Module 02

Three F’s of Flipping Out:
Fear, Frustration and Fatigue

Sample Video:
“Reduce Caregiver Frustration”

Topics Covered in This Module:

  • Identifying and managing caregiver fear
  • Recognizing and managing caregiver frustration
  • Avoiding caregiver burnout by managing caregiver fatigue

Caregivers who participate in this module will follow the three-step process of developing an attitude of Creative Indifference toward Fear, Frustration, and Fatigue.

Participants will become Aware that, like a lot of caregivers, they may FEAR.

  • How bad it’s going to get.
  • How much it’s going to cost.
  • How long it’s going to last.

They will Accept that they have the power to control their thoughts and the ability to minimize middle-of-the night “what if” thinking by taking Action steps that will help them get prepared if the events they fear do come to pass.

They will become Aware of the situations that are causing them to feel FRUSTRATED. They will Accept that there are countless things over which they have no control, and they will identify Action steps they could take to reduce their frustration such as:

  • Setting clear boundaries
  • Separating the disease from the person
  • Seeking support from individuals and groups who will understand and not criticize or judge.

They will become Aware of that the physical, mental, and emotional demands of caregiving can easily lead to extreme FATIGUE. They will Accept that to avoid burnout, they must take Action steps that could include:

  • Getting enough rest.
  • Seeking and accepting help, including respite care.
  • Acknowledging that perfection as a caregiver is not an achievable goal.

“Madelyn Loses it”

“Overcoming Caregiver Fear”

“Reducing Caregiver Frustration”

“Dealing with Caregiver Fatigue”

Bonus Video:

“Seek and Accept Help”

In July 2014, I went out for an early morning walk by myself, which is my favorite go-to coping strategy when I feel stressed. My husband was once again suffering with excruciating, unrelenting back and leg pain. He’d had a spinal fusion four years earlier, and the outcome had not been successful. His appointment with a different neurosurgeon was still two weeks away, and every pain-relieving medication and treatment he had tried had failed.

At the end of my walk, as I came down the hill approaching our home, I had a terrifying thought, “What if this can’t be fixed? What if the doctor says there is nothing that can be done to relieve the pain? What if this is going to be what his life (and mine) will be like from now on? What if he becomes paralyzed or crippled and I can’t care for him myself? What if we can’t continue to live in our home? What if all of our good times are now behind us?”

As I approached the front door, I stopped for a minute to get control of my run-away-what-if thinking, and I said to myself, “You need to practice what you preach!”

For years I have told others how to follow the three steps of developing an attitude of Creative Indifference toward the emotional stress of caregiving.

So if you are like me and a lot of other caregivers, and you are worried about how bad it’s going to get, how long it’s going to last, and how much it’s going to cost, following these three steps might help provide you with a greater sense of peace and control:

  1. Become aware of the things that frighten you most:

Put your fears in writing. Make three columns and title them:

  • Might happen
  • Likely to happen
  • Worst possible thing that could happen

Putting your fears on paper will provide you with focus and clarity. It will help you identify what needs to be done to get your affairs in order. It will also allow your subconscious brain to stop working on these problems after you go to bed at night and continuously interrupting your sleep.

  1. Accept that some of the things you fear will most likely happen:

If you are caring for someone who is aging, has a terminal diagnosis or a long-term progressive and degenerative disease, some of the things you fear will eventually happen. Accepting that you have no power to control the progression of the disease, the behavior of other people, or the eventual outcome can actually be empowering by helping you release your attachment to situations you cannot fix or change.

  1. Take action:

Review your list of fears in each of the three columns, and then ask yourself, “Is there something I can do now to get prepared for this? If so, what can I do, and who can help me?”

Deal with One Problem at a Time

I will never forget the moment the neurosurgeon entered the exam room where Alex and I had been anxiously waiting. He smiled brightly and announced, “I can fix this!”

Three weeks later, Alex had another spinal fusion. It was a complicated surgery and a long recovery, but the pain eventually lessened and his strength gradually increased. He can’t hike mountain trails anymore, but he can walk, and we can still do most of the things we enjoy.

I am aware that at our age and stage of life, our years of good health and mobility are limited. We could decline gradually, or something catastrophic could happen that would force us to make quick decisions and radical changes in the way we are currently living.

Knowing that things will eventually change can be scary, but naming your fears and dealing with them realistically can help you take the necessary steps to get prepared. Here’s a checklist that might be helpful to you:

  • Get your end-of-life documents in order.
  • Assess the financial situation. Are there long-term care policies? Are there enough resources to pay for care? If not, seek advice from an elder law attorney on getting your care receiver(s) qualified for Medicaid.
  • For support with Medicare, check out your state’s State Health Insurance Assistance Program (SHIP): It is a free counseling service for Medicare beneficiaries, families, and caregivers.
  • Assess your care receiver(s) physical and mental condition. Do they need more help than you can provide? If so, check out this website: Elder Locator. Enter your zip code to find resources in your area. Also, visit this website to find out how your local USAging can help.
  • Make a worst case scenario plan, which could include determining where they will live if they could no longer stay in their home. Decide who will be responsible for making the decisions and who will do the physical work. 

