Caring for a Parent While Coping with Bladder Cancer
Read Part 1: Who Cares for the Caregiver?
I was exhausted and run-down. I hadn’t stopped to slow down in all the time my mum was in the hospital. If I am honest, I really didn’t think I would have anything left in me. But then I saw my mum's face, almost childlike, and the words came out without thinking, "Yes, go on then, I’ll take you home." And that was that!
Becoming my mother's caregiver
I had to step it up, despite feeling like rubbish because of my own health challenges stemming from bladder cancer. I had to become my mother's caregiver. So, how did this work out? With a lot of stress and determination, I think, as well as a few giggles along the way.
The first few days as a caregiver
The first few days were all about sorting out care packages, occupational therapists, medications, and incontinence products. Then, more medications after the first delivery wasn’t right, changing incontinence products, and swearing at the dog after he decided he was sleeping on the sofa, not me, and growling at me every time I went to move him! When I finally did move him, he went and pooped on the hall carpet to show his displeasure at being evicted off the sofa! The list goes on and on. (I did manage to work out a system where I would take him into the kitchen, give him a treat, and then race back to the sofa - hahaha!)
Helping her shower for the first time
One of the things I found quite daunting, even though I had been a professional caregiver, was seeing my mother in the nude! For her first shower, I helped her walk, with her frame, to the bathroom to give her a shower. I sat her on the toilet to undress her and had two dignity towels for her, one for the top half and the other for her bottom half. Off came her sweater, followed by her bra. I passed her the towel which she then folded up and placed on the radiator. She did a similar thing with the bottom one, too. So, there she was. The woman who gave birth to me: naked as the day she was born and not giving a damn about it (I, on the other hand, was now scarred for life - ha!).
Caregiving is stressful and overwhelming
It has been eye-opening and, if I am brutally honest, totally overwhelming! The amount of stress that our caregivers have is enormous. Being a carer is like you step out of your own life and you just live in a bubble. Your every thought is about the person you love. Are they safe? Can you help them at all? Are they comfy enough? Do they want a drink? Something to eat? My poor mother was almost drowning in cups of tea. Is the TV on the right channel? Can they hear it okay? Then eating - trying to make a sandwich not boring and having to think outside the box. I had to ensure that her diet was in line with her diabetes and low in potassium. You will be amazed at how much potassium food stuff contains. So, everything had to be cooked from scratch. Was it okay? Has she had enough? Did she want to put her legs up for the afternoon?
Focusing all your energy on another person
Looking after someone else is incredibly hard. In those moments, you forget about you, your aches and pains, and pull strength from somewhere (no idea from where) as this person you love becomes your main focus - even, at times, to the detriment of your own health. I remember texting my best friend as I didn't want anyone else to know just how hard this all was. From the moment I woke till my mother went to bed, I was the chef, personal caregiver, cleaner, shopper, appointment sorter, and prescription sorter outer.
Exhausted to grateful to be able to care for her
It was relentless. Please don’t get me wrong, I wouldn’t have changed any of it. I have the privilege to help to care for my mum, some people don’t get that. My mum said one time, “I have made you ill by making you look after me.” This broke my heart. I had to reassure her that she hadn’t made me ill, I was ill anyway, and that I wanted to be here, to help her. I said that even if she sees me roll my eyes, it’s only because I’m tired; it’s not to her (my facial expressions always get me into trouble and I swear I get it from my mother!). My mum ended up back in the hospital a few days later. She stayed there until the 16th of December when she went to a care home (half an hour away from where she lives).
I picked my mum up on the 6th of January 2020 and spent another few weeks with her. I again became her carer, sorting out immediate actions, pads, foods, etc. I did all this while feeling utterly awful myself, coughing, and passing out. Caring for someone takes over your life. They totally rely on you! And it's hard - emotionally and physically exhausting, even if you're not ill yourself.
Grateful for the nursing staff
I don't regret taking care of my mum; we are closer than we have ever been. It also gave me an insight into how our NHS service works in the UK. SLOWLY! But it does work, and I'm so grateful for all the nursing staff who took care of her in the hospital, and the staff in the Care Home she stayed in, as well as the carers who look after mum four times a day, ensuring she has taken her medications and preparing her meals and tidying her house. I'm grateful to our district nurses who come out to give my mum her insulin, twice daily.
My mother is doing better
My mum is doing well at the moment. She has carers visit her four times a day plus district nurses who visit her twice daily, and they keep an eye on her blood and diabetes, and they speak to the other carers daily to make sure that everything is okay. She has had a few falls, which is one of the things we were and still are worried about. She wears a pendant which she can press and speak to someone who will be able to help. It doesn't stop the worrying but it does give a bit of reassurance that she is being looked after.
The right to live in her own home
She doesn't want to go into a care home permanently because she is a proud woman who wants the right to stay in her home for as long humanly possible, AND she loves her dog, Buster, who would have to go to someone else. We all deserve the right to live our lives the way we want to live them.
Have your views towards bladder removal changed since you were diagnosed?