Chloe, I really identify with you and your partner's frustratio at apparently being left out of the loop about the state of health of someone you love. When my son was first diagnosed with cancer it was like that for me: he and my daughte-in-law didn't share what was happening until something big like pending surgery had to be disclosed. In those early days they got angry with me for telling friends and extended family about his cance; I thought I was reaching out for suppor; they saw it as sharing information that wasn't mine to share.
Now years later the cancer has returned for the third time, this time incurable, and the experience around sharing information is entirely different. When there are new symptoms or a change in treatment plan my son shares the information right away. As you will appreciate from
your own current experience of feeling shut out, this openness means the world to me!! What has changed? I don't know for sure but I think their first impulse when my son was diagnosed was to 'circle the wagons': they would deal with this, beat it, make it go away. Now they have accepted that they can't do that: that every day ia about fighting back the cancer and they need a whole loving community to help them do that.
I'm guessing that your husband's parents may still be to some degree in denial about the MND. Talking about it makes it harder to ignore or deny. It's kind of an escape mechanism, a kind of magical thinking----'Let's not talk about it and maybe it will go away'. it's probaboy most likely to happen when the diagnosis is reallyfrightening because there is no cure and the prognosis suggests an increasing loss of control.
i think you're wise not to push your husban's parents too hard; they're going to need your help and support to get through this. Somehow letting them know that you're wanting to be there for them; ready to talk about what's happening whenever they are; keeping in regular contact with only a casual "How's Mom today?" as part of the flow of conversation----I'm thinking maybe that's all you can do for now. It's a "Wait,Watch and Wonder" stance which is hard to sustain because it feels like doing nothing but in fact is doing a lot by respecting you in-laws pacing in facing a very sad scary diagnosis and prognosi.
I love it that you are such an active support to your husband at this difficult time! i hop your reaching out for help will prove fruitful. Take care of yourself too!
Mert