Last week was a long week. I had someone at the doctor everyday between Monday and Thursday; two of those appointments were at UPMC, an hour away.
Out of those two appointments, one of them lasted from 9:30 am until 6:30 pm, not including travel time. That was to see the cardiologist at UPMC and have a stress test and echocardiogram done. That day I left the house at 8:30 am, when I put the kids on the bus, and didn’t get home until 8:30 pm. I arranged for the kids to stay with a neighbor, and asked Mr. Hoagie to came home early to rescue them.
This week, I’m running Mom somewhere everyday Monday through Thursday. Today was the eye surgeon, tomorrow is a hair appointment, Wednesday is the dermatologist, and Thursday is Mom’s regular cardiologist.
Which leaves me no time to do any of my own errands. Yikes.
We are proceeding ahead with the kidney transplant for the time being. We’re collecting all the information the transplant team will need to determine whether Mom is eligible for a kidney transplant at UPMC.
We had a lovely heart-to-heart last week with Mom’s primary nurse at the kidney clinic, and she set us straight on some things:
First, the risks of having a transplant, in Mom’s case, are roughly equal to the risks of going on dialysis, so there’s no “right” answer there. Thirty percent of dialysis patients have a “negative outcome” (major infection, hospitalization, or death) during the first year of dialysis. Also, she explained that Mom’s best-case scenario involves staying the same, healthwise, as she is right now. I had always assumed that she would gain some health after a kidney transplant or after dialysis began. Guess not.
Secondly, the type of dialysis Mom thinks she wants isn’t necessarily the type she should get. She wants peritoneal dialysis, which can be done at home. This could be either overnight (which would require someone to help her hook up every night, unhook every morning, and be available to assist with alarms overnight), or during the day (four exchanges daily, every couple of hours, which would require someone to help her with that as well).
After discussing the logistics of peritoneal dialysis with the nurses, it became clear to me that I couldn’t be there everyday to help her, even if I wanted to. All it would take is one sick kid, or one sick ME, for that matter, and Mom would miss dialysis. And I have no backup for myself for the foreseeable future.
I feel pretty rotten that my schedule has such a huge impact on Mom’s health at this point. It seems so unfair.
On the other hand, though, she’s lucky to have a stay-at-home mom for a daughter who can help her as much as I have. And she made a lot of bad choices over the years when it came to her health, so I shouldn’t really have to take the brunt of the blame on the dialysis thing.
The last couple of weeks, I’ve had a really bad attitude about all of this. I thought we had dodged a bullet and decided against the transplant, then Mom flipflopped. Ever since, I’m annoyed that I have to take her to all of these appointments. No one asked ME if I was free to run her to heaven-knows-where for heaven-knows-how-long. I’m just expected to rearrange my life to do it.
I let Mom have it one day last week when we came back from an appointment, and she asked me to call and make three more appointments for her. She has a history of co-dependency, and that lady can’t do too much for herself lately, but dangit, she can use a TELEPHONE. I compromised by making two of the four calls she asked me to; she made the others herself a couple of days later.
I dropped her off today, thoroughly annoyed. I skipped 3 errands I had intended to run on the way home because I was out of patience. She asked me on the way home to pick up toilet paper and bread, and oh-by-the-way she needs SOMEONE to change her living room clock.
Guess that’d be me.