Friday, August 1, 2014

What is Hospice?

Jason and I didn't really understand what hospice was until I was enrolled in it.  I want to give you all a picture of what being on hospice looks like so far.

Once a week, a hospice nurse comes to our house to check on me.  Rather than go see my doc, I now see this nurse.  Because I'm mobile and feeling pretty darn good still, we focus on my medications: how they are affecting me, whether they are working, what side effects I'm dealing with, etc.  Any changes to how I'm feeling are discussed, sitting on my couch.  She also  takes a few vitals, and then goes home.  She's with us about 45 min/week.  There is a nurse phone number we can call 24 hours/day to get answers or help.  That's it.

I'm not house-bound.  I am up and about mot of the day and usually squeeze in one nap each day. Some days I have more energy than others, but overall I'm doing well.  My digestive system seems to be calming down and getting into a rhythm again.  For about two weeks I've been dealing with swollen legs, from above the knee to the arch of my foot.  Also swelling in my abdomen.  That was uncomfortable.  We've tried out some meds and I seem to be getting close to normal.  We've been measuring my belly based on how many months pregnant I look.  Right now I look 3-4 months pregnant, but it's been as high as 6 in recent weeks.  Down to 3 right now and feeling good about it.  Trying to get out for a 15-minute walk each day if possible.

I'm off to bed for now.  Rory leaves for sleep-away camp the day after tomorrow, for the first time.  School starts in less than two weeks.  Busy world here.

Family has been visiting and so many thoughtful, generous people have helped us out and brought things we need.  I'll do another huge post about that at some point soon.  For now, just know we are humbled, feeling love, and shoving love right out the door behind all of you!!

Love, Jill

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