When we start caregiving for our loved one’s with Dementia, people are quick to say a few things:

1. Don’t forget to look after yourself.

2. Let me know if you need anything.

3. I’m here for you.

Okay…

Maybe when they originally make those statements, they say it with good intentions.

But, let’s face it, after a while, those statements go straight out of the window.

But, you know what I wish someone would have told me: “You will grieve from beginning to end and possibly beyond.”

I wish someone would have told me how painful it would be to grieve my still living mother.

I wish someone would have told me just how much every aspect of life would change.

I wish someone would have told me traditions would go by the wayside and birthdays would never be the same.

I wish someone would have told me, I’ll never be the same.

Dementia is More Than Memory Loss

I wish dementia was just memory loss.

Dementia has crept into every aspect of our lives.

Dementia now, has ruined birthdays for me.

If Dementia were solely memory loss, I could have written my mom a note that my birthday (now past) was coming up and reminded her of the yearly tradition of letting me know, at my birthday time, that I arrived into the world.

I could have reminded her (at the very least), to remember to wish me a happy birthday.

I could have reminded my mom to sing happy birthday to me.

I could have reminded her to be my mom.

Instead, I spend the day grieving the loss of our traditions.

Instead, I spent the day grieving that she doesn’t even remember giving birth to me.

Instead, I cried.

I cried for me. I cried for her. I cried for the loss of my mother that was always excited for my birthday.

I cried for the mother who can’t even remember her own birthday, if she wanted to.

Instead, I spend the day grieving the loss of the birth time call.

All of the traditions I took for granted as a child, gone. How I miss them.

I’ve been through this grief before. It seems to happen yearly around different times.

Don’t get me wrong. The grief is daily. But it has moments where it, absolutely, intensifies and can be all consuming and gut wretching.

Sometimes, I just want someone to tell me, it’s okay.

Sometimes, I just want to be hugged.

Sometimes, I just want someone to sit in silence with me and let me cry.

Sometimes, I want all of the above.

Sometimes, I want none of it.

It’s a vicious cycle.

It’s so hard.

Why didn’t anyone tell me I would grieve like this?

Why didn’t anyone tell me how much this would change me?

Why didn’t anyone tell me how much caregiving would crush my soul?

Why didn’t anyone say to me, when I feel lost and like I’m drowning in grief and pain, they are there for me?

I wish someone would have told me to not walk this world of grief alone. Yet, so many of us do it.

Suffering in Silence

Why do we allow ourselves to suffer in silence?

How come we don’t reach out more? I mean, to other caregivers like ourselves.

Are we afraid of looking weak?

Are we afraid we will have a nervous breakdown and never stop crying?

After dealing with this mostly on my own and not saying much to anyone, I decided it was time for me to break my silence and share my pain.

I share my pain so you can see you’re not alone. I share my pain so that maybe it can help you heal. So that maybe in this I, myself, can find healing. And maybe a little peace, as well.

In a, not too far in the, future post, I want to expound more on this topic. It needs to be spoken about more. We need to stop hiding when we are going through this.

I hope this post has helped you.

If you can relate and are going through this as well, please share your story with us. We all need to know we are not alone. We all need a safe space to vent. I hope this will be one for you.