I’m tired, it’s 4am in the morning, and Mum is still not asleep. I’ve spent the last few hours sitting with her, reassuring her and trying to settle her to sleep. She’s agitated. She’s hallucinating and talking loudly to people that are not in the room.
I’m leaning over her hospital bed, stroking her hair to comfort her until she nods off. Within seconds she’s awake again, sleepily picking up the conversation from before.
Has this happened to you? Do you struggle with helping your loved one get a full night’s sleep?
I’m a caregiver for my Mum with Alzheimer’s disease and she’s had insomnia before, so this isn’t new to me, but it’s emotionally and physically draining for both of us.
When the Sleepless Nights Began
It started just over two weeks ago, with her being sleepy, being taken to bed by the carers, falling asleep for an hour, then waking up. Every night is different. She’s either fallen straight to sleep or stayed up, usually nodding off between 2-5am in the morning.
She gets stuck in a loop of repetition or talking to people not in the room with her (the one good thing about Mum’s hallucinations is that she’s calmly talking to them), telling them what I’ve said for example, we must go to sleep now, goodnight. But it’s not goodnight, it’s less than a minute of silence before Mum starts a repetitive chant of “I’m going to sleep now, I’m going to sleep now, I’m going to sleep, shh, go to sleep now” to the people she sees in the room with her.
All I want to do is scream okay, then go to sleep! But of course, I can’t do that. My frustrations are just boiling under the surface as it isn’t the first night Mum has had problems with sleep.
I sit with her, listen to some music or religious texts that calm Mum, turn the lights low, use a pillow spray and she’ll nod off. But the problem is she doesn’t stay asleep. It could be a few minutes or an hour before she wakes up. She struggles to sleep through the night. Mum fluctuates between getting a full 12hrs sleep or only getting 2-3 hrs sleep.
Daytime Napping
Mum’s physical health has declined over the last year and that has increased her daytime napping.
Mum can nod off in a split second, e.g. whilst eating her food or watching TV. This was before she developed the night time insomnia. The doctor has checked her over and taken blood and urine samples, but they found nothing. They’ve put it down to her dementia progressing and her body needing more rest. Obviously, this has worsened now, with a lack of sleep at night. She’s sleeping more in the daytime to catch up on her night time sleep, so we’re in a vicious circle of staying awake during the night and sleeping during the day.
What I’ve tried
The last time we went through this, I turned to the advice of Admiral Nurse – Kerry Lyons. I worked extremely hard to implement her recommendations that helped Mum break out of the cycle. Her advice at the time was:
‘ to take a three-fold approach to deal with problems sleeping by creating an emotional anchor, implementing a calming bedtime routine and making sure Mum was sufficiently stimulated during the day.
You can read more on that the strategies she advised in this blog post on how Admiral Nurses can help families living with dementia. I’d deployed her recommendations and added a few new things to try
- I adjusted Mum’s bedtime routine depending on when the carer arrived as that varied day to day
- I made changes to her surroundings to remind her she’s home
- I talked with our memory clinic, and they advised stronger sleeping tablets to help her nod off. I’m not a fan of medication to help Mum sleep but will use it if nothing else works.
- I made environmental changes by reducing noise & stimulations before bedtime, lowering the lightening (adjustable smart bulb), keeping her room warm and using lavender spray, and bringing back old familiar bedding.
- I increased her pain meds, double checked her diabetes readings, stopped giving her food later than 5pm and no caffeine after midday.
- I’d introduced light therapy to help with her daytime napping.
Light Therapy -SAD lamp
I recently bought a Seasonal Affective Disorder Lamp to see if that would help; the theory is that Light Therapy can help lift people’s mood, trick your body into thinking its daylight hours and help rebalance her circadian rhythm. It is supposed to help those that experience depression in the winter months due to lack of sunlight. As Mum doesn’t get out often, I thought that this could mimic the sun and help reset her body clock.
