Caring for the Caregiver

Take Care of Yourself, Too

This article is for informational purposes only and explains caregiver stress in simple terms. It also gives easy steps you can try today, plus places to find help when caregiving feels too hard.

When you care for someone with an injury, illness, or long-term pain, most of your time and energy goes to them. That is natural. But your health matters, too.

When you are rested and supported, you can give better care. You are more patient, safer, and better able to help your loved one. Taking care of yourself is not selfish. It is an important part of being a caregiver.

Your Feelings Matter

Being a caregiver can be rewarding, but it can also be very hard. Some days you may feel happy and thankful. Other days you may feel tired, sad, angry, or frustrated. You may even feel all of these emotions in the same day.

These feelings do not mean you are a bad caregiver. They mean you are a person doing a difficult job.

Studies show that about 1 in 4 family caregivers feel burned out. If you feel overwhelmed, you are not alone. Many caregivers feel this way. Burnout happens when the stress of caregiving builds up over time.

Signs of Caregiver Burnout

If you notice these signs, do not blame yourself. They are your body’s way of telling you that you need more support.

Ways to Prevent Burnout

When to ask for more help: Talk with a doctor, counselor, or trusted support person if stress is affecting your sleep, health, safety, or daily life. You do not have to wait until things feel impossible.

If you are in a crisis or thinking about hurting yourself, call or text 988 to reach the nationwide Suicide & Crisis Lifeline. Help is free, private, and available 24 hours a day.

Helpful Resources

You do not have to figure this out alone. These trusted resources can help you learn more, find support, and know when to ask for help.

Caregiver Action Network — Click for caregiver education, support tools, and practical help for family caregivers.
https://www.caregiveraction.org/understanding-caregiver-burnout/

Cleveland Clinic: Caregiver Burnout — Click to learn the signs of burnout, why it happens, and ways to treat or prevent it.
https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout

HelpGuide: Caregiver Stress and Burnout — Click for simple tips on stress, self-care, and getting support when caregiving feels hard.
https://www.helpguide.org/family/caregiving/caregiver-stress-and-burnout

Mayo Clinic: Caregiver Stress — Click for self-care advice and guidance on when to reach out for more help.
https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

988 Suicide & Crisis Lifeline — Click or call/text 988 if you or someone else needs free, private crisis support right away.
https://988lifeline.org/

Caring for another person is an act of love. Caring for yourself helps you keep going. You deserve the same patience, compassion, and kindness you give to the person in your care.

Disclaimer: This article provides general caregiving information only and is not medical advice. Always consult a qualified healthcare professional for medical concerns.

TPLCP Expert featured on CBS News

CBS News Features Turning Point Life Care Planning Expert

Dr. MJ Mulcahey, a nationally recognized expert in spinal cord injury rehabilitation and a member of the Turning Point Life Care team, is helping advance innovative technologies that are transforming what is possible for people living with paralysis. Featured in a recent clinical trial at Jefferson Health, Dr. Mulcahey discusses a groundbreaking implanted neurostimulation system that enables individuals with spinal cord injuries to regain meaningful hand function. While the technology is not a cure, it has the potential to restore greater independence, improve daily living activities, and significantly enhance quality of life.

We’re proud to see Dr. MJ Mulcahey featured by CBS News discussing innovative technology that is helping restore hand function for individuals living with paralysis.

An excellent look at the future of rehabilitation — and the caliber of experts we are privileged to work with.

Can’t Sleep?

Practice Good Sleep Hygiene

Learning how to practice good sleep hygiene may help you find a restorative sleep once again. What is sleep hygiene?

Sleep hygiene is defined by Oxford as, “habits and practices that are conducive to sleeping well on a regular basis.” Sleep is the foundation that allows us to function in our daily lives. If we don’t sleep well, we can’t think as well and any pain or mood symptoms can worsen.

A first step in rehabilitation is often to help restore sleep. Your family doctor may have medical suggestions (medications, sleep study, sleep specialist or other therapies) and occupational therapists often provide tips to help you develop healthy sleep habits.

