Expecting GP’s to help with disabled grandchild? AIBU??

[ALmomma]

Basically my oldest daughter is severely disabled due to a HSV 1 virus which has had such a lasting impact on our life, I had to give up my job to look after her full time and it is taking its toll on my marriage I can’t see us being together much longer. Due to the severity of her needs DD will need lifelong care. When I was expecting her my mother always went on about how she was looking forward to being a grandparent and couldn’t wait to do things as a family, even said she would watch her so I could work etc. Ever since she’s been diagnosed with her disability she’s done a 180 and basically said she did it on her own as a single mother and basically just to get on with it. I get she is entitled to her own life, but I just don’t think it’s right morally to not bother with your grandchild who needs extra help. AIBU? Maybe I’m just being too sensitive? I don’t know. Thanks for taking the time to read.

I'm so, so sorry for you and your little girl. How heartbreaking. I can't imagine how desperately exhausting and lonely you must feel right now while you're fighting for your child.

OP, so sorry you and your DD are going through this without much support. I think lots of GPs fail to engage emotionally with their GCs. I echo what others have said; try and find a counsellor so you can vent and release your emotions in a safe space. See if there are support groups locally. Your DH might also benefit from counselling. I know you love your daughter very much but you must also hold some love and kindness for yourself. Maybe your DM is too overwhelmed or just feels uncomfortable. At least you know you cannot rely on her or your father. Focus on what you can do and hopefully you will find people you can rely on.

I found very little support when my child had higher needs. He can now talk and is easier to look after. All the support and help etc I had always assumed my family would provide, just didn't happen. I desperately needed a break.

OP, I understand how hurtful this is. On another subject, are you getting respite services? You should be entitled to carers assessments and respite.

Contact the Eden Dora Trust.

They can offer support to families regarding Encephalitis.

I found my family to be scared of disability. Its a lonely place to be

I’m so sorry to hear of your predicament. Well done for finding the courage to not only recognise but try and address this situation.

I think we all (I certainly did!) have fantasies about our lives post children. We see the family unit - strong and connected.

I believed having my parents first Grandchild would mean something priceless. Unfortunately and with time, it’s necessary to accept not everyone thinks like us and often, people are rooted in fear, not love.

My child had a tracheostomy, vent and feeding tube. For 9+ years. Thank goodness, he is now healed lung-wise but still needs the tube for feeding, as he is orally very averse.
Believe to this very day- neither of my parents have tried or even offered, to assist medically.
Even now that I can finally leave them with him - I’ve asked and shown them how to feed him but they are unwilling. They ultimately, are scared. Which is sad but I have come to somewhat understand.
Once DS was discharged home, we were offered respite - I declined, Superwoman complex. Huge regrets.

My advice - speak to your local CCG - express that this is emotionally challenging to you, you have no support and see what they can offer. You will need help and there are some amazing Carers/healthcare assistants out there (we have overnight Carers and day Carers so that he could attend school.)

You should be offered respite - request a social worker through local authority as they can grant hours/funding to support you and your child live a good quality of life.
Once the support is in place - make sure to make time for yourself. Plan small, regular things for yourself -
E.g stretch your body, go for a walk, coffee. What did you enjoy before having your child?

BE ABSOLUTELY SELFLESS IN RECOGNISING YOU ARE A PRIORITY.

Make peace with the way things are.
Choose your battles - if you believe your parents can change, talk to them.

Otherwise - the focus is on getting all the help needed in order to support you in raising your child.

hugs

You can’t leave the baby. I’d tell your sister your pregnant and see what she says. I wouldn’t dream of asking my sister to travel with a one month old, you’re also assuming an easy north and decent recovery which isn’t a given.