Masthead header

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.

ALS, Amyotrophic Lateral Sclerosis, is a terminal disease. As with any diagnosis of a terminal disease anticipatory grief begins at the get go. Sometimes the grief is huge, like a king size, unmade, bed with the sheets, blankets, and pillows all piled high. Sometimes the grief is hidden, like under a smoothly made bed that when the covers are pulled back there is just a little wrinkle to the sheets. All the time there is grief, whether it is buried deep inside of us like the material inside a mattress or hanging out for all to see like a messy bed.

 

Soon, this week or maybe the next, a hospital bed will be delivered for Tom,my guy with ALS. It is a bed that will, hopefully, accommodate his increasing dependence on care, particularly at night. A recent serious infection that went septic accelerated the need for a bed that will assist in preventing pressure sores. It was a hard-fought battle with the VA to get the bed that would be best for a person living with ALS. It is a bed in which a number of veterans have received from various VA’s across the country. It is a battle I lost. Is it the second-best choice of a bed? I do not know. Maybe it will be better than the best bed I know of, requested, and was denied or maybe it will be the worst choice possible. This will reveal itself soon.

In many ways, this moment, right now, if I could, I would hold onto forever. I was angry with myself for giving up the fight for the bed we requested. I could have appealed and that would have potentially delayed the delivery even more so than it is. The bed we wanted has a two-week delivery window. The bed he is getting is an eight to nine weeks process from beginning to end. If I lost the appeal maybe it would late May or June before he got what he so desperately needed. I got myself pretty worked up over haggling with the VA over the hospital bed. I even allowed a friend to get under my skin, and into my feels about it, that to this day I have not spoken with this person. Tom asked me not to appeal. My health was suffering. Little did I know sorrow had a choke hold on me. When the hospital bed arrives sharing a bed together for nearly thirty-nine years departs. Anticipatory grief is a tricky bitch.

 

 

 

“Some people come in our life as blessings. Some come in your life as lessons.” ― Mother Teresa

Teachers are my heroes. They put up with more for less than most other humans in the hope that what they do makes a difference. If I could do it all over again I’d still choose teaching at the tender age of 45 years old. I’m fairly certain my students gave me more life lessons than I ever gave them. Tolerance, acceptance, patience, are just a few of the things that I learned along the way, and sometimes I learned them the hard way.

I had a student years ago who was in one of my civics classes with 12 students in it. He was one of the most annoying kids I had ever met. He was in a lower level class, some had IEP’s and some did not. The ones who did not have an IEP had IQ’s in the range of 90 or so. They all struggled in school forever. By the time I had them in the 10th grade they had built up their defenses, their fuck you’s and up yours to each other were frequent and quiet. They thought I couldn’t hear them. With only 12 in the class they were always in ear shot of me but they never seemed to realize it or maybe they did and that was their challenge to me. To the degree that it was possible I ignored their profanity because if I didn’t I’d have to send them to the office and they wouldn’t have a chance at learning. If I sent them to the office every time I heard a ‘bad’ word I’d have no kids left in the class some days though a time or two it crossed my mind to do just that.

There are times we lose our patience as teachers. We are asked a thousand times the same thing. Or the same student is late, again, and again, to class. As a high school teachers we can have a hundred or more kids we teach every day, five days a week. Some of my colleagues, to help pay the bills, also teach at night. Ninety-nine percent of the time they have amazing patience, and every once in a while they don’t and when they don’t, when they lose it, they take a beating for it either from others or from themselves.

This one most annoying student tended to be rude and disrespectful to me, and to others in the class. He almost never passed a test, never did his homework, blatantly cheated and often nodded off during lessons. It was a first period class. I’d really had it with him, and totally lost my patience with his attitude one day, not a proud moment but a human one. I don’t remember if it was my second or third year of teaching. It was easy to imagine leaving the profession. In fact I daydreamed about it on my hour drive in each day that semester.

With nothing left to lose I changed my teaching style up. I started each class with a question: In the last 24 hours what is something good that happened that you can share with us? No negatives were permitted. After a week or so this teenage boy raised his hand and said his momma bought him his first mattress, his first bed that was up off the floor and he didn’t have to share it with his siblings. Humbling. It wasn’t my last moment like this as a teacher but it was my first. I judged his poor behavior unfairly without taking into consideration that all I knew about him was wrapped up in 90 minutes a day 5 days a week. I knew nothing about his life up until that moment, then I knew all I needed to know.

I share this story not because I did something great for this student, in fact, quite the opposite, it was what I learned from him that was so impactful in my life. Sometimes I forget this lesson and quotes like Mother Theresa’s that I started off this post with remind me of the lesson I learned so long ago.

Who was your lesson in life?

Surviving is important, no doubt about it, without it we have no chance of thriving. Recently, my husband, Tom, that guy who has Amyotrophic Lateral Sclerosis, ALS, went through a difficult illness and surgery. ALS alone is challenging enough, add on sepsis and gallbladder surgery within days of each other after an umbilical hernia repair a month prior to this and you’ve got some serious problems on your hands.

There is a lot to learn hanging around with Tom. He consistently leads the way on living life to the fullest, in whatever capacity that is at any given time. Last week when he was in pre-op he was chatting it up with his surgical team offering to paint them a Van Gogh like painting, actually he said he offered to forge a Van Gogh if they want one. He was 100% accurate in his assessment of himself.

Tom came to painting, or painting came to him, difficult to tell which one it is, a long time ago after he survived a serious brain infection. He could no longer function at full cognitive capacity which meant he was unable to continue working in the insurance industry in New York City. Among other issues he suffers from executive function impairment as a result of the infection. As a young man of 38 years old he refused to allow this to define him for the rest of his life, enter painting. Not just any painting but oils, and with a palette knife. For people with an intact cognition, and a modicum of talent, it would take a few years to be reasonably good. For Tom it has been decades of effort, tenacity, and learning the same thing over and over and over again to be in a place where he can say with confidence, he can paint a good Van Gogh rip off. Long ago he decided because he survived this infection, he owed it to God, to himself, and to his family to be a thriver. To prosper and flourish instead of merely surviving day to day.

After he received a diagnosis of ALS he chose the same path. He joyously rode his motorcycle until he couldn’t anymore. We built a house not far from the beach because that is what we always wanted to do. He continues to paint because he can despite the physical limitations ALS rudely puts on him. Some incorrectly label this therapy for Tom. Painting is life for him. It is how he breathes.

This last round of health challenges imposed a physical toll on Tom. I doubt we will see him sit around with the cloak of surviving wrapped around him. History tells me he will begin thriving anew. I can’t wait to see what emerges.

 

 

 

 

 

 

Van Gogh forge by TWard – 1/12/19