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.

 

ALS can steal and steal and steal in ways that can’t be prevented…at least not yet. It can’t steal hope, desire, and plans for the future.
Tom’s Marine Corps garden. He has desired a garden with Marine Corps colors since we moved into the house 8 years ago. He loved to garden. He was our gardener for all of our life together until #ALS. His hope was to have this garden one way or the other before it was too late. The past few years he would plan it out. I’d carry out the plan and zippo, no Marine Corps garden.

Tom has this philosophy that a garden should give back. It should give color or fragrance or both. A garden full of green shrubs is like asking him to eat broccoli. Anyone who knows him well knows he was born with a genetic dislike for this veggie (and now all of you know this as well).

I have done nearly all of the gardening since moving here. Gardening isn’t exactly my favorite activity. Potentially this dislike was a result of me nearly having heatstroke while planting. However, over the last two years, I have given space to it in my mind in a more positive light. I’m friendlier to the experience than I used to be and more physically fit…that’s got to help, right?

I haven’t been totally alone doing this. Kate has helped when I’ve needed it. Sean put up the flag pole a few years back. It’s become a family endeavor at times for our guy.

For a while, Tom had a Marine Corps flag flying under the American flag. One day, a few years ago, we had this crazy burst of a storm come through, tornado-ish like a microburst, and it took the flag pole and some of the fence panels down. Our fantastic neighbors helped get the panels upright and shored up until we could have them fixed. We had to have the flag pole re-set as well. Last year, one of our neighbors, a Marine himself, gave Tom a new USMC flag. The USMC flag has finally found its rightful place.

Every year I have tried to appease Tom with the Marine Corps garden of his dreams. Year after year it’s been a dismal mess. This year, through no effort on my part, he has the garden he’s wanted.

The yellow Iris’ were tossed there by a guy who was doing work on the driveway. They were in his way. He dug them up and dropped them in the garden. Despite my neglect they survived. They should all be dried up and gone from my black thumb. This is the first year they have bloomed. The roses that are flourishing appeared out of nowhere. I had most of the roses taken out of the garden a few years ago because they didn’t do well back there. They were a nuisance to care for with mold, mites, and Japanese beetles having orgies for weeks on end. I never planted the ones growing in this photo. They are wild and beautiful.

I guess the moral of the story is he got what he wanted without any help from me. I think there is a lesson in this but I haven’t figured it out yet.

May is ALS Awareness Month and the Month of the Military Caregivers. Tom is service-connected for ALS and I am his caregiver.

P.S. – he has this big idea that soon twenty-nine palm trees will be in and around the garden to complete it. I hope he has some marines to can call in and get it done.

Waiting…

Caregivers often do a lot of waiting. The longer we are a caregiver the more waiting we will do.

We have often waited in so many healthcare waiting rooms we could write Yelp reviews like nobody’s business. We wait for appointments with the person we care for in all kinds of healthcare specialty practices such as:

  • Primary Care
  • Infectious Disease
  • Cardiology
  • Urology
  • Endocrinology
  • Gastroenterologist
  • Dermatology
  • Various Surgeons
  • Ear, Nose, Throat
  • Otolaryngology
  • Blood Work
  • Radiology

Then we cycle through many of these providers so often we lose count.

There are all kinds of strategies we use while waiting:

  • We try to talk to people sitting by us
  • We try not to talk to people sitting by us
  • Others try to talk to us
  • We look at our shoes
  • We play on our phone
  • Others try to talk to us
  • We open a book and read
  • We open a book and pretend to read
  • Others try to talk to us
  • We text with a friend
  • We go on social media
  • Others try to talk to us

Some of us wait so often we’ve learned how to do our jobs while waiting. We’ve learned to hotspot our phones to our laptops if we can’t get on the WiFi in the waiting room.

We wait for test results, exam results, for the surgeon to come out and tell us everything went well, for treatment plans, for care plans, for a diagnosis, for a new kidney, lung, heart, and if we could do it we would wait forever if it meant we’d never hear the word terminal applied to our loved one’s disease. We hold our breath while waiting and try to remember to exhale once in a while.

We wait with patience and impatience.

We worry while waiting.

We pray while waiting.

Sometimes we cry while waiting.

Sometimes we find moments of joy while waiting.

Sometimes we see the art on the walls while waiting and sometimes we wonder how this one or that one made the cut to be hung on the wall.

We wait on hold for minutes and more minutes and sometimes more than an hour. We get disconnected. We do it again hoping we will remember what we were calling about in the first place.

We wait for people to call us back.

We wait for durable equipment that will help our loved ones.

We wait for healthcare claims to be paid.

We wait for benefits to be approved.

We wait so long we sometimes forget to take care of ourselves.

We wait for help and when it comes, we realize we have forgotten how to rest.

We wait for the one we care for to get better even when we know they won’t.

We wait for the life we had before even though it cannot be.

We wait for the light to help us through.

Waiting well is an underappreciated skill. I’m waiting until I have mastered it before putting it on my resume.

 

Every day I see this guy give it all he’s got. He is incredibly inspiring.

So much so, I embarked on a health and fitness journey two years ago today. I was way past the category of a healthy BMI. In fact, I was considered obese. At the rate I was going I would end up an ineffective caregiver for Tom due to my poor health.

His goal has always been to kick the shit out of ALS. Boy, hasn’t he been crushing that goal? I wanted to be there for him and so I made some health goals of my own. One was to reach a healthy BMI and today I have done that.

 

The month of May is ALS Awareness Month. It is also the month  Military Caregiver are recognized. Veterans are twice as likely to get ALS than non-veterans. Tom is a veteran of the Marine Corps. He served from 1972-1975. He was diagnosed with ALS on June 21, 2010. He has a slowly progressive variant of the disease. He is service-connected for ALS and I am his caregiver. #EndALS

These are two ALS blogs I follow. I love both of these bloggers so very much.

Gill is a veteran living with ALS. He doesn’t shy away from the truths he lives with each and every single day. ALS has a formidable enemy in Gill. Gill is doing his damndest to prevent ALS from winning: Gill’s blog

Lara Garey is a caregiver of a veteran living with ALS. She is armed to the teeth with grit and determination. Under the armor are all of her feels. She is one of a very few of my best friends. When it comes to ALS caregiving we are one another’s sounding board, venting lifeline, and are transparent like glass: Tom’s Troops