It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
This is the post excerpt.
It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
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…
“What was that?”
I lay there for a second, not really knowing what he is talking about. Matthew hasn’t slept all night, and I can’t figure out if he is just mumbling or needs something.
I hear it too…
I sigh…the familiar sound of the dead battery in a smoke alarm. I wait, secretly hoping it might stop, but thirty seconds later…
I decide I better take care of it before it wakes everyone in the house.
I groan…I am perfectly comfortable and all snuggled in. I don’t want to get up. For a moment, I just want someone else to take care of this. Matthew has already woken me at least 4 times in the last 3 hours. I didn’t want to get up. But as is the case in every situation in my life, there really isn’t anyone who is going to take care of this for me. I swing my legs over the bed and make my way up the stairs to where that offense noise is coming from.
There is no choice, I turn on the light in my daughter’s room to see what I am doing. She groans, and glares at me. I look around her room and moan. It is absolutely disgusting! Clothes, shoes, and makeup are strewn around the room. And old coffee cups, and mass quantities of old wrappers, and containers of junk food that had been snuck upstairs and kept hidden in a teenager’s room. I tell her she seriously needs to clean her room, even though I am sure this probably isn’t the time to be having this discussion.
I am fumbling with the smoke detector, trying to find where the battery is hidden. I rip the face off.
That wasn’t it. I finally flip it over and see the small slot that needs a screw driver to pry it open. I settle for a dirty fork from the teenager’s bedroom.
I pull the battery out.
Satisfied that it will shut up and everyone can go back to sleep, I go to step off the chair.
I quickly glance up.
I step back up on the chair. The mutilated smoke alarm is mocking me.
I understand just enough electrical to think I am proficient. I am proven drastically wrong in this moment. I pull out the small attachment of black and red wires still providing electricity to the dreaded alarm.
FIRE! FIRE! FIRE!
The entire alarm system throughout the house is suddenly screaming at me.
I am reaching above my head, my shoulders burning from trying to hold my arms up for so long, as I am trying to jam the wires back into the alarm.
I hear Matthew trying to yell downstairs.
“What’s going on?”
I run downstairs.
“I don’t know how to make it stop!” I tell him, as I walk towards him. He is stuck lying there, his mask on his face, mumbling.
I get my head closer to his.
“I have to pee!”
I groaned again…
“You scared the pee right outta me!” He is giggleing, but I don’t find the humor in this situation.
I grab the urinal and roll him over towards me.
I am feeling a sense of urgency, but am trying to be understanding to his needs..but I really just want him to hurry up and pee!
“Go find batteries”
Sure! Simple enough. I roll him back on his back, sit his bed up and remove his mask. If I have to be awake, then so does he!
I walk out to the kitchen. The dishes from the night before are stacked in the sink. Food bits are still stuck to the plates. The pots and pans are still on the stove.
The teenager had put the food away but didn’t help with the dishes. Nor did the other two. Oh well! The teenager had gone to school all day, worked and gotten home late. My mood is bad enough that I don’t feel like nit picking, and I was just as capable of cleaning the kitchen last night after all my running around adventures, and tuck ins and such.
I open the junk drawer. It is referred to as the junk drawer for a reason. Screw drivers, bit and pieces of miscellaneous things that will never actually be put back together are lying in there, awaiting the day I realize they belong in the garbage. There are more batteries than any one family needs in there. But do you think I can find the one size I need? Nope!
I look up towards the stairs…
Matthew is trying to yell from the bedroom.
“You need a D volt!”
I know this. I know he knows I know this. At this point, I am sure my children are all awake, so I yell from the kitchen.
“I know!!! And we don’t have any!”
“Look in something that has one, and take it out”
I go back upstairs, confused why the beeping is multiplying.
Teenager’s smoke alarm is beeping….and now another one is beeping!
I run downstairs, grab my shoes and tell Matthew I will be right back.
There is no choice, I have to go to the store and get batteries.
