Anna Schurer spoke to a carer. Here is the carer’s story.
It’s night. I’m trying to sleep. I’m so tired. But a voice says, “What time is it?”. It’s half two, Mum, go to sleep. Half an hour later again, “What time is it?”. Mum, it’s night, that’s why it’s dark. Please be quiet and let me sleep. “Oh, okay.” Ten minutes later, “Mick, put the light on for me”. My brother Mick hasn’t lived in this house for over 40 years! Again, I calm her down. But it only lasts for a bit, and finally at quarter to four I give up on this night, get out of bed and start the day.
Lights on in the kitchen, I start preparing breakfast for Mum and start work on tonight’s meal.
Breakfast, a wash and a change
By five Mum has had a bed wash, has a clean nighty and incontinence knickers, and clean bedding. I’ve given her her morning medication and creamed her skin.
Having to roll her over and pull her up really hurts my body. But what can I do.
Mum falls asleep again. But I’ve folded up the sofa bed I sleep on in the sitting room, where she sleeps on a hospital bed.
The sofa bed I have now is a lot better than having to take the pillows off the settee and make a bed with them, like I used to do. But I can’t leave her alone; she’s incontinent (double) and gets so distressed at times. Also, she’s picked her nose so badly in the past she had to go to hospital to stop the bleeding, so if she’s awake, someone has to keep an eye on her.
And that someone is me, almost two years now. I put the laundry in the machine and start cleaning up downstairs.
Dad sleeps upstairs. He’ll come down about 6am, when I’ll help him put his support socks on and get his breakfast ready. He’s still mobile, but should use a Zimmer or walking stick as he has had a few bad falls recently.
A little bit of self-care?
Once Dad is settled downstairs, I go upstairs to shower and get dressed myself.
When I come downstairs, Mum is awake and has blood on her hand. Yes, she’s been picking at the rodent ulcer on her nose. Dad was watching television instead of watching her.
I’m so tired. Can I not even have a shower without something going wrong? I tell Mum off, even though she’s adamant she hasn’t been picking.
I need to get some shopping done today. I can get a lift from a friend up the road.
But last time we went, Mum dirtied her knickers, and it went all over the bed. She can’t help it; I have to give her laxatives to go, but even with them she’s not regular. I decide to risk it as I really need to fill up the fridge and the cupboards.
I clean upstairs. Tomorrow I’ll change Dad’s bed. We only have radiators downstairs and two lots of bedding would be too much to dry in one day.
A knicker change, and Mum can have her lunch. Mum, you need to drink more, you hardly touched your tea or your water.
We have two sippy cups on a table next to her bed. She can reach them and have a drink by herself, but recently she forgets to drink
It’s part of having vascular dementia.
Vascular dementia is devastating
Mum forgets things. She thinks she’ll get up later on, when in fact she hasn’t been on her feet or even sitting upright for almost two years now. She decided one day she wasn’t gonna risk falling and would just stay in bed. And that was it. We tried all sorts, but she never stepped out of bed again.
Sometimes she sees things or people that are not there.
But at least she remembers people around her and is content with her life.
The day goes on. I manage my shopping. I’m away just over an hour and when I come back her knickers are still dry even. She forgets to wee as well recently.
Tea is just before 4pm, and she loves her chocolate dessert after. She never used to want sweet stuff, but since all this her tastes have changed completely. She needs me to feed it to her; she can’t handle a spoon anymore. And her food needs to be soft, as she doesn’t tolerate her dentures.
Reimbursement is minimal
I had to give up work to look after her. So instead of a reasonable income, paid holiday time, weekends off and being able to save for retirement, I now get carer’s allowance. It’s a 24/7 job, no holidays. And for that I get reimbursed £81.90 per week. This is supposed to cover 35 or more hours looking after her per week. That’s £2.34 per hour, and 133 hours without reimbursement. I also gave up on my own health.
I have rheumatoid arthritis, a hernia and other problems. But I can’t have treatment, being so tired my immune system is too low for the infusion I need for my rheumatoid arthritis. If I do need to go for a medical or dental appointment, I have to ask a friend to come and look after Mum. I have two friends who will do this.
I can’t ask my brother; he won’t help. All Dad can do is phone me when I’m out, to let me know Mum needs a knickers change. I’m sore, and so tired. I don’t want to lose Mum, even the Mum she has become. But I see her going downhill, getting sores and retaining fluid. She bruises so easily now, even with just rolling her on her side to clean her.
I’m tired, and feel alone
There’s no help really. GPs don’t do routine house calls. So, if there’s a problem I need to describe what’s going on, take pictures, and email them to the doctor, and then hope for a prescription or some advice. Mum needs a cardiology appointment but can’t get to the hospital, as ambulances are only for emergencies.
The hospice has offered me a place at a ‘carers’ coffee morning’, but then I’d need someone to cover for me while I’m gone, and since the bus services were reduced around here, how would I get there? So that’s not happening. I’m on my own.
Oh, time for Mum’s inhaler, and her anxiety medication. I’m gonna try to get an hour’s sleep in my own bed before making Mum’s Horlicks and getting her settled for the night.
And then please, let her sleep, so I can sleep as well.
