In this month’s edition, we asked a former caregiver and two gerontologists for their perspectives on compassion fatigue, which generally refers to the stress, strain or burnout that caregivers may experience after extended periods of caregiving. As you might imagine, just as our bodies can grow weary of lifting and transferring loved ones, the hearts and minds of both professional and family caregivers also need to be nourished and supported.
In Virginia, an estimated 447,000 caregivers provided 509 million hours of unpaid care for their loved ones with Alzheimer’s disease and dementia in 2013. For some caregivers, it’s not always easy to ask for help, and yet others have run out of places or people to ask. It takes courage to say “uncle,” to recognize our limitations and reflect on our own needs. If you are experiencing compassion fatigue, AlzPossible, its partners, and the many wonderful state and local organizations in the aging and dementia networks can be great resources. Please ask. If necessary, keep asking.
In many respects, caregivers in all capacities and from all walks of life are the backbone of not just our health CARE system but of our society, a society predicated on caring for each other across the lifespan. If you’re not currently a caregiver for someone with dementia, odds are you know someone who is. Acknowledge their efforts, listen to their accomplishments and struggles, and offer to help.
Charlotte Arbogast, MSG
Dementia Services Coordinator
Virginia Department for Aging and Rehabilitative Services
Division for Aging
If you have a question that you think our colleagues ought to answer, please submit it through the Contact Us section.
Sonya Barsness, MSG, Gerontologist, Sonya Barsness Consulting LLC
When I was asked to write about compassion fatigue I prepared to write about other people who were suffering from this. And I had compassion for them. I see how it happens, I thought. I talk to amazing people every day who are so committed to their work. Of course they burn out. They must not be taking care of themselves, I thought. Silly other people. That’s what happens when you give everything to what you believe in, every day, for years. Not that anything is changing. When is it going to change? When will we think differently about people living with dementia? About aging? About how we care for each other as we age? Sometimes I feel so tired. Fatigued. Frustrated. Hmmm. So maybe it is not about those other people with compassion fatigue. Is it me? So I took the Compassion Fatigue Self Assessment. And, hi, my name is Sonya and I have compassion fatigue. But I don’t think we get tired of being compassionate. I think we get tired of working within systems that we recognize do not always serve well both the people for whom we care, and us.
So what is a gerontologist to do?
A few pieces of my own advice to take:
1) Remember that we are all in this together. And honor all perspectives so it is not us and them.
2) Actively seek inspiration.
3) Make space to be creative, think, play, and live. My mission is to change the way we think about aging, about dementia, about care, by becoming more person-centered. But there is something that we forget in person-centered care. I am a person in person-centered care. So are you. As we honor the people for which we care through knowing them as individuals, supporting them in living fully and with purpose, and bringing to life those things that are important to them, let’s honor ourselves.
4) Focus on the possibilities. Think about all the great things you can and do accomplish. Revel in that. The possibilities are endless.
Now go take care of yourself, self!
E. Ayn Welleford, MSG, PhD, AGHEF, Gerontologist, Chair, Department of Gerontology, Virginia Commonwealth University.
Many of us don’t have to look farther than the mirror to know what compassion fatigue looks like. And chances are you don’t need a quiz to tell you if you’ve already got it. If you think you do, let’s just agree that you do. It isn’t caregiving itself that puts people at risk for burden, burnout, and illness, it’s Compassion Fatigue.
So let’s take a step back and consider what the yellow flags might look like.
- Do you or others consider you a Natural Caregiver?
- Are you drawn to or frequently drawn into caregiving roles?
- Could you insert your names into he following statement: “Let’s ask (your name here), she’ll take care of it!
So, if you’re like many of us and you’re seeing red or even yellow flags of Compassion Fatigue what do you do about it?
Ask yourself some questions:
If you are frequently drawn to caregiving situations, ask yourself why. What is your mission or your goal in these situations? If you say because I’m good at it or because people need me then YOU need a plan. Care is not an unlimited resource. How do you replenish?
Announce your Intention
The more you announce your intention the better you will feel about letting other tasks go. For example, “I am providing safety and joy in my loved one’s day.” Who could argue with that? Not even you. One Phrase. What is yours?
Develop a self-care plan
While individuals at risk for Compassion Fatigue are pretty terrible at self-care, we know how to rock the TO DO List.
Here’s a starter:
- Good Sleep
- Nutritious meals
- Natural Movement
- Gratitude Journal
- Time with friends
- Use your vacation time
- Join a support group
Find a TO DON’T LIST Mentor
Really, you will need two, partly in case you can’t reach one when you’re having a TO DON’T List crisis.
First, there are TO DON’T List Gurus. These are the folks who by some mystery of upbringing or magical chromosomal abnormality never add things to their TO DO List that isn’t mission critical.
The second is your TO DON’T List Permission Slip Giver. Keep this friend on speed dial.
You aren’t in this alone. The only time many of us make time for self care is when illness hits and we are forced to stop and replenish. Frustration with providing care for others is a very normal reaction to any relationship. Burnout and illness result when frustration becomes chronic.
Nico Stanculescu, former caregiver
At six months after her death, I still woke up with the image of her dying, with my two hands holding hers. And there was no more of her tremor. There was no more of her pain. But mine. And guilt. And anger. And guilt, again.
I used to joke with her that she had become my baby – I was bathing her, feeding her, combing her hair or trimming her toenails. She would then put her hand on my head and caress my forehead, just like she would do when I was her baby. But then, that stopped, too. She could not lift her hand anymore. She could not lift herself from the bed any longer. And she could not lift my spirits again.
Someone once told me that this caregiving would make me stronger. And indeed, I realized that while you care for someone who depends on you to survive, you do not have the time to afford being vulnerable. You cannot cry anymore, you cannot show that you are tired, you cannot stop because food needs to be prepared, beds have to be changed, meds have to be taken, and wounds have to be dressed. You simply forget about yourself. You do not count anymore. You worry, you do not eat well, sleep well or think well. You forget things and names and places. You become irritable, every little error annoys you and you feel everyone has forgotten about you. Your life begins to blur just like a pale watercolor that never had the chance to anchor itself onto the paper.
But hospice care taught me I was never superhuman and I deserved to “Don’t just do something! Sit there!” I learned to accept help: having a couple of hours to do my work while not worrying about her kept me back on track with my business. I learned to ask for help when I didn’t know or couldn’t find answers. I learned that caring for her meant I had to care for myself, too. It’s like in an airplane where they teach you to put the oxygen mask on yourself, first, and then on your child!
Having my nephew around at this time helped, too. At nine, he saw her death as we should all do, I think. As part of a life cycle and not like a full stop. He pushed me to drop the fatigue for “reusable potential energy,” which we could then use to fuel our dreams of Star Wars’ heroes and even bigger Transformers.
Because, in the end, we are the biggest Transformers around. As a bright guy once said, “we are unconditioned spirits in unspirited conditions.” We can be tired of caring. And we should allow ourselves to feel this way. We can ask “why me?” without absorbing the implicit guilt. We can be vulnerable again and not be afraid to show it. And yes, we can reach out to a nine year old to learn that death is just another beginning. One in which we remember, we cherish and yes, we transform [again] into renewed selves.