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.

The disability due to hsv1
I thought the symptoms of hsv1 were cold sores around the mouth?

How old is your child? Do you think it's just fear and maybe if you show her how to care for your child she'll gain confidence and come round? I know when my son had an NG tube I was terrified and reluctant to be involved with it but after a few weeks I felt confident enough but initially I was scared of doing it wrong so always got my husband to use it.

So sorry, I can't imagine having a parent like that. My saint of a mother took my dd in with a severe eating disorder and nursed, coaxed and cajoled her back to health - dd has autism, anxiety, depression amongst other conditions so she's not easy! I didn't have the patience, was at my wits end. Just wanted to speak up for the amazing grandmothers

@lentilsforever

It varies but in newborns it can even be fatal.

Yanbu. Your daughter isn't her idea of a " perfect " grandchild so she's checked out .
Maybe she can't give childcare on her own , but she could be there to support you, maybe share the load.
Do your ironing or whatever, visit regularly make you a cup of tea or a meal.
Mumsnet are not very family orientated despite being for mums.
Motherhood goes beyond the childhood stage in my opinion

It's amazing how many parents of children with additional needs have this problem. I do wonder if there's a subconscious thing of "well this one is flawed, so it can't be one of mine". It's extremely hurtful.

It's made us focus on teamwork in our marriage, because we're all each other have got. But I imagine that is also very difficult in your circumstances.

are there any support groups op?
any other relatives at all?

@ALmomma

It’s more the emotional side of things, I’m struggling with the diagnosis. The childcare I can understand, but she doesn’t actually come round to see her or phone to see how she is, or how things are in general. I just couldn’t imagine my daughter struggling with something like that and not dropping in to see how things are.

That is awful. I would probably cut off all contact with her & not let her see any future gc either (if relevant).

Sadly I think the type of care she was expecting to give is now very different. Looking after a child with a disability is very different, she may worry she’s not up to it physically or emotionally, fear she may do something wrong eg with medication or manual handling, have no experience of caring for a child with high medical needs.

Do you get professional help? Carers, respite?

If you’re feeling down a lot this could also put her off helping regularly, especially as it’s been said by relatives you bring her mood down. A harsh thing to hear but possibly true, implying she can’t provide the type of emotional support you need right now, without her own mood being affected.

Can she help with the younger children instead?

Can you seek support from other families in the same position, from support workers, professionals?

Im sorry you’re having such a rough time but I don’t think you should try to hold your mum to promises she made when the situation was so very different.

Lentilsforever - you can carry the cold sore virus but be asymptomatic of it. My DD was in a bad way for many weeks because of it. We still don’t know how it happened.

Thank you all for your replies, it’s really appreciated x

@ALmomma

Lentilsforever - you can carry the cold sore virus but be asymptomatic of it. My DD was in a bad way for many weeks because of it. We still don’t know how it happened.

Thank you all for your replies, it’s really appreciated x

Sounds awful

But how did a debilitating life long disability result from it?

Genuine question

My ds had it as a newborn, was in nicu and scbu for 7 weeks and was fighting for his life at one point - we were told he had a 50% chance of survival. He pulled through but the infection was in his spinal fluid and in his brain - he had follow up appts for 2 years as there was a high chance of brain damage from it. We were incredibly lucky but in young babies it is a terrible infection with a high chance of either death or serious side effects.

Hsv can cause encephilitis and brain damage in some children. But risk factors are usually when Mum catches it for the first time during pregnancy or baby catches it from Mum in childbirth. Generally babies who catch it after birth only really get serious complications if there are other risk factors eg allergies / low birth weight etc.

I don’t think yabu. I can’t imagine leaving my dd to deal with something like this on their own.

@Ozanj

Hsv can cause encephilitis and brain damage in some children. But risk factors are usually when Mum catches it for the first time during pregnancy or baby catches it from Mum in childbirth. Generally babies who catch it after birth only really get serious complications if there are other risk factors eg allergies / low birth weight etc.

Yes I thought newborns and young babies is when it causes long long serious disabilities

So I was wondering how old the OP’s daughter is? And whether she was healthy before and then got hsv1 and how did this develop in to a lifelong disability? And what was her grandmother like before?

Could you claim dla and use it to pay for rest bite? Lots of residential homes offer temporary care. It is expensive but worth it for the odd day/weekend/week.

Could you claim dla and use it to pay for rest bite? Lots of residential homes offer temporary care. It is expensive but worth it for the odd day/weekend/week

I did this with my dd at a local children's hospice when I was at a very low ebb.
Dd is not life limited but very high needs and from time to time my tank was empty. I would save the dla money up - the hospice care cost us 1.5k for a week. That's how desperate I was. But the care was first class and she loved it. And I got time to recharge for another few months. I had nobody at all to help otherwise. My mother was completely unable to help - dd was way too active and unpredictable - and needs 24 hour supervision. I slept when she slept.

Hugs op
I'd look for support elsewhere.

Parenting groups for disabled kids

Do they have anything to do with your child/children

Unfortunately plenty of GPs ‘talk the talk’ but don’t ‘walk the walk’ as GPs. It’s not OK and it’s understandable you’re upset and angry with your parentd. There is also an anti-disability angle to their behaviour.

If you can afford it, would seek counselling for yourself and access any free services available from the NHS or charities for parents in your situation. And/or seek out people online and in RL with similar situations or experience. For support for yourself.

If funds allow, also try couple’s counselling with DH to see if you can stay together and be OK, or if that’s not going to be possible work something out to seek to avoid a sadly common scenario where post break up you’re doing almost all the parenting and have no money.

When she said those things, she said them in anticipation of a child who was not disabled, doing the crafts and playing and trips and baking, etc, not the lifelong care of a child with significant needs. The fluffy, as seen on TV version, not the reality.

She doesn't want to admit that is the reason, so she's deflecting away from the 'Well, I didn't mean if you had a disabled child' by saying it's your choice and responsibility.

It's crap and I'm sorry she's like that.

@LunaAndHerMoonDragons

I don't think grandparents not providing child care is a moral issue, it's completely up to them how involved they are. I also don't think it's unreasonable to want support from your mum. Is she someone who talks about wanting to help but never follows through or could it be she's overwhelmed by the level of care your daughter needs?

I agree.

I also think that if she doesn't feel like she can help with your daughter she could perhaps help in other ways such as doing shopping or ironing for you as a pp mentioned.

It was awful lentils I wouldn’t wish it upon anyone. HSV encephalitis severely affects the brain. She was 2 weeks old when it happened and she’s now 3 and presents as a severely autistic child with some health problems along with it. She is developmentally far behind her peers - she is non verbal, doubly incontinent, takes seizures, extreme sensory disorder. We physically cannot take her out the door, she gets overwhelmed with light and sound and will refuse to wear sunglasses or ear defenders. That’s how disabling the cold sore virus can make a child’s life.

Thank you all for replies. I suppose I can’t force her to be interested, I just needed to vent as life gets so overwhelming for me and sometimes I just can’t see a way on going on, but I need to for my child. I’ll try social work and see if they have options available.

I’m so sorry