Would you like to know what it means to be a caregiver?
It means always…ALWAYS putting them first.
Would you like to know what it means to be a caregiver?
It means always…ALWAYS putting them first.
Tonight is not about me.
Tonight is not about my journey, or those around me…at least not in regards to ALS.
Tonight is about her.
Her bravery, her strength. Her beauty and love that shines through her eyes and her smile.
She tells me I am the courageous one, but I wonder if she ever stops long enough to look in the mirror. She is battling something she has little control over. The only choice she has is follow the doctor’s orders…and pray.
And still, she keeps moving…one foot in front of the other. She keeps pushing forward and she keeps fighting.
They have drugged her and cut into her body. They have poisoned her, day after day… and still, she keeps pushing forward. They give her statistics and case studies, and long tedious answers about the latest therapies, and percentages… and still, she keeps pushing forward.
She usually hides behind her wit and her charm. Her smile and her charisma. But tonight, she shared a piece of her soul.
I can’t take any credit for it, I wish I could. Because when people show up, and are real, and jump up and down and say,
“Hello world, look at me!”
they shine brighter than any star. And she has always had a presence about her, the kind of natural charm that most women envy and men desire. But tonight, she stood up, and shone bright for all the world to see.
I am not moved to tears often and this one left me rocked to my core.
Kristina ~ I am so incredibly grateful you are in my life. You are all that any woman aspires to be. You are brilliant and kind, and you show grit and determination when others would have buckled by now. Trust me, telling your story is not vulnerable. It is gut-wrenching…and it is beautiful.
The world needs more women with your strength and your grace.
I can only hope to one day shine as brightly as you do…
Here is just a small piece of her story…
How do you get through two radiation treatments in one day? Two spa treatments, of course!
That’s the positive side. Here’s the ugly side.
One week and a half left, if my skin can take it. If my mental health can take it. They said radiation makes you tired.
There’s no physical reason. It’s definitely mental.
Every day you go in, partially disrobe and lie down on a hard table. Arms are stretched above your head, goggles on. The entire time three to four people move about the room, aligning you, adjusting you, drawing on you, radiating you.
Arms go numb from the awkward position, but you can’t move. You itch, but you can’t scratch.
“Breathe, hold it. Ok breathe. Let’s do it again. This time hit the middle of the box. Now we’re ready. Let’s go!”
And repeat multiple times.
The breath holds are challenging for me. Sometimes I wiggle my fingers so they can see in the camera that I’m about to pass out. Holding your breath pushes the heart down and out of the way of the beam. Nobody wants a radiated heart. I certainly don’t.
When I breathe, a yellow bar rises. I’m to hit the center of a green box above it. It looks like an Atari game in my goggles.
I’m frustrated when I don’t hit the precise spot they want me to hit. So frustrated that sometimes my eyes well up. When I feel the water trickle down the side of my face I get even more frustrated “Hold it together.” It’s become my inner chant.
It’s all quick. 15 to 20 minutes most days. But it seems longer.
I’m tired after. God I’m tired. Not because I do anything, but because I’m confronted with The Cancer every day. I’m confronted with my mortality every day. It’s exhausting.
I lie there, my chest ravaged and my skin so red, peeled and on fire it hurts to move. I’m exposed and it’s uncomfortable, awkward and cold.
Then I’m done. I hop off the table and wave my tingling arm. “See you all tomorrow” and I go put on my clothes.
I look in the changing room mirror examining my angry battle wounds. Who is this person? How the hell did she get here? I slather on Aquafor and off I go.
Some days I just walk out as if nothing happened. Other times I linger to dry my eyes. I’ve never fully cried there, but I’ve come close many times. I save it for when I’m alone. Instead I suck it up and tell myself “Hold it together.” It works.
I hop into an Uber and either head to the airport or to a place here in Seattle, depending on the day of the week. Sometimes I walk, if I’m close enough. I did today. I like those days. I get into my head and get closer to God.
