Is there someone else in the family who can just use your words and talk to her? To tell her that you know that her concern is out of love but that the constant over extending hope/results is stressing you out and making you feel like you can’t put her mind at ease…because you can’t!?
I’m so glad that you and your husband can be real and truthful with each other. Thinking of you!
Can your husband ask her to back off (in a nice way)? My father used to feign sleep when his sister visited him in the hospital…
Sending my best wishes to you and your husband.
Not a pity party – you are decompressing and that’s necessary…
You might consider CaringBridge. You can set up a page for free in about 10 minutes, send the link to whoever (or deputize SiL to do that) and then write as much or as little as you want — but people with questions can just be shunted to the page.
We had pages for DH and S2, and I had the voicemail message /answering machine just tell people to go check our page for updates.
@abasket While that is a great idea, I need to put on my big girl panties and tell her myself instead of letting it eat at me. We get along great and at the start, I think I was protecting her feelings. She loves her baby brother as much as her own children, and only wants what is best for him.
@MaryBarbara58 I would not want my husband to know his sister is upsetting me; it would devastate him. While his sister can be a bit dense at time, this was his mother figure when his mom died when he was 11; the two loves each other.
Caring Bridge has been mentioned a couple of times, but currently is not something we collectively as a family want to do. We have an email list that any important updates are sent to those on the list. This includes family, friends and some coworkers. If information needs to be shared with the immediate family quickly, my SIL and my aunt get a text so they can share with those that should have the update.
So one reason for his extreme tiredness I didn’t mention earlier, and might have pushed aside was depression. It is real on top of all the medical issues. While we have been able to talk through it, he is having a really hard time. I am glad he isn’t bottling it up anymore, but he is scared for his life and mine. I hated leaving him tonight, but he was watching tv and was calm. Hopefully he will sleep tonight and have decent sessions tomorrow. He knows I am around the corner if he needs me to come back.
@snowball , sending cyber hugs. You were asking about ideas of what could be helpful beyond venting here (and how often do we tell parents to come here to stress rather than doing it with their kid?)
Use the rehab folks to help set you up with resources when DH leaves. What you are navigating for the first time is a sea they have traveled frequently. They probably have lots of ideas on how to do things more easily (i.e., how to bathe your H) or who reliable help is or ways to access affordable care. A network can help, and it doesn’t have to be for emotional support.
The other thing is to put some photos of your H in the room with some other items that represent who he was pre-tumor. Use those to let nurses, therapists, etc know who the man is they are working with. While you and DH are grieving for the life you once knew, the person you love, while altered by illness, is still in that body. He may feel more connected to himself if he’s treated like the person he is, and you can help those just meeting him get to that person more quickly. We did this for my dad, and it helped SO much. People weren’t responding to an invalid but to a full person.
Hoping you too are getting time to be you in the ways that give you some joy and peace. You both have suffered a huge loss and you also need nurture and care, which may mean time when you aren’t thinking about DH or family. It’s your oxygen mask.
Sending all the best thoughts your way.
So much love, care and concern being sent your way @snowball.
My sister and I put Alexa devices in our mother’s long term care room.
It’s amazing how music can change the chi, vibe, of space, so we use Alexa to play moms favorite songs. Music can be immediate antidepressant,
It’s also handy to use the “ drop in “ feature, to hear what’s going on, or to talk via Alexa device, because mom is sight impaired and it’s just easier for her to call us or for us talk to her.
Also, went with a friend who was not a support group person, to Alzheimers support meetings for a year when her husband was ill.
Surprisingly the meetings were helpful, plus stopping for wine after and chatting didn’t hurt.
You might be surprised to find out support groups work for you, nothing to lose from trying, even better if you can share experience with friend, one who likes glass of wine too.
Kudos to you for posting here, best support group ever. May the force be with you.
One of my friends who never considered herself a support group person said the bereavement support group was invaluable to her in recovering as best she could after her H died. She said the people in the group really understood and were going through similar grieving at the same time, which helped all of them process and heal.
While I am venting-H had a virtual visit with his psychiatrist yesterday; he has been seeing him for 20 years. This was a much needed visit as H had feeling that needed to be discussed and he had it at 1:00 on his calendar. I requested he didn’t have therapy during that hour, which rehab was happy to do. The doctor called at 11:00 while I was in the room and H was in a session; seems the appt. was at 11:00, not 1:00. There were no other appts. available the same day, so I was instructed to call the secretary.
I called and the first available appt. was in 2 weeks, which I can understand. What I am having trouble with is we still had to pay for this visit; he doesn’t take our insurance, so it is self pay and they charge your credit card the morning of the visit. I explained to her that the man has a brain tumor and made a mistake, and it has been with this doctor for 20 years, so can she make an exception. It was a no go, and she stated that the appt was made with my husband and son. When checking when the last appt was, H was at home and son was not in town, so she is mistaken. I can’t decide if I call her back and tell her that H made the appt. himself, or let it go. My husband said let it go, and he would have said that years ago; I want my $275 back! I do realize he took a slot someone could have had, but I also think they could have made an exception. In years past he has been charged when he got called into surgery, and that was always a risk he took.
Thanks for letting me rant!
I totally understand your frustration with the psychiatrist’s office. From a family member’s experience, there are no exceptions for missed appointments. It seems so cold and uncaring.