Once you have a plan, take a deep breath. Recognize that you have managed the situation so far. Accept that there is no way to predict how everything will evolve, and worrying about it will only increase your stress. Trust that whatever happens, you will have the courage to face it, the wisdom to figure it out, and strength to do what has to be done.

We live in a time when we think there should be a solution for every problem and a cure for every disease.  When we are caring for individuals who have progressive and degenerative diseases, it’s only natural that we’d feel frustrated because every new day brings new challenges and complications for which there are no answers or solutions.

We get frustrated because we have no control over the progression of the disease or the eventual outcome. We get incredibly frustrated by knowing that we will never, ever be able to control the behavior of other people.

If you keep all of your emotions bottled up, you will become more vulnerable to angry outbursts followed by guilt and depression.

The important thing to remember is that self-care is not selfish. Taking a break from the physical, mental, and emotional challenges of caregiving will help reduce your frustration and maintain the energy you need to continue doing what has to be done.

Here are a few strategies that might help you cope caregiver frustration:

  • Get physical. Go for a walk, a run, or a bike ride.
  • Breathe. Deep breathing exercises can help release toxins from your body, elevate the oxygen in your blood, lower your blood pressure and reduce stress.
  • Find a safe place to rant. Call a friend, go to a support group meeting, talk to your clergy, or set an appointment with a mental health professional.

Frustration is part of every caregiver’s daily experience. There will always be upsetting issues and uncooperative people. There will be times when you lose it. But if you invest a little time and energy in taking care of yourself, it’s likely that you’ll have more patience and energy to give your care receiver.

Sleep deprivation can affect our mental and physical well being. Without adequate sleep, a person’s ability to think and reason is seriously impacted. Fatigue and lack of sleep can lead to poor decision making, erratic behavior, increased falls, and accidents in the home, at work, and on the road.  It can also contribute to depression and other physical problems including irregular heartbeat, high blood pressure, heart attacks, and strokes.

Sleep restores our bodies and rejuvenates our brains. However, there are several factors that can contribute to a caregiver’s struggle to get a full night’s uninterrupted rest such as:

  • Stress
  • Depression
  • Pain
  • Medications
  • Chronic health issues
  • Low levels of hormones
  • Frequent urination

Poor nighttime habits can also contribute to sleeplessness. If you had children and followed a bedtime ritual when they were little, you might discover it will also be helpful to establish a nighttime routine for yourself and your care receiver. Consider these suggestions:

  • Limit consumption of caffeine, alcohol, and nicotine.
  • Reduce your intake of liquids during the late afternoon and evening hours.
  • Before you go to bed, meditate, stretch, or do breathing exercises.
  • Make sure your bedroom is quiet, comfortable, cool and conducive to sleep.
  • Cut down on screen time.  Turn off the TV, your computer, and backlit  reading devices at least an hour before bedtime.
  • Avoid large, spicy meals late in the evening. Try to have dinner at least three hours before you turn in. If you’re hungry at bedtime, have a light snack.
  • List your fears on paper. Getting fears and what-if’s out of your brain and down on paper can help decrease 3:00 a.m. wake-up worry calls.

Everyone will experience a restless night occasionally.  However, if it’s become a pattern, and you’re concerned about chronic insomnia, see a doctor as soon as possible to see if there is a medical solution.

And finally, if you aren’t sleeping at night because your care receiver can’t sleep, figure out a way to get some respite. Toward the end of my dad’s life my mother became so mentally, emotionally and physically exhausted that she was having difficulty functioning and completing even simple tasks.

If she had arranged for a non-medical caregiver to come in occasionally and sit with Dad so she could go to an upstairs bedroom to sleep, she would have been able to function so much better. My dad would not have  have liked it. But it’s possible that it might have made him a little more considerate about waking her up several times a night.

A few months before Dad died, he suffered a terrible fall that put him in a nursing home.   Mom had reached her limit, and when she heard about a silent retreat at a convent in a nearby town, she signed up to go. She didn’t have to cook, clean, do laundry, change Dad’s wet sheets in the middle of the night, deal with his Depends or tend to any of his other needs. For two glorious days she ate. She read. She prayed. And most importantly, she slept. After two nights of deep, peaceful, uninterrupted sleep. I believe that short break enabled her to care for Dad through the end of his life, and it may have actually saved hers.

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