worker or something in your local system that could help shoulder some of the burden of navigating the crazy bureaucracy and requirements. I know it's crazy-making. It's NOT you, it's the system, which is heartless, cold and bureaucratic by design. Recently The Atlantic, some kind of political monthly periodical, had a story about how the unemployment benefits systems around the US were deliberately made difficult, insanely bureaucratic, and intentionally defeating to try to keep people from accessing unemployment benefits, last year or so, due to the plague, benefits that they had already paid into the system and should be able to draw on. This goes for the welfare systems as well. All require insane amounts of proof, verification, photocopies, asking intrusive personal questions, or the wait times on hold on the phone made people give up in frustration because they have lives, have kids or elders to care for, jobs to go to, etc etc etc. It's all by design, I'm cynically starting to see. I see the truth in this statement by Leesa Healy, an Australian nurse and educator, "It is not only our habit to avoid pain, but also, the very structure of any capitalist society is allowing us less and less time to be ‘truly human’ .”

The old War On Drugs has warped our view of medicine and by extension, medication, which came about as a means of treating pain and disease (dis-ease) of every kind. In the US particularly, the puritanical insistence that pain must be endured, or that the sufferer deserves it somehow, has never quite gone away. I see it a lot in my line of work, and I see credentialed, educated, licensed professionals who go into the field of medicine, social work, law, etc with no personal experience in suffering, who are judgmental of suffering people--until it happens to them personally. Then their attitude changes (sometimes). Fortunately in recent years, things have changed and now those very sufferers--people who have suffered personally, been an addictive personality, a patient, a parolee, a bereaved parent, a convicted felon, a victim of crime, etc are now entering these same fields with life experience and getting degrees and credentials and bringing reality checks to the fields, and I can say that is AWESOME and about damn time. There's no degree like the one from The University of Life to open one's eyes.

I'm with Gwen, here. My problems pale into insignificance in comparison to either of you. It all sounds unbearable. I don't even know what to say. 😶

I would add one thing to Marty's response, and that is that any hospital has a patient advocate on staff. That person or office is there to help you connect with physicians or anyone involved in patient care, to get questions answered, or intervene when you feel your concerns not being heard by the hospital, get a second opinion, etc. They're often highly trained. Here's more on that role: https://www.beingpatient.com/what-is-a-patient-advocate/ Meanwhile, I'm really sorry for this sad situation you find yourselves in. The impulse to question and second-guess, just wanting answers, is such a familiar one here.

We've got smoke and haze from the Boundary Waters Canoe Area fires far to the north. The sun was a very hot orange ball behind the haze, and air quality warnings are out, as are drought warnings and watering bans. I haven't seen it this bad in years.

Interesting you mention that... a few days ago I could see from the caller ID that someone we were friends with called, but did not leave a voice message. I haven't seen or heard from them since the memorial. Not one word since. Why now? I debated calling back, but ultimately deleted the caller ID entry. After all, what is there to say after so much time? They were more his friends than mine.

Oh wow. That's poignant. 💖

Welcome, Alvin, and I am sorry you have had cause to have to find us, but we're glad you're here. At 7 weeks it's quite fresh for you, and it sounds like you are taking the days as they come, and that is sometimes all you can really do. Good analogy. And you're right, the feeling of having so little to look forward to is a persistent one. I'm still dealing with that one 4 years on. You mentioned being INTJ. I am INFJ, the rarest of them all in the Meyer-Briggs personality types, and as an extrovert, he was the one who drew me out into the world, so now I am the one who has to prod me out into the world. It's a strange feeling...

A blog I follow echoes this concept of appeasing others that Gwen mentions above. I thought it was too good to not share. Here's a snippet: "If we are grieving, those same sociological effects are at work. People try to chivvy us out of our grief with blatant platitudes. They try to cheer us up because society needs us to be happy and productive, not morose and sad and grieving. They urge us to move on because they need us to move on, not because we need to." https://bertramsblog.com/2021/07/11/sociological-aspects-of-grief/

Gwen, this is so very well put. You managed to capture quite a lot in a few sentences. 💖

Wish I could! We need the rain too, though. But yeah we get all kinds of weather here, all except hurricanes, from hot and humid now, to subzero 6 months later. It's crazy. But the spring and fall are worth it.

I think maybe we have your weather. It's like our usual weather has switched places because it's upper 70's and some rainy pattern for a few days being predicted. About 2 weeks ago we had severely hot days with drying winds, and we're under drought warnings, as well, despite some showers. Hope you can take cool showers/baths and be near a fan.

This may interest you, although it doesn't specifically refer to death doulas. I don't know how to embed videos anymore in this forum, but this 8 minute or so video is worth a look. https://youtu.be/wR3cr3g7wG4 We’ve been taught to hold on to things. And in our material world, life has become a possession too - we cannot seem to let it go. It seems to have become more acceptable to "rage against the dying of the light" and fight to the bitter end, than to take stock of what life has been about and to be at peace with death. Dying is not about hanging on. It’s about letting go, reconciling, finding peace. And when we learn to do that, we learn to live life. Filmed in Port Elizabeth, South Africa. Featuring Di Lawrie. I like her pithy, succinct and to the point comment: "we only die once, but we live every day."

That's pretty common, covering for a vacationing colleague but in my view, you can start fresh with this new person and lay down the law and say"No more conflicting info. one person coordinate things and everyone gets on the same page. Period. My nerves can't handle all this back and forth." And ask for a supervisor if you need to. It's possible the covering social worker goofed or erred somewhere, and is deflecting rather than taking responsibility for a screwup.