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. IMG_7808Between 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?

 

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10 thoughts on “Sleep Deprivation Marks Mum’s Fourth Week at Home

  1. Hi Julia, I had trouble getting to sleep so I don’t have any pop, coffee, tea, or sweets after 6pm and I shut curtains and put light on in living room around 8pm even if it’s light outside as it is now. Does your Mum take her daily meds in the morning. I started off taking Aricept and Fluoxetine in evening but found it better in the morning.

    Liked by 1 person

    1. Thanks Howard. Good idea about the lights. Thanks for that. Yes, mum on decaffeinated everything all day. She does take meds in the evening including a sleeping tablet which she was put on while in the care home, so is normally drowsy at night and stays asleep except for her trips to the loo. However, if she is agitated that will overwrite the sleeping tablets. Also, she was getting over a UTI so that may have caused some of her trips to the loo that particular night. Now that she is home it may be necessary to have another look at her meds I guess. I was hoping she could come off the sleeping tablet but now dubious that will work.

      Liked by 1 person

      1. I was advised by neurologist to change the meds I mentioned to mornings and it seems to have helped, certainly reduced vivid dreams and helped with sleep along with curtains. Shutting curtains by that time reinforces it is night time

        Liked by 1 person

  2. Try learning to catnap throughout the day. I was able to take light short sleeps in between period of calm. Lots of tv and books to pass the time and keep your mind diverted. Ultimately though, you will need to have regular days off when you can get some down time. This means sharing the work load if you can either by family or hired help who can keep an eye on your mum whilst you are in another room.

    The reality is that you may have to accept institutional care is the best of a bad situation. You are going to “burn out” with time.

    My experience is some sort of institutional care is absolutely right because as things get tougher, you will need bodies to keep an eye on her. I learnt that it would have made absolutely no difference whatsoever if I was there or not in when looking after my mum. Many times I had to just let things run its course. It really is about monitoring.

    Institutional care allows you to intervene when you can be most effective. E.g.
    Visit you mum 4 days and do your own thing the other 3 days. Better to have limited moments with your mum where you can empathise (such as taking her to the beach) and possibly make some moments special rather than just a zombie blur 7 days a werk where no-one wins because you no longer have the energy to try to persuade her to go for walks or to the beach.

    Best

    Hugh

    Liked by 1 person

  3. Julia, you are doing far more than reasonable caring for 3 shifts if you cannot sleep properly. I know it’s massively expensive but is there an agency that can do night sitting for a couple of weeks while you find out whether this is a sort term blip?
    Px

    Liked by 1 person

    1. Phil, I’m so conscious I have only talked about the difficulties in these last two posts. They are my overwhelming preoccupation at the moment, but I will add the other side soon, the things that are working. I do plan to get more carers, and my sister is also getting more involved, taking mum out for most of Sunday last week and this coming Sunday too. I think the night thing is a short term blip, but I hope to get night sits so that I get guaranteed good sleep a couple of nights a week. Thank you for your support, as ever. Hope all is well with you, and your mum.

      Liked by 1 person

  4. My mum has found a route to being content at the moment – last two weeks have been less fretful. Hope it lasts as I’ve no idea how we got here after months of stress for her

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    1. That sounds good. At last! So horrible knowing someone you love is stressed, and there is nothing you can do. If I meditate I can continue to be calm and supportive of mum whatever she is going through – but if sleep deprived and no time for meditation, I find I am getting impatient all too quickly. Today mum is very calm so far. Carer coming now to give me two hours off (I slept quite well last night so I can do yoga and meditation during break), then after lunch we’ll go out to see a singer at Alzheimer’s Society office – so a good day lined up. Fingers crossed!

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  5. Trying to fulfil your caring role without sleep is a nightmare, I know I couldn’t do it and you are giving it your all.
    I do hope that you find a way to make it work. Sleep is the foundation for success and I hope you find a solution, even if that involves bringing in extra help for when it is too much.
    My thoughts and best wishes are with you.
    Sally
    xxx

    Liked by 1 person

    1. Hi Sally Yes, I am exploring solutions to this. Night sits are expensive and of course I never know when I’ll need them most, but one night guaranteed with no interruptions a week has got to help. I am looking into that now. Thanks for your kind words and thoughts. J xxx

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