Whenever I turn up to an appointment with my adult son or teenage daughter people are always shocked. I’m in a wheelchair, surely they should be looking after me? There was even a time when my daughter was going for a scan and the nurse thought it was me that was the patient. She was a bit taken aback when my daughter jumped on the bed. I can barely look after myself but here I am still taking care of my disabled children.
My son is quite able and he is much better at coping with things than he was when younger. But, he still needs a voice, he cannot go up to a receptionist and say his name for his appointments. Sometimes he has difficulty in expressing himself to a doctor too, but lately I’ve found that once I’ve got him over the first hurdle and took him to the door, he will go in alone and have his appointment. Sadly, this hasn’t been to his advantage. He has an ongoing health issue which isn’t being addressed properly and the GP hasn’t been able to help. I think mainly because he’s not telling them what is wrong and they are just going by his records. He went in for some eczema cream and came out with an inhaler. I even called the GP before one of his appointments but apparently nothing was noted down and he still didn’t get what he needed. Yup, it’s not quite working. So, I’m still needed.
My daughter also has communication issues and she won’t go anywhere alone. This week she has an MRI, before she goes in she has to sip a drink to help them see her insides properly. We’ve talked about everything in detail but her anxiety is already through the roof. I will have to sit with her and keep her calm. The nurse will speak and I will repeat it for her. I’ve told her that when she goes in for the MRI I won’t be allowed in but she has to listen carefully to everything they say. She’s had an MRI before so I hope she will be okay. She doesn’t want to be sick anymore so we need this appointment to go well.
She’s 17, so the adult hospital are okay with me being with her. She could still go to the Children’s hospital until she is 19 because of her Autism. But, the last time she went, with her Dad, they were told by several staff that she was a bit ‘old’ for the Children’s hospital and she took that on board and now refuses to go. Her neuro consultant and gastro doctor both discharged her without consulting us as soon as she turned 17.
I Am a Disabled Carer
I am physically disabled and in constant pain, but I am still a carer. When my son needs my help I’m always there. I have to keep him calm when he’s overwhelmed, I have to make all his appointments, and assist him on many of them. He’s started going to the dentist by himself, it’s just around the corner. They will phone me to tell me of any treatment he needs because he doesn’t converse with them. They know who he is by sight, I just hope they don’t change the receptionist! I have to speak on the phone for him (unless it’s his Dad calling and he feels like talking to him.) I do his washing and cooking. He keeps his bedroom clean and showers regularly. If he gets sick, I become his nurse.
My daughter is very sick, and I spend some nights getting up several times to help her. She has a lot of medical problems and some she can cope with and some she can’t. I help when she can’t. I don’t find it easy, in fact I find it extremely hard and painful. And the lack of sleep makes me feel worse. But she’s my daughter and I have to help her. Her problems are personal and as a teen she no longer wants help from Dad, although he did help out when she was younger. I’ve shown her how to do most things herself, she takes care of her catheter bags, both day and night.
When she goes to hospital I stay with her. I sometimes feel like I’m in the way being in a wheelchair, but I’ve started to change my perspective on that. I can move if they want me to. I can even stand if they need my wheelchair out of the way. (I just can’t walk anywhere.) But she needs me to keep her calm and it’s much better than having her scream the place down. I worry about when she reaches 18, but as she is disabled I will continue to be there for her and they can’t stop me.
I’m Still a Wife and Mother
Sometimes I lose myself in my disabilities. I long to be the person I was before I got sick, I long to be able to walk and drive and do anything without pain. I long to be able to walk in my own back garden, and get jealous of seeing people walking down the street. But it is what it is, and now I have wheels to get around. (I still can’t get up the back garden though!) I long to be able to sleep all night without pain, and wake up in the morning and be able to jump out of bed. I long to not have to swallow pills all day just to get through. I long to not have to spend hours and hours in a hospital ward having infusions which make me feel so bad, but keep me going.
But I’m a wife and Mother still. Before I got sick my life was devoted to my family and it still is. I would do anything for them and it’s because of them I stay. If they were not here, if they did not need me, then I would have no purpose.
It’s not a battle although it feels like it sometimes. I get overwhelmed by the amount of rhetorical hills I have to climb, but I don’t stop climbing. Maybe there is a peaceful place at the top where all my problems will float on the clouds and everyone will be happy and peaceful and free from pain.
I have other children, all of them need me to some extent. My youngest is just 12 years old and also autistic. I am currently home educating him because school just didn’t work for him. He wants to go to school though, so now I have another hill to climb.
I am a carer with disabilities. Some find that difficult to understand. I need caring for too. I am sick, I’m in pain. Some days I don’t want to move, some days I really can’t move. But when I can, I do and I will continue to help care for my family whatever it takes.
I don’t know why my life is so bad, not only am I sick and disabled but I have five children who all need extra help, and a husband who suffers from stress and poor health. It doesn’t seem fair sometimes.
But then I look at my family and I know that they mean everything to me and no matter what, I will do whatever I can to make this the best life ever for them. And then things don’t seem so bad, just different.
I always want to be there to support my girls no matter how old they are. I still go with my eldest to her heart appointments because there is so much history about her heart, her sister having the same issues and the doctors don’t always read the notes.
Just today I we were at the hospital for a check on my youngest girls hearing aid and she doesn’t speak up for herself. She’s only 15 so she’s still young but she sometimes doesn’t have the confidence. I am just glad when she gets discharged next year to the adult part she only has to go if she has a problem and not every year for a check up.
Good luck to Star with her MRI, I had the option of going in with my youngest for her MRI last year but she was OK to go it alone, she mainly just had to lay there.
You do an amazing job looking after your family as well as dealing with your own disability. xx
Well I think you do a bloody amazing job juggling everything alongside your own needs and disabilities. It also shows what a fab mum you are too.
I’m exactly the same with my two, especially with our youngest being autistic. He needs to have someone speak on his behalf at every appointment. With that said, I also have to with the eldest to some degree. He too shows autistic tendencies at times.
I hope you get some answers from Star’s MRI so that she can live life to the fullest again. Sending big hugs. xx
Your strength and resilience are amazing and so is your love for your family. Sending love xx