Also, due to the brain tumor and radiation effects, it will be harder and harder for your husband to keep track of things. My father would spend hours on his computer, typing away; and the result was just nonsense. He couldn’t count change, which drove my mother nuts. The radiation took these skills away; it wasn’t his fault. And he didn’t do it on purpose.
One thing I would have changed was getting more help sooner. My father wanted to try everything imaginable in terms of treatment. He never accepted that the outcome might not be good. It wore everyone down. Of course, that was 25 years ago, and treatment options have changed, I’m sure.
My thoughts are with you constantly.
That’s VERY UNCARING of them not to be willing to work with you and your H after 20 years! I would have expected a smaller charge or none, given the circumstances. You and your H are in my thoughts!
I think the issue is that you were dealing with a receptionist, a person with no power to change anything. They are not empowered to make exceptions. They were probably told, no changes to policy.
If you want to appeal and move things up the chain of command, you could try. But depending on how the office is owned, there may not be any way to change a charge.
It does look very uncaring.
As far as your sil, I’m guessing that you are trying not to change her either. Vent away but it looks like you aren’t looking for solutions but just trying to get your frustrations out?
Idea? Let SIL know at a time later in the day- for example 8 PM- I will update you or others. Limit it to once a day at the end of the day. This way they are not bugging you and you accomplish informing them.
Have you asked for the psychiatrist to call you back and explain the circumstances so you can get an earlier appointment? I guess I would.
Maybe they feel differently when they come from friends, who objectively have less stake, and are asking out of concern for you (and your husband). It’s a little easier for you to be “detached”.
Your SIL’s love, engagement, concern, and fears very closely mirror your own - and you may resent having to put all those uncertainties in words for her, when you’re trying to not even think too much in those terms, so you can hold it together?
Sounds as if she herself is desperate to find at least a little bit of positive each time.
I don’t know if you even have the extra strength, but recognizing and anticipating her “need”, maybe you could make a mental note during the day when even the slightest little positive aspect happened, and how you would describe it.
Then, when the inevitable call/text comes, you’ll be ready with whatever little fact/anecdote that just so slightly elaborates on “a good day of therapy”, e.g., whatever he attempted for the first time, or that it’s the first time he managed to pull through x sessions, or even just a comparison to how less productive things went only a week ago.
@DigitalDad 
I think you nailed it! Hopefully there will be something positive to share with her soon, and I will think how to express it to her where she can have a bit of hope. Thank you.
@deb922 I am looking for advice and to vent. Believe me, I am reading each and every reply and seeing how to apply them to our situation. While some advice is excellent, for reasons unknown to others, it might not work for us, or maybe I have already done something similar, or the same.
Fwiw, I think you’re a pretty awesome person. To be able to take on this conversation in order to walk this road with someone else whose love for your husband is so great will be a gift to both of you and says a lot about you.
I suspect that as the person living this, you are far more adjusted to the reality of the situation. (And this doesn’t even begin to address what this means for the day to day for you.) It sounds like your sIL is still operating in a bit of a fantasy land - perhaps her way of coping? - and I suspect that conversations with you are very stressful for her. You chip away at the narrative she desperately wants, and it’s no surprise that it annoys you. Not “getting it” really diminishes your feelings, your efforts, everything!
It’d be great if you could get her to come spend some time – she could get level on where things are, give you a bit of a break on the care-giving, and give the two of you a chance to connect in a way where she isn’t so needy (not sure that’s the right word) when you are already tending to everyone’s needs except perhaps your own.
In any case, you sound exceptionally wise emotionally. 
Taking a nod from @DigitalDad post, maybe you could bookmark in your head a moment during the day that is a positive moment unrelated to your husbands physical status (which sounds like is often at this time NOT a positive moment of the day) and share that with SIL.
A joke you shared. A laugh he had when watching a show or listening to a podcast. A story of the past he might have shared. She is looking for her brother - the brother she knows so well - and these moments may give her some contentment.
As said above, he is still the same man he was a few months ago in so many ways .
I also think it’s perfectly okay to pause before you text back and not take every call. And/or respond with “I’m sorry, but I am just not up to going through all the details right now. I am tired and feeling low. But I will be sure to let you know right away if we get any significant news or there are any significant developments, good or bad.”
That kind of message can gently remind your SIL that YOU are burdened, too.
Many hugs.
My 20 year old has therapy sessions through zoom. He ended up missing some appointments I didn’t know about because his head was not in a good space. I was charged for some ($175, out of network), but I ended up getting permission from my son to get email reminders. There was a time when there was no way he was capable of managing appointments on his own. He remembers most now, but when things were really dark it wasn’t possible. 20 years, I’d be mad at the office too.
I think you need to talk to your SIL, maybe show her the ring of caretaking chart. I get it, my husband’s sisters are 7 and 10 years older, their mom passed when my husband was 14 (very fast cancer, my husband was out of the loop, had no idea his mom was dying until his sister came and got him from school, letting him know she passed). It is different than just a sibling relationship, his sisters were his surrogate moms, albeit teen moms and all that goes with it. Let her know that you understand where she is coming from, and you know how dearly she loves her brother, but right now you need some positivity. You need care as well.
Re appointments…our providers send a LOT of text and/or email reminders. Can you have your contact info added so that you will receive notice of when these appointments are. I had a recent appointment and was asked to confirm at least 5 times…I’m not kidding. If this provider doesn’t send notices, perhaps, you can call and clarify yourself.
I’m so sorry this office isn’t more understanding.