That’s daily radiation. Although today I slipped in two glorious spa treatments … just because.
Most of my posts about this topic are generally positive. I’m not nor have I ever been comfortable being vulnerable. So I tend not to share that side. But I’m inspired by a woman who so often shows the vulnerable side and I have learned a lot through her and her honest -sometimes brutally so – insights into ALS and the journey she and her husband are on. Theresa Whitlock-Wild shows me daily that it’s ok to drop the veil, to be honest and vulnerable and then gather up the strength and continue the damn fight. Thank you T. ❤️
So this post is meant to share a little insight into my journey and the journey of so many of us who have, had and will have breast cancer.
I think about my cancer sisters who have gone through radiation before me and I want to hug them tonight. I know what misery they went through. They are warriors.
I think about all the women who will go through this after me, not just the radiation but all of it.
They don’t yet know it. But they will be warriors, too.
It is the same process, every single night.
Mundane…sameness…always the same monotonous events that take place for bedtime.
Pay attention, Theresa!
I grunt again…I swear he is more square than he is round.
I give one more hard push…
I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent
I’m sorry you had to see me like that today.
I try to keep that side of me hidden from the rest of the world. Well, except Matthew. He has seen it a few times. If only I had known you were going to walk in, I would have pulled it together before you saw me. You seemed shocked to see me like that.
It doesn’t happen all the time. Well, actually, that’s not true… it seems to be happening more frequently lately. Maybe it’s the holidays? Maybe it’s my birthday that is fast approaching? Maybe it is all the what if’s, the why’s, or the somedays….Trust me, if I could figure out how to get it under control, I would. I would do anything to numb this…to make it stop…I wish I could make it go away.
I wish I could describe what it is like. It is so strange, especially in the moment. One minute, life is fine and then, before I know it, I am just so angry. I didn’t mean to let it happen. Sometimes these emotions just seem to overpower me.
Today though…today was different.
I was so tired this morning.
I just wanted to sleep. Matthew wanted to sit up. It wasn’t even 6 o’clock in the morning. Then I remembered…the house was a mess and my list of to-do’s is piling higher and higher. I know, I know…I will always have so much to do, but today….today, it just seemed overwhelming. My wrists and hands were already aching..and I remembered that it’s a “Shower Day.”
Matthew wants to sits up, but less than ten minutes later, he wants to go back to sleep. I am sorry. I know I shouldn’t be complaining. After all, I can still sit up. He can’t.
I know. This isn’t about me. I am not the one dying….There is no reason for me to be so irritated, right?
Sometimes, with every little need, from him…from my children…from everyone around me, I feel selfish for wanting something for myself. I want to ask what happens to me when I need something? What then? But I shouldn’t think like that…should I?
I am the one who must get up, take his mask off…then wait till he decides if he wants to go back to sleep or not.
I am the one who has to reach for the cup to give him a drink.
I am the one picks him up and transfers him.
I am the one who helps him use the bathroom.
I am the one who feeds him.
I am the one who covers him when he is cold.
I am the one…
Today wasn’t any different than yesterday. And it won’t be any different than tomorrow.
But today, with each little need, and want or request, and with each thought of what I should get done: the shopping, the cleaning, the errands, the bills, the appointments, the kids, the animals, the cooking, the showering, rearranging the garage, finish the Christmas decorations, the homework….
It just seemed like so much.
And I snapped..
I never said a word. No outward reaction could be seen. But inside, I was seething.
I became so angry.
So angry, that if someone had said something to me in that exact moment…I could see myself going insane!
There was a big possibility that would have seen my face splashed across the newspapers, “Caregiver and wife of man with ALS has gone BESERK! Aggravated Assault and Battery Charges have been filed!”
I laid there, trying to force myself back to sleep. But soon the kids were running through the house, the doors were slamming,.the footsteps were stomping…and then with a quick kiss, they were gone.
