Mum got up 16 times the night before last. Yesterday, with just over two hours sleep, I felt like death warmed up. It may explain why both mum and I were unusually weepy watching the last two episodes of British period drama, Cranford!
Over the last week, I have had four sleep-deprived nights. I guess it must be like this for new parents, but they will be considerably younger than me. Without enough sleep, I get a headache which can last for days, and it makes caring for mum so much more difficult. More worryingly for me, insufficient deep sleep is a risk factor for dementia.
Mum not ready for sleep
My worst night this week started at around 10 pm on Friday night when, despite my best efforts, mum was still up and raring to go. I felt I had done well throughout the day, engaging and caring for mum, responding creatively to her questions and following her agenda attentively. Apart from one brief low, when she remembered her husband was dead, I managed to keep her happily engaged and distracted. It was possibly her calmest day since she came home.
As mum was still recovering from a urine infection, I decided that walking and exercise was out. On the two previous days, even our short walks to get an ice cream in nearby Porthcawl seemed to exhaust her. Entertainment needed to be seat-based, so we did a car trip down familiar country lanes which she recognised and enjoyed. We went to the farm where she used to buy her free-range eggs. The woman remembered mum, and mum remembered her. They exchanged social niceties. All good.
As usual, I used her short naps to clean, wash and cook. I managed to rearrange mum’s room so the side of bed she naturally gets out of now faces the door instead of a wall. The other side, that she’s fallen out of three times, is now against the wall.
I lose patience
After what felt like a good solid day’s work, I thought I deserved a half an hour on my own before bedtime. So, when mum was still not sleepy by 9.30 pm I started to feel impatient. To my shame, I said in an agitated way, “I am feeling a bit twitchy about getting to sleep…”. This was a big mistake, and in retrospect I think mum picked up on my agitation straight away. I have discovered many times that emotions, particularly negative ones, are transmitted by lightning rod to the person living with dementia. Mum acquiesced, but now she was definitely not tired.
Mum has a fall
Over the night mum got up 16 times between 10 pm and 6 am, and 8 times before midnight. It’s my job to help her get to the toilet safely, as I described in my previous post. Between alarms, that alerted me mum was up, I lay in bed unable to sleep. I was finally drifting off to sleep when the 9th alert came. I lay in bed and thought grumpily, “Find your own way to the toilet!” This was the first time I didn’t jump out of bed in response to the alert. Just a short few moments later there was a heavy thud. Mum had fallen.
She was a little shaken, had a nasty cut on her arm and a minor bump to her head. The Telecare Responders came to help get her up off the floor, and back to bed. I felt guilty, concerned for her, and ashamed that she’d had a potentially dangerous fall under my watch. Good grief, this isn’t easy!
After this, the interruptions were varied, and not all were trips to the toilet. Mum was feeling cold and wanted extra blankets twice, then a hot water bottle, and finally she wanted to tidy her room which she insisted looked like a bomb had hit (it didn’t). I was more attentive now.
Imaginary and false alerts
When I finally dropped off, I dreamt I heard an alert, and while still questioning if it was real, I rushed to mum’s room. She was fast asleep and I disturbed her with the overhead light. She was now awake again and wanting a few more trips to the bathroom before she finally settled. I forgot to close the blackout blind completely, and mum was awake and ready for the new day at 6 am. I’d only had between two and three hours of light sleep.
Two nights have been like this in the last week. Another two nights, there was a fault with the sensor, so the alert was going off while mum was fast asleep. Each time, I jumped out of bed and disturbed her unnecessarily. It meant I had twice as many disturbances as usual.
Importance of sleep
A good night’s sleep doesn’t just set you up for the day: it’s good for your memory, your ability to concentrate, your performance, your mood and even repairing muscles, as described in BETTER, NBC News’ health blog. A poor night’s sleep wipes me out the following day and sometimes for several days. Consistently going without sufficient sleep, and not getting the critical four stages of sleep, can negatively impact on your immune system, general health and psychological state. Also, recent research has shown that not getting enough sleep is a risk factor for dementia.
Tips for carers
There’s lots of great advice about how to support someone living with dementia to get a good night’s sleep, and of course that will mean the carer can sleep too. See the excellent summary in an infographic from the Alzheimer’s Association.
For more detail, there are some good tips from the Local Dementia Guide here. I have already implemented much of this advice, but will see what else I can do. I have also recently discovered leading mum in a relaxation meditation can help get her off to sleep. So, in future when she’s not tired at bedtime, I will try this.
I am not prepared to sacrifice my long-term health to care for mum, and I absolutely know she wouldn’t want me to. So, I am extending the trial period for another fortnight to see if I can improve my sleep. Please let me know if you have any other ideas?