So it goes on….
Up and down like a roller coaster. Each day of the week, as Wolf’s caregivers exchange our impressions in the visiting area as we change shifts, we realize that we have witnessed a wide array of emotions coming from Wolf. We also get a variety of stories from the nurses and doctors, so confusion reigns.
I’ve spent a lot of time watching Wolf sleep this week. With luck, he is snug in his bed, curled up, comfortable. These days they’ve been putting him in the wheelchair for as many hours – and more – than he can handle. We know it is a good thing to not just be lying in bed (after a month of it) but it is painful to watch him support himself for hours in that uncomfortable chair. I know that I can’t sit happily in a chair for two hours, that alone seven as happens with Wolf. He is already weak and tired, and the energy it takes to stay upright with no head support is more than he can muster. He has no choice, and so his head flops forward, his back hurts and even his stomach is sore from the effort. We must wait for a nurse to come and rescue him and get him back in his bed. At least we can wheel him outside for fresh air, a bit of sunshine, and to hear the birds singing.
He is now without feeding tube – a nasty little situation he took care of himself one night. After a week of being told, “Eat, Wolf, eat, and they will take out the tube” – and eating even though he had no great desire for it – they came and changed the feeding tube because it was clogged. That night, I imagine in protest over the continuation of the intrusive contraption despite our assurances, he pulled it out. Fortunately they won’t replace it as long as he keeps eating, nor did they tie his hands up again to punish him (protect him?)
So now he is eating. Yesterday he moved on from purees and soups to “real food”. Due to the problem of being in the chair for hours zapping his energy (and apparently a bad night’s sleep) he could barely stay awake to eat the food. The other people in the room – a funny confused little man and a woman with Alzheimer’s whose son spends the day with her – had a lesson in English as I repeated, loudly, “Wake up, Wolf. Chew. Swallow. Can you take some more?” trying to get as much of the food into him as possible so that they will not replace the feeding tube or switch back to the purees that he is now thoroughly tired of. The woman’s son kept repeating “Wake! Chew! Swallow!” The man and the woman just seemed more confused…
Wolf’s daughter Melody took some cantaloupe in yesterday since this has been his biggest request these days. I got in a lot of trouble a couple weeks ago when I brought some fruit and gave it to him without asking. But Melody did it right and asked the nurses and was able to give him some. Once again, he was sleeping so soundly it was hard to get the food into him, but they managed.
So some days he is very cheerful, positive, loving and talkative – actually perhaps a little too talkative. Others, like yesterday, he is cranky and angry and restless to get out of there. We don’t know day for day, hour for hour, how we will find Wolf. There are many emotions that come out of him. We recognize that he is entitled to be frustrated and angry and it is often hard to understand what has set him off.
Melody told me that when the nurse came in and took his blood sugar last night, that it was dangerously low. They hooked up the IV and gave him glucose. That may explain the heavy sleeping and the wide swing of emotions. They did start him this week on a new anti-depressant, and we are already concerned that it is showing signs of leading him back to a manic state.
Ai yi yi. As you can read, the path we are on is as convoluted as the trail between Monteverde and Poco Sol (I think I just stole a line out of our book). He is in good hands at the hospital, but we are hoping that we can take him back to Monteverde real soon. To borrow another line out of the book, all trails lead to home.