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

 

 

 

She was an old lady. The oldest one I’d ever known. Her hands, in her lap, the skin was thin. Her blue veins were visible. It was as if I could see inside her skin. When I touched her hands, they were cold, always cold. She would let me gently pinch her skin and pull it up. We’d watch to see how long it would take to flatten out again, and giggle. She’d pat my youthful hands and smile. She was just a few years older than I am now. She was my favorite person and the only grandparent I’d ever known.

Her name was Jessica Constance Grubert Marten. Gram to me and her grands. I know her full name not because she was so much a woman before her time that she included them as part of her identity but because she was a storyteller. She always had a story to spin. She liked to tell me what her full name was and where she came from. I’d sit with her when she had her lunch of spreadable liver on rye toast and a cup of decaffeinated coffee, dark. She had beautiful, soft blue eyes with a twinkle at the ready. Her eyes were super large with her glasses on. It would be years before I learned she had failed cataract surgery so her glasses had a strong prescription in them. She would make eye contact just before she tipped into a story. A favorite of mine was one she shared dozens of times that never got old. When she was a young girl, she loved to roller skate on the streets of her Brooklyn neighborhood. If by chance the iceman came by for deliveries she and her friends would hide in an alley when they saw him coming from down the street. As soon as he passed where they were hiding, they would skate out of the alley and hold onto the back of the ice cart. They’d hang for a bit and let go for the fun of it. She’d laugh when she told this story. She had a great laugh. Her shoulders would shake and she would say, using her favorite name for me, “Maresy Dotes it was such fun”.

She was a lover of reading, a poet, and a piemaker. She was kind, funny, caring, and strong. She believed humans were good, most of the time. She believed in forgiveness. A whole lifetime ago and she’s never forgotten. I am different than she thought I would be, not better, not worse, just different. She would have loved the woman I became. I took her strength and reshaped it applying it in my life as needed.

She is one woman among so many millions before, during, and after her time on this Earth. She didn’t go to college or own a business or march for anyone’s rights or try to change the world for others outside of her field of vision. Her influence on my life was profound and positive, and so loving. She was comfortable in her own skin. She is, and always will be, the personification of a good human who happened to be a woman. She was, and always will be, my lady.