Poor prognosis

[fatherfurlong]

Hoping someone will read this and really just offer words of comfort. There is no answer…..
I have an adult child who from shortly after birth I noticed was perhaps different but being my first child I was reassured by health visitors that I must not worry.
That child is now 30 and indeed did have a health issues from being a toddler but was not diagnosed conclusively till 15. We and she had already adapted to her issues and we were always as honest but did everything by drip feed only responding to questions as she asked them. When the diagnosis came at 15 and the prognosis was poor. It was a degenerative condition and our child would probably not live beyond early 20’s. We carried on mobility, speech, feeding and swallowing, motor control has all got worse but our child copes well and is very brave and we just try and fill our time with lovely things to do.
At her last appt we saw one of the consultants (she is under several different teams) and basically he was very frank about her condition, told her to Google it when she gets in and of course now we are dealing with the fall out. Of course she is an adult and they treat her as such but emotionally she is like a child and has a learning difficulty.
She is now very anxious, not sleeping( our GP has prescribed a sleeping tablet). We have lived with her condition for all this time but this just feels like I’ve had the rug pulled out from under us. I just feel so sad about all of it and I try to reassure her everything will be OK but in reality it isn’t and we both know it.

I'm sorry nobody has replied to you. This board is pretty slow so you might get more replies on a busier one. I can't pretend to have any great advice because I haven't walked your walk but I just wanted to send you virtual hugs from one human to another. That's so rubbish that the last consultant has rocked things so much for your daughter. It sounds like the one day at a time approach of getting on with things and finding lovely things to do was working well for you all. Can you tell her that doctors always have to give the worst case scenario but that they can't see into the future and know for sure how things will be? After all, how many people defy the odds of how long they are expected to live? It sounds like your daughter has already proven them wrong in that respect. I'm not trying to minimise things, I hope it doesn't come across that way. All any of us can do is live one day at a time and try to find joy wherever possible. Perhaps a therapist or trusted person could help her work through her feelings, which are very valid, in an appropriate way for her to understand. I'm not sure if your family has a faith at all but I'll say a prayer that you find your way through xx

Thanks so much for your message. It’s disheartening when you post and you get no responses to something that is occupying your mind all the time & you lay awake at night wondering what you can do so getting your reply means a lot.
I know there is not much we can do except go through it with hope that things will improve, as you say my daughter has kept well for so long.
Thanks you. X

Do any of the medical teams have a clinical psychologist attached to them? You could also ask for a referral to liaison psychiatry if necessary. Is there a hospice involved? Does DD have capacity?

Yes, I requested a psychology referral and that is going to happen fairly soon I hope. There is no hospice involved and my daughter does have capacity.

@fatherfurlong You're welcome - I just really feel for you and your daughter. Life is so hard sometimes. Please reach out to those around you. It sounds like you've had to be so strong for such a long time. I am in awe of you, even though I bet you're just thinking that you've got no choice. I hope you and your daughter find your way again and are able to embrace the good parts xx

OP, I hope the dust has settled after your dreadful appointment.

We are in a similar boat with the prognosis for my ds although he doesn't have a complete understanding of it, it seems a lot of what is said just goes over his head. Like you, we try to fill his time with things that he enjoys but there are fewer and fewer of those left now.

I dread the appointments as they often send me into a downward spiral, at one we were told they wanted to do some tests to map his deterioration - so we said no thank you to that as there is no treatment anyway

I hate when at some appointments they asked him if he is sad or depressed, drawing his attention to that when we do everything possible to prevent it!

After any such appointment it takes a while to regain sone sort of equilibrium again, but I found that returning to a routine does marginally help.

As a parent i suffer psychologically a lot more as I can't destroy his fragile mental health by dishing out the full blown worst case scenario.

Happy to chat via PM with you some time, not many people in this situation and it can get very lonely.

No advice father but just wanted to add my sympathy. What a thoughtless thing for them to suggest

Many thanks for all your replies. My daughter is still very anxious but at least she is sleeping better with medication. They have now put her back on her old anti depressant which she didn’t have any problems with and have stopped the Amitriptyline. She is still saying very bizarre stuff but she hasn’t been tearful for over a week and has also a few things have made her laugh spontaneously which in itself has lifted our spirits.
We are still pursuing a mental health referral but that has become complex as I live in one borough but my GP is in a neighbouring borough so each team have told me the other team is responsible.