February 4, 2016 by Amy

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Hard week, this week. Mostly because Alzheimer’s sucks.

For new readers who aren’t familiar with my old blog, here’s the nutshell: in 2014 my mother was diagnosed with Posterior Cortical Atrophy, or PCA, which may or may not be a rare subset of Alzheimer’s. Depends on the neurologist you ask. That’s how messed up it is: experts can’t even agree on what the heck it is. Some say it’s Alzheimer’s, some say it’s unrelated, some say it’s a precursor. What we all know is this: it sucks.

Vision problems are the most obvious symptom of PCA. The eyes work, but the brain can’t process the images. She has that. But she also has all the memory issues that come with “traditional” Alzheimer’s. Her doctor’s haven’t said “Alzheimer’s,” because they know they cannot definitively diagnose Alzheimer’s without an autopsy and because they know that it’s one of the very worst diseases you can tell someone she has. But we say it. Because we know. And because when we say “PCA” to others we have to explain what PCA is and go through it all over again. Everyone knows what Alzheimer’s is.

My mother is declining fast. Well, fast to us, anyway. The thing with Alzheimer’s is that it’s different for everyone. Rates of decline and plateaus and even symptoms. Some people respond (maybe?) to certain medications. None that will stop the decline, only slow the progression. There’s not even a good way to tell that. The only certainty is that there’s a boatload of “We don’t know” involved.

I know that people deal with Alzheimer’s differently. I’m talking about the people who don’t have Alzheimer’s but know someone who does, or know someone who knows someone who does. All I can do is share my own reality, and my own coping mechanisms. They are these:

My reality is that I am losing a mother that I have desperately hoped to find my entire adult life. My relationship with my mother was contentious for years, from the time I was a teenager right up until when she forgot to be mean. I spent years mourning what I didn’t have: a close relationship full of love and support with someone I knew loved me merely by dint of giving birth to me. No questions asked. Mother + Daughter = Love. I know she loved me the very best she could. It just wasn’t enough for me. (I have never denied that I have unrealistic expectations.) I needed love without judgment. Love without criticism. But through all that, even when I didn’t realize it, part of me hoped (again, unrealistically, I know) that we’d get past all the scar tissue and eventually have a healthy, loving relationship. PCA smashed that hope, so I’m grieving anew. I’m grieving twice, once for the mother I always wanted and again for the mother I am losing. Yes, I do know how completely messed up this is. I yam what I yam.

In addition to unpacking my emotional baggage over and over, I am trying to help with care for my mother. My role has largely been managing the neurologist and getting involved when there’s bureaucracy. I am tackling the legal and insurance junk that comes with securing short- and long-term professional care. My sister’s role has largely been managing the day-to-day crises that pop up, which is remarkable in both scope and depth, and which she handles with grace and without complaint. She got the short end of the stick with this division of labor, and I know it, and I am eternally grateful for her and for everything she does. We both work full-time and have families, and Alzheimer’s is anything but convenient.

That’s my reality. Now, here’s how I cope.

I cry. A lot. I write. A lot. Even more than I cry. Thousands of words you will never see here, and which will most likely never see the light of day. I research. I get mad. I forcefully try to forget we are going through this and fail, which angers me all over again. I call or text my closest friends and I lean on them hard. And since they are incredibly kind and sturdy people, they hold me up and make me feel better. (You know who you are. I love you.) But what I really need to truly cope with this on a day-to-day basis is this: I don’t want to talk about it unless I want to talk about it. Talking about my mother needs to be on my terms. There is so much I can’t control with this disease and what it’s doing to my family; I have to seize control of this one little thing. I need to control when I think about it, how deep I go with those thoughts, and when I express how I feel about it. If you are a friend of mine, or a loved one, I already know you care. I’ve done a bang-up job of ditching the jerky people in my life, so I’m certain that the ones left are good people. You do not need to prove to me that you care about me, or my family, by asking about my mother. Because when I am not in that mental space to cope with questions, it feels like a sucker-punch to the gut. And most days, I am not in the mental space to cope with it. I think about my mother a lot. I think about my family a lot. I just don’t want to discuss her, or them, unless I feel like it.

Part of it is this: I know that she feels humiliated that she has this terrible disease. Even though she has done nothing to deserve it. Even though she can’t fix it. She is still embarrassed. And I want to honor her by not talking about her. This is incredibly ironic because my mother’s favorite pastime when she was well was talking about other people. I get that. Still, I am cut from a different cloth, and I think she deserves respect and privacy, as all people do, and I know she would be mortified if she knew that people wanted to discuss what her disease is doing to her.

Part of it is this: There is a never a good update with Alzheimer’s. There is no hope. There is no, “Well, we hope this new treatment will work.” No silver lining, no light at the end of that tunnel. Ever. So when I am asked again and again, “How is your mom doing?” it feels like, “Tell me what new symptoms she is exhibiting.” New symptoms are the only update there is to give. She isn’t something for others to casually review and discuss. I had a conversation with someone recently who refused to pick up on the clear signs I was sending that said, “I do not want to talk about this. Please stop asking me questions.” I had to get help from a bystander to get the conversation train switched to new rails. By the end of it, I was shaking and nauseated. My mother is not a freak show, and she doesn’t deserve to have her new symptoms cataloged in detail to others. This means the only thing I can say is, “Well, she continues to decline.” Which is always met with silence. The silence feels like, “Wow, that sucks for her” and it feels like, “Tell me more.” So let’s just avoid the awkward conversation that shreds my heart and makes me feel like throwing up.

I’m sorry this post is so intense. I don’t know how to make this funny. There are a lot of things I can make funny. This isn’t one of them. Alzheimer’s is where funny goes to die. There isn’t a lot of funny this week, for reasons no one else needs to know. I apologize, too, for being so contrary. Kind people mean well when they ask about my mother. My brain gets that. It’s my stupid heart and gut that refuse to cooperate. So please know that I know you care. Know that I appreciate your care and your love and your support. And know that when I want to talk, I will talk. Please let me initiate that conversation.

I know a man who, years ago, was diagnosed with something pretty crummy. I asked him shortly after how he was doing, and my question was loaded. It wasn’t the passing-by how are you doing. It was the heavily weighted, fraught with concern, “How are you doing?” He paused, and said, “Fine.” His voice was tight and the answer was clipped. So I asked him if he wanted me to ask him any more how he was doing. He said no, he didn’t. In fact, he didn’t want anyone to ask him. He said, “I don’t want to be known as ‘the guy with ____.’ I just want to be me. I don’t want to talk about it.” I will never forget that, and I think he is brilliant for figuring it out so quickly.

I’m not saying that this tactic the two of us take, the silent treatment, is right for everyone. Some people find great solace in open and frequent communication. To each his own. Whatever floats her boat. What I am saying is, don’t be afraid to ask someone what she wants and needs in the way of shows of support. You will be far more helpful if you give your friend exactly what she needs instead of what you think she needs.

Thanks for bearing with me. I promise I will try to bring the funny back. I miss it.

#alzheimer's#blog#daily life#family#pca#personal essay#writing