Hello, this is all new to me, I’ve lost my dad and stepdad, my dad to suicide in 1998 and my stepdad to a ruptured aneurysm in 2017, I coped OK with that, not good, but managed. But on the 2nd May my mum died from renal failure due to sarcoidosis, to say that I’ve never felt pain like this in an understatement.
I was her carer for 27 years, it all started in 1997 in an unofficial way, she had severe arthritis in both knees that caused them to fuse slightly bent, as a result she had frequent falls, I was a chaperone, but the next year after high school ended I became her full time carer.
The first 10 years were OK, until she was diagnosed with diabetes, after that her health started to decline, until 2021, which was the worst year up to that point, in February she went into septic shock, in hospital for 21 days, then over the next couple of months she developed sepsis twice more and cellulitis. She developed cellulitis 3 more times that year, then pneumonia and had a bad fall requiring surgery on both knees.
In 2013 she was diagnosed with sarcoidosis, I won’t go into details about it other than its a nasty autoimmune disease, for mum it had 2 targets, her lungs and kidneys, her renal function would go up and down, flareups would happen and her kidney function went down, after treatment it would rise.
But over time we noticed that each time it happened the rise wasn’t very high, in the end they didn’t go over gfr 35, until January this year, she had a fall on new year’s day, requiring surgery on her knee, but whilst in hospital she caught covid, that was the tipping point, her adrenal glands went into an Addisonian crisis, that they brought under control, but now her kidneys were now failing, she was in hospital for 7 weeks until she was moved to a care home in bognor regis for end of life care.
She was there for a month, the first 2 weeks she was almost back to her old self, her kidneys had found a way to manage on very low function, around 9%, but we were told that even a slight infection could be the final tipping point. She developed cellulitis in her left arm, which was immediately treated with antibiotics, but it had spread to her left leg, this was the start of the end. She started hallucinating because of the toxin buildup in her blood, she was terrified and I tried to do my best, it was awful.
5 days before she died we were told that when it became too much for her she would be sedated with the cocktail of drugs, anti nausea, a mild sedative, oxycodone and others I can’t remember. She never spoke again, even though I kept talking, she couldn’t have any fluids because her gag reflex had gone, just some pineapple juice applied to her gums to stimulate saliva to stop her mouth getting dry. The day she died all we heard was what others called a death rattle, I was sat holding her hand, my brother and sister were on the other side of the bed, we were silent, just listening, then silence, my beautiful warrior mum was gone. I broke immediately, as did my siblings, all I wanted was to bring her back, she was only 60, but she was gone.
I don’t remember the following few days, at all, I had to register her death, notify her bank etc, all alone, my siblings were very selfish people leaving all of mums care to me, and now dealing with the hurricane of her death on my own, but I did it. The feeling of not being needed was acutely painful, I still feel it, I know it’s only been nearly 2 months but it feels like a knife in my heart, I had to arrange the funeral alone and that hurt so much.
Now I seem to be stuck, I have to move as mum was the tenant of this property, and now I have to look for work, that’s fine, but the sheer weight of grief is making things so hard, mum was my hero, she battled hard her whole life, now living without her seems impossible, mum’s at peace, but how on earth do you move forward when all you want to do is fall backwards and stay in bed.
Thank you for reading this, I’ve read some of the others and can see I’m not alone, if grief is the price you pay for love then I’m happy to pay the cost, I just wish I could find a positive in my life at the moment.
Thank you for reading
Shaun prendergast