Hello everyone, I hope you are all doing well. I am new here.
I’m looking to connect with anyone who is experiencing rejection of their care position from those they are trying to care for. Any advice welcome and needed!
It was discovered by mistake due to another unrelated ailment that my 18 year old daughter had moderate to severe rheumatic heart disease, 9 months ago.
Open heart surgery was the only option, to replace two valves. 8 months following the diagnosis she was eventually scheduled for surgery, by which point a third valve had become impacted.
Her surgery took place at the beginning of January this year. Two valves were replaced and the third had repair work.
One week was spent in hospital. I was with her every day, although being 18 by this point, no longer paediatric I was not allowed to stay with her in the hospital and had to leave each day at 10pm.
The recovery whilst we were there was like war a lot of the time. She was in extreme distress and was understandably angry.
Her anger though caused her to be verbally aggressive towards hospital staff and one nurse stepped down from her position caring for my daughter and assigned someone different.
We returned home after one week and her physical recovery was rapid. Very mobile. You almost wouldn’t know.
Mentally she is not doing well. She spends a lot of time not at home and is staying with her boyfriend the majority of the time. She is very disorganised in her living space, very messy, and I find medication strewn around the place. So I have concerns that she isn’t taking it accurately.
She has missed a couple of scheduled appointments which are to monitor her blood work and repeat prescriptions, which is a great cause for concern.
I am aware that she is having unprotected sex since she left a (negative) pregnancy test laying around. This is obviously another major cause for concern for me. I now lease with her boyfriends mum so others are looking out for her when she is not home.
She allows me to attend most of her follow up appointments with her, although she won’t invite me in to the room with the medical team.
She openly makes it known that I am rejected to be invited in front of the medical professionals. As much as I am aware this is not about me, it obviously impacts me greatly too and I feel a bit humiliated when she does this.
I understand that she is attempting to exert autonomy and independence and respect her wishes. Although it’s very frustrating as it prevents me from understanding a lot regarding her recovery.
I have tried everything in my power to communicate with the various medical teams so that I have an understanding of her needs. Some are very understanding and forthcoming. Others are quite closed and cautious since she is 18, and tread carefully with sharing her medical information now that she is considered an adult.
She has recently been told that she should take long term, possibly indefinite penicillin to protect her from any step A infections. She is reluctant to engage with this idea.
I feel she has ptsd as a result of what has and continues to take place.
Following her latest appointment I took her to Oxford street to the shops. I noticed that loud noises such as cars beeping trigger her. She has an anxious and angry reaction to loud / unexpected sounds and the crowds were clearly frustrating her too. She has a very short fuse.
I have attempted to find her counselling, prior and since surgery, and had a very good therapist who specialises in medical trauma available to her, but my daughter has refused, suggesting she doesn’t need it.
Following the hospital stay I realised that I had my own very delayed trauma response and it took over a week for my adrenaline to come back down to base. I could barely hold a conversation other than within text messaging and have avoided face to face interactions. I noticed that my daughters voice when speaking loudly on the phone to friends actually triggered me into anxiety. I can only assume from the week in hospital when lots of shouting was taking place on her part.
When she isn’t home I spend a lot of time doing not much at all, as though my nervous system is somewhat paralysed.
I have now signed up for talking therapies to try and assist myself. Although I’m in queue to be seen.
I feel quite helpless to support my daughter. I feel rejected from being able to assist her and feel as though I’m walking on eggshells not to trigger any emotional outburst in her.
Since she is no longer paediatric I have come up against quite a lot blockades in order to ensure she is well supported and taking care of herself.
I have done my best to step away and allow her to navigate this process and be available when she wants my involvement and not otherwise, but I am very concerned for her well-being.
I have spoken with the rehabilitation teams about my worries. They were very understanding but seemed to be powerless themselves, with only phone calls to my daughter to check in with her as a resource.
If you have read up until the end then thank you very much and I’m very interested to hear if anyone else is or has experienced these challenges with caring for a teen.
Thanks again for your time.
