Masthead header

A long time ago when I became a caregiver, it did not occur to me that I was one or would be one for the rest of my life. At thirty-three years old that’s a lot to consume. In the beginning, each new day was all I could focus on. Get through today. Don’t think about tomorrow. At the time I knew someone, about my age, who was caring for her husband. She did not see me.

At the end of each day when I lay in bed all of the worries looped through my mind. There were concerns without answers. Where would I get the money to put food on the table, to keep the roof over our heads, to pay the enormous health insurance premium now that he wasn’t working anymore? If we did not have insurance how could he continue to get care? Did I even want to get up in the mornings anymore? Economically I was woefully unprepared to take care of our family. No one could see me.

Sad, scared, barely surviving, there was no one to see the ambiguous grief crushing my heart.

Days and nights, nights and days, blended into each other for months. The first year led to the second, the second year to the third and so on. As I emerged from the fog of a life dismantled, I was hired to work at the local hospital at a low-level job. Getting my foot in the door was huge. It boosted my confidence. It gave me hope. Eventually, I worked for someone who understood I was a caregiver even if I still did not see it. She could see me.

Someone seeing me shifted my perception of myself. I was less alone. I was less lonesome. I began to see I could do more than survive, I could thrive in the face of this adversity. Seeing me mattered.

In whatever way caregiving comes to you it’s an enormous life challenge. We hold another person’s life in our hands every day. Caregiving needs come in all shapes and sizes, from providing supervision to paying bills to total care. Some days the challenge is daunting, some days it’s not. Some days it’s incredibly rewarding, some days it is not. Most days are somewhere in the middle.

Wherever you are in this caregiver life I see you.

The photograph was taken January 18, 2020, at Federal Point, Ft. Fisher, North Carolina. This is a self-assigned photograph for an ongoing documentary of Thomas J. Ward. Tom is a veteran of the Marine Corps, 1972-1975. In June 2010 he was diagnosed with service-connected Amyotrophic Lateral Sclerosis, ALS. I have been photographing Tom’s painting and the progression of the disease since diagnosis for the purpose of a documentary exhibit to inspire others to improvise, adapt, and overcome what seems impossible at first look, but is in fact, not impossible at all.

Tom was painting long before he was diagnosed with ALS. Living well with ALS takes daily courage and commitment. ALS is an unremitting enemy. In the end, it doesn’t lose, it takes the body, but it will never win his Tom’s soul. Every single day he wakes up he embraces fully. He honors all of us with his focus to give his best. He never gives in. He never gives up.

Tom paints despite the difficulties the disease imposes. In this photograph, he is opening a 37-milliliter tube of paint. It’s a struggle. His fine motor movements are compromised from the disease. His left hand is nearly paralyzed. If he puts down his paintbrush, he will have to pick it up again after he finally gets the tube open. If he puts it down, he may not be able to pick it back up. When he paints, he continuously improvises because every time he paints, he faces new progression with the disease. He adapts so he can overcome the obstacles.

Some people would give up painting if they confronted the challenges Tom does. Giving up is not an option for him.

The Marine Corps values are embedded in this Marine. It is these values that get him out of bed every single day with a purpose. He embodies the essence of the United States Marine Corps with how he conducts his life despite the enemy that lives within him.

Pinky is one of our three dogs. She is a mini-dachshund, a black and white dapple. We accepted Pinky and her sister from another mother, Mimi when our son and his wife divorced. They called them ‘the girls’ and we did, and do, the same. Mimi is a classic red mini-dachshund. She’s smaller than Pinky by a few pounds and shorter by a few inches. They were both bred and born in Germany. My son and his wife bought them in Germany when they were stationed there.

Our third one is really Tom’s dog. Tom’s the husband. Maddie is his service dog. She is a yellow labrador retriever. For the most part, they do not behave like a pack, simply because Tom and Maddie are so well bonded. The girls hang with me most of the time.

Mimi kind of dances to her own tune. She always loves a visitor. Runs around them in circles flips on her back, and pees upside down. She does this nearly 100% of the time. She prefers to spend the day under blankets. She’s friendly until she’s not. You can have her on your lap for a while, when you put her on the ground she snarls pretty good. When a fight ensues with the girls, it’s generally Mimi that starts it.

Pinky is the youngest of the crew. She will be seven-years-old on January 17th. She was sick this summer, diagnosed with an autoimmune disease. She had cyst-like bumps popping out of her skin, a fever and was generally not well. I thought she wasn’t going to make it. She rallied though and came back to her jovial, mischevious self. One of her favorite tricks is jumping on the kitchen chair and then the table when we aren’t looking. She’s exceptionally social. She doesn’t have a mean streak in her at all. She’s more of a party girl.

Pinky likes to pick up a bone almost as long as herself and bring it in my office when I’m working. If I get up and go to another room she follows, bringing her bone. Often I’m going in and out of a room, back to my office, moving quickly. She follows anyway. I’m her human.

This last week she developed acute pancreatitis. She’s super sick and doesn’t seem to be getting better despite fantastic veterinarian care. She spends the day at the vet getting treatments and comes home at night. I like that they let me bring her home so I love on her.

This morning she’d seemed markedly worse than when we went to bed. Her breathing was troubling her and she was in more pain than she’d been in despite having the pain medication I gave her. I wrapped her in a blanket and sat on the front porch with her on my lap with my coffee and camera close by. I would learn later on when I took her back to the vet that she had a 103 temperature. While we were on the porch all I knew was how much worse she was and wondered if she was going to beat this.

