I’ll write a short summary and more detailed version further down.
I’m trying to raise $1600 per month to pay for a care giver for my wife which will get 40 hours of care per month. My wife has a rare autoimmune disease called paraneoplastic syndrome. It’s caused by the body detecting cancer and creating antibodies to kill the cancer. Unfortunately the antibodies also damage neurons in the brain and causes brain stem inflammation, collateral damage. It’s difficult to diagnose and very difficult if not impossible to treat if not diagnosed quickly.
4 years ago I went from being the sole breadwinner to full time care giver for my wife literally overnight. It was then a long and difficult battle to help my wife regain a very small portion of her life. We spent the savings and sold the house and now live in rented accommodation with little left in the bank. We are in the catch 22 of catch 22’s. We need money for rent and bills that we pay from savings and will do until the savings run out. I sometimes manage to do 1 or 2 hours work per week online but for me to work more we need someone to care for my wife which we currently can’t afford. That’s why I’m here. It costs $1600 per month for a carer for 40 hours per month. That will help us turn things around, I can then work more and get a carer for more hours and then we won’t need donations. We don’t have any family close by that can support us, I’ve been providing 24/7 care on my own for 4 years.
More details – 4 years ago my wife became sick, after feeling a bit off for a couple of weeks she started vomiting all day, she was so dizzy she could barely stand, her vision was troubling her, she was sensitive to light. The local doctors wouldn’t see her in person as they said due to the pandemic they were only doing telephone consultations. After several visits to emergency care with them basically only ruling out being pregnant and with no further diagnosis my wife’s condition continued to deteriorate.
I took sick leave to care for expecting I would return to work when she got better, neither of us had any idea that 4 years later I would still be a full time care giver and we would be in this position.
We were advised by the local doctors to pay to see specialists privately as that is the only way my wife will get diagnosed quickly. We saw more than 20 different specialists each time being told they would see it through to the end, only to be told on the follow up visit they don’t what to do and pointed us to another specialist.
Month by month, my wife’s physical and mental state changed considerably, she could no longer open her mouth and jaw more than ½ inch, she had double vision and couldn’t move her eyes sideways, she could only walk slowly and with me holding her up and she had lost a quarter of her body weight and she was slim before she was sick and she was having panic attacks constantly. By month 4 we fortunately found a doctor that took her seriously and diagnosed her condition but told us straight it’s very rare and difficult to treat, especially after the first 1 or 2 weeks of symptoms. He also found significant inflammation of the brain stem which was causing increasing damage. The doctor said treatment had to be in a government hospital, which we were fine with, but will take time to get her admitted.
Month 5 she finally gets into hospital and in month six they administer steroids to reduce the inflammation of the brain stem.
By month 12 and several hospital stays later, the brain stem inflammation had gone due to the steroids but the major symptoms remained. My wife could only open her mouth about ¼ inch by this time, could not mover her eyes, had double vision, had developed severe pain in the neck, back and jaw and had difficulty walking.
We paid for advice from the leading specialist on my wife’s condition and he wrote to the government neurologist advising chemotherapy and Rituximab. The government neurologist, for unknown reasons refused and said if weren’t happy we could see a different neurologist but would have to join the back of the 48 week queue to.
So we searched and found chemotherapy and Rituximab treatment abroad, we knew it would be expensive, would be a very difficult to travel (I won’t describe the journey here but it was one of the most difficult things we’ve ever done) and may not even help but we had to try. So we sold the house and spent 18 months abroad getting treatment.
The result now my wife completed chemotherapy and Rituximab is that my wife’s vision has improved a little bit so she can read again, it’s difficult to read but this has given her a world she can be in. Even though my wife’s quality of life is only a fraction of what it used to be, we have to be grateful that the treatment gave her some life back, without that it would have been unbearable. Her vision is still double, and she can’t move her eyes sideways, she still can’t eat solid food or open her jaw more than ¼ of an inch and is in constant pain, we’ve tried every available medicine and treatment for this. My wife still needs constant care, she has panic attacks even if I need to pop to the shop and needs help with everything. We’re hoping the chemotherapy and Rituximab will stop any further problems developing.
So that’s our story and why I’m here, on a website I never thought I’d need to use.
There’s so much more to write about the past 4 years and I really want to do it when I can. It’s not a nice story, it’s more like a horror story but maybe if people donate I can thank them by telling all of it one day.
https://paypal.me/needcaregiver?country.x=GB&locale.x=en_GB