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When Sleep Deprivation Feels Like Life Deprivation


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Guest Post by Mike Good, Together In This

Disturbed sleep is listed first on the Caregiver Strain Index. That seems appropriate since sleep is how we recharge, giving us the energy to deal with the 12 other strains on the index. For years we’ve been told to get a minimum of eight hours sleep a night. It’s likely that we’d be hard pressed to find an Alzheimer’s caregiver who gets that regularly.

Caregiver Strain Index – Where Do You Rate?

Without a good sleep routine, caregivers are left exhausted, making them irritable and unable to think straight. Further complicating matters, lack of sleep leads to reduced patience, poor decisions, and a decline in physical and mental well-being.

Up at Night?

There are multiple reasons why a caregiver doesn’t get adequate sleep. At the top of this list is the fact that their loved one is not sleeping through the night. If the person with Alzheimer’s is awake, then it’s highly likely that the person caring for them is also awake.

Snoopy clock 202 X 169Often the circadian rhythm (our internal clock) of older adults and specifically people with Alzheimer’s is simply off. This may happen for reasons such as physical changes in the brain or boredom during the day causing them to snooze during daylight hours. Keeping them active and helping them get sunshine are ways that may help reset their internal clock but it won’t likely be that simple.

What’s the Cause?

Lack of routine along with underlying health conditions, diet, or medications may be to blame. Sometimes the best intentions are often the culprit. We assume if something worked for one person it should work in our case too. For instance, valerian root is often recommended as a sedative to help people sleep. This supplement, however, seems to give me insomnia.

On top of that, some medications given to people with Alzheimer’s are known to induce nightmares. Basically, we all have a different biological makeup, and for unknown reasons, what works for one person may not work for the next.

Easy Fix?

Once a caregiver becomes the victim of their love one’s irregular sleep schedule, it’s not something they are going to correct immediately. However, they can’t continue to live without regular, proper sleep. There’s an abundance of suggestions out there on how they should deal with sleep related issues but there’s no solution that is guaranteed to work for everyone or from night to night for that matter.

Most caregivers start by ensuring that all sleeping arrangements are comfortable. This includes linens, pillows, clothing, temperature, lighting, and roommates (people and pets). To their dismay, they quickly learn that the root cause of their loved one’s irregular sleep isn’t readily apparent. As a result, they are left without a clear idea on what to do next.

Are There Trends?

As with many of the behavioral challenges resulting from Alzheimer’s disease, maintaining a journal is a highly recommended place to start. This process should be started immediately and the caregiver should record as much as possible.

Things to log include but are not limited to: sleeping arrangements, schedule, medications, daily activities, meals, television watched, weather, and interactions with people.

MC900434377As different strategies are tried and observations noted, patterns might emerge that will eventually lead to an improved sleep schedule.

Finding the right set of strategies that will work in each case takes observation, planning, and creative execution. For an extensive set of resources with strategies that you can apply, visit the Together In This Sleep page.

This is one of the most complex elements of caring for someone with Alzheimer’s, and as you start to learn, it’s important to share with others who may be involved in the care of your loved one. Be sure to talk about your loved one’s typical day, and work together to identify ways to change the routine per the recommended strategies. As a team, try to stay consistent and creative.

If you have questions, need advice, or have a suggestion, please feel free to leave a comment or contact us directly.

About the Author: Mike Good is founder of Together in This an online resource helping family members caring for someone with Alzheimer’s. Through short, informative articles and easy-to-use tools, such as the Introductory Guide to Alzheimer’s, he helps them take control and have peace-of-mind they are doing the right things.

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  1. Great article! I wish I had read it sooner–although perhaps I wouldn’t have heeded it, as I was always of the firm opinion that it was unethical to give sedatives to people to keep them quiet. However, but after 11 months of being woken up anywhere from 2 to 9 times a night, I realized I had no other recourse. The sundowning was the worst, where she would wake up 2-3 a.m. talking a blue streak and ready to get up and start the day. And if I put her back to bed, she would be up every 20-30 minutes for the next 2 hours till it was time for me to get up at 5 a.m.

    I was often catching myself nodding off at the wheel and drifting across the center line or off the road. I was struggling to stay awake at work. We tried everything–natural remedies, white noise, you name it. And we could not afford a night sitter every night, so we would have one come in perhaps once a month. But after a particularly bad streak of frequent nighttime bathroom runs, I threw in the towel and called Mom’s dr. Her response? “Why did you wait so long?” (She had no idea; I’m always with Mom at her appointments and didn’t think it was something I should bring up in front of her.) Mom takes the pill unquestioningly (“Here’s the new pill Dr. A wants you to take every night”)–which surprises me, as I thought she would be suspicious and fight me on it. It is prescribed off label, but it does the trick. At first the dose was too strong, so we had to experiment with cutting it into various sizes. 1/2 a tablet works well now, and both of us mercifully sleep at least 5-6 hours straight every night, then often are able to go back to bed and sleep another 1-2 hours.

    I will say that due to abuses of medication in nursing homes, they are not allowed to medicate them and in hindsight that is as bad a tragedy as overmedicating them. My father was on a mild sleeping tablet before he was admitted but they took it away from him, and he was always up at night trying to find the bathroom. One night, the bed alarm was not set properly and he got up and fell and broke his hip. So that is why it is so important to be able to assist them at night, and why caregivers are so willing to do it–within reason.

    • JL, I feel for you and the struggle you’ve been through. It sounds like you are a very caring person, and I’m happy you found a solution that works for both of you. I can see what you mean by under medicating being a problem as well, and I hadn’t quite thought about it like that. Thanks for sharing your experiences.

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