Last month I found this plan in my bible app titled “gradual goodbye” by Welby O’Brien. When I read it, it took me back to what our family had to fight through up to last year. The lost of our dad has made this part, ”the gradual goodbye”, felt insignificant, hidden, and buried deep under; but in fact it is not, the messy middle between the start and the end of something is where you can find healing, you can find growth; it is where you find love, and it is where you meet God.

This post is dedicated for you who is or was a caregiver of the terminally ill,
for you who has lost a loved one.

It all started when our family heard this three letters; A,L, & S on November 10, 2017. It is still very clear in my mind of what had happened, where I was, who I was with, how these three letters first appeared in our life that day, and how our lives was turned upside down from that day on.

What is ALS? 
I’m quoting one of my previous post, here is how I put it. 

“It’s a degenerative illness with no cure that slowly eats away at your motor functions starting from your limbs all the way to your respiratory and right now the only ending it has for you is death.”

It was beyond our imagination, it was totally out of our minds, we didn’t expect it, it took us by surprise, it was all so sudden. It took the diagnosis and opinions from more than 4 neurologist for us to believe that it’s true, that this is it, we have to face it. From that day on, our lives were changed, I can’t speak for my siblings for we all process things differently; but for me from that day on my status had changed from being a daughter to a caregiver. 

I recently read an instagram post that said and I rephrased

“the ultimate hardest thing about being a caregiver is not in the roles, nor in the difficult routines; it is in knowing the fact that someday you’ll wake up and you are no longer a caregiver, that one day you just stop being one.” 

Now that it has been a year since I stopped being one, I could say that this saying is totally true; back then I couldn’t really put a rank on the hard things that I had to face because each has its own pain and each has its own challenges; back then I couldn’t see over and above my anger, my sadness, my disappointments, but now that I could, I want to help others that went or is going through similar things, because maybe, just maybe, by doing this I can lighten their burden and even if it’s just a little then it’ll be worth it, because I myself know how much it would have meant.

Here are some things that I wish I understood back then or that I wish someone else could have told me

1. Grief is real
   and it didn’t wait till the end to appear.

Everyday we wonder if today is their last day and we wonder how hard would the grief of their death be for us. Little did we know that we already are grieving. Those small explosions of anger, those “I don’t know why I cry” tears, those feelings of wanting to withdraw from the world, those feelings of not being able to get out of bed, we thought those were just us being tired but no, it’s more than that, we are actually grieving. 

For me, I was grieving for the life that I thought I should have or I wished I had, all the things I could have done but couldn’t. I was grieving that I couldn’t be just like any other kid my age, doing whatever they want to do, hanging out until late with their friends, not having to worry or to rush back home whenever they went out. And we also need to realize with every stages of the sickness we grieve all over again; when we see that they deteriorate, we grief together with them.

If only back then I understood grieve as well as I do today, some things would probably be different, I wouldn’t have been so withdrawn, so down at times, and felt so helpless most of the time. Now that you know that feeling you are feeling is grief then let me tell you a saying someone dear to me always tells me, the only way through grief is through. Feel it, feel it to your core, feel it in your heart deep to your soul, don’t fight it. It’s normal, it doesn’t mean you are weak, it only proves that you are human; once you’re done with it then get back up, don’t dwell in it, don’t even try to re-feel it. You’ll have so many other times when life forces you to do that and to relive the moment;but for now, get back up. 

2. It’s okay to be tired
   and it’s TOTALLY okay to ask for help.

For the most part of the whole journey I have always blamed and hated myself for being so weak, for getting tired, for even thinking to run away from home. Being a caregiver drains you not just physically but also mentally and even spiritually; for me it was like living a life where I was given this huge luggage I’ve never asked for to carry around wherever I go; for me it was a life with no safe place, no place to get away from life itself, my home has become another workplace for me, sometimes it even feels like a war zone.

