carer mum pleading for help for two years to help look after disabled child
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I may look ok to the outsude world because I put on a brave face daily for the sake of my child, but underneath that smile I am tormented with chronic pain.
I struggle daily because I not only have to manage my own condition, but I am a full time carer mum to Alexa who is 6 and has Rett syndrome, a complex neurological disorder which affects her ability to do anything for herself. I suffer chronic delibitating health problems such as endometriosis, Fybromyalgia, tendenitis in elbows, along with newly diagnosed chronic back pain daily and the repetitive strains from lifting a child who is 25 kg has worn me and my body down. This constant strain on me makes me so fatigued and in chronic pain. I am not diagnosed with disability because I can walk more than 50 feet but my conditions seriously impact my quality of life and dealing with such complex child takes it more out of me physically and emotionally. When i am sickly or exhausted I dont have the luxury of dropping Alexa off anywhere to recharge. ...I have to grit my teeth and get through it despite feeling on deaths door. I fill myself full of pills in order to get through each day and fear I will be burnt out sooner than later. If I am not fit then she goes into care which is very sad. Alexa cannot talk, walk or feed or play herself and needs 24 hr full time care due to her complex needs. She has epilepsy now and awakes during night at least three times or more and I get no sleep after 2am. She constant hyperventilates both at night and in day and needs feeding every 1.5 hours or else she has seizures. If i don't feed her for 2 hrs she seizes which isn't right as consumes me. I don't stop to take a breath and last few weeks we have been in hospital trying to get seizures under control.
I can no longer bath my child or get up stairs, despite me pleading for a carer who could use a stairclimber as I am not fit to use one due to weak ankles and hips. I struggle to get her up in morning because she is so stiff and my stiff aching muscles on awakening mean we struggle to move in mornings.
Am l am meant to continue dealing with this until I am at point that I can no longer physically do it.?Putting clothes on my child takes it out of me every morning. It takes two hours to get her ready. She is getting worse as I can no longer do daily physio which helped her be less stiff and now with epilepsy she is having seizures which upset the night and she has no routine and sleeps just when she can. I have never had an eve off (unless her dad who lives abroad visits) and cant visit friends or go out and I ebjoy any social activities in eve. I am single and can never have relationship or go yoga or anything in eve. No family can help me as they have health problems. This gets to me as I am suffering with no social life or anything and my physical impairments are getting so bad I have begged for help for two years from social work. I know other parents who have carers in regularly to give them much needed break and they have no health problems. I also know of parents who have carers who take their kids out for days out but I always have to push a heavy wheelchair about and it tires me. No one provided a hoist as they said Alexa could walk with support and Alexa has seizures and flops to floor and I can't get her up by myself there is no duty of care and both me and my child have been seriously neglected. I have asked for carers assessments for two years and self directed support but still not go there and there's always delays and meetings never resolve my urgent needs. Alexa is having seizures as nightly baths used to relax her and she is suffering worse than ever now and her needs should be addressed.
I have no normality in my life. Nothing to look forward to.. A weekly night off would recharge my batteries. Can no longer go on holiday or take break as too difficult on my own...No regular social life and can never get out due to never finding a sitter who can deal with such complex needs.
I am truly disgusted that people like myself are left to rot, suffer in silence and are expected to go on living like this. I have done a good job for 6 years and now I should get help if needed in order to keep my child stay home with me. I now fear for my health and worry about Alexa being put in care because there seems to be no help for people like myself. I was told its too difficult getting carers morning and night for when I need help...
The system sucks...no wonder people get depressed and suffer mental health problems and are forced to give up their kids to social care when nothing is put in place to support a single parent of a seriously complex child.
I need your help to change this. I will not let myself or my child suffer any longer. Please help me get the help I need to be a carer and mummy to my beautiful child who needs her mum more than anything.I am forever grateful for your help.
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