You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.
Slowly, so slowly at first, it seemed almost as if you might be imagining it all.
First, the words of condolences.
“I am so sorry you are going through this.”
“I heard about the diagnosis. I am so sorry.”
Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.
It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.
The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.
You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.
You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.
The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.
You do everything in your power not to click on that icon, you try so hard to stay away from social media.
You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.
You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.
The connection is gone.
Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.
The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.
You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.
If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.
You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.
Would you like to know what it means to be a caregiver?
It means always…ALWAYS putting them first.
Today is the last day of November. It is also the last day to recognize caregivers. November is the designated month to celebrate the caregivers in our lives.
And much like what it can feel like to be a caregiver, the month went by with little recognition. And that is okay.
Most of us don’t do it for the praise, or the pat on the back. We certainly can’t say we do it for the money or the fame. We do this for someone we care about, someone we love.
But, for just a moment, I want to give you a peek inside the life of a caregiver.
• We get interrupted sleep, and we seldom (if ever) sleep a full 8 hours.
• We eat our meals last, or even standing up, in a rush to move onto the next check item on our to-do list
• We juggle so many things at once, we have a hard time focusing.
• We coordinate, organize or rearrange our schedule to take care of everyone else.
• Sometimes, we want to think of ourselves, but then feel guilty for it.
• We worry…all the time.
• We sometimes feel overwhelmed at the responsibility of caring for another.
• We have a rash of emotions that spread over us quickly, and yes, sometimes they might seem irrational. Don’t worry, the feelings dissipate quickly.
• Showers become the only private time we get to ourselves…
• We are the advocate, and the voice and the warrior for the person we care for.
• We have moments of selfishness, of wanting to not to have to think of, or put another person over ourselves all the time.
• We remember how much we love the person we are caring for, and somehow, all those emotions, and the weight of what we do seems less heavy for just a while.
• We often feel alone.
• We cry in the shower because the sound of the water washes our tears and drowns out our anguish.
• We smile through the irritations, or frustrations…and yes, even through the pain.
• We can’t imagine not trying so hard.
• We live with guilt over not being enough…every.single.day.
• We know that this role we play won’t last forever.
• We hate being told it’s not about us….
• We get irritated when others try to give us advice but have no real-life experience with the same situation.
• Seeing our loved one smile can make the frustrations and hardships more bearable.
• We would still make this choice, if it means just one more day with those we love.
Remember, you will either be a caregiver or need a caregiver at some point in your life.
If you know a caregiver, show some empathy and compassion. It’s a tough job.
If you need a caregiver, show some empathy and compassion, it’s a tough job!
The dealer looks to each player at his table. Shuffling, he asks for their ante. The sound of the chips as they bounce in a pile is all the indication the dealer needs. He shuffles…eyeing each player as he slides the cards along the felt table top.
The players duck their heads low. Holding their hands over the top of their cards, they peek at what has been dealt to them.
Some of them silently groan.
Their cards don’t offer much. They will have to discard many of their cards, and hope for something better.
Other players are inwardly giddy. Their hands are set. It won’t take much to win.
Each player discards a portion of their hand. Looking across at each other, some for the first time, they take in what each player is doing. Looking for each other to show emotion, a tick, a nervous twitch, anything to show or tell them what hand the other person has, as the dealer gracefully pulls the discarded pile away, and swiftly thumbs the new cards.
The players shift in their seats.
Some players had poor hands, but the newest cards have given them an advantage.
Some players had a fairly decent hand but would have preferred a better one.
Others, hanging their heads in shame, they throw their cards down with a heavy sigh…not willing to bet, or even try to bluff for a win.
The dealer raises his eyebrows.
Who will raise the stakes? Who will show their “tell” and give it all away by a twinge of their mouth or a tap of a finger?
Most players throw a few chips in.
Not a word is said.
The tension is building. Spectators have crowded around the table. Not brave enough to join in but enthralled with the daring and recklessness that these players have.
It is time for the reveal.
Who will win?
One woman holds a pair of nines.
An older gentleman, he had bet everything he had left…on his straight.
It was the young man though. The one who had been quiet and unobtrusive the entire time. He was holding a Royal Flush, yet to everyone’s surprise, he didn’t gloat. He stood, accepting the round of applause for his strategy and discipline. He then, walked away, leaving all his chips on the table.
A young woman, her eyes bright and sharp, chased after him. She yelled, “Sir, you forgot all the money you won!”
He turned back, and said, “It was never about winning. It was simply for the joy of playing.”
Which player are you?
How are you playing the cards you have been dealt? Sure, you could hand in a few cards and hope for a better hand. But if you can’t find happiness and the thrill of living in what you have, what makes you think you can with an entirely different hand.
Can you play the game simply for the joy of living, or are you still searching for different cards to make you happy?
Something to ponder…
There was conversation. There was camaraderie and a sense of connection. A piece of my day, with no illness to navigate, or arrange, or schedule around.
A meal served as voices were ebbing and flowing like the musical notes floating through the air.
Beautiful glasses of wine, handshakes and hugs.
The banging of kitchen equipment, and a chef making his rounds, as servers carried trays of delicious food, hustling to deliver plates of deliciousness.
And I sat there, absorbing it all.
I had entered through the back door. There were two small steps before I gracefully pulled the door towards me and glided in. This time, there was no scurrying in the rain to the front entrance for handicapped accessibility.
I chose a seat close to the fireplace. In the middle of a long table in fact, with chairs crammed in as close together as possible.
I didn’t have to try to rearrange the seating for a wheelchair to fit. I simply made my way, and sat where I wanted.
How simple…and how easily I forget.
