by
ALR » Mon Jan 07, 2013 8:27 am
My son uses a nebuliser daily. Often through the nights. It's been going consistently at night through Christmas and the New Year. He coughs and wheezes all night and needs help sitting up. He cannot break the respules, nebules and pour the medications into the nebuliser chamber. He wears a CPAP device to bed. It's set to 30 minutes to give him chance to settle as he often starts coughing, wheezing etc when it's switched on and takes time to settle. When he's up coughing all night, after giving 2 ventolins and a saline through the nebuliser all of which take time. Sometimes I will boil the kettle in his room for good measure. The steam helps. Most nights he will have a warm drink between the hours of midnight and 5am. Often this is repeated throughout the night. He falls a lot. If he falls he often breaks or bends a bone as he's got extreme low bone density and is hypermobile.
However, according to the DWP he does not need nighttime assistance. They are very welcome to come and sit in my home throughout the night. I can't guarantee them any sleep as sleep is not an option here.
Just for good measure. I get up to nebulise him and often pass out. When I'm dizzy I drop things. I'm not safe with a kettle. I can't carry two cups at once but there's no one else available to help. I've got up to help my son in the past and ended up in the bathroom sitting on a chair with my head down the toilet and it's not a singular event.
Unfortunately the people who read the claim forms etc don't seem to want to accept that life is difficult for carers and even more so for the people who are being cared for. I went for my medical last year at ATOS and the nurse could not read my BP not because she was inadequate but a electronic BP machine won't work on me. A manual doesn't work. My BP drops to abnormally low pressures. 38/30 or 77/22 ...I went for an angiogram and needed 3 people to attempt to take my pulse. It's not a one off. I've been told many a time I don't have a pulse as it's so difficult for people to locate as my heart rate drops so low....I was however put in the contribution based group of ESA. In spite of going for my latest melanoma biopsies, I was having ultrasounds for lumps in my stomach, they mistakenly thank goodness thought I had a tumour in my heart and I've had breast lumps removed, I'm on 8 weekly monitoring for the melanoma. I'm a patient at medicine for the elderly, I have a hernia and tears to the oesophogus through constant vomiting due to my primary autonomic neuropathy and I have an abnormal spine....but according to the DWP I'm fit for work. I'm presently filling in forms for income related ESA. I wouldn't mind but I had a brilliant job. I managed an OFSTED inspection with an abscess on a compacted wisdom tooth having just had two bouts of surgery following cancer. I didn't want to give up my job, the goverment department that employed me played the health and safety card....Now I'm supposedly eligible for work but not fit enough in reality to get behind the wheel of a car or travel on a train or a bus to get there. Walking is not an option.....As I say, the people who make the decisions and decide the rules have no idea of what life is like for some of us.