Too quiet. Too easy to think, to remember, to analyze, to contemplate, and then over-react.
What was it my therapist told me?
“Anger is really just a mask for sadness and fear. It’s easier and more powerful to feel anger. Imagine when you finally admit what you are really feeling.”
I check with myself.
Yep, that is a whole lotta anger, ready to come pouring out of every cell in my body.
Instead of the rush of endorphins…the rage…instead, I realize…he is right.
I am not angry…I am sad
I am so unbelievably sad, and scared.
And just like that…I begin to cry.
I fall into a million pieces.
I am sorry that you walked in during the part where I was trying to put myself back together.
That probably wasn’t a pretty sight for anyone to have to witness.
It’s okay though.
I spent the day gluing all those cracks and crevices together.
I can’t say that I am back to my usual self. There were a lot of pieces today.
And I can’t say I am going to sit in the emotion of sadness anytime soon. Apparently, that is a powerful emotion.
Instead, I turned it back into anger.
Anger I can manage.
Anger I can control.
Anyway, I just wanted to tell you I am sorry. I hate when someone sees that side of me. It feels far too vulnerable, and too much to have to burden someone else with. And I just wanted to apologize for bothering you…
Let’s just pretend this never happened…what do you say?
❤ Matthew Wild
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!?
There is not much more he can do these days, but to wait.
He knew the disease would slowly take his ability to move. A few days after his diagnosis, every website that explained the disease in gruesome detail explained to him what to expect. He would steadily become a prisoner in his own body. There would be no cure, no treatment to slow this process down, and no one with answers as to why this was happening.
The days would pass, as they often do. Lives go on, people come in and out of his world, but still…he waits.
He is locked inside what was once a six-foot two-inch frame, of broad shoulders and the strongest of legs…legs that had easily ran up mountains, swam in oceans, and walked with confidence through any door. His fingers have curled, the tendons and bones are all that are left to show hands that had once caressed his wife’s body. His arms lay at his side. He no longer fights the urge to raise his arm to scratch an itch.
Instead, he calls out for someone to come wipe his eyes, to reposition certain body parts, to adjust and to maneuver.
And he waits…
His legs spasm, not in pain, but in the normal progression of the disease. He glances down at his feet.
There is nothing normal about this.
His toes are beginning to resemble his fingers as they too, curl inward. The disease has ravaged his feet. He stares at his toes, willing them to wiggle, to move, anything to prove that he hasn’t lost that small little ability.
Nothing. No movement.
He glances up.
Rolling his head from side to side, he feels the heaviness that is slowly taking hold. He knows what is coming.
Soon, the weight of his head will be too much.
He stares out the window.
There is a bustle of noise coming from the kitchen. Pots and pans clanking, the scraping of spoons as they are stirred by someone else. Someone else who can move easily from one task to another.
The familiar pang of sadness at his loss begins to creep into his consciousness. He closes his eyes.
He has been waiting. Waiting and wondering when the time comes that the smells that come from the kitchen become intolerable. He wonders how long he will have to wait before he can no longer chew the food that someone else places into his mouth. His jaw is already sore. It is getting harder to speak, and to chew.
Someone calls out his name.
The footsteps grow louder. The door opens.
He has been waiting.
Waiting for someone to come and wheel the metal arm closer to the bed. To hook each loop into the bar, and effortlessly pick him up.
He glances at the reflection in the mirror.
Legs dangling, a large sling wrapped around his body, as he hangs helplessly from the air. He looks away. He knows what he looks like. He is naked, in the most vulnerable way a man can be. There is no covering him. He is long past embarrassment, but the vision of seeing his reflection staring back at him and being incapable of covering his most private of areas, is difficult to see, even for him.
Someone pushes and grunts and pulls to maneuver his body back into his wheelchair.
He waits patiently for the metal arm to slowly place him into a sitting position in his wheelchair. A blanket has been laid gently on his lap, his teeth are brushed, and his pills have been swallowed. One of the pills catches on the way down, causing him to cough and choke.
