- Did I tell him I loved him often enough?
- Did I do everything within my power to make sure he was comfortable and well taken care of?
- Did I comfort?
- Did I sometimes lack patience?
- Did I sometimes want to just run away?
- Did I think of the burden on myself too much?
- Did I put myself in his shoes?
- Did I fight hard enough, demand the respect for him he deserved?
- Did I seek out the best medical care possible?
As if to rekindle, it requires such an emotional journey to delve that deep, to try and get to a place where you were - when how you got here defines you. Then, to realize in just a fleeting moment that who you were is no longer relevant. Myself is who you've become through the process.
Just yesterday when cleaning up around our community pond with the neighbors, I imagined him there. Standing at the dam with a rake in his hand, telling us all how it should be done. Rallying the troops, directing traffic, cheering everybody on, telling jokes, laughing out loud with his head thrown back. Then, it occurred to me last night that I had inadvertently taken on that role. In my mind, it was me turning cartwheels down the cart path.
Cousin Mark Brown whispered in my ear just after Bill's funeral, "You need to understand that you are going to feel two emotions at once that most in their lifetime will never have the opportunity to feel. Grief and Relief."
One may think (as I initially did) that the RELIEF he spoke to was intended for me. That I would feel relieved of the burden and responsibility. Not so. Mark Brown knew better. It did take me some time to completely grasp it, but what I know now is that Bill's cousin knew me well enough to know that I would eventually feel my husband's relief.
The encouragement from around the world to continue writing creates a battle within me. I remain in awe of the many sufferers and caregivers in search of answers or just a comrade when feeling sadness, guilt, exhaustion and loneliness.
Then, such a turn of prose. Several years ago the angst in telling a daily story of what really goes on while living with Alzheimer's, I respectfully delivered a tale with comedic undertones. My self-deprecating style and mantra of laughing at oneself presented a platform that we were completely unaware of. Yes, it is true the primary caregivers carry the load, however my 'brand of caregiving' never saw it that way. It has to be within you. Is it duty you feel or is it love? The long-suffering duty within me will continue to write with raw honesty but I now find the laughter hard to muster. Just as I referred so fondly and characteristically to him as Willie Bill and WB during the war, the day he left me he was Bill.
You can reach back in the articles to find it, but pay close attention to the turn in focus. Dutifully, I hope this in some way can assist others while providing care, fearing loss or feeling lonely. However, the paradigm shift created a soul searching, gut wrenching, mind boggling race to carry on. Now, it is selfishly less a story for comforting others than a document of emotions throughout this time in our lives. Something that our children can hold on to. If one can read through the tea leaves to find any measure of relief, then perhaps we have accomplished something else as well.
I will never forget Wade saying to me, "I will always love you for taking such good care of Dad."
It was a precious moment. Because it was always love. Not duty. But, to have no guilt at all would be unrealistic for our bunch. We have strong opinions, high expectations and above all we think and love deeply. So, go away guilt. Go away from me. Go away from our children.
Perhaps then at the end of the day it matters not the many times we told him, no matter the last words we spoke, we still wish we could have said goodbye.
Planning for a bittersweet day on Monday by staying busy and productive. I shall recognize his 67th birthday (another first) with memories of all the celebrations we had enjoyed so much together while acknowledging that we (as a family) did everything we knew to do. And that regardless his state of mind, I know without a doubt he knew it.
Happy Birthday, Honey. Perhaps gone from our lives physically, you will always be with us as we carry you in our hearts wherever we go, whatever we do, whomever we become.
My name is Rhonda Brantley and my husband, Billy Ray Brantley suffered from Early Onset Alzheimer's Dementia.