“This is so hard”
“Yes, it is” I told her. I can hear the heartbreak in her voice, though we have never met.
“And it will continue to get harder,” I tell her.
I listened to her anguish and grief, as she processes that this is, in fact, very much her new reality. This is her life. And no one is coming to save her.
Her three children, somewhere between 6 to 11 years old will now have to process watching their loved one weaken and fade from a progressive and chronic disease. Their father has ALS.
He is slower progressing than most. Diagnosed more than 4 years ago. But now…now it is becoming real. The slower progression gave them a false sense of security. But now, his physical losses are becoming noticeable.
They need over $130K to remodel their home. He can no longer work at the pace he had been, let alone at a pace that would justify keeping his employment. I can sense as she paints the story for me, that he is reluctant to quit. Yet his care needs continue to intensify. The disease does not just rob him, it begins slowly stealing moments from his family. The kids are noticing that there are more replies of “no” than “yes” when they ask to go do all the things that young children want to do. They begin feeling absent from their friend groups. She is starting to feel the heavy weight of these losses as they all are unable to do their everyday normal activities. Dad’s care is taking every ounce of energy the mom has.
She is beginning to panic. Where once she felt this was manageable, she is quickly realizing she is getting in over her head, and she was naïve in not preparing more, sooner.
They have some resources and some family support to help them create a safe home for him, but the cost comes at a steep price.
I wanted to give her some perspective. But how do you prepare a young mother that her life will increasingly only become more difficult?
She mentions her therapist.
Oh Thank Goodness!
Therapy is almost vital through this journey. She shares that her therapist’s words of wisdom was that she would soon be a widow and she could move on with her life. That this too shall pass.
Hmmmm…I bite my tongue harder than I intend. That was not anything that I expected a professional therapist to suggest or offer by means of support
She laughs softly and I can almost visualize her sad smile and small shake of her head. She doesn’t want to look forward to becoming a widow. She wants her husband to be well, and her children to have a father. She is most definitely not looking forward to his death.
BTW—-Why would anyone think that would be acceptable advice?
This is not quite the approach I would have gone with. I gasp not only in shock but indignation and then I have no choice but to laugh along with her. Others can never understand until it happens to them. And more than likely, it will happen to them in some capacity in their lifetime. Almost everyone will be a caregiver or need a caregiver in their lifetime. Yet, there is something that is devastatingly different about a disease such as ALS. I remember what it was like for me in those first few years with small children, all similar ages, and I convey to her some thoughts and ideas that can give her what I hope are REAL coping skills. Tangible things she can start using right now. Things I wish someone would have shared with me.
Let’s imagine this is you.
(For the record, I hope you never have to live through anything like this, but in case you do, or you currently are in the arena of progressive diseases, or disabilities or injuries that severely hinder your everyday living, getting your ass kicked and handed to you daily fighting the overwhelming learning curve of searching for meaning, purpose or happiness through this journey, I wanted to give some semblance of advice I wish I had known 10 years ago when Matthew was diagnosed. )
Here are 4 things that I shared with her, and maybe if I share it here with you, in the hopes that what ever you are going through today, you can use one or more of these lessons I have learned to help you get through the month, the week, the day or even the hour.
1. Stop expecting people to show up the way you expect them to.
What does that mean? It means we often subconsciously assume people will step up for us, depending on the role that they play in our lives.
Imagine for a moment that your spouse has been diagnosed with ALS.
The doctors have told you to prepare for the worst.
You share this dreadful news with family and friends. Everyone is devastated. The well wishes and prayers begin. People start showing up with food, flowers, offers of support, followed by well-intentioned but misguided suggestions.
Anything from, “Are you sure it’s not Lyme’s Disease”
Or
“Just let me know what you need.” Thus adding one more decision you have to make and adding pressure on you to know what you can ask that that individual would even be able to help with. It becomes daunting trying to ask each person something that would be in their capabilities.
My personal favorites…”Do you think it is caused by vaccines?” and “I’ll pray for you.” (Please don’t send hate mail. I am sure your prayers are appreciated, but I believe in taking action, not just praying.)