Quickly, someone grabs the small machine and hose that is never far from reach. The machine is meant to simulate a person coughing.
He waits and tries not to feel claustrophobic as the mask is tightly pressed against his mouth and nose. He couldn’t protest if he wanted to. The machine forces air so hard into his mouth and lungs, his cheeks swell against the mask. A click of the machine, and the reverse happens, as the air is pulled, almost violently from his body. It is the only way his body can cough. Over and over again, this procedure is done, the machine straining, as it forces air in and back out again.
His airway clear again, he can breathe.
The momentary adrenaline rush at the lack of air moving fluidly through his body slows as his heartbeat returns to normal once more.
He is wheeled out into the kitchen. Someone has prepared dinner. His meal looks less than palatable. Soft foods so as not to choke again. He sighs…He waits while someone sits down next to him, grabbing a fork and begin to gracefully place the food onto the prongs and then lift it to his mouth. He opens his mouth…chews the food, moving it around his mouth, a bit of anxiety and hope that he can swallow this bite without choking again. Small bites. Slowly….he swallows.
He needs a drink. Watching, he leans forward with his head, lips outstretched towards the glass.
The effort is exhausting. He shakes his head. His jaw is tired. The water dribbles down his chin.
He waits for someone to grab a napkin and wipe up the droplets hanging, threatening to spill beside the bits of food he had been unable to hold in his mouth, that are now laying in his lap. He waits for everyone around the table to finish their meal.
He maneuvers back into the bedroom to watch television. Someone else needs to get ready for the day. The children are all running, a cluster of excitement as they get ready to leave and go about their busy lives. He positions himself in front of the screen.
He waits for everyone to say “goodbye” as they run out the door. A quick kiss to the forehead, and the door slams behind them. He listens to the stillness of the house.
The caregiver walks in. She swiftly picks up the remote, points it towards the wall, and clicks on the tiny buttons to the channels he prefers. The television has become his only outlet and escape from this disease. It is all he can do to pass his time now. He can lose himself in make believe for just a while. For just a moment, he doesn’t have to think about what he needs, what others do for him. He wants to go out. He feels trapped…trapped inside the house, and inside his body.
He watches the hours pass. Eight more hours before someone else comes to tell him about their day at work or running errands. Nine more hours before the kids arrive. Ten more hours and everyone will gather for another meal around the table. Twelve more hours and he can go back to bed.
He waits for a text message, an email, a phone call. Anything that shows that he is still participating in his life. He seldom hears from those who had once been so close to him. He wonders if they think about him. He understands that the world kept turning, he just isn’t turning with it.
He waits for visitors that never come. He wants to ask them to stop by, to sit and tell him about all the new experiences they are having. He supposes they feel guilty. He knows he makes them uncomfortable now. If, and when an old friend pops in for a visit, it is always the same. Big smiles to hide the awkwardness as they lean in for a hug. They complement him on his inspirational strength, but the smile falters. They fumble for words, for stories, and things to talk about. They feel guilty for still living, as they sit across someone who has so little time left. They glance at their watch. They need to go soon, but they promise to come again soon…But they won’t, and they both know it.
He waits for conversation…but the caregiver is busy taking care of him. The caregiver is not there for companionship. They sit out in the living room, staring at their phone. Too busy counting the hours before their shift is over so they can leave. He understands…he is counting down for their shift to be over as well.
He has to use the restroom again. He calls out for help. He waits until someone is finished doing their chores before they stomp in to help…again. He tries to hold it and tries desperately not to lose his patience. He hates asking for help, but there is no choice. He wonders what is taking so long this time.
He waits for hands to touch him, but the only caress comes in their efforts to be efficient. He misses reaching his arms around a loved one for a hug. He misses breathing in their scent.
He doesn’t want to ask for help again. It feels as if it is constant. The need for something, the constant requests for drinks, food, adjustments. He feels like a burden. Time is ticking by, and his requests grow more frequent with every passing day.