Source: NHS
The science on this isn’t conclusive, on whether it can help improve depression, but I still wanted to try it to see if it affected Mum’s circadian rhythm and reduced her daytime napping.
Unfortunately, I had to stop it after a few days because of concerns with Mum’s eyes as she has diabetes and had eye surgery previously. So I didn’t get a chance to use it consistently enough to determine if it had any effect.
Always check with your doctor if you do try light therapy to ensure it’s suitable for your loved one.
Impact on Both of Us
The impact on Mum isn’t great. She’s more irritable first thing in the morning, making the carers job even harder in the morning, which is unsurprising after being woken up early after a night of little sleep.
She’s exhausted on the days where she doesn’t fall asleep until late early hours. Her level of confusion is much higher, and her repetition rate increases, and she’s very lethargic & apathetic on doing things to help keep her engaged. Thank goodness for the singing group!
I’m back to being exhausted again. I’m struggling to get up in the morning before the carers arrive and nodding off in the afternoon. It’s making it difficult for me to be at my best when caring for Mum trying to stay on of top of it all, the demands of round-the-clock caregiving, making sure that she has meaningful activities, healthy diet, household duties, and taking care of my own health.
I’m really feeling it at the moment!
Searching for Solutions and Acceptance
If I hadn’t experienced this before, the lack of sleep would overwhelm me. It can cloud your judgement. I’m more emotional, and I know Mum can sense my frustrations and irritability. I am worried about the long-term effects on her health, especially given the marked decline in her health overall this year.
I’m going to keep working on trying different solutions to try to bring back normality in our night time routine. But I’m not going to keep beating myself up for it. I know I’ve done everything that I can at the moment. I’ll keep searching for other solutions.
I’m also going to accept that this is simply a result of her dementia worsening, that her Alzheimer’s disease is causing more damage to her brain.
We’ve ruled out the possibility of infections, checked her bloods for any issues, & her vitamin levels are good and her diabetes is well managed for someone of Mum’s age. So, ignoring the obvious isn’t going to help.
I know that I’m doing the right things. I need to accept that, maybe make adjustments to my own sleep patterns so that I’m rested and present when Mum’s awake and alert, so sleep when she sleeps etc.
Have you dealt with similar issues where your loved one is not sleeping through the night on regular basis?
Please know that a few kind words or sharing what has worked for your own family goes a long way in making caregivers like me feel less alone. Share any advice you have, and I’ll add that to my own suggestions for things to try to improve sleep for Mum and others with dementia in a later post.
Til next week
As you know, my mum’s care has been in the care of the nursing home for a few years now. But before my mum got sectioned under the mental health act, those final few months prior where I was often at her bungalow giving her support, so my bed was the floor and a sleeping bag with her bungalow being a one bed, I had in the last couple of months sleepless nights because she was having nights where I thought she had gone to bed to only find she hadn’t because she get up due to hearing voices or noises.
I couldn’t comment on voices whether she genuinly had or was imagining them. Although there had been a lot of imagining at this point. But the noises she said she was hearing, they definitely wasn’t happening.
I am trying to reassure mum, but like you, I am tired and even more so due to my sleep dusturbances and my own mental health declining while trying to support mum.
A few years later from this and during the time she has been in care since this, it was only last year when it was mentioned to me that my mum is now on medication at night to help her sleep. I am actually surprised it didn’t happen sooner. But it was last year when they told me.
Prior to her being on the medication and the last year in seeing my mum at the care home, I know mum was starting to be more asleep. So they probably found her awake at night because of sleeping in the day before introducing something at night in medication to help her sleep.
But I know she sleeps in the day still. By how much, I don’t know. But through my mum’s solicitor contacting me with their update last month, her solicitor found my mum to be asleep when she visited her as part of her job that she needed to do. For only not to be able to what she needed to attempt and so after chatting with carers, she then contacted me regarding the matter.
I wouldn’t be surprised if my mum sleeps alot in the day still now. But also at night if her medication at night still helps her.