The month of November is National Caregiver Month. There are over 53 million people caring for family, friends, and neighbors. They come from all walks of life. The kind of care they provide can be as basic as dropping off groceries once a week to 24-hour care. The 2021 theme this year is “Caregiving Around the Clock”.

Caregiving around the clock can be needed for many reasons, for example, because a person needs suctioning a few times an hour every hour or it can be because a person cannot be left alone. There are many different reasons that bring on round-the-clock care. Some people have had a stroke or paralysis or are in the late stages of dementia or have Amyotrophic Lateral Sclerosis (ALS). My round-the-clock care is ALS-driven because that’s what my spouse, Tom, has.

The day goes something like this:

My alarm wakes me at 5 a.m. I do this so I can get up earlier than Tom and have a cup of coffee, alone in the dark, with a candle to keep me company. I play my favorite Spotify playlist, Bamboo Flutes, to set the tone.

Anytime after 5:30, though closer to 6, Tom sends me a text that he is up and could I get him dressed. The day begins in earnest from there. We test his fasting glucose. I get him something to eat and set him up with his coffee. I get my second cup going while I’m doing these things.

Once he is settled in and I’m done with my coffee I head to my office/studio/fitness room to work out. I have a treadmill I use most mornings, some light weights, and if I’m lucky I’ll find time to take an online yoga class later in the day. Some days I skip working out, get us out for sunrise with our coffee and my camera. I love those moments best of all.

Next up, after working out, I help him with medication, a shower, shave, get dressed, make the beds, gather the laundry, and a snack for Tom while I make some breakfast for myself. It’s mid-morning at this point, about 10 a.m. or so.

The rest of the day rolls out with the business of living with the all-encompassing disease that ALS is. Tom no longer drives so I’m the errand person for all the things. He needs respiratory treatments an hour twice a day. Meals are made, assistance with eating the meals, and we also squeeze in time for him to paint. He loves painting landscapes. The disease has become more demanding so finding those moments of freedom to paint, or for me to do some writing or photography, are becoming more limiting.

In the evening, after dinner, Tom likes to spend time learning guitar. What is a guy doing learning guitar who has a pretty close to paralyzed left hand and a weakened right one thinking? Crazy, right? He uses a slide. It’s so engaging for him. While he does that I go to my favorite meditating place in our bedroom and spend time doing just that, meditating. Meditation has been incredibly beneficial to my overall emotional health. The more I meditate the strong my meditation muscle becomes and that helps me with the many stressors I encounter on any given day.

We close out the day with a little bit of TV watching before bed. I turn his hospital bed on before we turn in for the night. It gives it a chance to get going before he gets into it. The one thing I do as a caregiver that I’d rather not is give him an insulin shot at night. It has to be at night and the preferred administration time according to his doctor is anywhere between 9:30 and 10:30.

In our room at night, it’s noisy. It has various little lights. I’ve figured out get-arounds but for a while there it felt like Grand Central Station. The hospital bed makes inflating and deflating sounds. The non-invasive ventilator has its own special annoying noise. The little lights are everywhere…on the ventilator so we cover them with a washcloth, on the end of the hospital bed so we cover them with a handtowel, on the ceiling lift (when needed this helps me get him out of bed) has lights so I taped over them. I wear an eye mask and Bose Sleep Buds to get through the night but they don’t always work. Every few nights insomnia hits me like a bowling ball in the face. I lay awake thinking about all kinds of things but the worst thoughts are the ones in which I doubt my ability to care for Tom. I’m getting older just like he is. It’s a tough disease. Even though we have been doing this for 11 years I lay awake knowing I’ll never really be ready for it to all end. Nights are a challenge.

Someone asked me recently if I could take respite to get away for a few days. The simple answer is no. He needs 24-hour care. The complexity of lining up the proper care and knowing one hundred percent no one would back out on me is what keeps me home and keeps Tom as safe as is possible.

For me, and many like me, caregiving is around-the-clock care. I am giving a shout-out to all of my caregiver warriors who do as I do. I know how hard this is. I see you.

