Finding Balance: Caregiver Self-Care

This is a transcript from episode #27 of the Let the Verse Flow Podcast.

Are you a runner like me? Someone who tends to run around from one task to another, mindlessly, to get everything done. Perhaps you are a caregiver like me, someone who has a goal in mind to help someone else, and somehow that need comes before your own. Perhaps you have a million to-lists because you’ve fretted so much and you’re so not present in your own life that you need a list to remember every little detail? Or you’ve forgotten to put yourself on that to-list.

Have you neglected your needs because you lack the patience and the power to carve some time for yourself? It’s time to check in with ourselves and tune in to our needs, so today we’ll explore listening – inner listening as a way of being present with our life and giving ourselves something to counterbalance all the caregiving.

The Caregiver's To-Do List Is Long

When you are a caregiver you often have a long list of things that need to get done. On my list, there could be small things like buying groceries, scheduling doctor’s appointments, buying medical supplies, but there are also big things, emotionally heavy things like:

• doing everyone’s taxes (or spending the money to get someone else to do them),
• paying the monthly bills and seeing money fly out of your bank account,
• hiring and managing healthcare aides to help ease the caregiving, and
• traveling long distances to visit loved ones. 

Many Varieties of Caregiving

I signed up to be a caregiver to my partner. He had a disability when we met and I knew that caregiving would be a part of my life. and I accepted that. It was part of who he was and as an extension of that and my love for him, I made a decision, over 20 years ago now, to be a caregiver to help my partner with some needs. We have a beautiful child, now an adult, and of course, I signed up for that caregiving too, but when my mother got ill, the caregiving tasks shot up through the roof. It went to another level.

In addition to the routine caregiving at home, I was taking care of my mother (and that takes a deeper commitment because of the emotional load it carries). It was difficult for me to detach from the way I’ve known her all my life and see her in the position she’s in now. See her lose so much, cognitively, physically, and spiritually. Caring for your parents and witnessing their often fragile, almost child-like state (if they have dementia or Alzheimer’s as my mother does) is sad because you recognize how much they've lost. You also know how much you are losing.

My mom, who has Alzheimer’s and vascular dementia, began to talk about going home to see “mommy and daddy.” She would say it in a childlike way when she was confused about where she was. In the hospital, after one of many strokes, she would have periods of delusion where she would repeatedly try to get up out of bed to go home to see mommy and daddy. I can’t tell you how sad it is to see your parent become childlike and desperate when you have known them as a leader, a mentor, and your favorite adult.

So in addition to caregiving, there’s an emotional burden when you are a family caregiver and you watch your loved one change in ways that don’t feel quite natural. In my mom’s case, for example, this connection to her parents during these confused periods was also atypical because she wasn’t particularly close to her parents. This yearning to go home to them didn’t mesh with her true relationship with them. Since she was in her 80s, both of her parents had passed many years ago, and seeing her not understand that was also hard. There was a longing in her voice that hadn’t been there before the dementia, and it tended to make me feel sad and a bit fearful. We are in a different phase now, and she doesn’t ask for mommy and daddy so much anymore. These stages change over time. 

While I’m touching on family caregiving here, these caregiver roles can involve moms and dads, grandmas, husbands and wives taking care of each other, siblings or friends who need help. Today we’ll explore how we become present and mindful of our needs while still fulfilling the caregiver role. How do we have patience with ourselves and others so that the time we spend (whether for ourselves or in a caregiving role) is meaningful? While sometimes it may seem as though time is ticking by slowly, it also appears to move quickly. Are we sitting with our lives, knowing them, living them, being patient with them, and getting something out of them for ourselves?

I’ve realized more and more that I’ve missed being present in my life during some fabulous moments because of a striving to-do list, but what I lost most of all was the ability to sit with my thoughts, to know them, and to spend time with them. I was so reactionary that I didn’t give myself time to live. Also, I was so impatient and striving that I didn’t listen to others in my life. So now, in this stage of my life, I'm listening to myself so I can make sure I’m IN my life, that I am living my life, no matter what the demands of the day may hold.