I jump in my car, in an over-sized mickey mouse t-shirt, yoga pants and my hair piled on top of my head. I assume there won’t be a soul around.
I assumed wrong.
There are at least 6 cars at the gas station
At this point, I really just want to get in and out!
I duck my head, run inside and grab four D volt batteries! Just in case!
Did you know those damn things are six dollars a-piece!!?
Why I am grumbling about the cost is beyond me, but at this point I am seriously irritated and just want the beeping to stop!
I drive like a maniac home and run inside.
I glance in the bedroom to find Matthew is falling over. I have to go and pull him to an upright position.
There are now three smoke alarms going off upstairs. I run upstairs and start replacing the batteries. I am patting myself on the back for being smart enough to grab several packages of batteries.
One smoke alarm, done!
Maybe I need to replace all of them before they stop?
Then I hear another one beeping downstairs.
Matthew is yelling downstairs…
“There’s another one down here going off!”
I switch two more batteries…
Still no change.
I run outside, and to the breaker box
I start flipping the circuits, trying to find which one is responsible for bringing electricity to the smoke alarms. No label…nothing…
I try the foyer, the bedrooms and bathrooms.
The beeping won’t stop!
I am Youtubing videos trying to figure out why. They are less than helpful. I am seriously at my wits end! I am texting some friends, apologizing for waking them, but at a complete loss of what to do. Poor Matthew is trying to give me advice, but he can’t look and see what I am doing, so he just tells me to do what I have already tried doing. Google! I attempt googling the brand. I am looking up the brand of smoke alarm. It says cut off the power supply. I can’t find the power supply!
If the batteries are replaced and they keep beeping, it means the smoke alarm is at “END-OF-LIFE”
Are you freaking kidding me?
Four smoke detectors are at the end of their life?
I didn’t even know they could die!
If I unplug them, the entire house starts screaming at me:
FIRE! FIRE! FIRE!
At this point, the kids just went back to sleep with a pillow over their head.
I am completely at my wits end…
I call 911…
I think this may be one of the most embarrassing moments of my life..
“911- what is your emergence?”
“Hello, this isn’t an emergency. But I can’t get my smoke detectors to stop beeping and I have tried everything”
I am pretty sure I am hanging my head in shame. The dispatcher makes me tell the entire story from the beginning. Yep, I feel like an idiot!
“I will send out a man to help now”
I hang up, feeling sheepish. Matthew tries to assure me that they see situations like this all the time.
Then I remember!
OH MY GOD! The dishes are piled all over, and I made salmon last night!
I don’t have a sense of smell. Yes, you read that right. I somehow lost my sense of smell in the last couple of years, but I am pretty sure the house probably wreaks like fish!
I scramble to start cleaning when I hear the knock at the door.
I go to open the front door, and there are two huge guys at my front door, and a massive fire truck parked right in front of my house.
I am literally groaning inside!
The beeping hasn’t stopped but to add even more chaos to the situation, I closed the door, but of course there is another fireman walking in! I now have three huge firemen in my entry way, and my two dogs are going crazy! My old dog, who would let a burglar come in and never make a move, is now vehemently snarling and barking at these men, as the other dog is yelping and barking as well!
I am trying to calm them, but they are going crazy!
Two firemen walk upstairs…while the other one is trying to calm the dogs. Then, one of the dogs decides to pee all over the fireman!
Between the constant beeping, and the dogs barking, and Matthew asking what’s going on, I am literally just turning in circles.
The younger fireman of course walks into my kitchen.
He wants to help clean up the dog mess with paper towels.
I don’t have paper towels!
I am pretty sure I can’t be more embarrassed than I am right now…
Then I look up and realize that two of the firemen have just seen my teenager’s bedroom…
At this point, I am pretty sure that if it is going to go wrong, tonight is the night for it to happen.
Suddenly, the beeping stops…
3:45 am – firemen leave…
4:00 am – I finally fall back asleep…
6:00 am – middle daughter wakes me up to talk
UGH! It is going to be a long day!
Long story, I know, but there is a lesson to be learned here!
