To be a caregiver is sometimes a choice, and sometimes not a choice. Sometimes being a caregiver is a gift, and sometimes being a caregiver is a painful experience. Sometimes the caregiver experience is all of this and more: a choice, not a choice, a gift, painful, joyful, heartwarming, satisfying, frustrating, and limiting.
On October 23, 1993, unbeknownst to me I would become a caregiver for the rest of my existence. On that day it never occurred to me that a new role was added to my life. All I knew was that my husband, Tom, was a very sick man on this day, and needed help, quickly. What we did not know but would soon learn is he had encephalitis. The encephalitis damaged his executive functioning ability and other, various parts of his brain.
All the things I knew about our life, our family’s future, and myself was flipped upside down on this day. Tom was 38 years old and I was 33. Our kids were 9 and 10 years old. Tom was our leader, he was the guy who loved us fiercely, protected us always, and worked harder than anyone I had ever known. How were we all going to survive this? It would be a few months before it dawned on me that we were surviving, and we were just surviving, because I was learning how to take the reins.
It would be 20 years before it occurred to me I was a caregiver. I had always thought of caregiving as something older people end up doing for their spouses. The first two decades of being a caregiver I did not have peer support. I did what I did because my family needed me to. Despite the sometimes-extreme difficulties I went back to work to help feed our family, to have healthcare benefits for us, to be on a forward trajectory that gives hope instead of mired in the muck of our lost man. Tom was with us but not with us in the way he was pre-brain infection. I finished my undergraduate degree, and earned two master’s degrees, all on a part-basis while I worked, raised my children, and cared for Tom. Faith and flexibility kept me in the game of our life, however, it was a while before I learned that this was key to success.
For a few months, when Tom was at his sickest, I was so overwhelmed with fear, and isolation that I nearly gave up on life. We had no income, his disability claim was denied, and he could barely get out of bed. It was winter in upstate New York. It snowed, and snowed, and snowed. The kids were out of school more days in January then in school. They were bouncing off the walls with boredom. Tom’s eyes were a mess and he wore sunglasses indoors because the sun reflecting on the snow was more than he could take. I hated it all. There was no relief in sight. I was more alone than I ever thought possible. Everything I had wanted to do for myself as the kids got older was permanently shelved. I was grieving hard and did not know it. I couldn’t see my faith through my tears and hurting heart, it felt gone yet it wasn’t. It was always there, and I know it because I am here today.
June of 2010 Tom was diagnosed with Amyotrophic Lateral Sclerosis, ALS. He is a Marine Corps veteran. ALS is a service connected disease. It is a devastating, fatal diagnosis. Even then, when Tom was diagnosed with ALS, I did not categorize myself as a caregiver. It would be three more years after the diagnosis, 2013, before a few younger caregivers of veterans pointed out that I was a caregiver, either way, with or without the label, Tom is still my husband, still the love of my life, and I would not have cared for him any differently if I had always thought of myself as a caregiver. Spouse first, caregiver second.
If I was sitting in a room with younger caregivers to impart the wisdom I have gained over the years I would say if you are faithful it will not leave you even if you feel you do not tend to it daily and it will carry you in the darkest of times. I would say embrace flexibility as a way of life, you will be less frustrated and stressed, it will carry you through some tough times. I would say to take care of yourself because if you do not chances are you will find later in life that some of your health issues are as a result of neglecting your own care. Self-care is health care. The better we take care of ourselves the more successfully we will care for our loved one.
Every now and then a good day, and some luck, comes our way. It wasn’t too hot or too sunny today. Tom ‘husbands’ his strength well. In preparation for painting en plein air this morning he physically did almost nothing the last two days. Though his muscles are now depleted of energy after the effort he was able to stand while painting this morning.
The last two photographs informed this painting. They could be taped together. The sky was split. The one of Tom while painting I took at the end just before he called it a day. The sky had changed up and the light was filtering down beautifully.
It’s important to add to this little piece that the fact that Tom can still stand is not a measure of God’s love for him or the level of care he receives. ALS is a bastard of a disease. It is a roll of the DNA dice how it manifests itself in someone. Some people have a fast, make your head spin, progression and a few are slower in progression like Tom, most are somewhere in the middle. The fact that Tom can still stand does not in anyway indicate how difficult the wasting is on his body – it’s exhausting. The truth of it is no one can control ALS.
What we can control is how we choose to live with the hand that is dealt to us. In this I follow Tom’s lead. He is the master of courageously facing this enemy day in, and day out. He relies on his faith to get him to get through. Intellectually, emotionally, and spiritually, he doesn’t give in, and he doesn’t give up.
From the day of diagnosis to May 1, 2018, this is how many days Amyotrophic Lateral Sclerosis, ALS, has been in our life. It is a lot of days. It is a long time. It feels like yesterday. It feels like time is on speed.
