Hospice at Home

Kelly had her last dose of chemo last Tuesday.  She, daddy, and the doctors decided that even the Avastin, which has been working since early on in her treatment, isn't doing much good any more.  The priority now is to reduce symptoms as much as possible.

Hospice is a scary word, because for many people, it means intense medications to reduce intense pain.  Thankfully, that isn't what it means for Kelly.  She is taking some pain medication, but "hospice" is just the term for when the job of the medical community shifts from treating the disease to treating the symptoms.  Much is continuing on in the same way it has been, but without the need to go to the hospital for infusion every few weeks.  The "hospice" designation also means that we have more support from the VNA.

VNA has been great. They have been working with us and making sure PT, OT and other services can come to the house.  They've been making sure we have all the equipment we need to care for mom in the best way possible.  They've also been coming to the house to help mom with bathing, teach us how to use equipment, and generally check in.

On Monday, one of the VNA nurses came to teach us how to administer insulin.  A week ago, mom's bloodwork showed that she has very high blood sugar.  This isn't too surprising, since high blood sugar is often a side effect of long-term high-dose steroids.  It also explains some of why she has been so sleepy recently.  We got a glucometer (the thing diabetics use to test their blood sugar levels), and some high readings over the weekend mean that mom is going to need to start taking insulin to regulate her blood sugar.

We are learning about many things we never wanted to know about; transfers (the fancy medical term for picking up and moving mom), dosages and side effects of various medications, the support available through the VNA.

We are also being reminded of many good things.  Noah and Elizabeth have so much patience when mom asks something for the 15th time.  Mom still calls dad handsome and can't wait for him to be home from work.  Ben gives really good hugs.  Our community is there to do a load of laundry, or drop by with a bag of apples.  Our extended family takes time to come visit, hold mom's hand and distract her with anecdotes and old family photos.

We're finding humor in the strangest places.  We're crying a lot.  We're hugging a lot.  We're taking turns being tired.  We're taking turns being strong.  We're taking turns being patient.

We're taking it a day at a time.