Smoke alarms can actually die!
Three out of the four were seven years past their expiration date! My house is only 7 years old. That means the contractor put in old smoke alarms. Here is another helpful tip… put a carbon monoxide detector down low at an outlet. Carbon Monoxide stays low, and if the alarm goes off, it may be too late, as they are often installed too high to make a difference!
Another lesson learned…
Just do the damn dishes…especially if you cooked fish the night before. Those poor firemen. They were above and beyond polite, but inside, they had to be gagging!
I will be hanging my head in shame until the trauma of last night fades from my memory…but if it made you chuckle just a little…well, I guess there is that!
The sound of his heel hitting the metal stopped me. I looked down and noticed it just dangling there.
Every morning, I maneuver a sling around his body. And every morning, I use a machine called a hoyer lift to lift him from the bed to the wheelchair. And every morning, he wiggles and tries to adjusts himself in his chair to make himself more comfortable…
Except this time.
This time, he had to ask me to lift his foot up onto the foot plate. This time, I noticed he couldn’t do it himself.
I suppose in some small way, it doesn’t seem like all that big of a deal, right? I mean, it’s simply me bending down and lifting his foot to sit on a metal plate. I put both feet next to each other, and grab his blanket, and wrap it around his legs..
and I say, “Is your foot gone?”
It felt as if I had asked him if his appendage had died. And I am…that is exactly what I am doing. I am asking him if another part of his body had died..given out..become so weakened that he can no longer move it…And I couldn’t bare to look him in the eye as I asked this. Instead, I fussed with straps and wires, and tucking in and lifting…I kept my eyes down and my hands busy.
“Yeah, I think its a goner!”
I look up and slap a smile on my face and I try to ignore the pain I feel deep in my chest.
And I grieve again.
I grieve for his losses, as well as my own. I grieve every time, and I know its depressing. I know it is hard for others to look,
And I refuse to apologize for it!
Because I think everyone needs to know how strong this man is. I think everyone needs to know how immensely humbled I am to see him live each day, with less and less ability to move, and needing more and more help with each and every task, yet he refuses to complain. He refuses to say, “Why me?” and he refuses to ask for more than he needs.
To the person who posted this response on my Facebook page,
Jesus Theresa, why would you even post this?
If you read my blogs…
My response to you is this:
Because it is breaking my heart to watch this and be so completely helpless…
So I grieve…
He said, “Wow! It’s nice to meet you!”
She said, “hello….”
He said, “We have a mutual friend.”
She said, “She invited me to come listen to the music with her.”
He said, “I am glad you could make it”
She said, “Thank you. I don’t get out often.”
He said, “Can I buy you a drink?”
She said, “no thank you”
He said, “Its been months, how are you?”
She said, “The summer went by too fast”
He said, “Can I buy you a drink this time?”
She said, “Sure, I would love a water!”
He said, “It’s loud in here”.
She said, “WHAT?”
He said, “Do you like live music?”
She said, “Yes, It’s my favorite!”
He said, “You came with her again?”
She said, “I’m her designated driver.”
He said, “Here is your water.”
She said, “Would you dance with me?”
He said, “yes”
She said, “You can DANCE!”
He said, “Wow, so can you!”
He said, “Will I see you again?”
She said, “Maybe…”
He said, “I haven’t seen you in weeks, where have you been?”
She said, “My life is complicated….
He said, “What do you do?”
She said, “I go to school”
He said, “would you like to go dancing?”
She said, “ok”
He said, “Are you seeing anyone?”
She said, “No…and I want to keep it that way!”
He said, “Why?”
She said, “I am recently separated.”
He said, “I was married for a long time too”
She said, “I have children”
He said, “I bet they are great!”
She said, “You aren’t my type”
He said, “I know, but can we keep dancing?”
She said, “Yes, I would like that…”
He said, “We have been dancing every month for almost a year now!”
She said, “I just want to be friends…”
He said, “I know…”
She said, “I’m not ready for a relationship.”
He said, “I understand. I am happy just being your friend.”