Remember, that you are just human, that you are not in this alone, and it’s totally okay to take a rest, it’s okay to ask someone for help just so that you can take a breath for a little while. See it this way, by asking someone for help you are actually giving that person a chance to love, something that is needed by that person and by the person you are caring for. 

I can testify that the above statements are true, I can see how happy my dad was whenever his siblings came over to my house, I can see how satisfied someone be after being able to do something for my dad; I can testify that the only reason I survived the journey still sane and alive was because I (and we) had lots and lots of help, from my dad’s relatives and from our friends, we are forever grateful for these people and I hope after reading this you will feel it too. 

3. You are still loved.

Truth be told this is one of the things that I struggled with the most and still was even after my dad passed. I know how it feels when people stopped asking you how you’re doing but instead they asked you how your dad is doing or your mom is doing and so on; it feels like you no longer matter that your whole existence had just been swallowed and replaced by them and their sickness. Then not long after that, you started thinking that you’re worthless that you are only defined by the person you are taking care of, that people only talked to you because your dad is terminally ill or your mom is dying and all. 

That nobody cares about your wellbeing as long as the person you’re taking care of is okay. 
That nobody sees you as you. That nobody loves you as you. 
But hey, here I am writing all these things for you because you matter. I see you. I feel you. 
And you do matter to other people too, it might not feel or seem like it at times because yes there is a bigger thing going on but know that underneath what it seems and how it looks, you are still loved, you matter too.

P.S. for you who are reading this and you know someone who is a caregiver or was a caregiver, please take the time to show and tell them that they are loved and you see them as them.

4. At the end of it, as hard as it is,
   celebrate and in time, let go.

This is the one hardest thing to do on top of all other things. But when you reach the end, and the end is going to be hard, but I’m gonna ask you to try to celebrate. 

Celebrate that they are no longer in pain. 
Celebrate that they don’t have to suffer any more. 
Celebrate a life, a race, done well, finished well. 
Celebrate yourself, that you survived, and that you have done your best. 

No matter what the regret and guilt inside of you tell you, listen to this, you have done your best, you have given it your all; and when I say let go, I didn’t mean to let the person go from our lives, they’ll always be apart of us no matter what. But, let go of the regrets of things that was not yet done, left undone  or unfinished; let go of the guilt and release forgiveness to yourself. Don’t hold unto these feelings, it would do you no good. To put it easier, let go of the bad things and rejoice in the good things.

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So, where is God in all of these? 
He is the alpha and omega, He is the beginning and the end. 
In all of these, He is in all of it. 

1. He is with you in your grief.
    He weeps as you weeps.
    He calms you down as you’re angry.
    He picks you up when you are about to give up.

 Psalms 34:18 NLT
The Lord is close to the brokenhearted; he rescues those whose spirits are crushed

2. He gives you rest.
     He sends you the people you need and all the help you need.
     In him you will find your room to breathe,
     He is your hiding place. 

Psalm 91:4 (NLT)
He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection.

3. His love towards you never change.
     He loves you, always do, always will, no matter what.  

 Romans 8:38 (NLT)
And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons,[b] neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. 

4. He is with you through the end and even more.
     He is with them and beside them as their time come,
     at their finish line.

 Revelation 21:4 (NLT)
‘He will wipe every tear from their eyes. There will be no more death’[a] or mourning or crying or pain, for the old order of things has passed away.”
 

To close all these let me give you this verse that is close to my heart.

2 Timothy 4:7 (NLT)    
I have fought the good fight,
I have finished the race,
I have kept the faith.

I know that this verse is always use to honor those who have passed on but I pray that at the end of it this verse is to be said of your loved one but also of you. I hope that at the end you still have faith and even more than before. 

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During the 1 year and 8 months,
we had used 4 wheel chairs, 
more than 3000 pills,
approximately 15 caretakers, 
too many to count sleepless nights, 
gallons of tears, 
countless urgent phone calls, 
countless apologies for having to leave abruptly,
ONE ENDING. 
Through all of these, I can say that God is still good,
and I hope you found Him the same too.