Yesterday, a long time ago,

he gave her flowers, from the florist.

He sent them to her home, and her work.

Now and then, he bought, and brought,

them himself.

 

Later, sometime after yesterday,

they bought a house together,

he made her gardens of

luscious flowers with scents of love

filling their home.

 

Today, all the time after the yesterdays,

he can no longer drive to buy the flowers,

he can no longer dig in the garden,

to plant and nourish flowers,

for his lady.

 

They meet the future together,

she drives him where he wants to go,

he still, sometimes, buys her flowers.

 

She makes the gardens for him,

her gentle man,

at his direction,

to the finest detail.

He cuts her flowers,

now and then, from their garden,

because he still can,

and she finds she loves him more

this day than yesterday,

and will more so

each of the tomorrow’s

that come after today.

~MHW

 

 

When Joe is visiting he hears me getting coffee ready before Tom is up. It’s early. Sometimes I don’t hear him come downstairs. I jump when he suddenly appears in the kitchen. He gets a kick out of it.

Over Christmas when he was here I asked him if he wanted to see sunrise with me and Poppy. We were in the middle of a string of warm days. Sunrise was around 7:20.

When we got to the beach he couldn’t wait to get out of the car and see the beach this early in the morning. This is a photograph of Joe with his metal detector. He was hopeful he would find a treasure. He didn’t find any with the metal detector. Someday perhaps he will remember this morning with us and know some treasures can’t be seen but only felt.

It was magical. There were maybe two or three others scattered on the beach. He wasn’t overly impressed when the sun cracked the horizon. It was a huge uninhabited play area for him. He did all the things kids should do on the beach, find shells, dig holes, write his name really big in the sand, run, run and run some more.

Joe is eight years old with an enormous heart. Children are not often seen for their caregiving roles outside their homes and sometimes inside their homes. They are Hidden Helpers like Joe. I see them. I hope you do as well and that you give them extra everything from your heart. We can never over love our hidden helper children.

I was helping Tom, I had his arm through mine, get through the sand. There were two steps up onto the boardwalk he still had to traverse, as well as the long walkway to the car. As we got to the steps Joe came up alongside Tom, took his arm, and said “I got him, Granny”. That’s the last time Tom would be able to safely walk to and from the car to the beach.  There is no photo of this moment. It’s inscribed in my heart, where it belongs, forever. I hope it is in Joe’s too.

Nothing is promised in this world. Make memories while you can. That’s my message. #EndALS #LivelikeLou #Semperfamily

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Ten years ago I was at the beginning of the last semester I would teach face-to-face. Tom was diagnosed two years earlier with ALS. The lifespan from diagnosis is considered to be two to five years. Time was clicking. We needed to make decisions for what the rest of that time looked like for him, for us, and for me after.
Our house was beautiful, big, too much for someone with ALS, and certainly too much for me on my own. We needed to make big shifts, so we did. The market was a seller’s nightmare. We got out by the skin of our teeth. Off to Wilmington, we went to a smaller house, by the beach which reminded us so much of home (Long Island), and a job for me teaching virtually…way before it became education’s global, temporary, answer to a pandemic.
The best thing about teaching virtually was my colleagues. I adored them. Teaching virtually was just okay.
I thought maybe one day I would go back to the classroom but I didn’t and I won’t for so many reasons.
The last semester I taught face-to-face was my favorite. It was my seventh year teaching. I was teaching AP Psychology for the first and last time. I loved it. I had 30 students. We were on a block schedule. I had them for 90 minutes, the last period of the day. Some of them were smarter than me. If they knew that they were generous and kind and never let on.
Biology is a huge part of any psych course these days. As a social studies teacher, I struggled with the content. It wasn’t my thing. One of my teaching friends, Jill, shared a lesson plan style with me, Jigsaw. You put the students into small groups and assign them a specific piece of content to learn for the purpose of teaching it to the other groups. I put them in 10 groups with 3 members each. Each week the groups were assigned chapters. I often learned as much as them.
Over a week they became mini subject matter experts on their topics. On Friday’s the fun would begin. I was the timer. They were the teachers and learners. They had to include lessons for various learning types. They were so fun to watch. Most of them scored 4’s or 5’s on the AP exam.
I didn’t love them anymore or less than my other students. I had students from all kinds of home situations and learning abilities. They each brought something different to my life. I hope I did the same for them. I have to say I did have the most fun with these AP kids. They were hilarious and motivated beyond anything I had ever seen. They seemed to love this style of teaching. They literally made me look so much better than I really was for them.
I was so lucky to have had the opportunity to teach for the time I did. It made me a better human.

 

Once upon a time, a long time ago, I made a resolution, or two or three, at the beginning of every year. I’d reflect on the previous year and think about all of the things I didn’t get right or didn’t try. Not once would I remember what my resolution was for the year I was reflecting on. Whatever it was, it didn’t matter because by day three of any new year I had already broken the promise I made to change this or that, including and especially if the promises were to change any of my behaviors. Toward the end of a year, on the verge of the beginning of a new one, resolutions became another way for me to create expectations of myself that were likely unattainable. I’d aim so high I’d fail.

One year, and I don’t remember which one, I decided to stop with all of that. Sounds like a resolution doesn’t it? “I resolute to not make any more resolutions” but it wasn’t. I didn’t promise myself I’d do or not do something in the coming year. I didn’t look back over the year and say I failed or succeeded at anything and try to fix it or get better at it with the promise of the new year.

It doesn’t mean I stopped working on myself or trying to work on self-improvement throughout the year. I take a micro approach to self-improvement endeavors. Instead of looking back at a whole year or forward to a new one with negative connotations, I created a positive perspective of being a work-in-progress with short, medium, and long-term goals that I tweak as I go. I figure out what I am doing right and do more of that. Whatever it is that isn’t working I let it go.

I do enjoy the leap from one year to the next. I’m not sure why I like the New Year feel. Maybe because the holidays are over so the house feels roomier, and somewhat cleaner, without all of the decorations. Maybe because it’s staying lighter longer and more of that feels good. Maybe because January is my birthday month and I like celebrating. Maybe it’s because I’ve become a Resolution-less-ist and enjoy the moment of one-year ending and a new one beginning without the added stress of once a year setting goals to fix my perfectly imperfect self with empty promises.

 

 

 

 

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.