From the front porch, I can see the colors of the sunrise. I can’t see the horizon but I can see when the sky changes colors in the early morning. We are approximately one mile from the Intracoastal Waterway.  It’s super nice when you can actually be at the waters edge, however, any day you can sit on your porch and see what I do almost daily you’ve got nothing to complain about.

I was supposed to run a 5k this morning. It’s part of my get healthy, lose weight initiative that I’ve had going on since May 2019. I was dressed and ready when I realized I couldn’t leave her and the care she needed. I couldn’t leave her to Tom. She’s my pup and I’m her person.

It was lightly raining at my house yet the sun wasn’t having it. The sky was opening up to beautiful colors over the Intracoastal. Pinky was snuggled on my lap, coffee was delicious and I got lost in photographing the sunrise from my cozy chair on the porch. Photography brings me to complete mindfulness almost instantly. It didn’t make Pinky physically better but ya know I feel like she felt the calmness that mindfulness brings to people, to me, and how loved she is.

This mornings sky:

When respite calls, we should listen.

Merriam-Webster dictionary defines respite this way: an interval of rest or relief. As caregivers, we know how challenging it can be to find the time to rest or have relief from our responsibilities.

How does one know when they need respite? Seems like a silly question, like don’t you know when you’ve had enough? That you need a break? Maybe. Some do, and some do not listen well to their inner voices. Or maybe some realize they need time away but have no way of making it happen.

If our cups are empty, our energy depleted, we need to find a way to fix that or we may break before our care recipient does not need us anymore. In the long run, we will not truly be the caregiver our loved one needs us to be if we fall apart.

You can’t pour from an empty cup. Put your oxygen mask on first. Clichés that ring true. Nothing equals nothing. If we have no oomph, we will struggle to provide care in a loving way. We may lose patience. We may lose a sense of well-being.

When respite calls to us what will it say? I know what it says to me. To me, it says you’re getting short-tempered, or bored, or tire more easily or my spirit has weakened. It says to me you are in a rut and if you don’t get yourself out of it depression will find you. What will it say to you?

AgingCare.com states: Rough statistics show that 30% of caregivers die before those they are caring for. Some studies show deaths higher. Illness that doesn’t lead to death is rampant, as well – depression and auto-immune diseases are high on the list.

Moments of respite can go a long way in helping us not just survive but thrive as a caregiver. On the daily, I find moments of quiet. It’s not the same kind of moments each day. It’s whatever fits into the flow of the day. It might be a cup of coffee by myself, or a walk or listening to music. I’ve learned to love those tiny pieces of time I can put aside for my mental health.

Over an extended time, bits of respite though good, are often not enough. Sometimes we may need to be away from all caregiving responsibilities. We might need a few days of 24/7 relief. If this is you, try and find it. At least once a year I figure out how to make this happen. It isn’t easy. It takes a lot of careful planning. When I am in the middle of planning, I wonder if it’s all worth it. It is. It is totally worth it. After a few days of just thinking about what I want to do, not worrying about wheelchair accessibility, meal planning, showering and dressing someone else, I feel refreshed.

Even if you can only get away for a few hours it’s worth it. The trick is letting go of wearing the caregiver hat when you walk out the door and that is not easy. For what it’s worth my two cents on letting go is to think about letting go a few hours before your time out of the house begins then you will be ready for “me time”. It takes practice to get good at preparing for time for yourself.

In “Living Your Yoga”, Judith Hanson Lasater provides some guidance for us. She says: do what is truly possible with unwavering commitment to giving yourself to the moment.

We owe it to those we care for, and to ourselves, to live our best lives possible. To avoid being one of the thirty percent that die prematurely due to the stress of this caregiver life we need to learn how to breathe deeply, fill our cup, and listen to our inner voice that is craving respite. We need to be as good to ourselves as is humanly possible.

Time Away Podcast

Sunrise 6:02 this morning. To get to where I can see the sunrising it is a one-mile walk. It is the Intracoastal waterway. Anyone who has dared to get up for a sunrise knows dawn throws some light before the sun touches the horizon. From the front porch I can see the sky changing color, and, to be honest, it didn’t seem like it would have zizzle or sparkle this morning.

I decided to go anyway. I usually walk in the neighborhood to get my miles in, and sometimes head to the Intracoastal, like today. It was calling my name this morning. Taking my Nikon with me is no easy feat. I sling it across my body with the camera resting into the small of my back. The camera body and lens are heavy. I love it. I love the feel of it weighing me down. I love the promise of the captures that await me.

I adore everything about the walk over there. The anticipation of what I will find. The birds chirping. Cardinals crossing my path. Mourning doves soulful sound. Hawks being chased by crows who are being chased by much smaller birds. The occasional fox running across the street. Neighbors walking their dogs. Neighbors out for a run. Me walking. Trying so hard to get there when the sun peaks over the horizon. Walking as fast I can. Knowing I won’t make it. Not caring that I won’t. Embracing the moments for what they are. Mindfulness at its best.

When I get there, I easily shift the camera from my back to my eye in seconds and take the opening shot. It is how I breathe. When I leave, I take a parting shot, like this one, or maybe not as good as this one, or better than this one, doesn’t matter, I won’t know until I get home. Seconds after the parting shot, almost always, the sun rises past the magical sweet spots that create light to bathe yourself in to a white light casting unforgiving shadows. On the way home the harsh light is behind me and everything else comes with me – the memory of those moments, the sense of peace and the captures I will have forever to remind me of these mornings.