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If someone had sat me down before this season of life began and told me what was really ahead not the sanitized version, but the real version I think I would have handled the hard days a little better. This is that post.
I became a full-time caregiver the way most people do gradually, and then all at once.
There was no single moment where I raised my hand and said “I choose this.” There was just love, and need, and a quiet sense that God was asking something of me. So I said yes. After trying to juggle working and caregiving, I left my accounting career, rearranged our home and our life, and stepped into this role full time.
My mother, who is 80, lives with us. She has dementia. My aunt, who is 78, also lives with us and faces a number of serious health challenges herself. My husband is by my side through all of it. And somewhere in the middle of figuring it all out, Called to Caregiving was born because I kept searching for someone who understood, and I could not find exactly what I needed. So I decided to build it.
If you are new to caregiving, or if you are deep in it and just need someone to say “me too” this post is for you. Here is what I wish I had known from the very beginning.
1. Grief starts before loss does
Nobody told me I would grieve my mother while she was still alive. But dementia does something devastating it takes the person you love slowly, in pieces, while their body remains. You mourn the conversations you used to have. The way she remembered your birthday without being reminded. The version of her that knew your whole story.
This kind of grief has a name it is called anticipatory grief, or ambiguous loss. And it is real. It is valid. You are not being dramatic. You are losing someone you love in a way that the world around you does not always recognize or make space for.
Give yourself permission to grieve. It does not mean you love them any less. It means you are human.
2. You cannot pour from an empty cup — and that is not a cliché
I used to roll my eyes a little at that phrase. Then I burned out completely and understood it in my bones.
Caregiving is relentless. There are no true days off. No clocking out. And if you do not intentionally protect some small piece of yourself your rest, your faith, your friendships, even just fifteen quiet minutes with your coffee and your bible you will have nothing left to give.
This is not selfishness. This is survival. And it is also stewardship. God did not call you to destroy yourself in service to others. He called you to love them and you cannot do that well from a place of complete depletion.
“Come to me, all you who are weary and burdened, and I will give you rest.” Matthew 11:28
3. Ask for help before you desperately need it
This one is hard for people like us. We are the helpers. We are the ones who show up for others. Admitting we need help can feel like failure.
It is not failure. It is wisdom.
By the time most caregivers ask for help, they are already in crisis. Ask early. Ask often. Let people bring a meal. Let a friend sit with your loved one so you can take a walk. Look into respite care options in your area before you reach your breaking point.
The people who love you want to help. Most of them just do not know how. Give them something specific to do and let them do it.
4. The medical system was not designed for family caregivers
You will quickly discover that navigating doctors, specialists, insurance, medications, and care facilities is practically a full-time job in itself. Nobody hands you a guide. Nobody explains what questions to ask. You figure it out as you go, often in waiting rooms while exhausted.
A few things that helped me:
- Keep a dedicated notebook or folder for every medical appointment dates, doctor names, medications, questions, and what was decided. I use a Remarkable Tablet that I where I created a dedicated folder for each, my mother and my aunt. This makes it easier when going to appointments as all the history in one place.
- Never leave an appointment without the next step written down.
- Do not be afraid to ask doctors to slow down and explain things in plain language. You are your loved one’s advocate. That is your job now.
5. Your faith will be tested and that is okay
I have had moments in this caregiving journey where I sat in the dark and asked God some very honest, very hard questions. Why is this happening? How much longer? Where are you in this?
I want you to know that honesty did not push God away. If anything, it brought me closer. The Psalms are full of lament. Full of people crying out to God in exhaustion and confusion and grief. You are in good company.
Your faith does not have to look perfectly composed right now. It just has to be real. Bring all of it to Him the anger, the sadness, the bone-tired exhaustion. He can handle it. And He has not left you in this.
YOU WERE CALLED TO THIS. That does not mean it will be easy. It means you will not walk it alone and that on the other side of it, there will be a depth to your character, your compassion, and your faith that could not have come any other way.
6. The small moments are the real ones
I have learned to find treasure in small things. A moment of clarity when my mother laughs at something familiar. A quiet cup of tea before the house wakes up. My aunt reaching for my hand.
The big milestones of life may look different now. But the small, holy, ordinary moments those are real. Do not miss them while you are grieving what caregiving has cost you.
This is your life too. It is happening right now, in the middle of all of this. It is okay to find beauty in it.
One last thing
If you found this post because you are exhausted, overwhelmed, or quietly wondering how much longer you can keep going I want you to know something.
You are not failing. The fact that it is hard does not mean you are doing it wrong. The fact that you searched for help and found your way here means you are still fighting for them, and for yourself.
That matters. You matter.
This community exists for you. Stick around. There is more to come practical help, honest conversation, faith-based encouragement, and the reminder that you were made for exactly this season, even when it does not feel that way.
I would love to hear from you. Drop a comment below and tell me what do you wish you had known before becoming a caregiver?
With love and faith,
Amy
Called to Caregiving