Adjusting to Changes

The changes we’ve noticed in balance and memory are most likely related to tumor growth, not medication. Our hospice nurse explained it to us and it was pretty sobering. But we immediately set about making the necessary adjustments. Because of the potential for mistakes in medication, someone will always be present with Susan when she takes her doses. She is also using the walker more inside the house. A cane and the arm of another person continue to be a must for walking anywhere else. As mentioned earlier, we’ve had grab bars installed in the bathrooms – a big help.

The biggest implication of these latest changes was on her upcoming trip to Chicagoland to visit her family. She had wanted to go alone, but that’s not going to be possible. Neither the nurse nor I could envision that scenario, and Susan agreed. So Jon will accompany her and she’ll go as soon as possible, which turns out to be next week – a few days earlier than planned. Jon is a great help and will be an excellent traveling companion. He’s been doing most of the transportation duties and helps Susan remember her cane and her purse, along with anything that she’s lost track of.

Patrick got back from the training in North Carolina and has a couple of weeks before he starts camp. So he’ll get to spend some quality time with Susan this week and he and I can be bachelors together next week.

Busy, busy, busy

So much for weekly blog updates! Our lives have been pretty busy lately. Figuring out the slide show on this blog is taking some doing – a reminder that being a techie does not come naturally for my age group!

Patrick is home from school and is jumping into the family routine. He’s in North Carolina this week for a high adventure trek training prior to his scout camp job this summer. But he has met the main players in the hospice team and is getting acclimated to the drill.

Susan is still pretty-much pain-free; balance continues to be an issue – more some days than others. Our house got evaluated by an occupational therapist today and grab bars in the shower are in the works. Her meds have been adjusted slightly. Her main issue for the last couple of days has been overwhelming sleepiness. We’re not sure what that’s about, but we’ll take it up with the hospice nurse, Jennifer, when we next meet with her. She is otherwise doing pretty well, and simplifying her life is on the top of the agenda. She’s given up beading, and several good friends have helped her clean up the room she’d been using as a jewelry workshop. She’s looking forward to her trip to Chicagoland to visit her family in early June.

Meanwhile, Jon, Patrick, and I have been hard at work with a landscaping project in the backyard – actually two projects. Since simplification is the theme, this started out as a way to automatically water the flower pots that are usually arranged around the patio, by tapping into the sprinkler system. That developed into an expansion of the patio into a terraced rock garden with perimeter stone, which involved sod removal, and lots of sore muscles (at least mine were – J & P don’t seem to be affected). Then we decided it would be nice to have a permanent seating area in the backyard – free of grass to be mowed, and leveled for comfort. That idea became a small patio-like area under a tree, terraced into a hill, and filled with the same rock we used in the other project – two tons of it altogether. It was a lot of work, but it’s really nice. All the improvements provide an even more serene place to be for Susan and the rest of us. A Mother’s Day chaise lounge and new, larger fountain contribute to the scene. Susan also got a tabletop fountain from Jon and a digital picture frame from Patrick, as well as upgraded digital TV service that includes different music channels. We’re ready for summer!

First week in hospice

I think we've met everyone on the team we're going to meet for a while. In the early going, there are lots of forms to sign, decisions to make, people to tell, etc. It has been a really stressful week. We especially like the nurse case manager, Jennifer, and the chaplin, Bob. One of the biggest challenges this week was getting used to the idea that after three years of anticipating this, we're finally here.

We chose the VNA Hospice-At-Home because Susan's oncologist is the medical director and he'll get to stay in the loop with her case. They now know everything about her history, her meds, her wishes, etc. She has planned a trip back to Chicagoland to visit family in early June. She wants and needs to go alone. So there will be logistics to work out depending on her needs at that time -- minimally wheelchair service in the airports and notifying airline staff that she's a hospice patient with special wishes.

Meanwhile, we'll try to settle into a routine of getting a couple of visits a week to check on things. Susan has given up driving altogether because she is on some heavy duty pain meds and is at risk for seizures.

Jon is back in Denver indefinitely, living with us and will do part-time flexible work that can accommodate whatever the household will need. I have begun to slow down the speeding locomotive that is my work schedule so that I too can be more flexible. I also need to build in some time for myself and figure out how best to use it for my own respite.

So we're making adjustments, both tangible and emotional. Patrick will be done with finals on Tuesday and will drive home some time after that. We're looking forward to seeing him and plugging him into our new world.