|Look at this magical delight of comfort food!|
I need to update here because today I ignored over 20 family and friends who were texting me for updates. Apologies. In an effort to not type the same thing for everyone, I'm trying to be a bit more open here. I figure if you're reading this, you know my family well enough. My last Caring Bridge post was a little more optimistic than it perhaps should have been. I knew Mom would read it, and she wants to be around for as long as possible.
Patsy's not doing great. Hospice has been wonderful with helping get her pain medicine under control, but she has declined significantly. Beginning on Friday morning (8/24), she started sleeping most of the day as well as the night. She's still restless, so none of it is great sleep. Sometimes she is difficult to rouse, and she requires 24hr supervision.
The supervision is mostly for safety reasons -- sometimes she gets confused (or more likely stubborn) and forgets that she cannot walk across the room alone. Truthfully, she cannot get out of bed without help. I have started sleeping with her at nights to make sure she doesn't try to walk to the bathroom alone. I caught her trying to do that on Friday morning, but she was struggling from lack of strength. The nurse said not to allow it. The big fear is a fall. If she fell, we'd likely have to move her to the hospital. Her biggest wish in discussing her death with Hospice workers is to die at home. I'm not sure if she's reading this, but I suspect she is not, which is something of a relief. She's peaceful, for the most part, but gets frustrated when she knows she's confused.
She is getting plenty of love from us -- snuggles in this wonderful bed have been the best and, I hope, comforting. As I'm writing this, Angus is curled up next to Mom, and I'm on the other side of him. It's a sad time, but we are trying to keep it special and real.
Dad's had a rough week too, though he may not want me to be telling you about it. I'll be succinct and not talk about feelings because Dad and I don't talk about feelings -- that's David's job. I do feel obliged to share because the support of friends is what's gotten us through this so far. I think we live too far apart from each other in this country, and it's harder to help and offer support. If only we could open the Lakeside Drive commune!
Anyway, I digress. Dad was incredible during 5 weeks of daily radiation and 1x week chemo, but this past week the side effects of radiation have finally caught up with him. Today he seemed better (he went to Lakeside for a bit!), but his mouth has been clearly painful, making drinking and eating excruciating since Monday evening. He's also been really tired and is overdue to catch up on some naps so his body can fight cancer instead of waiting on Patsy hand and foot (which he has -- utterly). I've been staying here at night with Mom since Friday, so Dad can, hopefully, get a full night's sleep without having to offer physical assistance multiple times a night.
He has an appointment on Friday with an ENT surgeon at Brown Cancer Center in Louisville to discuss getting new scans and timing for the surgery, which is apparently a delicate balance.
I'm learning how to accept help -- and maybe even learning how to ask for it.
I'm going to set up some short shifts for close friends to sign up for if you are available and comfortable sitting with Mom -- even if she's asleep and you're just staring at her pretty face or reading a book. The times can be flexible, and I can try to cover as much of the day as is possible. I still need to work (being self-employed, i have no paid time off), and i've got the kids, and my dad could use a break to take a shower or a nap. I'm still planning on doing all of the overnights. We just want to make sure Mom has physical support if she wants to sit up.