He wonders how his life came to this moment. The limbo of wanting to live but waiting to die.
He looks out the window…
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?”
I really want to tell you the rest of the week went without any more issues, buuuut I can’t. In fact, I am pretty sure there is a conspiracy against me. If it can go wrong, can be forgotten or needs to be addressed immediately, then it is going to happen to me…ALL AT ONCE!
After the smoke alarm fiasco, the next day was spent just trying to put out fires…figuratively of course.
That evening was spent with a couple of girlfriends, divvying up some pre-made meals, and some much needed conversations and giggling!
Thankfully, one of those friends happens to be taller than I am, and she helped throw several new smoke alarms in so I wouldn’t have to lug a ladder upstairs. And there was also that pesky problem of my plumbing issue that she helped me get taken care of, lickety split! (four hands are better than two when needing to push two pipes together and tighten the connector together all at the same time!)
I am happy to report the following evening, there was only one more smoke alarm that came to the end of its life….at 3 am…and in my stupor of trying to jump out of bed and figure out which one it was, I ran around the house, listening for the…
Only to find the death had actually occurred in my own bedroom.
Hey, don’t laugh! I was sleep deprived! But I ripped it from the ceiling and would mourn its loss at another time. (To date, they are all now dead…I have replaced 5 of them, there are 4 more. The following deaths happened during the daytime and with little to no fanfare!)
However, Friday morning was spent something like this:
Cell phone rings…its 7:30 am..
“Mommy!!! I hit the curb and my tire popped!”
First, the teenager only calls me “mommy” when she needs something. Second, she claims to have been swatting a bug out of her face when she veered over and smacked the edge of the curb. I find this hard to believe. Third, the teenager has zero patience and was in an absolute dramatic tizzy over this…She was two blocks from school.
Okay, well, I can run over, grab a tire and get it replaced. That should only set me back maybe an hour?
I tell her to just leave her car in the parking lot where she had pulled over, and I would run over to get it taken care of as soon as the caregiver arrived.
Friend meets me there and pulls tire off so I can run it to the tire shop.
Tire shop says:
“You have to buy at least 2 tires, because we can’t sell you just one.”
Of course you can’t…I mean, why make this simple, right?
“Ok, I guess I will take two tires.”
He says, “I need the other tire, so we can mount them.”
I sort of stare at him blankly for a moment. This may be obvious to some, but I am still trying to process the fact that I am being forced to buy TWO tires against my will. I am a bit aggravated by all of this, so it took me a while to process that he would, indeed, need the other tire. I imagine telling him where he can go mount them, but that would be rude…Instead, I run back, where friend takes the other tire off..Oh, and the spare he had put on…yeah, that went flat in three minutes…
So, I take the other tire PLUS the spare to get fixed.
By the way, that will be an hour wait.
This tire fiasco took an additional four hours out of my life that I will never get back….
And that was the rest of my week in a nut shell. Not to mention I had the honor of teaching the incredibly impatient teenager how to put the tires back ON! After all, it’s her car. She should know how to do these things too!
I won’t go into the fiasco of soccer games all weekend that resulted in mass chaos because of the detrimental effects of having the wrong colored socks, or shorts, or (GASP!) the wrong number on the jersey..but that is a story for another time!
I will say this though…
I keep visualizing a moment… at some point in my life… when I am on a giant stage, with my crown perched a bit crooked on my head, accepting my “Mom of the Year Award” for my patience, and perseverance of handling teenage dramatics, soccer clothing mishaps, smoke alarms that end their lives at the worst times possible, juggling everyone else’s wants and needs,as well as all the ALS trials and tribulations, AS WELL AS all of my own drama. I can see it now…my children all cheering wildly for me, nodding their heads and shouting how awesome it was growing up with me as their mother…
I think I’ll just keep that one to myself…its gonna be a long time before ever happens…