Hi Melly1
How are you? , my daughter has complex health needs and autism, so quite a lot going on. They didn’t diagnose ME due to everything else having the potential to cause chronic fatigue.
I am having a huge headache with PAs at the moment, do you work full or part time? I’m thinking I need to go to work part time for a break !!!
Feel free to send me a private message if you would like to chat more x
Hi, thank you for your reply, how are you? Do you also care for a child / parent?
Yes we have had all the assessments done, my daughter does have 2 PAs and one that covers as and when needed. However, my long long long weekend was problems with PAs!!
Hope your ok
Clare,
I hear you totally and share many of the same worries and sadness. It’s hard work being a single parent on top too, think we just go through the motions day and night. Feel free to private message xx
Hi Sally, I am doing good, hope your day is going well. I dont have anyone I care for right now. That must be frustrating when the PAs are the challenges.
Hiya Sally, I understand completely about feeling lonely when in the caring roll. Do you manage to have any hobbies or activities just for you? I’m struggling at the moment to enrich my life.
Hi Sally, I look after my 16 year old son who has autism and some health problems. The last 6 years have been really difficult as it became clear my parents weren’t coping for various reasons and I had to do more and more for them. Lots of traumatic experiences re my parents for some time. Both of my parents have now passed (my mum very recently). Taking care of my parents and my son was very very difficult and has taken a huge toll on my health.
Hi Jane,
I don’t really have any hobbies, I keep thinking of making some time and going back to the gym, but motivation, confidence and energy are lacking - a lot!!!
Who do you care for ?
Sally
Hi,
I am so very sorry to hear all this especially the passing of your parents 
I too look after my daughter and my dad, please reach out if you’d like to chat more.
Sally
Thanks Sally. Likewise, feel free to reach out any time.
I’m just wondering if you are members of any special needs charities. We are members of an autism charity which organises events for young people and their parents, grandparents, guardians etc. Some of their sessions are specifically for older children and young adults. They have sessions for adults carers to chat with others and they provide courses on specific issues to do with autism. We find being part of the charity really helpful.
I care for my husband, who only has the use of one hand, so I have to do everything for him. He is sleeping more and more, it’s very quiet here. Motivational is hard to find I understand that, some days I’m just on remote. The sunshine helps me, do you enjoy the garden?
I hope you’re well - I just noticed you posted for the first time a few days ago. I don’t know if you’ve already shared a little about yourself or if you’d like to, but I wanted to say “hello” and welcome. From the helpful points you’ve raised with others it sounds like you’re very familiar with Carer’s Assessments and Continuing Healthcare packages.
Apologies if I missed your intro somewhere - I’m only in and out of the forum these days, but I wanted to say Welcome and see how you’re doing, given all the helpful comments and support you’re giving to others.
@Melly1 @Charlesh47 FYI
Thank you for such a kind welcome, that’s really made my afternoon.
A bit about me. I am auser researcher in the NHS for and have been in and aroudn the NHS for about 15 years, mostly around accessibility, making services and information actually usable for disabled and older people. That’s where the Carer’s Assessment and CHC knowledge comes from. I’ve spent a long time watching families get tripped up by how needlessly hard the system is to navigate, and it stuck with me.
I’ll be upfront about one thing, because I’d rather you heard it from me than wondered. Alongside the NHS work I help build a free tool called Senso that flags accessibility issues in a property listing, for people house-hunting with access needs. That’s honestly how I ended up so deep in DFGs, OT assessments and the Care Act. I’m not here to sell anything though. I just find this stuff worth talking through, and I take as much from places like this as I give. Happy to point anyone to it if it’s ever useful, no pressure at all.
Some of it’s personal too. I’ve been on the patient side of the system as well as working in it, and that changes how you notice the gaps. Thanks again for the warmth, glad to be here.
Hi, how are you ? I’m sorry for the delay in replying, life gets so so very busy ,
I’m not in any charities for adults with autism, but I would like to look into this. Which ones are you in ? Xx