She said, “Thank you for being such a great friend to me”
He said, “Who are you here with?
She said, “I am here on a date tonight”
He said, “Do you like him?
She said, “I don’t know yet”
He said, “That guy shouldn’t be flirting with your friends”
She said, “I guess he wasn’t that into me”
He said, “He’s an idiot”
She said, “Thank you”
He said, “You deserve better!”
She said, “I agree..”
He said, “I like spending time with you”
She said, “I need to take things really slow”
He said, “Of course”
She said, “I think you are looking for more than I am ready to give.”
He said, “I have all the time in the world.”
She said, “What’s wrong with your fingers?”
He said, “Nothing, I am sure it’s nothing”
She said, “I am not ready”
He said, “I’ll wait.”
She said, “Please go to the doctor.”
He said, “Go to Cabo with me!”
She said, “I am a single mother, I can’t go to Mexico!”
He said, “It would mean so much to me!”
She said, “Will you go to the doctor?”
He said, “Of course, as soon as we get back!”
She said, “Its beautiful here!”
He said, “Thank you for coming with me.”
She said, “What did the doctor say?”
He said, “He wants to run some tests…”
She said, “It is going to be alright…”
He said, “I have ALS”
She said, “I know”
He said, “I’m scared.”
She said, “Me too”
He said, “Maybe you should leave?”
She said, “I promise I will stay”
He said, “Will you spend the rest of my life with me?”
She said, “Yes”
He said, “My legs are getting weaker…”
She said, “We need to find a new home”
He said, “I want to marry you and dance with you on our wedding day.”
She said, “There isn’t much time.”
He said, “I am sorry we are rushing things.”
She said, “I am sorry that the last time we danced was on our wedding day…”
He said, “I don’t want to use the wheelchair.”
She said, “It’s there when you are ready…”
He said, “I can’t lift my arms anymore.”
She said, “It’s okay, I am right here…”
He said, “Don’t worry, we are going to be alright…”
She said, “I don’t know how to ask for help”
He said, “Neither do I”
She said, “I don’t know if I can do this alone.”
He said, “I feel like a burden.”
She said, “You are not a burden.”
He said, “Happy Anniversary!”
She said, “It’s been 3 years?”
He said, “Its going by too fast”
She said, “I feel so alone”
He said, “So do I…“
She said, “I never get to go out or do anything anymore”
He said, “Neither do I”
She said, “I didn’t think it would be this hard”
He said, “Neither did I”
She said, “I miss being held.”
He said, “I miss touching you.”
She said, “Where did everybody go?
He said, “I don’t think they can handle this.”
She said, “I am so angry.”
He said, “I know.”
She said, “I had different expectations.”
He said, “I think it’s just you and I.”
She said, “You are my person.”
He said, “Thank God I have you.”
She said, “We still have so much to be thankful for…”
“Let me know if you need anything!”
This phrase is texted, said or otherwise conveyed to people of all sorts: to caregivers of all types, and to people who are either sick, going through a loss, or even to those who are going through life changes, (i.e. new births, moving etc)
This phrase is also one of the worst phrases that have ever been uttered, with the best of intentions, of course, to people around the world!
We rush about our day, see people we know and say these things in passing. This phrase is like saying, “Hello, how are you?” (As the person continues walking away!)
It may be said with the best of intentions, but is in fact, the worst statement you could possibly say to someone!
Let me help you help someone else with ideas and tips for how to be truly helpful to those around you!
#1 SHOW UP!
Do not just send a text message with a well-meaning hello and then assume that they will ask if they need something. This places the burden on them, which isn’t fair! Most people do not want to be a burden to anyone. They will not want their ego or pride bruised by asking for favors and possibly have them turned down.
Show up! It is that simple. Take some time out of your week and stop by. Call them and ask them when a good time would be to come over for a visit. Bring flowers, or some coffee or a beverage and spend time with this person. (And please…put your damn phone down!!! Be present! It may be uncomfortable to sit with someone who is sick but imagine how the person feels if you are constantly checking your phone!)
