Fading

Mom’s light is fading. I think I’ve really known this for awhile now, but it became clear last night when I talked to her hospice nurse, Roxie. Roxie has always cut straight to the truth and I appreciate that about her. She has told me every little thing that I need to know about Mom’s health and she is literally an angel on earth, along with her partners that see to Mom when she’s not available. I have felt completely supported this whole season of Mom’s life and that goes a long way, my friends. It has made my life so much easier, and Mom’s so much more comfortable. I highly recommend hospice care to anyone facing a life-ending diagnosis, and the earlier the better.

For a few weeks now Mom has been mostly asleep. She’s been eating, but also aspirating her food. This means that she has trouble swallowing, and that a lot of her food is going into her lungs instead of her stomach. The signs of aspiration include a wet cough while eating, and afterwards, taking a long time to swallow, and runny eyes and nose while eating. The other day while I was there, her nose was running so bad while I tried to feed her and tears leaked from her eyes. She will open her eyes sometimes, but I’m not even sure she can still see. She does not focus on anything when her eyes are open. They mostly stay shut, even while eating. Her food has been modified to be like baby food – mashed up and mixed to a consistency that’s easier for her to swallow, but she is beginning to show a lack of interest in eating at all.

The body changes slowly with this disease. Mom doesn’t need a lot of calories. She’s completely immobile. But she does need protein to stay alive, and without eating it in her food, she isn’t getting enough. She has a sore on her bottom that isn’t healing, and won’t heal because she doesn’t have enough protein in her body to heal anything. This sore has been around a long time, and it doesn’t matter if they turn her from side to side, lay her down, sit her up or whatever – that sore isn’t going away.

She is retaining fluid. Her body can’t absorb fluid or expel it like it should. Which leads to random swelling. If she lays on her left side, then the left side of her body will be swollen, and same if she lays on her right side. Her hand has been swollen for a while now and we don’t know why, along with this hard swollen mass she has in her chest. X-rays were done and show nothing. Her body just can’t cope anymore. Lifting her by the arms has her grimacing but other than that she is very comfortable.

My brother will be here today. Perfect timing Roxie told me. Alarm bells ring and I know what that means. I talk to Tony, and I tell Baby Girl. She pulls a long face and says she wants to go see Granny with me today, but then she is quickly back to watching youtube videos and rejecting her bedtime. I believe she let go long ago, and while it will still be hard for her to say a final goodbye, it won’t cause any trauma like it did with Grandpa. As brave and strong as she is, she still won’t really talk about Grandpa. She says that’s her memories, and they’re special, and she doesn’t want to talk about him with anyone else. Especially not with her counselor, which is a shame but I can’t force her to do so. And while she love Granny dearly, she was forced to confront her mortality many months back.

I text my brother to let him know what we’ll be facing when he gets here. “I’ll be ready” he says. I know I won’t be.

I text some friends. They shower me with love and care.

She is fading. She will be made comfortable. Soon she’ll be dancing with my Dad in the Glory land. And I’ll truly have to live on without her.