I continue to work on consolidating old blogs and various pieces I’ve written. Now, I’d like to bring forward the first of a few posts I created while caring for my mother. I was working at a high-stress corporate job at the time. I was lucky enough to have access to our internal social computing system, where I could share some of what I was learning along the way. There were a number of people that appreciated the posts. In fact, when I made my last post on the topic, the VP of HR actually sent me a private email thanking me and sending me is best wishes. It was an uncharacteristically kind move.
At any rate, here is the first of those posts:
Alzheimer’s – What I’ve Learned (so far)
My personal blog is very empty. I post semi-regularly within a group that I own, but here on my own page I can hear the crickets. However, a dear colleague has poked me a few times, urging me to talk about this topic and reach out. My goal is very clear: I want to connect with other people who care for a parent with dementia. It can be all-consuming, and a very lonely road. Equally as clear: I do not have all of the answers and I’ve made many, many mistakes thus far.
So, here goes. I think to start with, I’d better tell just a tiny bit of my story.
My mother has Alzheimer’s (ALZ). When she was diagnosed (or rather, when we found out) two very long years ago, my mom was 79, extremely active in her community, and living 250 miles away, alone in an apartment in a small town in Oregon.
What I’ve Learned (WIL): By the time you know it is Dementia/Alzheimer’s, there’s generally something pretty unpleasant going on. Take a deep breath.
I guess it’s a “typical” story. Her friends started calling me. Mom was showing up at church on the wrong day. She was confused and upset, but couldn’t express what was making her cry all the time. Had physical ailments but couldn’t tell anyone what the doctor had said. She was paranoid that everyone hated her. Then one day she came to Portland to see a play I was performing in. I hadn’t seen her in six months, and she was just… gone. The woman that got off the plane was not my mother. She was dazed, didn’t recognize a few of the family members, cried a lot and wanted to fly home a day early.
What I’ve Learned (WIL): It’s very likely that you already know in your heart what is going on, but it’s just too devastating to face. Take a deep breath, turn around and face it.
Looking back, my mother had been telling me in little ways for years. Books on her shelf about memory loss. Frustration that people kept telling her what to do and where to go. Humiliation when she was let go from a theatrical production because the director didn’t like the way she was reading. Never willing (or as it turns out able) to tell me what the doctor said at her appointments. Inability to get her medications right. Conversation always shifting to my life, what I was up to, and no answers when I asked what she’d been doing.
With great “luck,” my extremely independent mom agreed a few years back that my brother and I should have Power of Attorney and Health Care Authorization, just in case (a great step, but another ALZ flag). So, authorization in hand, one day I drove down to visit her and went directly to her doctor (alone) to ask him myself what was going on. I cared for my father for the last years of his life (my parents divorced when I was very young, and I grew up with my mom), and it was hard. Very, very hard. But his care, taking over all of his finances and his health care, emotionally supporting him, his numerous physical disabilities, his subsequent cancer, having to decide to stop treatment, and his passing… none of this was NEARLY as devastating to me as hearing the doctor say “Alzheimer’s-like Dementia.” It’s one of those clichés, but seriously, it’s like all the air leaves the room and the doctor’s voice starts to sound like the adults in a Charlie Brown special (“wha-wa wha wa wha wa wa” – you know you can hear it!). My mom was a highly-accomplished musician, an operatic-soprano, and an actress. She had been a Librarian before she retired. Spent all her time reading, creating a card catalog for the 1000’s of CDs she had, doing crosswords and other word puzzles. She was incredibly intelligent and thrived on the function of her mind – it was her life’s blood. Now I knew that my mother was really and truly never coming back. That’s when the real grief begins.
What I’ve Learned (WIL): No, you will not hear much after the ALZ word comes out. That’s okay. Continue breathing, if you can. Hold someone’s hand, if you can. Connect with someone immediately, if you can. Ride out the initial waves of shock, horror, and intense fear. I’m not gonna lie – that feeling won’t go away. But eventually maybe some of the fog will clear, and then – because we are smart, problem-solving people here – hopefully you’ll find a way to move into action. Seriously – apply the skills you’ve learned at this very innovative company of ours.
Actually, I think I will end here, because it brings me to the point I want to make. Connect with someone immediately if you can. Within about three weeks of timidly mentioning to some colleagues that my mom has ALZ, I had in one way or another found a number of colleagues who were currently, or had recently been in a similar situation (with parents, in-laws, siblings, you name it). I won’t call them out by name, because that’s their story to share if and when they want to. But I will say (in case they read this) their support, their information, their openness and sometimes brutal honesty has been a lifeline and I don’t know how I can possibly ever thank them for reaching out to me.
Except perhaps to reach out to you.
What I’ve Learned (WIL): You can’t do it alone (emotionally, intellectually, or logistically), and you don’t have to.
I’m here. I’m dealing with it too. I’m grieving every small loss as my mom slips further into the morass. I’m frightened much of the time. I question every decision I have to make regarding not only my mother’s care, but how every single thing I do impacts her. Most days I wake up, my first thought is about my mother. Thinking about my mom keeps me up at night. But not to end on a bummer note – I’ve also found ways to laugh with my mom, people with whom I can share some of the absurdities (and believe me, there are many), and ways that I can learn from it.
Today, I am thankful for:
- My manager and my teammates, for being amazingly supportive. (WIL: tell your manager what’s going on)
- My colleagues for reaching out, checking in and giving me a laugh when I need it. (WIL: it’s OKAY to laugh)
- This company, for a culture that support employees through life’s challenges.
- My mom, Phyllis Anderson. I’ve been the luckiest girl in the world to have an intelligent, strong, talented, caring woman like my mom as a role model. I believe (hope) she gave me just enough of those qualities that I can handle this. I’m thankful for her every day – even when I want to tear my hair out, which is often.