Here is a handout on sleep hygiene to get you on your way to finding that refreshed morning feeling.

Sleep Hygiene PDF

Tips for Pacing.PDF

Mindfulness

What is Mindfulness?

Mindfulness is the awareness that arises when we pay attention, in a particular way, on purpose, in the present moment, without judgement (Kabat-Zinn, 2011). We learn to step out of automatic pilot, which in turn affects how we make decisions and react to situations in our lives.

Key Learnings:

We spend most of our time ruminating about the past or worrying about the future. Through mindfulness, we can learn to bring moment to moment awareness to everyday experiences that we ordinarily do not notice. By learning to pay attention in this way, we learn to recognize thoughts as thoughts, feelings as feelings, and body sensations as body sensations. A mindfulness practice involves learning formal practices (e.g., seated mindfulness meditation) and informal practices, where we can bring mindful awareness to our everyday experiences (e.g., brushing our teeth, eating a meal).

A New Way of Relating to Pain:

There are ways that we can learn to skillfully deal with pain. With mindful awareness, we can learn to notice the changing physical sensations of what we call “pain”, and our reactions or aversion to pain including contracting, pushing away, discomfort and repulsion. We can learn to let go of the resistance which leads to mental suffering around pain, and instead, to notice thoughts as thoughts, emotions as emotions, and to directly experience the physical sensations in a clear, open way.

How to get started?

Daily Opportunities for Mindfulness:

Mindful breathing
Mindful eating
Mindful walking

Adapting:

Strive to be mindful daily
Develop mindful moments (e.g. brushing teeth)
Be aware of bodily experience when feeling rushed, overwhelmed or fatigued
Notice your bodily experience when you are relaxed, happy, comfortable or at ease
Slow down. Avoid rushing

Mindfulness Tool: STOP

Stop
Take a breath
Observe
Proceed

Recorded Meditations

Free Meditation Apps

Headspace
Insight Timer
http://stopbreathethink.org

Mindfulness courses (in Los Angeles area)

The Center of Mindful Living, https://www.mindfullivingla.org/
Sutter Health, https://www.sutterhealth.org/services/holistic-integrative-medicine/mindfulness-based-stress-reduction

Chronic Pain

The Revised Definition of Pain and What It Means for Chronic Pain Management

For the first time since 1979, the International Association for the Study of Pain (IASP) introduced a revised definition of pain, the result of a two-year process that the association hopes will lead to improved ways of assessing and managing pain.

The definition is: “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage,” and is expanded upon by the addition of six key Notes and the etymology of the word pain for further valuable context.

Pain is always a personal experience that is influenced to varying degrees by biological, psychological, and social factors.
Pain and nociception are different phenomena. Pain cannot be inferred solely from activity in sensory neurons.
Through their life experiences, individuals learn the concept of pain.
A person’s report of an experience as pain should be respected.
Although pain usually serves an adaptive role, it may have adverse effects on function and social and psychological well-being.
Verbal description is only one of several behaviors to express pain; inability to communicate does not negate the possibility that a human or a nonhuman animal experiences pain.

Development of the Revised Pain Definition

A multi-national, multidisciplinary Task Force developed the revised definition with input from all potential stakeholders, including persons in pain and their caregivers.

The revised definition was introduced in this article in the journal PAIN and via a press release. An infographic also illustrates the changes.

IASP Announces Revised Definition of Pain

Managing Chronic Pain

Standards of care to manage chronic pain include the development of self-management skills, but for many people, professional guidance is helpful to know what questions to ask, where to go for support and little things you can do to reduce your pain intensity and improve daily functioning.

Many rehabilitation professionals, including occupational therapists, work with individuals to develop strategies that support function, participation, and daily activity despite ongoing pain.

In more complex injury cases, evaluations such as life care planning assessments may also help identify long-term treatment needs, rehabilitation services, and supports required to manage chronic pain and maintain independence.

Additional Chronic Pain Resources

Much of the educational information we provide and reinforce to our clients can be found on the Fraser Health website, Manage Pain. I highly recommend reviewing the relevant subheadings which include: medication usage, support