Loss

For the past several years, life has been so hectic and fast paced. Some of my own doing for no good reason, some of necessity, some of life not turning out the way I planned. Now things have actually slowed down. What I was hoping and praying for in those hectic moments has come to be – rest and quiet. Yet, some days I still feel hectic, unsettled - anything but quiet. So what’s with all the noise? Too much time lends to thinking about Dad.

The other day, Jon and I were talking and I said that it just really sucks that I’ve lost Dad. Jon replied by saying that I have not lost him; he’s still here. Now trust me, Jon is not saying this out of ignorance. He is doing his best to comfort me and be there for me.  He fully knows and understands what I mean. Even still, there are moments I want to shout, “no, Dad isn’t here anymore”. The person who would listen and give advice in moments just like this is not here anymore. The person who would remind me I’m my worst critic and assure me I’m doing just fine, is no longer here. The person who has comforted me on so many occasions can no longer comfort me in the way he used to. So many losses that I’m grieving…

…Yet that person is not gone.

I mean talk about a crap-load to try to wrap your head around, deal with, accept. Make no bones about it; it is just plain different interacting with Dad. Then comes that damn guilt of course. Because I think maybe it’s just me and my own stubbornness not willing to talk to him about these things; afraid to talk to him about these things because it’s time for me to put on my big girl pants and be there for him.

I get what Jon is trying to tell me. Dad may not be the same anymore, but he is still here. There are moments to have, memories to make, and time that cannot be wasted. I say a little mantra for both of us. I assure Dad that he may not be who he was 5 years ago, 2 weeks ago, but he is whom he is now and that’s all that matters. And most of the time it does, it really does.

But I will not deny there are some days where it does matter that he’s not who he used to be. It does matter that he can’t always remember my girls’ names. It does matter that a memory he shares with me like it was a month ago, was actually 17 years ago when I was in high school. It matters that family dynamics have changed. It matters that I am losing these things, this person, my Dad. I’m losing him in a drawn out, really sucky way.

The other day I had what, in that moment, felt like a horrible thought… However, I’m pretty sure everyone thinks this thought when it comes to a loved one who is suffering. You know the one where you just hope and pray for them to be free – of pain, of hurt, of feeling lost inside their own head and body. I have never had a reason to think this thought until now. Quite frankly never thought I’d have to be thinking this thought right now. So, it was the first time it really hit me – the understanding of what the answer to that prayer would mean for me, for my family. It’s a loss I just don’t even want to think about and yet I do, because it is the reality of this crappy disease.

There are so many things I’m learning that I am thankful for and grateful for and at the same time angry that it’s taking this shitty disease for me to learn them. If there’s one little nugget of wisdom I am gleaning through it all it is summed up in this quote I only happened to see because I was watching one of those gushy Hallmark movies (and trust me, I’m needing those gushy Hallmark movies more than ever).

“Surrender to what is.

Let go of what was.

Have faith in what will be.” (Sonia Ricotti)

I think if ever there was a saying/mantra/quote to sum up dealing with dementia, this would be it.

I personally think the letting go of what was should be the first line because the only way to surrender to what is would be to let go of what was. Nothing is as is used to be. The person with dementia is not the same, life is not the same. But, you have to let go and then you have to surrender to it because fighting against it just does no good. Does not mean that it doesn’t suck, it absolutely does. But, I think it allows you to see the little moments of joy and light when dealing with it. (Bear in mind, I say this as a person who is not a full time caregiver so I fully understand that it is much easier for me to say this.) As for having faith in what will be… I can't tell anyone else how to have faith in what will be. I can only share how my faith is helping me and hope that maybe, just maybe I'm sharing a small snippet of the hope of the Gospel.

I have an idea of the ending, but I have no control over how it is unfolding and no control over how it will end. And so now is where I can say my faith is larger and stronger than it’s ever been. Not because of my own doing, not because I’m a saint (trust me, I’m far from it). But, it’s because of all the loss. It is only in this grief I can I say I know nothing; I have control over nothing, please God carry this load.  I may not like it, but I’m trusting harder than I ever have and I believe and have felt that God is trading His yoke for mine.