Two things can be true at the same time.
It’s raining yet the sun is shining its beautiful self.
One can be frail and not broken.
One can be resilient yet soft.
One can have melancholy while filled with gratitude.
One might be young yet seem old.
One might be old but seem young.
One may have troubles yet appear calm.
One might be vulnerable but is strong.
One can know hope yet feel hopeless.
One can have friends but be lonesome.
One may be dying yet be fully alive
One may love but also be loved
Two things can be true at the same time.

 

Most days I run, in the morning, on a treadmill, inside the house, in my office. Sometimes I run outside in the early morning, I like that best.

I lift weights, light ones, nothing too strenuous, just enough to give some pump to my muscles, some definition, some strength to rely on when I need it. I like how much it makes me sweat.

A few times a week I take an online yoga class, it’s gentle, it’s stretchy, it’s mindful. It helps with balance both physically and mentally.

After the day’s caregiving chores are done I meditate for fifteen to twenty minutes, to re-set, to breathe, to get lost in my head, to breathe, to cleanse the day away. To breathe, to breathe, to breathe…

It reads like I have all of the time in the world to exercise and breathe. I do not. I fit it in, I make it happen, I discipline myself to make the time.

It took years to figure out how to care for me while not diminishing the care I provide for someone else.  For a million reasons, it’s easier said than done.

Self-care is an overused phrase. It’s easy to lose sight of its deep significance, its power to take us from feeling burdened to a sense of well-being. Manicures and pedicures are easy self-care offerings, they are more like candy than a nutritious meal, they just scratch the service. Rich self-care, taking care of ourselves with as much love as we do for those we care for, will sustain us through our most challenging times, it is our oxygen.

 

Me: Hello Grief. Why are you inside of me today?

Grief: There are several of us lurking around. Which one are you referring to?

M: I have no idea because, quite frankly, I didn’t know there was more than one of you. What I do know is the ache I feel hurts, like a dull physical hurt inside my chest. Sometimes you are a dark cloud floating inside my body. Why don’t we cut to the chase and you tell me which grief you are and get it over with? This way I can figure out how to feel better.

G: First of all, there is no guarantee you will feel better by putting a label on it. Labels only tell us the name of something. They aren’t informationally dense. Grief can be complicated. In my family, the family of Grief, there are several variants of us that can lay on top of one another and sometimes merge together and then pull apart. Grief isn’t a one-size-fits-all. Grief is fluid. It can change how you feel by the minute, hour, day, weeks, month. It can keep you on your emotional toes. It can lay dormant for long periods of time. To learn about us you must be ready to acknowledge, understand, and work with whatever version of me is inside you at any given moment. Are you ready for this? Or do you need some time to think about it?

M: I’m not sure. I feel scared about this process. As much as I want to get better, I am also used to you being here. What will it feel like for me to learn about the different kinds of grief? Will they always be with me? Will I cry? Will I learn to cope? Will my heart heal? Will I always hurt?

G: You have asked some good questions. Some of us have been with you for a long time. Years. At least one has been come and gone. You did good with that one. Because of what is happening in your life you will have some of us around for a while.

M: That seems a bit unfair to hang around for long periods of time. I feel like I would be happier if you weren’t here at all. Sometimes you are like a pebble in my shoe that won’t come out. Sometimes you are like an eyelash trapped in my eye forbidding me to see clearly. Sometimes, though not often, you are a boulder that drops on top of me squeezing the breath out of me. When will you finally leave?

G: It’s so cliché but I’ll say it anyway life isn’t fair. Life is life with solvable and unsolvable problems. Know this I do not like being inside of you. I’m necessary. The Grief Family exists to help humans cope with losses – death, disability, trauma, tragedy, major life shifts. When we are rejected, we only come back later and sometimes with a vengeance. Others can help but only you can do the work of resolving feelings of grief. Allowing yourself to be open to the emotions of us is a healthy pathway for you.

M: Will you be gentle with me as you teach me which ones you are?

G: I will try. My gentle may produce some of the greatest pain you have ever felt and you will grow more than you can imagine. It will be worth it for you if you are willing to put in the work . Let’s ease in with the one you have resolved. Let’s get started.