Caregivers struggle to get their rest. Often those they care for also struggle to get good rest. But sleep is essential for healing, and for maintaining circadian rhythms that work in the body’s favor. Times of rest are when the body repairs itself physically and mentally. Everything goes better when all are sleeping well. But there are some enemies of good rest. Here are a few I know about.
It used to drive me insane. I traveled with a client who made me go around our motel room pinning the drapes shut with clothes pins, putting tape on the LED lights on any appliance that had them, covering up the clock, and putting towels at the bottom of the door to keep out the hall light. She insisted she could not sleep when there was any light in the room. In my mind, I was telling her my solution – shut your eyes and the light goes away.
Turns out she was right. We are programmed to become sleepy when it’s dark. We need to get light exposure during the day. It actually plays a part in keeping us alert and awake. But as evening comes, a hormone our body produces called melatonin, increases and we get tired. But even ordinary indoor lighting can interfere with our melatonin production. LED lighting is probably the worst kind and that is why having a lot of evening screen time – TV, computer, and cell phone is counterproductive. Ideally, you and your person should try to get out during the day, keep lights low in the evening, and avoid screen time the last few hours before going to bed.
One of the most common problems I read about in the caregiver support chats is the condition called “sundowning”. People with Alzheimer’s or other dementias might have the experience of getting more anxious and upset in the late afternoon or evening. It’s a kind of confusion that keeps them thinking that they should be up when you think they should be asleep. It can be exhausting for everyone involved. Having good routines with activity during the day (less napping), relaxing time before going to bed, not eating too late in the day and possibly boosting melatonin levels with a supplement, can all help.
It’s also just common sense to not try to get the whole day’s fluid intake in the evening (when you finally remember…) because frequent bath room trips do not make for good sleep.
For many years before his diagnosis of Lewy Body Dementia, my husband had vivid dreams. He would talk, shout, run, peddle his bike and fight with kicks and punches during his nightmares, scaring himself and me. We didn’t sleep very well and we have stories about that. We learned that this was called REM (rapid eye movement) Sleep Disorder, and it is one of the symptoms leading to the diagnosis of LBD. I was fascinated to learn that most of us are somewhat paralyzed when we sleep, which is why we don’t act everything out. Not so with this kind of dementia. Again, supplementing with melatonin before bedtime has helped Dennis to avoid most of this and sleep quietly.
Caregivers, there is another important R word that you should know about. If you are at your wit’s end, exhausted and nothing is getting better, you might need respite care for your loved one. Respite is a short period of rest or relief from your difficult situation. Sometimes it can be as simple as asking a relative or friend to help for a night so you can get some sleep. Respite care is also a common feature of hospice care, so inquire if you need this kind of help. Your person depends on you to stay well and take care of yourself.
I am reminded of the scary statistic coming out of one caregiver study – death rate of caregivers was 63% higher than that of the control group. After six years of the study 70% of the caregivers had died before their person and had to be replaced. Stress can do that to you. I’m hoping to stay well and be here for my people until they don’t need me anymore. Just sayin’…