The sky started rumbling. A storm was coming in from the north. There was wind, thunder and lightening. I hoped it would rain. But it never rains anymore. Then I thought about my mom. I wondered if God was coming for her and this was his grand entrance. As I stood over my kitchen sink washing baby bottles, I decided to go sit with her — just in case. It was 7:45 p.m.
My mom was sound asleep. She hadn’t eaten dinner. She hasn’t eaten in days, really. Earlier that day, I gave her a few drops of water, which was a mistake. She started choking. I got up from my chair, ran out and grabbed a nurse. They used a swab to try and absorb the remaining water. It was upsetting to watch, but, then, that’s what happens when you’re dying, I suppose. You lose your ability to swallow. I still can’t believe this is happening. Everyone says it is. I keep asking the nurses if they think she’s dying … just waiting for the one nurse to say, “Nope. She’s definitely going to bounce back from this, too.”
Now, here I was, back at her bedside. I needed to talk to my mom … really talk to her. Something I have had a hard time doing … she has been mostly unresponsive for a very long time. How do you talk to a body? A body that rarely emotes, except to scream out; a body that takes and is incapable of giving because of a wretched disease. Eventually, you just stop. The silence is more comfortable. It’s safer. The words felt artificial after a while.
I don’t know why I’m having such a tough time accepting that this is (probably) the end of our story. I think I’ve been very realistic about our entire journey. Maybe too realistic, in fact. I’ve had moments where I’d step back and wonder, “am I too detached from what’s happening to my mother?” Have I shut off certain emotions in the name of self-preservation? I suppose, at the end of the day, it doesn’t matter. None of it matters. The one thing I can accept is that we’re all going to die. That’s how every story ends. And yet, as a species, we have an incredible knack for wasting every precious second on petty bullshit … bullshit that no one will care about in 5, 10, 20, 100 years.
Or even right this second.
And who wants their headstone to read: Here lies YOU. You wasted your life being angry, being sad, being resentful, being vindictive, being ridiculous, and now you are dead. The end.
So here I am waiting. And learning. And remembering. I am (probably) watching death hover over my mother. In some ways, it’s a blessing. A blessing that soon she’ll (probably) be at peace. And a blessing for me … it serves as a reminder that we have this one life, and anything can happen. Death is democratic. So is dementia. It doesn’t care if you’re white or black, a Democrat or a Republican. It doesn’t care if you’re Jewish or Muslim or Christian. It just doesn’t care. That’s not its job.
And now I need two Advil.
Feet. Have you looked at the feet? In my limited experience in two deaths with Hospice care the feet tell you it’s really happening. They die first, they look dead, they don’t move or react and the color looks dark grey and dark purple, blackish on the inside and very stiff. I think our culture has a adversarial relationship with death. It is a very important part of our life cycle. For me it’s the suffering I hate.
Thank you for sharing from your heart: I was there 3 yrs ago and I do want to say to you: Talk, just talk to her NOW…..you really don’t need a response…..when I realized where my Mom was (at the end of her journey), I asked the Nurses to give me some time alone with Mom….and then it all came out….not just from my heart or my mind but from my gut and my soul…….I cant tell what she heard or understood…..BUT I understood: she gave me life, she loved me and I needed to talk to her…..we know that hearing is the last sense to go…..so, go on……We had Hospice involved that day and she passed 3 days later….I am glad “we” had that talk….One day at a time, one hour at a time, one minute at a time…..peace for your Mom.
This must be so hard! I cannot imagine how it feels to WAIT for the end to come, something that will be a relief for both you and for your mom, but is so final that there is no going back. I follow you because I will be in your shoes soon and I admire your grace and dedication. Your posts have helped me more than you’ll ever know. I hope the responses and comments from your readers give you strength and support. Many people are thinking about you both as you experience this major event in your lives.
God bless you Kathy.. This has been a long heart wrenching journey for both you and your Mom. I want to thank you for helping me get through my journey with my Mom. My Mom has frontotemporal
Dementia and I took care of her at home until I just couldn’t keep her home anymore for safety reasons,we are now entering 7 years of this cruel disease.i stumbled upon your blog about six months ago and it honestly gave me strength to cope with all that comes along with this devastating disease.