Have you ever thought about what brings you joy in your in your typical day as a caregiver? Sometimes we are inclined to dwell on what;s not working and on what we don’t have, and that’s understandable.
In the caregiver journey, later is tougher
Of the six stages of the family caregiver journey, the mid to later stages are most demanding. These stages range from the first stage, which is prior to the caregiver actually having to get directly involved. The final stage is after the loved one has passed on.
The physical, emotional and spiritual demands on you, the caregiver, can appear to exceed your capability.
Even in the earlier less physically-demanding stages, an unappreciative or critical loved one receiving your care can make you feel like you’re sailing into a headwind.
More than once, as a family doctor, I’ve come to the rescue of my patient’s family caregiver.
During a typical office visit, my patient might seem dissatisfied and even critical with whatever her daughter, her caregiver, has to say about what she is trying to do, the services she is giving.
My patient might downplay or minimize her daughter’s efforts as if they were not up to her expectations and standards.
It was not hard for me to see, and even feel, the frustration and even discouragement in the daughter’s expression.
Then I intercede by asking my patient the question, “But what if your daughter becomes sick herself and unable to be there for you? What would you do then?”
And yet in earlier less physically demanding stages, or when the loved one is appreciative, cheerful and generous themselves, you may feel like the is wind is at your back on most days.
I remember my mother was the primary caregiver for my father’s aunt. My Aunt Pinkie was always grateful and expressed her appreciation regularly. They got along well, chatting and often laughing together. My mother, in turn, felt her burden was light.
How do you discover joy in your day? What can you do to build your ability to recognize golden moments? How do you build resilience for when the going gets tough?
Three tips for more joy
To help you discover joy in your day, maintain your ability to recognize golden moments I have three tips. This is not a complete list. But it might help you put things in perspective, encourage you, and point to where you might go for help and more clearly explain the type of help you think you need.
My three tips are:
Tip #1: Remember your purpose
Tip #2: Get positive appreciation and validation
Tip #3: Get support and loving connection
Tip #1: Remember your purpose
Duty and repsonsiblity
How did you begin your journey as a family caregiver? Perhaps it was simply out of duty. What was your motive?
We all expect the spouse, particularly if the spouse is female, to shoulder the burden of caregiver. Whether as wife or mother, the female is expected to carry the caregiving burden. This sense of duty and responsibility is a strong motive for caregivers.
Love and devotion, a sense of family responsibility of one to another are indeed strong motives.
Children of an elderly parent face similar motivations, though perhaps not as strong.
Personal character and a calling to higher purpose
These roles are important. Not only do they hold our society together in ways seen and unseen, they form the core of our personal, family, and national character. They form the core of how we define being human, what being in a relationship means. Though we are far from perfect, we do recognize that serving a purpose higher than ourselves focused on the welfare of another can be an experience that leaves us all the richer.
And yet, the demands of such duty can seem more than we bargained for. That’s when confirming and digging deeper in our purpose helps to ground us.
But I’ve seen other motives as well. Financial motives are a most common motivation. Perhaps the caregiving child is also financially dependent on their parent whom they care for. As I see it hat in itself is no problem.
We must always, however, be alert to conflicts of interest, where the financial interest of the dependent caregiving child conflicts with the welfare of the loved one for whom they are responsible.
Thata is a key reason to complete an advance care plan. It includes financial and medical powers of attorney, and a living will.
Family caegivers are the foundaation of chrroic illness and dementia care
There is a growing awareness of the vital role this sense of duty, purpose and even sacrifice is fundamental to our health system’s ability to manage chronic illnesses, including dementia.
The medical community and policy makers realize the job won’t get done without family caregivers.
They are beginning to recognize and to seek ways to address the financial, emotional and even physical burdens that family caregivers shoulder.
Tip #2: Get positive appreciation and validation
You dedicate significant time, energy and even financial support in the care of your loved one.
Feeling appreciated encourages you more than you might realize., and is a wind at your back
Those who receive little appreciation or validation find themselves facing a headwind, and that takes a lot more physical and emotional and even spiritual energy to persist in the face of this wind.
Communicate with Family Members
Does the loved one you care for understand what you are doing? Often we think it is not appropriate for the caregiver to “toot their own horn” to their loved one who should be able to take note. Family history, individual personalities, and the loved one-caregivers interpersonal dynamics between the loved one and the caregiver can be tricky.
A loved one may seem insensitive or entitled. Or they may be medically unable to acknowledge their daughter or son’s efforts because they are debilitated by dementia, depression or psychosis.
If you are struggling with feeling stuck in a thankless job - and this is the reality for many of you - then acknowledge it to yourself and seek others who can help.
