Days

I think a lot of people are wondering what our days are looking like.

No, E. is not incoherent and sleeping the day away.  No, E. is not sitting on the couch entertaining guests and having jovial conversations.

Let's look at today as a typical day.  E. awoke about 7:30.  He awoke with immediate nausea and pain.  I helped him get out of his hospital bed and using his walker, he slowly made his way to the bathroom (the master bathroom connected to the master bedroom).  I walked behind him with my hands on his hips to steady him.  Instead of heading to the toilet, he went straight to the sink, where he started throwing up.  When it looked like he was done, I had a Zofran (anti-nausea medication) ready.  I had him sit down and wait for things to settle.  It did no good.  He was throwing up again a few minutes later.  We eventually made our way to the toilet, but sitting and standing is extremely painful.  He wanted to shower, but since I didn't know the protocol with the new drain tube, I put a call into the Hospice service.  Because it was going to be a few minutes before a nurse called me back, I gave him a sponge bath in the meantime.  His pain level was obviously rising, so I gave him an Oxycodone (probably a poor choice with the established nausea).  Minutes later, he was throwing up again.  I put some lotion on his extremely dry skin, and got him dressed and back into bed, where he was shivering with cold, pain and nausea.  He managed to drink a few sips of water.

Typically, we have a routine of morning meds.  There are a variety of pills, as well as a couple of liquid medications E. takes.  I must also check his blood sugar and give him his insulin.  This morning though, we skipped his entire morning medication routine because he was feeling that poorly.  He knew that nothing would stay down.  He didn't feel like eating anything so we didn't attempt any food.  One of the girls stayed with him while I ran Peanut to preschool.

He dozed on and off, but awoke now and again.  We discussed funny things like random stuff Peanut blurts out these days and not-so-funny things like bank accounts and house maintenance.  I read him messages and texts from friends and relayed phone calls I have received.  He talked about people he still needed to chat with.  He made a few phone calls throughout the day.  Please don't take it personal if you don't get a phone call.  It is totally hit and miss.  It's a timing thing.  When some people call, it just so happens that they catch him at the "right" time that he's not in pain, he's not nauseous, he's not asleep, and he's in the right mood.  The emotional stuff is as painful, if not more so, than the physical stuff.

For lunch, he had a craving for Speedy Burrito, so off the girls ran.  In the meantime, the Hospice nurse arrived.  His blood pressure and oxygen saturation rate still looked good.  He's developing some thrush in his mouth, so they'll send over a prescription for that.  They also delivered a "rescue kit" of prescriptions yesterday to help deal with nausea, pain and constipation, so the nurse went over all of them with us.  It is really reassuring to know how concerned they are about his comfort.  We all agreed that E. needs to start the day with an anti-nausea med and a pain med before he even gets out of bed.  That will hopefully prevent a morning like we had today.  I received instructions on how to cover his drain tube (Pleurx catheter is the proper name) so E. can shower if he wants to now.  The girls returned with E.'s burrito and taco, and E. did manage to take a few bites of the burrito.  Another Hospice nurse will come tomorrow to drain the fluid off his abdomen and teach me how.  A Hospice social worker will also be visiting tomorrow.

E. took an afternoon nap (as did I, as I have some sort of crud), and had a few emotional phone calls and other moments.  He had the t.v. on, but I'm not sure he actively watched any of it.  By 6:00, he is pretty much done for the day.  I give him his evening meds, check his blood sugar and give him his insulin.  I also changed out his pain patch tonight.  He's been sleeping pretty well through the night (I hope I didn't just jinx us), typically only waking once or twice if at all.

Today, he spent the whole day in bed, but yesterday, he spent a good chunk of the day, in the recliner next to the bed.  He doesn't leave the bedroom.  Every once in awhile, he talks of wanting to go somewhere or do something, but while his mind wants to, his body does not cooperate.  While he can walk pretty good with his walker, he cannot get out of bed on his own and I feel more comfortable if someone is walking beside him in case he stumbles.  Sometimes he asks the same questions repeatedly, but for the most part, he is still very coherent.  I am told that with the cancer spread in the liver, there may be increased mental confusion.

Our days are spent at home.  The other boys pop their heads in and out.  For as little as we do, it is draining.  It is hard to explain.  I have no idea why I am so tired.  I had previously said that watching your loved one in pain is agonizing.  I was talking about physical pain.  But watching them in emotional pain is just as agonizing.  It rips my heart out.  And there is nothing I can do about it.