This poem is called, Sit Down a While. It’s figuratively and metaphorically about sitting with yourself and your thoughts, and as a runner, this simple act can be anything but simple to practice. Here’s Sit Down Awhile.

Sit Down Awhile

By Jill Hodge

Sit down awhile and then you’ll know
As foresight rises to the right of time and stillness
Can you hear a voice well up
Faint shades of cherry blossoms

Listen and mute the chatter
Rebuke the tempest
You’ll be told when time tells
An inner whisper it comes
From where you’ve been and where you’ve still to go

You try to rush it
The mossy cliff, you’ll slip right down
Cold caverns echo bleak and troubled sounds
Let the valleys spread wide
Let footsteps stop
Let resting be, let movement die

Sit down awhile, and then you’ll know

A charcoal line starts to form
As layers of dust rise and blow
A path concealed now opened up
Contorted and twisted, then inroads revealed

A quiet veil floats down to rest upon your shoulders
And with a feather-light touch, the burden is lifted
From this gentle seat, the world unfolds
Sit down awhile, and then you’ll know

Caregiving Touches Everyone's Lives

To sit with ourselves and our lives, really take in the moments, and give some to ourselves, we have to be mindful of some important activities that can add balance to our lives. If you are a caregiver, these activities and skills are non-negotiable. They help you stay sane and get some enjoyment from your life. There’s a famous saying by former first lady, Rosalynn Carter on the universality of the caregiver role. She said: 

There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.

That struck me and while at first I felt a bit sad about the implications of this quote, I realized how important it is to manage our caregiver tasks, instead of allowing them to manage us. When you let the caregiver role take over your life, you give up your power, and that’s not a place you want to be in. 

What you want is to manage your caregiving so that you are still at the center of your life, and your caregiving is something you do. While you may identify as a caregiver, it isn’t what you are, it is what you do. This subtle shift in thinking is important because if you want to remain in the center of your own life, you must give to yourself too. You are not as all-consumed by caregiving. It’s an important distinction to make. I am a caregiver, but I am also Jill and I have needs and this is my life.

The Rosalynn Carter Institute was established by Rosalynn Carter who herself had a long history as a family caregiver, starting with caring for her ailing father and siblings when she was only 12 years old. Some 53 million Americans currently serve as family caregivers to someone who is ill, aging, or disabled. I think the word “serve” is worth noting because caregiving is a service. It’s hard work and family caregivers feel called to do it out of love (or sometimes obligation). 

We could have a long discussion on caregiving out of obligation, say for an estranged parent or loved one, which carries its own stressful baggage. Sometimes our relationships are complicated and maybe we didn’t have a wonderful relationship with our parent or loved one and now we still feel an obligation or desire to be a caregiver. We want to help but we may have a lot of anger or resentment.

I’ve been lucky to have a loving relationship with my mother. I recognize when I talk to other people how conflicted you can be when you haven’t had a good relationship with your parent or loved one but you still feel that sense of responsibility, you still own that responsibility, and you still try your best. It’s such a different kind of burden. For now, I want to focus on caregiving itself and our relationship to the caregiving role. 

Caregiver Stress

The Rosalynn Carter Institute website is a wonderful resource; I only recently found out about some of their programs. While their dementia programming and workshops for caregivers are not offered in New York City where I am, they do have a caregiver support crisis text line. They also offer an audio course on self-care specifically designed to address caregiver stress; this mini-course is offered through their partnership with Sharecare’s Unwinding App. 