P.S. Do not offer to show up and cancel repeatedly either. It is rude and will make the person you are offering to visit feel not only like they are inconveniencing YOU but makes them feel as if they are not actually important, but that you are doing this to make yourself feel better!
#2 OFFER TANGIBLE THINGS!
Instead of offering something that is vague, offer something tangible. Offer to bring over a meal that can be frozen for later. Offer to carpool the kids if it is already on your way. Offer to run some errands or pick up some groceries or to mow the yard. Offer to take their car to the car wash or vacuum it out for them. Offer something that you think you would appreciate if you were in their situation.
# 3 EMPATHIZE! DO NOT SYMPATHIZE!
Empathy is the ability to understand what another person is going through. Take a moment to try to understand things from their perspective, and then offer something that you think you would appreciate if you were in that situation.
Sympathy is feeling sorry or pity for another. DO NOT do this.
There is a clear difference between the two.
#4 DO NOT JUDGE!
Many people do not ask for help when it is offered because they are worried about being judged! If someone came over to my house right now, they would find some dishes in my sink, a stack of clothes on my dresser that I haven’t hung up yet (I absolutely hate laundry, it is my arch nemesis!) and they would find a messy garage, and who knows what else!
However, unless you live my life, you have absolutely no room to judge me! I have woken up 8 times in the middle of the night to adjust my husband. Three times, I had to physically get out of bed and sit him up, and remove his mask, etc etc. I am often sleep deprived and there are many times that things around the house do not seem like a priority. If a spotless house is your priority, great! But do not come over to my house and judge me for not taking care of your priorities. Come over because you really want to be with me or offer help. Making me feel judged will only lead to anxiety and more stress.
#5 EXPECT NOTHING IN RETURN!
So, you brought a meal over…Great! Please don’t expect accolades posted on Facebook or a thank you card in return! If you are doing a gesture to be helpful, remember that it is a gesture that should be given out of friendship or love, not for your own ego or pride!
#6 TAKE THE KIDS!
Okay, this one is purely selfish on my part! I have three children. I have a terminally ill husband. While we still get out and about right now, I know that my children do not get to do as much as they used to. We have to plan absolutely every detail now. We have to plan showers, bathrooms, and medical equipment back up and battery charging. We have to plan wheelchair accessibility, and ease of travel. We even have to plan for the weather, as my husband cannot handle extreme temperatures.
If someone offered to take my children along with them to a movie, or swimming or on a fun excursion, that would help alleviate my guilt. I cannot always take them, and they are often left out of going to places because of this.
#7 BE AWARE THAT THINGS ARE DIFFERENT NOW
No matter what the circumstance is, whether it is a new baby, or an extreme life-altering situation, be aware that this person’s life will forever be different. This person’s routine will be different. The things they were once comfortable doing, may not be as easy to do. They may not be able to communicate their frustrations or their new anxieties out of fear of judgement or ridicule. Spending time doing what they used to do may not be as easy. Try to meet them half way. Your invitations are appreciated, and just because they do not show anymore, doesn’t mean the friendship isn’t valued. It is just different.
Try to communicate how you can make their life easier, instead of expecting them to continue with the status quo!
“Let me know if you need anything.”
A phrase that is said with the best of intentions yet grates on my nerves.
Please don’t think I am unappreciative!
I am not!
But this simple phrase fills me with so much anxiety, causing so much stress and frustration. I will default with a smile, say “Thank You” and go about my day.
I am a caregiver, a wife, and a mother, among other things. However, I cannot juggle it all, and I cannot ask for help! My pride will not let me lean on others. I am not the only one who feels this way either. My husband is sick, and yet he is filled with dread asking for help as well. We understand how busy everyone else is. We also feel intense guilt if we feel we have added an extra burden to someone else. Hopefully these little tips have been helpful
If you want to be a part of someone’s life, you will make an effort. If you do not, you will make an excuse. It is really that simple…
I wonder how they do it?
