Caregiving

“Is this Ellen, the adventurer?” I am asked when I picked up the phone.

“This is Ellen, the caregiver.” I responded without thinking. 

   I follow several ocean rowers on the internet. I watch their progress as they train, gather gear, run fundraising campaigns, and eventually begin their row across the sea. I know I should be pouring over pilot charts right now. I should be passage planning, researching winds and currents, making gear lists, training. I should be posting on social media more. I should be campaigning, actively fundraising, accounting. I should be doing many things to make my expedition happen. And it all will most certainly happen. Every month I somehow make my boat payments. Every day I do something to move the planning forward. But it isn’t as much as I should be doing. It isn’t as much as people expect me to be doing. But it will all happen when the time is right. 

   I’m a big believer in timing. There will come a time when all I am doing is ocean rowing preparation. There will come a time when I can train my body every day. One day I will be living in my docked boat. And there will come a time when I depart for the sea. But right now, it is the time to be there for my grandpa. And the thing is, I feel like this is part of my training. This is part of my journey to the sea. My ocean rowboat is named after my grandmother. I will be starting and ending my journey in a body of water my grandpa grew up next to. I’m following my river, and it has led me to my grandfather. What I’m doing now is all part of the path my river of life takes. What I learn now I will need while I am at sea – I’m sure of it. 

   I’ve gotten several concerned messages from friends of mine who are wondering if I’m okay, because I miss their phone calls, am quiet on social media, and take a while to respond to messages. It’s because I’m in training – being a caregiver for someone with dementia will either break you down or make you strong. I am intent on becoming strong, but it comes at a cost. You might not hear from me for a time. You might not get many updates. But I ask you to be patient. The ocean expedition is still a go. In fact, it is even more of a go because of what I’m doing right now. If I went rowing on the ocean without becoming a caregiver first, I might not be mentally strong enough to handle the challenges I will face at sea. This might not look like the training ocean rowers normally do to prepare, but I know it is the training I need. 

   So, I am going to have to step away briefly from writing these newsletters, because Pápá’s dementia has gotten worse and I have no time to write these consistently. I’ve been his caregiver for almost four months now and I used to be able to have some time to work on the expedition planning – set up the nonprofit, coordinate merchandise and boat stickers, reach out to sponsors, etc. But caregiving has become more intensive lately as Pápá progresses further into the stages of dementia. My seas, choppy in the last few months, have become rougher. A storm is approaching, and I need to just hang on.

   One thing I’ve learned so far in this experience as a caregiver is that I am not alone. The more people I tell about this, the more I hear that others have cared for family members with dementia before. They tell me of their experiences, and empathize with my situation. They tell me how incredibly difficult and emotionally draining it is. They tell me that I am doing a good thing. And they tell me what kind of person I will be after this – stronger, wiser, better. 

   What kickstarted my journeys down the rivers five years ago was my oldest brother’s sudden death. I have changed immensely as a person since then. Not only did I age out of my early twenties and into my mid-twenties – already a time of changing and growing – but I did it while grieving terribly. Now, I have survived that time and am experiencing another lesson in death. Now, death is not coming suddenly and without warning like it came for my brother. Now it comes in the creeping cancer that took my grandmother a year and a half ago. Now it comes in the cruel form of dementia, slowly taking my Pápá’s mind while leaving his body intact. Now I realize death not as something sudden and tragic, but as a necessary part of the life cycle. We will live, and because of that, some day we will die. The more I come into contact with death and dying, the more I understand about life and living. And that is the lesson I need with me when I am at sea. That is the training I am undergoing now. 

   I will one day row my ocean rowboat. I will learn how to navigate, enter ports, weather storms, desalinate water, survive on the open ocean. I will learn all of the physical things I need to know to be at sea. But before I learn how to survive, I need to understand how one dies.  

   There was a sermon I heard once of a little boy who couldn’t wait to start going to school. When he did go to kindergarten, he couldn’t wait to be in the first grade, and then the second. Then he was looking forward to middle school, then he couldn’t wait to be in high school. He was dying to be a senior and graduate and go to college. Then he couldn’t wait to get his diploma and start a career. He couldn’t wait for the day when he would find a partner. Then he was dying to have kids. Then he was dying for his kids to grow up. Then he was dying to retire. Then he was…dying. I heard that sermon when I was young, and of all the sermons I’ve heard, that one always stuck with me. 

   I of course look forward to being on my journey around the globe. Everything I do on land is to get me on the water. But I’m careful not to look forward to it so much that I don’t enjoy the miracle of the moment. I don’t want to let my future overshadow my present. My life being a caregiver is stressful and emotionally draining, but that doesn’t mean I should retreat within myself and shrivel up and do the bare minimum until it’s over.

   I shouldn’t look ahead but rather look around for what lessons I can learn here. 

   A day spent caregiving is just as special as a day spent rowing at sea. 

   Thank you everyone for being patient with me on this bend in my river. One day we will be on the ocean, but for now I am needed in someone’s life. I know I’m at the right part in my training. I know that right now, this is exactly where I need to be. 

 

Till then,

Love, 



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