My heart is heavy. My mind is scrambled. My energy wanes day to day. My world is spinning out of control with a speed and slowness that are confusing and indecipherable.
Jim is still progressing. Of course he is. He has a disease with no survivors. This day and this hurt was promised to us years ago. But to be a front row spectator to his absence while being present is perfect torture. I would prefer to be waterboarded while having my eyelashes plucked out one at a time.
He no longer stands up straight. His posture is that of a 95 year old with extremely poor mien, including the shuffling, the humped shoulders and the constant stare at the floor or something no one else can see.
He drools. A lot. Sometimes.
He mumbles. He says a word. He mumbles more. He is silent.
He feeds himself. He needs help being fed.
He is down to 160 pounds.
He has had 4 Urinary Tract Infections in just over two months. He has had a catheter in for that same amount of time.
He smiles. He picks up invisible things off the floor and puts them in his pocket or hands them to me.
He walks away.
He falls asleep while sitting in a chair or carrying on a “conversation”.
He can’t read. He can’t write.
He has had a few days of not knowing who I am.
He often doesn’t know the children’s names, but does usually recognize them.
He loves company but walks away a few minutes after you arrive.
He doesn’t watch TV.
He will still kick a ball or try to shoot some baskets. On the right day.
He cannot go to the bathroom by himself.
He cannot tell us if something is hurting.
He cannot get dressed by himself.
He still hugs me and kisses me. He still lights up when I arrive to visit him. And then sometimes he doesn’t.
He lives each day in his own world and I try to visit and understand but I only end up crying in the car on the way home or late at night when I search through old photos trying to put together a photo album for him.
I show up to my life half heartedly because the other half of my heart and my life has left me stranded midway and so part of my chest remains empty.
There are times I look at him and wish he would die. I see him so unlike the Jim who took so much pride in himself with his straight back, quick wit, and ironed and clean clothes. He would never walk around with pants on inside out or food spilled down his shirt or drool falling down his chin onto the floor. He would never stand for someone else wiping him clean. Then I think about him actually dying and I don’t want that either. I want another conversation. I want another date night. I want him to play in the backyard with the kids or to cheer them on at a game. I want him to walk through the front door, turning the key himself, walking in with the smile I have loved for many years. I want him to not be where he is or who he is now, but I can’t have the original back either. It is a waiting game. We know the ending, but not the timeframe or exactly how bad it will get. Every time I think we are at a place so much harder than before, it gets even worse.
Each time I visit him, I am exhausted, depressed, lonely, sad and relieved he is at a place that takes care of him so much better than I ever could.
I am trying to keep our regular traditions up for the kids and I suppose for my own sanity. Moving forward. We got our tree at the same tree farm. But instead of the typical lights, the three of us wanted different things: Frances wanted white lights, Brad wanted multi-colored and I liked the ones we have had the past couple of years with red, green and white. So, I did what any stable Mom would do, I said “screw it” or something along those lines and put one strand of each on the tree. I can pretty much guarantee you there isn’t another tree lit like ours and I can also guarantee it won’t win any “best” awards. But I really don’t care. I actually kind of like it. Sort of a symbol of the way I feel: discombobulated and completely unorthodox.
While the kids and I were listening to Christmas music and putting ornaments on our unique tree, Brad stopped, sat on the couch, and just looked at the tree. When I asked him if he was ok, his reply: “We should have brought Dad home to help with the tree. He should be here.” And he was right. He should be here. He should be helping with the decorations and sipping eggnog and sitting with me after the kids go to bed, silently leaning into each other as we lay together on the couch in the glow of the lights. He should be running to the store for last minute ingredients and attending band concerts and helping with homework and sneaking around to hide the mistletoe so I will end up standing under it so he could grab a kiss. He should be watching A Christmas Story with us for the 100th time and laughing out loud in that way he did, where he almost couldn’t stop. He should be here, with us, but that will never be again and it hurts. Like Hell. But I can’t wallow in this immeasurable grief because I have to get up, do the laundry, fix some dinner, go grocery shopping, visit Jim, follow up with doctor appointments, put up the decorations, get all the kids gifts together (plus others on our lists) and somewhere in there get a shower and act like I’m ok so my kids can have a decent holiday since their summer and fall have pretty much revolved around one medical emergency after another with their Dad. After all, this isn’t about me. This is about a man who is leaving his children when he desperately doesn’t want to. It is about two amazing kids losing their father. It is about moving ahead while searching for the right way to let go of the past and hold on to it at the same time.