…the hospice nurse comes. We look forward to her visits for all sorts of reasons. First of all she is an interesting woman with a sense of humor that is a good match for L’s teasing. She has quickly become someone we trust to honestly answer our questions and troubleshoot any problems we may be having. This week she alerted us to the fact that we are coming to the end of the first certification period meaning she will need to show reason why L should continue on hospice. I have to bluntly say that the first thought that ran through my mind was that apparently the powers that be have set a time limit on how long it should take a person to die. But I do get it that–as with any system–there can be abuses. Still it was upsetting to realize that we might lose this support that has become so important in our lives. There is no question that L is failing albeit by small sometimes hard to measure increments. And frankly sometimes the reason I look forward to the nurse’s weekly visit is because L will explain what he’s experiencing in greater detail than he will say to me or others. Like today he spoke about how this morning brushing his teeth, etc. he became so weak–even with oxygen–that he wasn’t sure he was going to finish before he had to sit down. After the nurse left I got out a shower stool we had in storage (there’s already a built-in seat in the shower he uses) and set it against the wall just opposite the bathroom sink. That way he’ll have something to sit on should this kind of weakness continue–which obviously it will. So another small concession to this thing that is slowly killing him. And so it goes…week to week….
Yeah, I think there is.For us I think this stage could also be called the calm before the storm. We know what’s coming but we have been blessed with this time together.
L and I have now been on this journey for several months now and as each day unfolds with only minute changes to his condition I realize how very much I have changed (and for the better). Was it only last fall that I was whining about how we “had no future”? Feeling sorry for myself that we could not do things we had enjoyed in the past? Silently walking through life with a face that screamed “POOR ME”? And yet these days I feel such a calm comfort in the very fact that new days dawn and we are both still here–able to enjoy our life together, our friends and family, the things that have become our new routine. Faced with the opportunity to travel–an opportunity L has encouraged–I find that I am reluctant to do so. Why would I want to miss a single precious day that we might share?
One of the heartwarming–and frankly amazing–experiences L and I have had as we’ve traveled this road is the way friends have stepped up to support us in our journey. L is blessed to have an entire group of friends/buddies that date back to his elementary school days. Several of them still live close enough to visit often–weekly lunches, impromptu dinners, etc. But several live some distance away–far enough that a visit requires the expense of a flight and–since we cannot have people staying here right now–a hotel. And still they come. One special friend has called every single day since L was in the hospital and he has made the trip to visit now twice with plans for a third visit next month. When I drove him to his hotel tonight he indicated that he hopes to visit monthly for as long as this lasts. Amazing! But really not so much if you knew L. He inspires this kind of loyalty through the low-key way that he places the focus always on others rather than himself. If you ask him directly about how he’s doing–what he’s going through, etc. he will answer honestly and briefly and then turn the conversation back to you or other topics. I often think about how people use the phrase “after a long and courageous battle with…” — well, L is the poster child for that phrase. Through his refusal to allow his own anger and sadness and whatever else he has to be feeling color his relationships with others he has won for himself–and for me–this incredible safety net of support and caring that I know will continue to sustain me in the days after L is gone.