Yet where do you begin? You are overwhelmed with trying to learn about what progressive and chronic will actually mean in your everyday world.
What will Insurance cover, what policy is best? Should you take money from your retirement? What are the most important things to consider? You know this means a completely different set of financial pitfalls and have no idea how to prepare financially, physically or emotionally.
Will you have to quit your job? Where will you get the funds to acquire all the durable medical equipment necessary? As you search online, you see example after example of the extraordinary costs for everything? How will you manage getting a new vehicle, ($100,000), remodeling a home ($$$$$) medications (can cost $$$$ each month) and cover all your ordinary expenses, after your loved one is on a smaller, fixed income from Social Security Disability Insurance and your income is sure to be gone when crunch time happens and he can no longer be alone without someone there at all time.
How will your children cope with this? Are you strong enough to manage all of this? When you begin to look around, it seems truly daunting and there is no playbook on how to navigate all of this.
When some of the dust settles, you begin asking friends and family to jump in but the offers become less and less. You notice that as the disease progresses, the people you thought would be there are suddenly moving on with their own lives. Maybe there were cards of condolences sent, and again prayers, but as the days evolve into months, and maybe even years, the family and friends who were so adamant that they would be there, are now very busy in their own lives.
How did this happen? Where is this support that was promised?
I know we think we would NEVER do this to our own loved ones, but guess what?
WE ALL DO IT EVERY DAY!
We all have busy schedules, and too much on our plates. We all have our own set of priorities, and it is not their responsibility to save us. Find gratitude for those who show up, let go of those who haven’t or simply can’t. However, hear me when I say that expecting parents, siblings, cousins or friends to understand this, or what your everyday life looks like, will only cause you to become unbelievably pissed off.
My advice?
Stop assuming that family and friends have the capacity to not only show up consistently, but that they would intuitively know what it is you are going to need in a day-to-day basis. It is not fair to them, and definitely not fair to you.
One more time for the people in the back!
Stop assuming people will show up the way you expect them to! This only causes bitterness and resentment!!!
2. Let go of the things that don’t really matter.
Do the dishes really have to be done every night? If you are tired, let it go. Does the laundry have to be folded or can it wait? Do you really have to run a different errand every single day? What about all the toys and clutter around the house, or the projects or things you thought you would get to? Are they really necessary right now?
Learn to consolidate. Automate as many things on the to-do list as possible. Let go of clutter! Clutter adds chaos which leads to anxiety and stress. The more you can automate or let go of, the less you have to carry on your shoulders. I think Marie Kondo was onto something… learn to let go of anything that needs to be taken care of that does not bring you joy. Simplify, simplify, simplify.
I promise that this helps with decision fatigue. As the days and weeks go by, and you are the primary caregiver (with or without children or others that need your attention) you will feel the added burden of trying to do things the way you used to, and I am sorry to be the one to say this, but you are no longer going to be able to do things the way you used to.
3. The Most Important Tool in this journey..A WHITEBOARD
Seriously…Get a White Board and hang it somewhere where everyone can see it!
I get it..this wasn’t anything you thought I would say. And I get it, its not exactly the ambience you were going for when you chose the décor. However, beyond all the styling, revamping, redecorating or staging of your home, the one thing that is most vital to your sense of well-being and support is the WHITEBOARD!
A White board?
YES!!
Why?
Because this is where you communicate your needs! This the place where you list all the things you need or want or are too afraid to ask for!!
Stay with me for just a second on this. I believe people want to help, contribute or support us, but they don’t know how. They want to bless us with their gifts.
No really!
I still believe in the good of humankind. However, when we ask for the things we need and those around us don’t have that skill set, they will evade our texts, or calls, and yes, sometimes even disappear, and you become angry and even more stressed than you can imagine.
Some additional ideas for the whiteboard:
• Vehicle maintenance – including oil changes, filling up with gas, rotating the tires or even a car wash
• Change out lightbulbs, or small honey-do items around the house as they pop up.
