Welcome to our world!
Please, come in and make yourself comfortable. Now I realize that at this very moment you might be feeling a bit out of control. All the feelings floating throughout your body are completely understandable. After all, you have been told that there is something that is out there… Something that is completely unseen, but it is deadly. And this will, without a doubt, completely affect the rest of your life.
These are difficult times, for sure. I can also relate to some of that fear you might be feeling. The fear you are feeling is similar to what we were feeling that February, late afternoon, all those years ago. Matthew was diagnosed with ALS five years ago. A disease that is still untreatable, uncurable and unstoppable. No matter how much I read, or tried to prepare, the fear was still there.
Five years? Can you believe it? Time kept marching on, whether I wanted it to or not. And still, the silent, and invisible disease known as ALS, is unstoppable. It continues to move silently, wreaking havoc on his body, as well as the thousands of other bodies around the globe. Matthew has passed the “average” time that most people live with ALS. The average lifespan for someone diagnosed with ALS is three years. He is now in the 10% of people who live past five years. Only 10% percent of patients live past 5 years. Only around 5% to 7 % live past the 10 – year anniversary.
This time might be a little uncomfortable for many of you. Trust me, it’s not every day that you are told that the chances of you losing a loved one are so high. This unknown has the potential to affect you, and everyone around you in some way, in the not too far distant future.
This time is scary, no doubt about it. Thankfully, you do have some control in how this plays out. Unfortunately, for caregivers and people with what they call “underlying conditions,” our anxiety just shot up about a million times higher.
We already live a life of quarantine. We stay away from people who are sick, even when we risk offending our family members and friends who may not understand that a simple cold or the flu bug can potentially kill the person we love. We seldom went out in public for months before this virus became the sensational talk of the town. The effort it takes to go out wasn’t always worth it. To make matters so much worse, there is now something out there that is deadlier than a flu bug or cold that we have to prepare against. So our days of going out are far less than ever before.
I have reached out to so many other ALS families, asking how they are doing. The almost funny part about this entire situation is that if you are a caregiver or a person living with a terminal disease, or suffer from a compromised immune system, then you know our life really hasn’t changed all that much.
I imagine for most of you, the idea of being cooped up in your home for weeks seems impossible and horrid. I stopped being excited about Friday or Saturday nights years ago. Depending on the weather, the season or even if Matthew was fatigued or feeling anxious about being in public, we were housebound. Over the last two years especially, our life has increasingly become more and more reclusive. Some of that is because of the disease, and some of that, I assume is because of how we are mentally handling all the parts that aren’t talked about when it comes to a terminal illness.
I picked up the phone to call a dear friend the other day. I asked how her children were doing. Her answer; the only difference in their lives are that they aren’t going to school. Other than that, they have been housebound for years! YEARS! At one point during her husband’s illness, she was begging to leave her house for one hour a week.
Yes, you read that right. ONE HOUR A WEEK!
She spent years housebound, caring for her dying husband and her children.
I have another friend whose husband was so stubborn that he refused to use a power wheelchair. Even though he had lost the strength to safely walk long distances. To compensate for his stubbornness, she would maneuver him carefully and slowly, every single day into his recliner, help him eat, use the restroom, and attend to his needs at his beck and call. She was housebound for years as well. She would hire caregivers to help out, but the process of the paperwork, and training someone to care for her husband, and what to do if he choked and could they safely help him without hurting themselves or him became a serious point of contention. I imagine it was tedious as the wife, because after all the effort of hiring new caregivers, it often resulted in them leaving after a few weeks, if they even made it that long. Once he finally agreed to using a wheelchair, they found a little freedom for a short while, at least. And for a short while, photos of their family enjoying restaurants and some lovely drives to look at the scenery were once again on their Facebook feed.
They are back to being fully quarantined, while she is the only caregiver, and mother of two young girls. She sees to all their needs, and no one will be able to cross their threshold for quite some time. Maybe it’s a good thing she was already well trained in being housebound for weeks at a time?
Several other families said that besides worrying about a shortage of toilet paper, they really don’t have the opportunity to go out anyway, so a quarantine situation simply means that they can’t allow anyone into their homes. They hadn’t really changed anything else in their lives, and no one really came by to visit anyway.
Where am I going with all of this?
Your world is turned upside down. You are being asked to completely rearrange your life. You are shut off from your friends and family and there is no where to go. You might be angry, even disbelieving what is happening. There has to be a better way, right? Maybe you are sad at the thought of your livelihood completely changing, and you have no idea what this will look like once it is all over.
Trust me, I get it!
Once Matthew was diagnosed with ALS, I had this set of preconceived notions. I thought I knew how people would react, how they should help and how the disease would progress. I planned for every possible scenario…and yet, no matter how much I worried and stressed about all the possible outcomes, it still never played out the way I thought it would.
I am scared.
This virus will absolutely be fatal to my husband. No doubt about it. ALS has affected his diaphragm, and his lungs are only functioning at about 30% of a normal person’s capacity as it is. I have a very vivid imagination, and the thought of an ambulance taking him away and I would never get to see him again or be there for him is petrifying. Add the absolute panic that this will affect my children, and I am beyond a doubt, not liking the images playing through my mind daily.
I am scared for my children and my parents and for all my loved ones. I can absolutely admit that with no shame.
However, I have learned that I have little control in how this plays out. We are only letting a select few enter our home, and even that may come to an end soon. We are trying to give scientists time, and the people who know what they are doing precious time.
It has always been the enemy for us. Because as the years go by, it means Matthew would be that much closer to becoming a statistic for an ALS chart. But now, we are hoping and praying for time to slow down once again. Not just for us, but for all of those who are out there, trying to protect, and to stall an invisible enemy. Time for resources to become available, and time for people to rest and heal, come together, and most importantly, work together.
And now, this time…. You are getting a small snippet of what it is like to become a full-time caregiver. You are getting to experience just a little bit of what it is like to live a life caring for someone else. To have no ability to leave, no one else to lean on. To lose connections with your friends. To have your world shrink.
The only difference is that this time, we are all living the same experience. Many caregivers had watched the lives around those around them continue, as theirs had progressively shrunk. They watched with envy, maybe even jealousy and a bit of anger, as those around them continued with their lives, unaware, as the caregiver watched from the sidelines, coveting their freedom. This time, everyone around us will be making sacrifices, and it will not be an easy transition.
This time, you are now in it with us. And I can’t tell you how sorry I am that you are experiencing this. That we are all experiencing this together. And I can only hope that in time, we will see that this sacrifice was worth it. The same sacrifice that every caregiver makes when they can no longer simply walk out the door or walk up a flight of stairs. To come and go, to experience life in all its beauty, that so many take for granted on a daily basis.
Keep searching for gratitude, look around you and remember the blessings you have. And remember your “why.” Offer help if you can, and snuggle in with those in your lives. Who knows how long this will go on. But remember, it will be worth it if you remember why you are doing this.
We sacrifice to be there for those we love the most.
❤ Matthew Wild