As a family physician interacting with family caregivers, I typically did not ask outright whether my patient’s daughter, son or grandchild or other caregiver who faithfully accompanies their loved one to their office visit or diligently arranged for their proxy to do so when they couldn’t be there themselves feel this kind of stress, a sort of emotional neglect that drains the energy and saps the will.
But I could see it in their expressions. I learned to read between the lines of these comments and find it there. It is important to me to reassure and validate the caregiver because I understood how much I depended n them to see the treatment plan through. You, family caregivers, are the foundation of care in the home.
So I would often tease my patient about their family caregiver. I’d say, “Ms. Johnson, take good care of your daughter Susie for me. She’s my agent, and I need her.” This use of my “doctor authority” assures both my patients and their caregivers.
I’ll mention here that my approach is part of a larger goal - to practice collaborative decision making. In other words, my affirming and validating the family caregiver’s work and worth in front of my patient works hand in hand with my own willingness to receive feedback from that same caregiver.
Not only am I showing respect, but you caregivers are indeed my eyes and ears on the ground, my hands and feet in the trenches. Together, we get the job done.
Celebrate your successes
Acknowledge your caregiving milestones and accomplishments, both big and small. Share these moments with family and friends.
Allow them to celebrate with you, and to express their appreciation for your hard work and dedication.
Are you a journaling person? Do you keep a diary? Even if you are not, I recommend it. Hours, days, and weeks run together. In the course of the everyday, who knows how many golden moments come and go? You see them, but then you move on. In the middle and late stages of your caregiver journey, where you’ve ordered your life around the needs of your loved one, taking the time to reflect may seem like a luxury you just don’t have.
Nevertheless, this effort to jot a few of these golden events as they occur not only feed your soul using your caregiving days, but can be a source of fond memories when your loved one has gone on.
They can even be a source of legacy for your family’s generations in your family that are yet to come. And this is no small thing. Consider how increasingly disconnected and isolated family members are from each other.
If you don’t like to write, there are dictation apps already in your cell phone or that you can purchase for your cell phone. You may want to familiarize yourself with one of them.
Recognize that caregiving tasks you do can be challenging, and that you are doing your best in a demanding role. Validate your own efforts and appreciate the care you are providing for your loved one. As you regularly talk with other caregivers and stay in touch with your supportive family members and friends, they will remind you the value of what you are doing. Support groups, whether in person or online, serve the same purpose of giving you this positive reality check.
The physical and emotional isolation that you often face harms you.
Practicing self-compassion can help you maintain a positive outlook and feel more appreciated in your caregiving role.
Tip #3: Get support and loving connection
I’m thinking here of regularly staying in touch with supportive family and friends. As I described above, they can be the wind at your back, the wind beneath your wings. You can share your struggles. You can also share those golden moments, and they will celebrate with you.
Make use of online support groups.
For national organizations with support and other resources for family caregivers, consider these.
Family caregiver Facebook groups are helpful as well. You might consider these.
Connect with support groups in your community as well, if they are available. Often your loved one’ doctor or specialist, and the social worker or care manager can make recommendations.
Seek professional help. Engaging with professional caregivers or healthcare providers can provide valuable insights and guidance, as well as validate the care you are providing.
These professionals can offer appreciation and support. They recognize the challenges and sacrifices family caregivers face.
Hopefully, you are getting affirmation, encouragement and support from family and network. Even better if you are getting it from the loved one you care for. What is your purpose? Have you ever thought about writing out a caregiver mission statement for yourself? I’ve never thought of doing that until just now as I write this post.
While the power of attorney for both my mother and father, that thought never entered my mind. I doubt I’s be far from the truth if I assumed you haven’t thought of it yourself. Like you, it didn’t seem like something to explicitly think about. Rather than thinking and talk about it, it was just a matter of taking action. Diing what was necessary as the need appeared.
But now that I do think about it, and am the power of attorney for our mother’s sister, maybe I’ll do just that.
Perhaps I’ll write a post on it and what such a mission statement it might entail.
It’s especially good if your loved one is able to give you these things. It can make everything worth it. But maybe this is not in your experience. Perhaps your loved one is indifferent to your efforts, unappreciative and critical of all you do, or perhaps even hostile or crippled by psychotic depression or paranoia. If this is your plight, then it is a threat to your well-being and even your health.
If this is where you find yourself, these tips can be even more helpful.
If you are a caregiver for a family member, friend, or neighbor, please consider taking my Caregiver Quiz
Until next time.
Forrest Jones MD
Take my Caregiver Quiz
My website CaringEnd.com
Or reach me at [email protected]