It’s not surprising mum didn’t sleep well.

In my teens, I would often come downstairs to start breakfast and find her asleep on the couch. She would often fall asleep there with a duvet pulled over her having watched TV until the white dot blinked into blackness.

She had a lot on her mind as many people do when they can’t sleep. She was a single mum, the first on our street and was seen as a threat by other mums. She was raising four children with less and less financial and co-parental support from our alcoholic father. As a result, she held down her full-time accounts job and did bar work in the evenings. Not the best lifestyle for a good night’s sleep.

Then the unthinkable happened. Mum was driving us all to Scotland to see our grandparents when a car pulled out in front of us as we were overtaking on the motorway. Mum swerved, lost control and hit the central reservation. I blacked out. Then I came to. My younger brother didn’t. He died instantly. I don’t think mum ever truly got over that, and blamed herself. The sleepless nights became worse as she felt guilt gnaw at her heart. Maybe sleep would have been welcome respite, maybe it would have brought her nightmares.

The reason I am telling you all this is because people who live with dementia, especially Alzheimer’s, often have a history of poor sleep. When we sleep our healing body mops up plaques that have built up in our brains during the day. These plaques are often present in the brains of people living with Alzheimer’s.

Sometimes people living with dementia relate to their past to make sense of the now. Sometimes they are simply reliving the past as if it is now. This may bring with it worries of a time long gone, but for the person those worries are present and feel real now.

This can result in a person living with dementia staying up, wandering about, maybe wondering are the kids OK? Are they safe in bed asleep? I can’t find my children. I need to find my children!

When I looked after mum, she would struggle trying to stay awake knowing I was still awake and one of the things she mentioned consistently over the years was, “the kids!” With these clues in mind, I would say I was off to bed and then she would be happier to go to bed too. This meant dimming the lights, letting the dog out for his last wee, locking the doors and all the usual routine bedtime stuff. Then she would be more likely to settle. Occasionally, she would get up a little later seeing my light on (I would keep my bedroom door open in case she needed support in the night) and would check in on me, “You alright love?”. I would smile and say I was reading or writing but that I was OK, feeling tired and would be off to sleep soon. Sometimes that would be enough to reassure her, other times she would just go and check one last something before taking herself back to bed:

“Na-night love”. “Night mum, love you.” “Love you too pet.” Her needs were reassurance, to fulfil her role as my mum and know she was loved. I never forget she has a need to be my mum.

This is why I feel that when we support people living with dementia we should be curious about what is keeping them awake. It may be that they are following patterns of old and need to be able to make sure everything is OK. We should enable them to fulfil their roles. Sometimes this is just about routinely saying goodnight and setting the scene for that, putting pyjamas and slippers on, hot chocolate, snuggly blankets, dimming lights, closing curtains. Tips like these can be helpful when you are supporting someone in their own home, a larger residential or nursing home. When I worked as a residential support worker with children, we made it policy to wear slippers, PJs & dressing gowns in the evening. It sent a strong message of safety and routine.

Of course, there are a multitude of other reasons why a person may not sleep well e.g. medical reasons or maybe the part of the brain that controls sleep or your sense of time may be affected by the dementia. It may be more than one reason. These reasons need to be addressed too.

Whatever may keep our loved ones awake, remaining endlessly curious about the reasons why they are awake is important to help them meet their needs well. This may mean looking to their past for answers and being creative about support we offer.

Mum does seem to sleep OK these days, maybe because she relates to her teens more now and to her mind she hasn’t inherited the heavy mantle of adulthood that kept her awake so often. Maybe she has simply lost those memories which caused her so much angst and has found a measure of peace in this space. Whatever the reason I wish you and your loved ones sweeter dreams.

Na-night love.