The journey to a definitive diagnosis was a long time in coming. It took years. It was fear filled. It was words we did not want to hear.
Fasiculations, muscle weakness and atrophy were, and are, daily reminders that this is a disease of epic proportions. Tom’s progression is slower than most accounting for the difficulty in diagnosing it. It was not a surprise that it was ALS. It took our breath away. It made me think of all of the days we had together. It made me scared of our future.
My dad used to say Tom and I were tied to the hip. It’s an old-fashioned kind of saying. It’s a true statement. It’s a poignant reminder of our mad love for each other.
We saw a number of specialists in search of a diagnosis. We traveled up and down the east coast, over a few years, seeking an answer to his ills. It was a mission. It was important to us to know what was wrong. It is a time I miss, a time of not knowing. It is ignorance is bliss.
After going through the tests, and the tests, and the tests, we saw one last neurologist. He kindly sat in front of Tom, making eye contact with just him, as if I was not in the room, and said he was sure Tom had ALS. That was it. The diagnosis became real and life changed. It was our new reality. It was all at once a relief to know and heartbreaking to hear.
We left the office hand in hand and went home. We didn’t cry, not then anyway. It would be a lie to say I didn’t cry later or don’t cry from time to time. It is a hard disease. It is a lot of days to live with it. It is a lot of days of waiting for the next part of his body to not work. It is a fact that crying is a useful release of pent up sadness.
Every day is not a sad day. Most days are good ones. Our love grows deeper, as it always has, when life has thrown us curve balls. This was the curvest ball we have had to field, ever. It is a beast. It will not destroy the tenderness we have for one another. It is fatal but it cannot kill our heart. It isn’t allowed.
May 1, 2018
Standing up for what you believe, that’s what I saw today when kids all across America participated in a walkout in solidarity for their 17 peers who were mercilessly gunned down in what should be a safe place for every young person.
Perhaps, over time, they can accomplish what adults seem incapable of fixing. Safe schools. It isn’t one problem that leads to violence in schools. It is multiple ones.
Their collective voices were heard today – if you disagree with them, you heard them – if you agree with them, you heard them. Peaceful disobedience is the very essence of what America was founded on. As a student of government, a teacher of government, as an American, I applaud them for taking a stand. #NationalWalkOutDay #NeverAgain
To some ‘on a whim’ translates to ‘let’s do it’ and it happens in the snap of the finger. To us it means, oh maybe, an hour or more to prepare, get the van loaded with everything. Everything is the painting gear – easel, tubes of paint, rags, tools – Tom and the wheelchair, Maddie in her vest, some snacks, and my photography gear.
On a whim I offered Tom the opportunity to plein air at the beach. You see, if I don’t he can’t go. He cannot drive anymore, and hasn’t for quite some time. It was a perfect day for it. Overcast, chilly though not freezing, and still off season, so not too crowded, and he had been in too long because of my work schedule.
ALS and ‘on a whim’ are opposites. I forget these things sometimes and that’s okay, it’s even good. It means, to me at least, that though Tom has ALS, we don’t let it define our lives. We work around the problems it presents.
I thought I would kick back and relax while Tom painted but I couldn’t help myself. I had to document the few hours we were there, after all, isn’t that what cameras are for?
With assistance he can still get to the sand. The assistance comes in chunks of effort. We do it in stages. He transports things with his wheelchair and I carry bunches of stuff that we can’t load on him and the chair. There are hooks on the back of it that help me so much, it’s crazy how much I love them! Who would have thought hooks could make someone happy? All the while we are mindful of Maddie being in a safe place with us, secure and protected from dogs that are off leash. Back and forth from the van to the beach and I’ve got him out on the sand. Then we reverse it when we are done.
This ‘on a whim’ took the better part of five hours from beginning to end.
This is what I get out of this series of photographs: there is more wasting than ever in his hands, his dominant right hand is weaker than it was the last time I took photos of him painting, his left hand is barely useful but he gets everything he can out of it. Tom’s resilience is incredible and enduring. He doesn’t give in, or give up, easily.
To the degree that anyone can fight this formidable enemy clearly he does. Though he can’t stop progression, he can control whether or not he allows it to infiltrate his heart and soul. Day after day, hour after hour, minute by minute, any time ALS tries to lay it’s negative shit down inside his brain, he shoots it down with a 50 caliber thought bullet.
He spends time organizing his thoughts before he gets started
Not so easy to squeeze the paint out anymore
Or open the tubes
Just like that he is transported into his other world of painting
His downrange look at his inspiration for the canvas
This look though…little did I know he wanted to know why I didn’t remember to bring his palette knives…he had to suffer with brushes.
So much concentration
Working with what he’s got
These are the ‘notes’ he takes on canvas. He will finish this in his studio tomorrow.
#ALS #Every90Minutes #VeteranswithALS #Onceamarinealwaysamarine
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