The Vicious Cycle

“If you have never had a loved one look at you without recognizing who you are, the idea of grieving the loss of someone that is standing right in front of you might seem counterintuitive. In fact, even those who have a loved one with profound dementia often have trouble resolving their own emotions. There may even be multiple times when you may grieve, recover, and then see your loved one slip even further away from you and experience that loss all over again.” –Maria Shriver

The above is so true that grief with a dementia patient is this vicious cycle: grieve, recover, discover another sign they’re slipping away, and then the cycle starts all over again. There are stretches of time where I feel strong and trust that God is taking care of Dad, helping my Mom, and walking with us. But then…

Some days when the to-do list is a little bit shorter and the kids are growing more independent, it’s hard for the mind not to wander. Today is a blue day; one of those days where thoughts of my Dad do nothing but cause some tears.

There’s the guilt: 

It’s hard because I live close by, but not close enough to see him on a daily basis. It’s hard because I have my own family to care for and yet I carry this guilt that I cannot be there to do more, to help more, to squeeze in a few more somewhat lucid moments with him. For sure, I feel the guilt of not spending more time with him and enjoying more moments when I had and have them. Then, there’s the guilt of knowing when I do need just a moment to breathe or I’m feeling angry or frustrated and I instead take it out on the girls.

There’s loss of identity: 

I think it can be said for losing anyone that your own sense of identity starts to waiver. This person, whom you love and are a part of and they are a part of you is slowly leaving and that can be a scary thing. Especially when for me, my Dad has been that person to tell me he believes in me more than I can myself and he reminds me to “just be”, to trust God. As I’ve said before, it’s not a bad thing; It’s another phase of “growing up” and of learning to tell myself these things. But nonetheless, it’s still a loss of who I am.

There’s fear: 

Oh, for sure. Trust me, it takes some diligence to not go there sometimes. That wondering if this is going to be me? And most the time, I do just fine. But given my family history, sometimes I think there’s no hope for me. There are moments when I misplace something or I completely forget something and Jon, bless his heart, has had to reassure me on more than one occasion (and thankfully can tease a little too to lighten me up) that this does not define me as much as it does not define my Dad.

There’s the sadness: 

What more can I say except that it makes me so darn, blasted sad that I’m losing my Dad. I know everyone has stories of loss; we’ve all had loss in different ways. But, right now in my grief, it feels so unfair to be losing my Dad. I’m sad that my vision of how my girls would grow up knowing Grandpa is not the vision that will come to be. I’m sad for my Mom because I cannot imagine the kind of loss she is experiencing. I’m sad for my siblings because we’re losing our Dad, I’m sad for my Aunt who not only cared for her parents dealing with dementia, now she is helping with and losing her brother to dementia. It's a sadness that's hard to explain sometimes. 

And as difficult as it is, I’ve come to learn and accept that trying to avoid these feelings does you no good. Sometimes my mind has to wander and go there and I have to let it. Because as damn difficult as it may be, it’s in this cycle that I learn to trust God all over again and I find a little bit of strength in me that wasn’t there before. This juxtaposition of being frustrated, sad, scared by the vicious cycle and yet thankful for it all at the same time.