“Minimizing Caregiver Fatigue” – webinar notes

Janet Edmunson hosted a webinar today (March 6, 2018) on minimizing caregiver fatigue. Brain Support Network volunteer Denise Dagan listened in and shared notes.

Updated:  The archived recording of the webinar has not yet been posted to Janet’s website, janetedmunson.com.  However, Janet provides this link to the recording:

(you have to register with your name and email address to view the webinar)

Usually the recordings are only available for a short time.

Janet is a long-time friend. She has visited our local support group a couple of times (long ago). She wrote a wonderful book called “Finding Meaning with Charles,” about her late husband Charles. I receive her weekly “caregiver affirmations.” She has occasional webinars on caregiving topics.



Minimizing Caregiver Fatigue
Webinar presented by Janet M. Edmunson ([email protected])
March 6, 2018

Caregiver fatigue indications can include snapping at your care recipient or feeling like you are running on fumes (physical and mental exhaustion). Even long-distance caregivers can experience caregiver fatigue through stress and worry.

The two sides of caregiver fatigue are:

1. Physical exhaustion
– Being tired most of the time
– Tendency to become sick / increased vulnerability to illness
– Frequent headaches, back pain or muscle aches
– May have change in appetite or sleep

2. Emotional fatigue
– Feeling helpless or trapped
– Self doubt
– Sense of failure
– Develop a pessimistic view of life and/or the world
– Withdrawing from social events

Sources of emotional fatigue (examples, but there are many more):
– Dealing with dementia repetitiveness and constantly being on your toes to mange dementia behavior
– Constant to-do list / no relaxation or breaks
– Not having time for yourself

Emotional fatigue can lead to:
– Insomnia
– Illness or physical symptoms (higher blood pressure, weight gain or loss, heart palpitations, headaches, gastrointestinal distress, etc.)
– Crying easily
– Detachment from your relationship and activities you love, even neglect or abuse of your care recipient
– Irritability / anger
– Lack of Motivation
– Hopelessness

Signs of emotional exhaustion:
– Low tolerance to stress and stressful situations. Short fuse.
– Inattentiveness or inability to focus
– Making simple mistakes
– Lack of motivation and zeal for life
– Loss of creativity
– Physical fatigue

What to do about emotional fatigue?
– Pick your battles. Ignore the small stuff.
– Use humor to diffuse emotional stress or assault.
– Join a support group.
– Spot small opportunities to rest your mind, even for just a few minutes for relaxation, deep breathing or mindfulness.
– Take things one step at a time. Prioritize. Not all things are worth doing. Stop “low yield” activities.
– Ask for help! Rotate responsibilities with family members and/or friends so you don’t have to do everything all the time.
– Mix up your environment (beach, mall, friends, family visits). Go outside.
– Stay social with old friends and make new friends, especially through support groups.
– Examine what drains / depletes you? What energizes you?

What drains your energy? Make a list that is unique to you!.
– Negative impact of dementia: the amount of patience, creativity and quick thinking on the part of the caregiver.
– How long it takes to do everything due to immobility or cognitive issues so caregiver runs out of time.
– Increased responsibilities (taxes, cooking, housework, car repairs, etc.) that you never had to do before.
– Not having someone to turn to and/or talk to.

Janet’s personal draining list:
– Cooking (Janet is a bad cook, so lots of frozen dinners when she was a caregiver)
– Worry
– Dealing with incontinence.
– Frustration in understanding Charles’ speech
– Getting Charles ready in the morning and at bedtime & doing his range of motion exercises every day.
– Fixing something broken at home
– No time for herself

What builds your energy? Make a list that is unique to you!
List things that you miss or look forward to.

Janet’s personal energy building list:
– Have visitors over
– Time alone (read a book, watch a favorite TV show, take a walk or hike, get your hair and/or nails done, etc.)
– Running or walking with Charles or by herself on the treadmill
– Watching a great movie
– Daily frozen yogurt
– Talk with friends or family on the phone

After you’ve written your list, figure out how to fit at least one thing on your list every day.

Take advantage of when your care recipient and/or yourself have more energy naturally, like the morning. During that time do activities that take more energy or that you love to do. Keep a journal to figure out when this happens daily for you and your care recipient.

What to do about physical fatigue.
– Be aware of its affect on your health, like weight gain or loss, increased blood pressure. You can’t do anything about a problem you don’t recognize as being a problem.
– Get adequate hydration. Dehydration taps your energy. Your urine should be clear, pale yellow or straw colored.
– Fit in some kind of physical activity. Exercise will actually energize you.
– Make time to do nothing. Especially, if you are caring for someone with dementia, just 10 minutes alone can revitalize you. (Some caregivers have told Janet they hide in the garage or bathroom to get their 10 minutes of alone time.)
– Keep time with your body clock. Get chores done when you have peak energy.
– Get enough sleep!

The caregiver’s struggle getting enough quality sleep.
In Janet’s experience, Charles would wake every hour for over a year. He required turning, toileting, etc. and Janet had difficulty getting back to sleep. For some time she took Tylenol PM so she could get back to sleep. This is not advised. After awhile she went to bed with him until he fell asleep, then moved to sleeping on the floor so his waking didn’t wake her as often. She wanted to be in the room with him, rather than down the hall. Her sleep improved when he got a hospital bed and better when he moved into a facility.

