Looking back on what was written 3 years ago, and being so scared of what we needed. And yet, what we needed back then was provided, and then some. I am pretty sure that this was Jim’s last bike ride. The weather, like now, was turning. It was dark again early in the evening, and in the morning on my runs. This remains the same. As I sit here in my kitchen, making mounds of kale slaw from my CSA, with enough leftover for kale chips, with it almost full dark at 6:30pm, I am in awe of the bounty that is my life.
Written October 11, 2010 9:37pm
Jim finally got out for a bike ride this weekend. He hadn’t ridden since the new seizure med was added to the mix. He took it easy. They drove to the top and did a loop where, if he fell, he would fall, but not off an embankment….I kept bugging him about the importance of beginner trails up there….So, Jim got out for a bike ride, which meant that I got a nice long weekend run and a chance to go out to breakfast with friends. Such a treat. At breakfast I was reminded that the google spread sheet still exists. Folks are standing by to help us with our need. Now….if I could just figure out what we need.
Jim’s cognitive processes continue to slowly and steadily decline. His short term memory is shot, and finding words is very difficult. He will ask me if I want some dessert, I will reply, “yes, a plum”….and he will forget by the time he gets into the kitchen. He no longer knows how to make oatmeal, or how to put a sandwich together. He thinks leftover squash is a good breakfast, and he can no longer tell breakfast from lunch nor Tuesday from Wednesday on his pill container. He can’t find his guitar, his back pack, his wallet. And every time he turns on the DVD/TV, it is a new adventure in electronics land.
So…what do we need?
I need people to realize that cooking for Jim and Jasper is usually something I enjoy. But to do so, I gotta get to the grocery store, and I have to invent the menu while I am there because there is no energy or time to come up with a list. There are also nights that I am wasted by the time dinner prep time comes around….and I never know when those nights are gonna be.
I need people to take Jim riding while he can. He needs the exercise, and I need the break. I need them to know that he cannot name the trails. I need them to know, every time, that it may be his last ride. His right side is getting weaker. He may fall. I need folks that are not scared of that.
I need people to schedule any time with Jim through me. He has difficulties processing time slots. It really isn’t possible to get up at 8, eat breakfast, spend time (it takes a lot longer now) getting ready, go for a ride, and then be back at 10 for a nurse appointment with a massage to follow at 11.
I need the hospice folks to understand that when Jim says that he is still having seizures but they are better…that this is the first I have heard about it. I can’t be with him 24/7, but given the plum scenario, I question how much of yesterday and the day before he remembers. He says his right leg is 80% better, but when I ask him if it hurts (his only complaint), he says “no, not at all”.
I need to exercise in the morning….early. Master’s swim alternating with 5:45 am runs are keeping me from going insane. I need the coach to understand that I can’t do relays….there is too much time on the deck to think about where I really should be instead of laughing and goofing off in the pool.
I need to be included in invitations and future plans….even if I know I can’t go. It lets me know you are thinking of me.
We need to be invited to do normal things. Jim can hike. Jim can eat. Jim can sit at a table. If the occasion warrants, he can even dance a bit….as long as it is not too late.
I need a solid night’s sleep. I also need to sleep with Jim. These are not compatible. No one can fix this. Juggling meds means he is either so deeply asleep that I am alarmed at his breathing, or he is getting up at 3 am and putting clothes on…
Jim is close to needing 24/7 monitoring, but he needs to feel independent. Jim needs to be treated as if he is normal, but everyone has to cut him some slack because his brain is anything but normal. Jim needs cheerful distraction from his impending doom, but he needs to come to peace with his impending death.
I look at the google spread sheet. All these wonderful people, all these wonderful gifts. And yet….I do not know what we need. I am scared of my need. I am scared that when all of this is over, that my need will yaw even wider, even bigger. At this point, Jim has nothing to lose, and I stand to lose everything. It scares me.
Tomorrow Greg and I close on a piece of property north of Moscow, that I dare say is one of the most beautiful spots on the Palouse. We embark on a journey of building something that is not mine, not his, but ours. It has water, it has trees, it has pasture land, it has views, it has secret spots and sacred spots (and quite possibly some wonderful ski slopes). I walked it yesterday at sunset and again was in awe of all that is my life. I, again, have everything I need, and then some. If you had told me 3 years ago I would be in this place right now, I would have said you were crazy. Now I know. I am the one who is crazy. Crazy in love. Crazy happy. My need did yaw. Wide. It was filled. It is full to overflowing.