The app offers tools to handle challenges in a variety of areas, everything from stress or anxiety to money and finances, social media, reactive habits, food or weight issues, and managing relationships. These courses offer some basic (but useful) information, and while the narration may feel a bit corny at times, the lessons reaffirm our feelings and normalize our situation. I’ve been exploring their mini-course called Caregiver Stress, but they have others about financial stress, everyday addictions, making space for movement, and moving from burnout to resilience. The caregiver stress mini-course is a 41-minute course that’s broken down into 4-7 min mini-chapters that you can do at your own pace. In this course, you can explore these ideas:

• Self-care isn’t selfish. This is an essential truth.
• You aren't alone, in fact, you belong to a large group of people who are caregivers, and caregiving takes many forms. 
• Caregiving can be unexpected, and you can become a caregiver overnight (and may not feel equipped to handle it).
• The importance of understanding and identifying our body’s fight or flight stress response (especially when we feel overwhelmed physically and mentally).
• How to change how you relate and react to stressful situations (holding your breath, having strong urges to do something or making something happen, furrowed brows or body tension).
• Understanding the role reactive habits (e.g., comfort eating, binge-watching TV, excessive social media usage, or overworking) may play in your life.

Tools offered include:

• How to do grounding breaths, a simple pause that reduces mental and bodily stress; no one knows you are doing them.
• Mindful check-ins within the app.
• A tool to map out reactive habits (trigger, behavior, result) and increase awareness of stress-based behaviors.

So you can listen to these mini-chapters during a brief break from your caregiving. We have 4-7 minutes to remind ourselves to recenter our lives a bit to include us.

It's Not Selfish to Take Care of Your Life Too

So once we have teased out and distanced our identity away from our role as a caregiver, the realization naturally arises that we have to take care of ourselves. It may sound harsh, but I like to remind myself that even though I want and need to take care of my loved ones, they are living their own life (with all the health challenges they face) and I must live my own. Sacrificing my life for theirs is the furthest thing from what my mother or partner would want me to do, even if they have a great need for my help, so I must take some time for myself so that I don’t get lost in the shuffle and the rush. So that I don’t become a runner. 

What does that look like for me? It means taking some weekends off from traveling to visit my mom these days so that I can have some time for myself and not feeling guilty about it. Putting my needs first sometimes. It means telling my partner that nonessential doctor appointments will have to be rescheduled (or done with his health aide) because I can’t do them right now or letting him know that dinner will be a sandwich because I need to meditate more than I need to feed us a complete meal. It means setting boundaries and managing my internal thinking about the importance of my needs and desires. 

Sometimes when I take this time for myself, all I am doing is reminding myself that I have the right to live my life for myself. You do too. So here are some actions and skills that I think can help us define what our self-care looks like and develop a better mental outlook that puts us in the center of our lives.

Listening to Yourself (with Patience)

The first are two skills: listening and patience. We usually think about listening as it relates to listening to others, but here I’m talking about listening to ourselves, monitoring our thoughts, emotions, and bodily sensations to be mindful of what comes up for us. We can ignore these thoughts and feelings, but they rarely go away. They kind of well up and then we build up excess anger or fear or frustration. We may have a build-up of bodily tension and stress. So listening to ourselves – what do we need, what are we struggling with at the level of our emotions and our body — and how can we deal with those feelings and stressors so we are more comfortable? 

I know how hard this is, so please don’t think I’m suggesting this as easy. When you are in a hospital and your loved one is having a major health crisis, or even when their physical body is safe but their mental capacity is declining, it can feel counterintuitive to sit and wonder “How am I feeling right now, or what is my body telling me,” so in those moments you may have to wait until you can ask yourself those questions. I’m planting the seeds in your mind to come back to these ideas when you can. 

Please do ask them at some point. In the throes of crisis, the most important skill you may have is focusing on your breath and grounding yourself with some simple sensory experiences (breathing, drinking cold water, stretching, or going for a short walk). You can do this thinking that I’m talking about later but don’t forget to do it. When the crisis eases a bit, check in with yourself and listen to your needs. 

This is related to having patience with yourself. You may be an emotional mess of sorts, and now is not the time to judge yourself and your decisions. You may have had to make many decisions, and you may be unsure if you made the right ones. Have patience and be gentle with yourself. Tell yourself:

I made the best decision that I could make and now things will play out as they play out. I’m not in control of what happens next and I have to be gentle with myself and have patience and faith that things will work out as they should. 