Many emotional issues interfere with quality sleep even when we are not caregivers, like worry over finances, arguments with friends or family, etc.

Why we need sleep:

Information from Matt Walker’s, book “Why We Sleep.”
Adults over 65 need 6-8 hours nightly. We sleep in 90-minute cycles. Within that 90 minutes there is non-REM sleep and REM sleep (REM = rapid eye movement)
non-REM sleep has 3 stages, followed by REM sleep, which is when we dream, store memories, etc. The % of time in REM sleep increases throughout the night so if you sleep fewer hours you get less REM sleep.

During sleep we put down memories and increase our learning. REM sleep washes away toxins (prevents Alzheimer’s?), improves immune system so we get sick less often, increases killer cells that fight cancer, increases creativity and insight. REM sleep is anti-imflammatory. Ironically, the more tired you get the less tired you feel so you may not be aware of the loss of sleep’s impact on you.

Getting better sleep.

Sleep habits
– Make sleep a priority. This means you will have to give up or postpone something in favor of sleep.
– Get a sense of calm before going to sleep. Apps on the phone you can learn from: Head Space or Calm.
– No TV an hour before sleep
– No stimulants or sedatives before bedtime. This includes caffeine, smoking, alcohol (fragments sleep and blocks dreaming)
– Get activity during the day, but not too close to bedtime.
– Set a consistent schedule (sleep and wake at the same time, even weekends)
– Limit naps duration and no naps after 3pm
– Reserve your bed for sleep (not work, TV, etc.)
– Get sunlight during the day
– Yoga poses for sleep. (Lie on back close to wall, put legs up wall and hold for a few minutes.)

Sleep environment.
– Make your sleeping space dark. Use a motion detector nightlight as it is less bright and disturbing to sleep. Use an eye shade or eye mask.
– Keep your room cool
– Keep electronic devices out of your bedroom. The blue light from screens sends your brain signals to be awake.

Tips for falling and staying asleep.
– Take your tongue off the roof of your mouth, which tricks your brain into thinking you are near sleep.
– Keep paper by your bed. Write thoughts that keep you awake or journal to attain calm before sleep.
– Relaxation techniques: Deep breathing, counting, progressive muscle relaxation (contract, then relax in sequence from toes to head), recite lyrics to a song (America the Beautiful while visualizing America’s beauty), pray. All these techniques distract yourself.
– Get out of bed and read for 20 minutes if you are not falling asleep. Then, repeat calming routine and when you feel sleepy return to bed and try sleeping again.

Cognitive Behavioral Therapy (CBT) can also help sleep by replacing anxiety with positive thoughts. Can be more effective than sleep medications. Janet’s modified CBT is to talk to herself, “I deserve sleep,” “Everything is under control,” etc.

Online CBT for insomnia programs (not free) presented in sleepreviewmag.com:
– CBTforInsomnia
– Cobalt Therapeutics’ Restore
– Sleepio

Caution with medications.
For people with Parkinson’s, some medications can interfere with sleep. Ask your doctor if yours or your care recipient’s medications can interfere with sleep. Antidepressants can help sleep. Janet is finding this true for her mother.

Sleep medications sedate you so you are not going through the stages of sleep so it is not good quality sleep. There is an increase of death and cancer associated with them. They are only meant for short term use, but caregivers tend to use them longer than intended.

Janet’s experience with Ambien with her mother who took a half-pill for years. Ambien is recently suspected in contributing to car accidents and other incidents of great concern. Janet’s mother began passing out. Bad falls took her to the hospital. Eventually, they realized Ambien was probably causing the fainting (and falls). When she stopped taking Ambien, she stopped passing out, falling, and being exhausted.

Benadryl dehydrates users, so it is not your best choice for a sleeping medication, either.

Promoting better sleep for your care recipient.
– See the lists above under ‘Getting better sleep’
– Restrict eating and drinking within an hour of bedtime.
– Go over their medication list with their doctor.
– If they get up, remain calm. Don’t start a fight or nobody will get back to sleep.
– For Charles, Seroquel helped him sleep, but he needed an antipsychotic due to his diagnosis.

– National Sleep Foundation: sleepfoundation.org
– Matt Walker’s Book, “Why We Sleep”

Your Action Plan: What ritual will you adopt for better sleep?

Q. What about melatonin or CBD oil (non-psychotropic)?
A. It helps you fall asleep, but doesn’t help you stay asleep. Melatonin is not good for PSP. CBD oil comes from marijuana. Janet doesn’t know how it affects sleep, but ask your doctor.

Q. I don’t go to social events because I might bring the party down. I am caring for my wife with PSP.
A. Some people can’t handle a neurological disease, but it shouldn’t stop you from attending social events. Don’t worry about bring ing the party down. Find those who want to be supportive. Plan a short response to how your wife is doing and move on to other topics.

Q. How do I avoid feeling caregivers have invaded my space? I feel I have to leave my home when they are present.
A. It is great you are getting help, but don’t let these feelings stop you from receiving help. Try setting aside a space in your home where caregivers are not allowed. Remember the serenity prayer, “accept the things you cannot change.”