I wonder how doctors can look people in the eye, and tell them that they are going to die…
The doctor sits down and explains to the patient that they have ALS….and then what?
I know in the ALS community, there are teams of doctors and specialists and therapists who rotate into each room, greeting the newly diagnosed patient and their family member. Every doctor, specialist and therapist have a small window of time to discuss and answer questions, as well as take various measurements with various tools and devices.
These are referred to as an ALS Clinic.
These people are sent into the room to determine how much a patient has progressed.
These clinics are all over the country, the world in fact. And each one does exactly the same thing.
They diagnose…and then they chart the progression of the deadly disease known as Amyotrophic Lateral Sclerosis.
How do they cope with this loss repeatedly?
They meet a family, they get to know them, and they watch, helplessly from the side lines.
How do they find the strength to keep watching?
And they do this over and over with each patient they see. They may not know when, but they know, just like a freight train that is headed straight towards them, and there is no way to jump out of the way, that death is headed for each of these patients.
Today, Matthew and I learned that we have lost another friend.
And just like that, he is gone.
I can picture his face perfectly. His eyes, and how they twinkled. His smile, and the way he grinned like a little boy with such a mischievous look in them. I knew he loved his family. I knew he was a proud man, with an iron will and a stubborn streak t least a mile long.
I knew that he had progressed considerably since the last time I saw him.
I hadn’t seen him in months, but I knew.
Of course, I knew.
It was clear that he was struggling when I had seen him last. His shoulders were rising with each breath. He hated the chair he was sitting in. He visibly looked uncomfortable. He hated being sick…
And from the short time I knew him, it was clear he was stubborn and would handle this disease his way. I could relate to the frustration his wife felt about this. It is hard to let someone else take the reins of their own life and yet , as the caregiver, be somewhat responsible for their health and welfare.
Matthew drinks Coke. A lot of Coke..
He still chews tobacco…although now he has moved onto Copenhagen pouches to avoid the choking hazard of the tobacco grains going down the wrong way and causing pneumonia. But he still chews…
He eats too much fast food, and junk food, and he doesn’t care because he knows one day soon, there is a possibility that he will not be able to eat. So, my stubborn husband does as much as he wants to do, and I let him.
The man who passed was stubborn too…
He hated anything that made him weak, and he especially hated all the machines he relied on, and the medicines…and how weak he was becoming.
I am taking a huge liberty writing this, as I hadn’t gone over to visit him in so long.
I will forever feel sorry about that, and yet I hope they understood.
Matthew and I are on our own path of this destructive train wreck waiting to happen. I know it’s coming, and so does he. Yet, we are still able to find happy moments and to experience joy and laughter. I need to keep my own happy for as long as possible. I am grasping with everything I have on some days…
The years keep going by, and the people we meet have come into our lives, and many have passed. Sometimes suddenly, and others, not so surprisingly.
And I am detaching from it all…
This doesn’t feel intentional, it’s a sort of survival mechanism for my heart.
I meet these families, and I fall in love with them. And then I watch powerlessly as they struggle to find their new normal, and I am helpless to stop what is happening to them. And I become a bit angrier at each loss.
There are more people who have been diagnosed in our area recently.
Some have reached out to me, and this time, my wall is built. I am a little less willing to rush into their worlds and learn all about them. I am a little less willing to fall in love with their families, and then witness their anguish. I hide behind the walls of our foundation. I stick to the facts. I offer advice, but I pause before opening myself more.
Matthew is much the same.
This afternoon, he hid behind his screen. He hid behind whatever would take his mind off what is happening.
The freight train is coming…
We can hear it.
We can’t see it yet. We still have time. But the dread of what is coming is always there. It never quite goes away…It is dark and heavy, and we can do nothing but accept the path that we are on, and the journey we have been led to walk.
I wish his family peace.
I hope they find comfort in their memories of their time together…
And I hope they understand why I pulled away. Not because I wanted to, but because I needed to.
I am not always as strong as I like to think I am.
We are all cowards from time to time…