We can try to stretch ourselves to be more than we can be, telling ourselves things like “I should have been there.” “I should have done this or that.” “I should figure out how to do x, y, or z because I need that right now.” Connected to patience is acceptance that you don’t guide or control situations. You may have to react to them, but you don’t control them. Your loved one’s healthcare crisis is not your responsibility, even if you feel a sense of responsibility for them, their illness, or struggle. It’s not something you control. 

Anything you do to help them is in the service of making a bad situation better, but sometimes the situation goes from bad to worse and there is nothing that you can do. Please be patient and kind toward yourself. Some days you will be able to listen to your needs and fulfill them and other times you won’t. The important thing is that you begin to shift some of your thoughts away from your loved one and towards yourself. Does that sound selfish? I don’t think it is. I think it’s self-preservation and it’s innate and necessary for you to get something out of the life that you have.

People often tell us things like “You’ll be no good to them if you don’t take care of yourself.” and that’s true, but what I’m talking about here is the right and the need that you have to live your life so that it doesn’t pass you by in a blur of caregiving or work or rushing. This is still your life and so listening to your needs and making small gestures to include yourself in your daily activities goes a long way to feeling better about yourself and the quality of your life. It could be small things like breaking away for a walk around the hospital grounds, getting a cup of coffee, and savoring it outside in some fresh air. 

Take Breaks (Small Ones Count) Because You Deserve Them

There’s an annoying coincidence that used to drive me crazy when my mom was in the hospital. Have you noticed that whenever you step away from your loved one’s hospital bed to take a break, that’s when their doctor decides to come by and check in? Of course, you wanted to be there to ask questions and tell them things, and now you’ve missed it. Do yourself a favor and check in with the nurses' station before you leave to see if the doctor is on the floor before you go, and also find out what time rounds are and plan to be there at that time, if you can. If you miss the doctor because of your break, you may miss an opportunity to help your loved one in that moment, but there will be other opportunities. 

The reality is that you need to help yourself (and you will eventually get the info you wanted – that’s another place where that patience comes in). I promise that even if you do miss that doctor and feel bad about it, in a few months you will hardly remember it all. Life has a way of sending new challenges and situations our way so one small missed opportunity isn’t usually very significant.

Listening to yourself and having patience with your thoughts and feelings is much easier when you practice mindfulness. I’ve spoken about mindfulness and meditation in several episodes because it’s been such a helpful tool for me in my stage of life. (see episode #9 on mindful breathing and creative grounding which has been a godsend in my life) as my stress tends to manifest as shallow breathing. Also, see episode #23 on overcoming overthinking with journaling and meditation. I have also created some guided affirmation meditation episodes #20, 22, and 24 that may help. 

Start Small: Add Mindful Moments to Your Day

You can explore those episodes as you build your mindfulness practice, but for now, I want you to focus on adding more mindful moments to your day. We sometimes get so busy that we think “I can’t add another thing to my day. I certainly don’t have time for a whole mindfulness meditation practice,” and that’s valid. But don’t throw away those potential benefits; build some mindfulness into your day as a start. Activities like a walk around the block, a cup of coffee, or listening to one or two of your favorite songs with some headphones, can be life-giving in the moment. They refresh your mind, give your body some sensory attention, and remind your psyche that you matter, you exist and you need happier moments. 

Also, taking the time to be mindful will remind you of the central idea we are exploring here – that you are the center of your life, not your role as a caregiver. Other types of mindful moments I’ve had in hospitals include splashing cold water on my face, sharing a smile or a joke with a nurse, eating an ice cream cone in the cafeteria, and writing poetry in my journal.

Writing poetry in my journal (which was the impetus for starting my podcast) was a lifesaver. I brought my journal to the hospital and wrote when I could. I began to write poetry again and it eventually took on a life of its own. A lot of people ask me how I manage to have a podcast, have so many caregiver roles, and work full-time. It’s not like a superwoman type of thing; the podcast is where I find the energy to do everything else. I found that releasing my creativity through poetry writing and then developing this podcast with music and storytelling gives me so much life; it reminds me every day that I’m in my life. Yes, I’m tired a lot. I wake up early, work after hours on this, and weave it around my caregiving, but it's vital to keeping my energy positive. You never know when one of these mindful moments may turn into something different, something new and important in your life. 

