Friday, August 29, 2014

Alzheimer's: The Journey Continues

I’m sitting across the table from my mama as a storm rumbles outside her window. When I was a child, she was the one always there to comfort me during thunderstorms. I hated them. I’m still not a fan, but I no longer cower in the bathroom (most of the time) as I used to do. The interesting thing is my mom is a little jumpy this time around and keeps asking me if I’m going to stay tonight so she doesn’t have to be alone in the storm. I remind her I am staying, but I also reassure her that the storm will end soon, that it’s not a biggie as storms go.

The roles are reversed now, and I’m helping her through this part of her life, just as she helped me all those years ago. When we go to the doctor, I ask the questions. I discuss whether a treatment is necessary. I am her advocate and make decisions on her behalf. When I feel it’s a decision that needs more input, I talk with my sister. Our mom is not capable of making those decisions anymore, so we do what is best for her.

Alzheimer’s is a journey. Sometimes it’s a long, heartbreaking process for families. Sometimes it goes relatively quickly. Every journey is unique, fortunately and unfortunately. I am occasionally active on the caregiver message boards, and some of what I read is terribly difficult. A 20-year-old college student is a full-time caregiver for her grandma. A 26-year-old is dealing with her 53-year-old mother’s early onset disease. An elderly man visits his beloved wife nearly every day even though she hasn’t known him for years. Many people are alone, and the message boards are their link to the outside world.

Comparatively speaking, my sister and I feel lucky. First of all, we have each other, which in many families, just doesn’t happen. She handles all the financial and legal issues, and I deal with all the health and caregiving issues. I am completely grateful for her skills, and she is equally grateful for mine. We realized early on, back when we started this journey with our father, that we both had an appreciation for the other’s abilities. After reading an e-mail I wrote to someone who could have been difficult, she said, “Your appreciation to them certainly helped in getting a kind response. I’m so task oriented I sometimes forget that. I’m leaving all outside communications to you. ”

If you know my sister, you will appreciate the humor in that. “Task oriented” is an understatement. I describe her as “zero to sixty” because the woman can get things done! And I now know the best thing I can do is to get out of the way. So, sometimes my approach is called for, and I also get great pleasure in turning an issue over to her, especially when it’s something like dealing with the many people who call our mom’s house because they try to prey on vulnerable seniors. Those are the best. “Let me refer you to my sister,” I like to say as I try not to chuckle.

In all seriousness, we do feel lucky. I previously wrote about our mom still having her beautiful personality even though her memory is failing more and more all the time. She is content in her day-to-day world, she’s happy with the life she’s had, and she’s ready (but not necessarily eager) for when the time comes to go be with our father. She’s ok with it. As she says, “he always led the way.”

Perhaps we feel lucky because we choose to approach life this way. We are both problem solvers, so when we face a hurdle, we determine how best to get past it. Sometimes we walk quietly around it. Sometimes we need to crash right through it. And sometimes we ignore it and hope it goes away (and sometimes, blessedly, it does).

I just went back to read e-mails from three years ago, when we had to step in to stop our father from driving – the real beginning of our Alzheimer’s journey. The pain in those e-mails is clear, and I find myself taking deep breaths again as I read them. (Side note – Lamaze classes didn’t help me much in childbirth, but that deep breathing thing sure has been there for me countless other times!)

We have come so far since that horrible day. We know about Alzheimer’s stages and behaviors; we know about caregiving services (Home Instead is our lifeline) and other living options if needed; we know things that work well and we’ve learned a lot about things that don’t work well; and we know about support and the need to support each other. Sometimes the only thing we know is that we will put our heads together and solve whatever problem comes our way. We’ve also learned we’re both pretty good at it.

This has been on my mind lately because of a post my sister wrote on her blog Layers of the Onion: The Private Face. As she said, we both talked a lot about how much to say publicly, and I was the first to post something about our double dose of Alzheimer’s; but she has since written some really powerful things, and she has been even more open about some difficult parts of our past. So I’m now admiring her. It’s good to be part of a team.