I've mentioned in past years that, while I find the Alzheimer's walk empowering - especially on the day of the walk, at the end of the journey - that in the beginning there's always dread. There's always the exhaustion of public disclosure and vulnerability. Being the caregiver, at the helpless and thankless end of this disease is at times exhausting and demoralzing.
And I don't just have to feel vulnerable here. I feel it daily -- when I choose to be direct with others about my Mom's disease and share a tidbit or two of the challenges in a casual conversation. Friends, coworkers, and family are always incredibly generous in extending empathy and understanding. But even still, I feel it - a small, seething anger at how I feel othered because, no matter how empathetic someone is, it's unbearable to speak directly, acknowledge directly, how shitty and helpless Alzheimer's makes it's victims. How it dismantles and exposes, overpowers and unravels the afflicted and their community.
When I choose not to speak because it feels like it will distance and isolate, I also feel helpless. I feel a tinge of sadness. I fight back a quiet envy that creeps in - of others who have parents on hand to help babysit at the drop of a hat. I long for the ease and lack of worry of those who are fixated on things that seem so trivial in comparison. And while the person, in that casual conversation does not even know it - I feel vulnerable and tired. I find myself exacerbated by my inability to hold things in better perspective, compare less, be more grateful for things in front of me, or that I can't step back and take a break if and when it's needed.
This year, as I prepare to walk I feel a heightened level of frustration that not only do caregivers experience the burden of caregiving, but that the brunt of trying to raise awareness also falls on our shoulders.
In all honesty - I don't want to walk this year.
I am tired of posting these entries -- annoyed when I hear the voice of some chirpy staff member of the Alzheimer's Association at the end of a call, disrupting my work day to encourage me to 'reactivate my team!" 'Join a bank day!' 'Get excited for the walk!"
I think it all boils down to the lack of options. There is no cure for this disease, so the best we can do is raise awareness (and subsequently, raise funds for services for victims and caregivers, as well as for research). And so, for those of us watching this disease ravage our family, if we don't advocate then it can often feel as though we're giving up. Even in our choices to fight this disease we are disgustingly limited - and our options to take action involve more time, more energy, more exposure. And we are already so, so spent.
All along the way, this has been a journey bounded by our limitations and marked by loss. Walking each year and advocating, while empowering at moments, is not without it's own challenges. But if I look to the other side of this anger, and key in on the other biggest takeaway of the past six years, I'll find my Mom's resilience and her fighting spirit shining through - piercing my anger and my hardened heart. She has been continued to be my inspiration; her endurance is the driving force that compels me to keep doing this damn thing, year in and year out. And so I will keep walking, even when I am weary and even when I am angry.
While I am walking this year, I will not only be walking alongside my Mom, but I will also be walking for those who are weary. I will be walking for those who are no less angry, no less committed to ending Alzheimer's - but who don't have the energy to carry on. The gravity of the absence of so many caregivers and victims of this disease should embolden the steps of those among us who can come out. It should ignite a fire under those of us who are able to keep going. If you are able, I hope you'll join us.
Click here to donate to our walk team or register to join: http://act.alz.org/site/TR/Walk2018/KY-GreaterKentuckyandSouthernIndiana?px=6905271&pg=personal&fr_id=11244
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