There are some goodbyes that happen in a single moment. Hugs and kisses and “I love yous” and hopefully there is enough time to say all the things that need to be said but most times there is never enough time…
…and then there are the long goodbyes.
Dementia is one of them.
No one prepares you for what it feels like to slowly lose someone you love while they’re still here. You watch pieces of them slip away. Memories, conversations, routines, and eventually parts of their personality. They’re physically still present, but little by little, dementia steals pieces of the person you’ve always known.
One of the hardest parts in the beginning is that you are desperate to fix it.
You ask every question imaginable! You Google everything!
What if it’s a medication? What if there’s something she’s taking that’s causing this? What if there’s a medication we could put her on that would help? What if there is a chance, any chance at all, that I could get my Momma back?
You search for answers because that’s what love does. Love wants to solve the problem. Love wants to make it better. Anything to fix it and stop it from happening.
Eventually, you come to a painful realization….Our job isn’t to fix them.
Our job is to love them through it.
To love them with hugs they may not remember tomorrow.
To kiss their forehead even if they no longer remember why you came to visit.
To answer the same questions over and over without making them feel like a burden.
To cook the same meal every day if that’s what they’ll eat. To let them enjoy the foods that bring them comfort instead of arguing over what they should eat.
Don’t argue. Sometimes it just easier to agree with their stories, even when they mix up the people in them and they get the timeline all mixed up.
Don’t correct! What’s the point in correcting? It will cause them discomfort and that’s not our goal. Our goal is to just love.
Colossians 3:12-14:
“Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. Bear with each other… And over all these virtues put on love, which binds them all together in perfect unity.”
If there was ever a passage written for caregivers, this might be it.
Compassion when they’re scared.
Kindness when they’re confused.
Humility when we could correct and argue, but it would only satisfy our need to be right, not their need to be loved.
Gentleness when they’re frustrated.
Patience when they ask the same question for the tenth time today.
And above all…
Love.
…But God doesn’t stop there.
Galatians 6:2 tells us,
“Carry each other’s burdens, and in this way you will fulfill the law of Christ.”
Those words aren’t just for the caregiver, they are for all of us!
If you’re caring for someone with long term illness or disability know that you don’t have to carry this burden alone! Allow others to pray with you, sit with your loved one while you take a break, bring you a meal, or simply listen on the days when your heart is heavy. Talk! Real talk! Find YOUR PEOPLE. Find the people that you can dump all your thoughts, fears, and emotions. Those people who know you best and can walk through this with you.
On the other side of that, if you know someone who is walking this road, don’t wait for them to ask for help.
Reach out!
Send a text. Stop by for a visit. Offer to stay with their loved one for an hour so they can rest. Sometimes carrying someone’s burden doesn’t require grand gestures. It simply requires showing up.
That’s what the body of Christ is called to do.
Love one another.
Carry one another.
Walk beside one another, because no one was meant to walk through the long goodbye alone. Love is what they will remember, even when everything else begins to fade.
There were many days I prayed that God would heal my Mom’s mind. I prayed for a miracle. I prayed for answers, and while He didn’t answer those prayers the way I wanted Him to, He gently reminded me that maybe my calling wasn’t to fix her…
…Maybe my calling was simply to love her well.
I truly believe God entrusted our family with this journey. Not because we were stronger than anyone else, but because He promised to walk beside us while we carried this burden. On the days when we felt empty, He gave us just enough strength for one more conversation, one more appointment, one more sleepless night, and one more “I love you.”
However, I didn’t feel it WHILE we were going through it. In fact, I felt like God had no clue what was going on with us and Momma. He wasn’t listening, He didn’t care, and He wasn’t there!
Sister and I were anxious all the time. Jumping at every phone call or text, watching the cameras we installed non stop and if we didn’t see her on them we would panic and run over there.
Even now, a month after Momma has been in Heaven, Sissy and I are still feeling the need to do something, check the cameras that are no longer set up, still jumping at text messages and phone calls. Aniexty is real. Panic is real. PTSD IS REAL!
Another thing no one tells you is that grief begins long before death.
You don’t wait until the funeral to grieve.
You grieve every little loss along the way.
The stories they can no longer tell.
The conversations that don’t make sense anymore.
The day they stop recognizing familiar places.
The day they no longer recognize you or question if it’s really you!
You’re grieving someone who is still sitting right in front of you.
That kind of grief is real.
…and it’s incredibly lonely.
One of the greatest lessons our Daddy taught us was this: You are not alone!
Whatever you’re facing, someone else has walked this road before you.
You may feel like no one understands, but someone has cried the same tears you’ve cried. They’ve sat in the same doctor’s offices. They’ve answered the same repeated questions.
They’ve driven home wondering how much longer they could do this!!!!
…And somehow…
They made it.
They survived.
They pushed through.
That doesn’t mean their journey was easy, and it doesn’t mean yours will be either, but it does mean there is hope and there is an end.
If you’re in the middle of this long goodbye, don’t isolate yourself. Find people who understand. Join a caregiver support group. I found so many on social media. There is comfort in knowing your aren’t alone. Even if you never comment, you can read what others are experiencing and it reminds you that others are going through it too and sometimes you can say, “at least I’m not dealing with that too!”
Lean on your church. Talk with friends. Let people help carry the weight.
Most importantly, lean on God.
He never intended for us to carry burdens like this alone! Even when you don’t feel like He’s there!
If you’re someone who knows a person with dementia, disability or just is older individual and you may feel like you have nothing in common with them or you are afraid to visit because you don’t know what to say, let me encourage you…
Please don’t stay away!
You don’t need the perfect words.
You don’t have to correct them if they’re confused.
You don’t have to carry a conversation.
Just be present.
Sit beside them.
Hold their hand.
Look through old photo albums.
Listen to the stories they still remember.
Even if they don’t remember your name tomorrow, they’ll remember how you made them feel today.
Your presence is a gift.
Your kindness matters.
Your love matters.
Dementia may slowly steal memories, but it can never steal the love that is shown to someone with compassion, patience, gentleness, and grace.
If you’re walking through the long goodbye today, I pray you’ll remember this:
You don’t have to fix it.
You simply have to love.
Cowles Farm 