Pause Before Action

The last component of these self-care support tools is not reacting too fast when things happen, taking a brief pause to check in with yourself, and figuring out what you want to do and how you feel. This can be practical, like telling the social worker that you have to think about and research which rehab hospital you want your loved one to be discharged to. It could be personal, like reminding yourself that you haven’t decided next steps right now and that you do have time to consider things for a while. 

Reacting too quickly can limit your options because the ideas we have when we are stressed are not always reasoned. They may not be the most helpful. Being in a reactive state all the time is so stressful, so even for timely decisions, ask for 15 minutes to consider things and then find a quiet place where you can be thoughtful. It’s like a refreshing pause for the body and mind. Then whatever decision you make, please don’t second guess it or judge it. You made the best decision you could at that moment and you don’t control all the outcomes of that decision. As soon as things settle down a bit, you want to return to this idea that you are the center of your life. Ask yourself, what self-care do I need? How do I create some space between the stressors of life and my reaction to them? Often it will be through self-care.

You’ve heard of a self-care list before but perhaps you need a reminder: 

Remember to listen to yourself, be patient with yourself, be mindful, don’t react too quickly, and take time for yourself with self-care. Whether you are a caregiver or not, all these tools are needed as we try to live today for today. And, while they’re all needed, they don’t all have to be done today. Bite off a little small piece to get started. Take one idea I’ve talked about today and try to implement it in a break.

Journal Prompts to Encourage Caregiver Self-Care

Here are some journal prompts to encourage you to take some time for yourself by listening to your thoughts, feelings, bodily sensations, and needs.

You are the center of your life – literally – and it’s OK to give to yourself. You need to do it to be fully present in your life. I’m hoping that you can put aside some of your caregiver tasks or challenges this week to shine a spotlight on you. You matter and you deserve it. Your loving kindness to someone else is an important facet of your gift-giving to the world, but it isn’t the only loving kindness you should give – save some for yourself too. May you find the bright side of the beat.🌞

Podcast Music: My thanks to all the musicians who make incredible music and have the courage to put it out into the world. All music for my podcast is sourced and licensed for use via Soundstripe.

Songs in this podcast episode: Office Party 2  by Nu Alkemi$t; Slide by GEMM; Stillness by DeHartmann; Purple Baggin by Sam Barsh; Pyaar Kee Seemaen by Cast of Characters

Related Episodes:
#9: Calming Down with Mindful Breathing & Creative Grounding
#20: Affirmation Meditation: Keep Your Dreams Alive
#22: Affirmation Meditation to Cultivate Creative Flow
#23 Overcoming Overthinking & Worry with Journal Writing & Meditation
#24: Affirmation Meditation to Overcome Overthinking and Worry

Resources:
Rosalynn Carter Institute: https://rosalynncarter.org/

Unwinding App: https://www.unwindingbysharecare.com/ (find the Caregiver Stress course within the app)

LTVF Season Two Music Playlist: Check out the songs that inspire me, and connect with artists from many genres who add to our collective, human soundtrack.

Check out the resources on this website (and subscribe) to get podcast episodes, poems, articles, music playlists, and journal prompts delivered to your inbox.

Then, connect with me on Instagram. Let me know you hear me out there!

Journaling Resources

30-Day Journal Challenge (Writing Prompts to Get Started)

Here’s a fun & simple 30-day journal challenge for beginners (or those who need inspiration). Use the daily prompts to rediscover yourself.

Let the Verse FlowJill Hodge

Journaling 101: An Inspirational Guide to Start (or Revive) a Practice

Whether you write, doodle, draw, or keep memorable quotes, journaling uncovers YOU. Let your unconscious mind speak, download my free guide.

Let the Verse FlowJill Hodge

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