• Help with gutter cleaning, snow removal, or raking or mowing or even ask for 3 months of hiring someone else to help in these areas
• Garage organization
• Medical supply labeling and organizing small spaces for maximum efficiency.
• Ride-along requests for the children to participate in sports or activities that you can no longer manage
This is YOUR whiteboard. Do what you need to make it work for you and your family. You have a WANTS versus NEEDS? List them!
As people come in and out of your home, they will see this list.
Guess what? They may just volunteer to help with the item listed that fits their skill set!
Not everyone is comfortable being a caregiver to someone on an intimate level. Not everyone knows how to cook, or organize, and you may not feel that that is where you could feel supported. Facebook can be more frustrating to use, as you’ll soon realize that posting on social media seldom gets people scrambling to help and instead you area again left with a “prayer” or a “like.”
This leads me to my 4th bullet point
4. Learn to be direct and ask for what you need!
I have been a caregiver to someone with ALS for almost 10 years. I often tell families that a diagnosis is not a prognosis. This disease is different for each person and the trajectory for how it will move is not an absolute. It may not only affect your family for the 3-5 year average life expectancy that is told to you from your diagnosing physician.
This is a marathon, not a sprint.
Which means you will need to re-learn how to communicate. Learn to be direct.
Need an overnight away to recharge? Ask for it?
Need a coffee date with a friend for few hours? Ask for it!
Need more caregiving help? ASK FOR IT!
I get it. Your person only wants you. You have a routine. You know what they need before they even indicate otherwise. But this level of caregiving is untenable for anyone long term. Yes, you will feel guilty for leaving them, even for short periods of time. They may even make you feel guilty. Stand firm in this.
Caregiver burnout is real.
You have to find ways to re-charge…I mean really re-charge. Scrolling on your phone is not considered downtime, either. The ability to go to for a walk, to a movie or a play, or fun events that others are going to. It is so important that you take the time for yourself and away from the person you are caring for. In fact, it is absolutely vital.
You do not possess superpowers. You are a finite resource. Burn yourself out, and who is going to steer the ship?
No family? Look into raising funds through online fundraisers, or ask family members to help cover the cost of a caregiver to help relieve you from time to time. Never feel guilt to bring in a paid person to help.
I realize this goes against your pride and ego and dignity. After all, you have managed this long. How bad could it get?
The reality?
It can lead to complete mental breakdowns. If taking care of you seems like the last on the to-do list, consider this. Without your well-being, you are putting those around you at risk. Re-charging in necessary, or your health will suffer. Then all that suffering alone has left everyone without support. Advocate for yourself just as much as you advocate for your loved ones.
There is no shame in needing help, in needing a break and in needing others to also support your efforts. I am going to probably make several people angry with this last statement, but until they have walked in our shoes, their opinion means very little.
You are more important than the person you are caring for!
Yep! That’s right. I said it!
Sounds harsh right?
But the reality is, the primary caregiver, the one who manages absolutely all of it…with or without professional caregiving support..is the most important aspect of this dynamic. Without the caregiver, the person is often neglected, their care suffers, their health is impacted and the costs to dig out of these situations are unimaginable.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
I’ll leave you with this.
Life isn’t fair. It never has been and never will be. It is not what happens on this journey of life, but how you respond.
It is easy to sit in sadness, and despair. Don’t get comfortable there.
People before you have lived with challenges beyond anything we can imagine, and even more people in the future will as well. What inspires you about these people? How do they rise to the occasion.
Learn to accept that you are not going to have all the answers, you are not as in control as you may think you are…but you do have more strength than you ever thought possible.
I am not an inspiration, though I am told often enough that I am. I do, however, have years of experience and perspective and I have learned that this is life.
That’s it.
It is just life. Put one foot in front of the other. This is not forever, this is just right now. Try to lean into the hard, laugh when you can, and find joy in the every day beauty that is all around us. You are not alone, I can promise you this.
As for me? These are the cards I have been dealt and I plan to play the shit out of them!
#uncrushablespirit#caregiversupport#ALS
ALS Fact of the Day~ 