When a person you love deeply is slipping away, it is a struggle to not feel like you are dying right along with them.
My mom was diagnosed with Alzheimer’s five years ago, at the age of 59. She and my dad decided the best way to keep me from shattering was to not tell me. They simply brushed off my confusion about the jumbled email Mom sent me on my 35th birthday and the nonsensical text messages that pinged me hours past her normal bedtime. When they finally shared her diagnosis, I was thrust into a dizzying world where I struggled to understand how to be a loving and supportive daughter to my nervous and disoriented mom and my terrified and heartbroken dad, while simultaneously keeping up with my 50-hour-per-week job and raising my three kids under 4.
As the reality of Mom’s condition sunk in, my life became a balance between wanting to know every detail of each misfiring neuron and being too scared to Google even the most basic information about Alzheimer’s Disease because the concept of prognosis speaks in percentages and odds. And she is not just a percentage of a person. She’s not 5% nor 1 in 10 nor “most” — she’s a complete woman, who raised me from the time she married my Dad when I was 12 years old. She is my whole mom, not a fraction nor a statistic, and there is nothing to be gained by fear.
What was more alarming to me since I found out that some sort of plaque has been creeping along the outside of my mom’s brain, stealing her away from me little by little, was the accidental ignorance with which my friends (and some family) approached me as they reached out in support.
I don’t fault the people in my life whose words have made me cry uncontrollably in the car the second I pulled away from their houses. I don’t think negatively of the family members who, while trying to dull the pain, have said things which have instead twisted the knife so violently that I’ve had to pretend to use the bathroom just to catch my breath. I’ve mastered the art of averting my gaze and changing the subject when I haven’t had the courage to say I couldn’t give them an update on my dying mother in a crowded kitchen at a child’s birthday party. But I owe the people in my life more than that. My friends would crawl across broken glass for me. My family would do anything to take this pain away. As badly as they want to support me, it’s not fair to any of us to pretend that my friends’ well-intentioned words aren’t sometimes making it harder for me to survive the death of my mother’s mind and then body.
So I wrote the list below, in hopes that someone who loves someone who loves someone with Alzheimer’s or non-Alzheimer’s dementia would read it and gain insight as to how to best support the person s/he loves.
1. Don’t ask a bunch of medical questions about my loved one’s condition.
That’s what Google is for. Many caregivers don’t want to know all the scary statistics and purposely don’t read up on all of the science behind the disease. When I’m asked a medical question that I don’t know the answer to, I feel guilty for not having done some imaginary due diligence. I feel like I could somehow save her life, if only I’d bother to learn the technical reason she can’t say simple words or remember our conversation from three minutes ago.
2. Don’t tell me about the latest miracle cure.
I’m borderline okay with you sending me an article about breakthrough discoveries of certain genes, but I’m not putting my faith in Dr. Oz, the essential oils you just started selling, nor the revolutionary purple root powder you saw in an ad at the back of Reader’s Digest.
3. Do tell me happy stories about my mom, things you love about her, or funny jokes she recently told you.
I’m clinging to normalcy right now. I’m basking in gratitude for her moments of lucidity. I’m longing to hold onto memories of her which bring me joy. Help me to believe that her legacy will be positive and beautiful and important.
4. Don’t “prove” to me that she is sick by telling me about the Alzheimer’s-y thing she did or said.
I know she probably didn’t recognize you even though she has met you ten times. If you’re telling me because you think it’s cute, it’s not. If you’re telling me because it made you sad, then I’m truly sorry you are hurting, but I’d really appreciate it if you could process your pain through discussion with a person who isn’t me.
5. Do give me a hug for no reason.
No-reason hugs are pretty awesome, and I can’t think of a time that I didn’t appreciate one I got.
6. Don’t ask me how Mom is doing when you just asked me five days ago.
I sometimes go a week or two without talking to her or my dad (for both simple and complicated reasons). If I gave you an update on Tuesday and you ask me again on Sunday, I feel guilty admitting that I haven’t spoken with her since the last time you asked. (Obviously if she were much sicker/closer to the end of her life, where her condition would constantly be changing, this wouldn’t apply. But Mom’s health is otherwise good, so there often isn’t a lot of measurable change from one week to the next.)
7. Do ask me, “How are you feeling?”
It’s a much more inviting and supportive question than “How are you?” and gives me low-key permission to answer you honestly with the state of my heart in that moment. I appreciate getting asked this by loved ones who know I’m in a grieved state about my mom because it also allows me to vent about work or my kids or the woman with 16 items in the express check-out line with whom I’m still irrationally angry. I sometimes feel selfish for being overwhelmed with the stressful or sad parts of my life which are difficult, separate from my Mom’s condition.
8. Don’t try to one-up me by comparing Alzheimer’s to any other disease.
All diseases suck in their own right. There is nothing comforting in “At least it’s not X, Y or Z.” And for the love of all things holy, please don’t point out anything that you perceive to be an “upside” of memory loss. There is literally nothing positive about it. Side Note: Don’t minimize her diagnosis by assuring me that you, too, misplace your keys or can’t remember people’s names. I’m 100% sure she has Alzheimer’s and you are not proving me wrong with your claim that her “forgetfulness” is common. (You are also only going to make me mad when you joke that you must have it too for the reasons listed above; if you are genuinely concerned, please make an appointment with your PCP.)
9. Do ask what I need.
One of my BFF’s, when someone is in pain asks, “What can I do to make you feel supported?” It may sound cheesy, but it’s genuinely the best thing you can ask a person who feels like they’re dying of a broken heart. Some days I might answer, “Nothing, I’m feeling okay in this moment.” Some days I might ask you to pick up my dry cleaning because between meeting my parents at a neurology appointment, buying Christmas gifts for my three kids’ teachers, and sitting in my car in a deserted parking lot, sobbing to LeAnne Rimes’ “Please Remember,” it’s the one errand I can’t pull off.
10. Go easy on me.
Maybe something I put in this list seemed insensitive or selfish. Maybe I was judgmental of someone when I shouldn’t have been. Maybe I snapped at you for something dumb. There are some days I am a pillar of strength and I’m seamlessly juggling the responsibilities and pain of my life. There are other days I give my kids Cinnamon Toast Crunch for lunch AND dinner plus four hours of screen time because I don’t have the strength to get out of bed. I’m doing my best to keep myself and my family alive while trying to be the best daughter I can be to a woman who, sometimes, looks right through me when I talk to her. The woman who cannot remember the names of my young children, who were born as she squeezed my hand and whispered encouragement. The woman who will soon not know my name when I hold her.
I’m going to hold her anyway. I’m going to love the hell out of her, not until she takes her last breath, but until I take mine.
And while I struggle to figure out how to be the daughter she needs (because I will never be as perfect as the daughter she deserves), I love deeply the friends and family who are holding me up as I hold her.