Caregiving Around the Clock

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.