Don't Lose Sleep as a Parkinson's Caregiver: Part One

This is Part One in a series of three articles that focuses on things you can do to prioritize and achieve sleep as a caregiver.

If you care for a loved one with PD, you’re already familiar with caregiver burden. You’re certainly not alone: Check out these stats if you feel like you're the only one doing what you do.

The sacrifice of sleep

Caring for someone with a condition like PD adds extra demands. Tasks might include assisting them in walking, preparing meals, eating, bathing, dressing, toileting, and traveling to and attending doctor’s appointments.

For these caregivers, there is little time to exercise, eat right, maintain hobbies, and manage daily household tasks.

Getting sleep could be the perfect opportunity for recovery from a day’s worth of stress. After all, adequate sleep helps the body restore itself literally at the cellular level. It regulates emotional health, detoxes the brain, consolidates memory, and prevents chronic illness.

Yet, stress from caregiving may spill over into the night to rob us of the very act of sleeping. No wonder sleep becomes an easy sacrifice to the goal of getting things done.

Caregivers, no doubt, recognize they need more sleep to survive the job. They feel it every day in their bodies, minds, and moods. Still, getting a solid 7 to 9 hours of undisturbed sleep remains elusive.

In this first in a series of three articles, we address the problem of secondary sleep problems caused by your loved one’s own nighttime issues, as well as strategies for getting nighttime assistance so you can get more and better sleep yourself.

Sleepless nights and the PD caregiver

Whose sleepless nights? Chances are, you and your loved one are both losing Zs. That’s the nature of both the disease and the caregiver’s job. But this doesn’t mean we are powerless to do anything about it.

First, we’ll take a look at “household” sleep problems, and then we’ll pivot to the nighttime needs of PD caregivers.

When your loved one can’t sleep

People with PD—or any chronic illness—may struggle to sleep simply because of their condition. PD caregivers will attest that living with anyone who has a sleep disorder can make an entire household miserable.

Here are common sleep problems among people with PD and how they might also affect your sleep. Remember, helping your loved one to sleep better offers the added bonus of improving your own sleep quality.

• Insomnia - Their incessant tossing and turning can force you into hypervigilance and fragmented sleep.
• REM Behavior Disorder (RBD) - This symptom (and an aspect of Lewy Body Dementia) can be dangerous. RBD describes physically active—often violent—behavior occurring as your loved one sleeps, a kind of “extreme” sleepwalking that can cause property damage and serious injuries.
• Restless Legs Syndrome (RLS) - Bedtime is a nightmare for someone with RLS. Their legs twitch, jump, or give off unpleasant sensations that make it impossible to sleep. Staying up late to tend to your loved one’s RLS discomfort may find you unable to fall asleep on your own later.
• Periodic Leg Movement Disorder (PLMD) - Is your PD loved one also your bed partner? If so, and they have PLMD, you can expect to be kept awake by their frequent leg jerks and kicks all night long.
• Sleep Apnea - Aside from the loud snoring that frequently accompanies sleep apnea, a person with PD will awaken gasping and choking for air. Watching your loved one literally suffocate in their sleep is likely to keep you up all night, as well.

The nighttime needs of PD caregivers

Asking for, or accepting an offer of, overnight help is critical if you want to ensure yourself at least a few full nights of sleep. Remember, the best caregivers don’t do it alone, not even at night. Try these solutions:

• Tag team with loved ones - Enlist the help of family members or friends at weekly prescheduled sleepovers, where they stay up and help while you get some undisturbed, restorative sleep.
• Hire overnight help - If you can swing it, seasoned in-home care will not only preserve your sleep but provide nurturing benefits for your loved one.
• Invest in monitoring devices - Peace of mind might look like doorway motion sensor alarms or baby video monitors; these additional “eyes” can help you relax at night, giving you simple at-a-glance live monitoring of your loved one if you sleep in separate rooms.

Next time: Part Two highlights smart planning solutions to free up your brain  space for unencumbered sleep, as well as sleep hygiene as a force for prioritizing Zs.

Coming up: Part Three focuses on mindfulness as a sleep booster, and reviews the realities of caregiver burnout, with sleep-related tips for its prevention.