These moments are few, but so very precious.
A chance to reconnect with others, without the sideways glances. A conversation with interruptions of jokes or inquiries of the Thanksgiving gatherings, and laughter.
A napkin in my lap, that wipes only my lips. A glass with no need for a straw.
A quick jaunt to the bathroom, with no worry of space, or who may be in the men’s room. Is there anyone who can be on the lookout? Instead, I push the door that says, “Women” and it is a non-event.
No thoughts of illness…ALS…or caring for someone…
My brain slows. My shoulders are relaxed, and I feel my cheeks smiling, not forced, but a smile born of gratitude for this moment. I feel…..
How silly of me…how selfish to want more of those moments.
Hugs goodbye, I walk back out into the rain.
I take my time. Twinkling lights are everywhere, as I feel drops of moisture on my upturned nose.
Being present, and appreciative for all that I have.
Sad the evening is over, but grateful for the home I get to go to.
Who needs normal anyway!?
He looked like Santa Claus. That’s what I thought the first time I met him. Even Matthew said his blue eyes were twinkling and his cheeks were a little bit rosy. Ironically, he had no children of his own. I bet he has little children following him where ever he goes, wondering if he is the real thing.
That was over six months ago now.
He walked into our home, with his wife following slowly behind.
She was tiny, small-boned and looked as if a strong gust of wind would blow her over at any time. Her clothes were hanging loosely off her frame.
They seemed like one of those couples who were mismatched in every way. She walked slowly in, keeping her head down. Her shoulder length hair dull, and her face looked gaunt. “She looks angry,” I thought to myself. I can’t be sure, but I don’t think it was her idea to come over. He seemed to take up the entire entryway with his broad shoulders and loud voice booming down the hallway. I invite them to sit down for coffee.
They had that deer-in-the-headlight kind of look.
She had been diagnosed with Bulbar-Onset ALS.
That means she was losing her ability to speak. Although she looked perfectly fine, the disease was affecting her facial region. That means, she could walk her massive dogs around the block, and garden all day long if she wanted to. She could still care for herself, brush her own teeth, dress herself or cook a meal, but she was losing the ability to talk. The ability to chew, or swallow foods and liquids. The ability to have facial expressions.
The few times she tried talking to us, her words slurred to an almost incomprehensible moan. The effort to make her mouth form each word was drawn out…so slow… it was obviously irritating to her.
I remember Santa kept leaning in. His eyebrows drawn together, intently focused. He was trying to watch my mouth as I spoke. He was legally deaf. I tried not to groan in despair as he said this to us, a bit louder than normal, which makes sense, since he was reading my lips.
This was an awful combination and would become the biggest challenge for them.
Our ability to communicate was difficult, but we muddled through, and I took down some notes for them to remember for later. Advice about foundations and agencies to contact sooner, rather than later.
They left our home, and I don’t think we were able to lift their spirits or help them feel any better about the situation. Normally, I like to think that either Matthew or I can help one or the other feel a bit less scared. Or at least a bit less alone.
This couple…I don’t think that we helped them at all.
The man with the twinkling eyes has stayed in contact with me, though now it is only through email.
He often writes about his wife, her care and thoughts about future needs. I offer suggestions or contact information for people I think may be willing to help. I don’t think he has bothered with any of it. Hospice is involved now. She has given up. He seems lost.
I am sure she gave up as soon as she was diagnosed with ALS.
Only, he hadn’t recognized it right away.
Her anger and bitterness at the thought of dying this way has left him exhausted. It now makes me wonder if his cheery smile was all a façade. A safe place for her to lay her burdens down.
I know it must be draining him.
I meet many couples who are on the same path as Matthew and I. The diagnosis is the same, but the journey itself poses different obstacles for each person.
I find comfort in knowledge.
When I knew Matthew had ALS, I immediately researched anything and everything I could. I read every case study, medical journal and book I could find. I asked questions, sometimes repeatedly. I wanted to be prepared.
Nothing prepared me for the reality. But understanding some of it has been how I have managed to cope as the reality of ALS for us has been more gradually than for others.
Matthew was the opposite of me.
He waited to learn. He did not search for the answers until it was time to know. He was proactive in ordering every device and item needed to make my care for him easier, but he asked nothing about what he would be facing until it was time to face it.
I assume, as with any disease, one must navigate the path that they feel is right for them.
I try hard to respect those decisions.
After all, who am I to judge?
Yet, how can I stand back and witness the decisions people are making, knowing it is going to make their life more stressful. Often, waiting too long can mean the difference in how the patient will respond to every day ups and downs, and it can lead to depression and anger for everyone involved.
Instead of their last months filled with family and memories of being able to say what needs to be said, it turns into a nightmare of one bad decision followed by another, which in turn means one emergency followed by another. It is my worst fear and one that I will do everything to avoid. I can’t make others think this way so instead I try to gently point out better options if I see them struggling.
“Please submit a grant request for a ramp or a bathroom remodel.”
“Have you considered a support group?”
“Please reach out to as many people as possible for help.”
I guess I am trying to help ease a part of their burden, but what do you do when they will not take your advice?
What do you do when you see that they are losing faith, and the will to fight?
They have refused help.
They have refused support.
They have refused the doctor’s advice.
I am angry at the helplessness of how I feel right now….
It is just one more constant reminder of how little control I have in any of this. I am forced to not only be buckled into this ride for the duration, but also to watch helplessly as other victims crash along the way.
I can’t reach the wheel they are steering to move them out of harms way, and I am stuck to sit back in a ride that I can only vaguely remember jumping on.
And all I can do is wonder, “What is the point of all of this?”