The food therapist said I need to watch that mindless eating. I just laughed and said it was VERY mindful! I made a point of driving to Cub and finding that box of Lucky Charms and really enjoying sitting down and eating it. It was a well thought out plan.
I dislike everything. Every single thing. I can't find anything I really like. There are things I love like Luther. My family. So I'm not looking to jump off a bridge. I've felt that way before and this doesn't feel like that. It's almost worse. This feels endless.
What to do? Just go for a walk? Get over myself? Stop whining? Start a grateful journal? Eat an apple?
I started anti-depressants. Hopefully that will help. I'm not sure I'll stick with the eating disorder thing. It just feels like too much therapy. Even the food therapist agreed it was a lot of analyzing. She made the observation I might feel a little "prickly" with all this reflection. I've been a dang cactus. Prickly, angry, annoyed.
This is very unhelpful for Luther. I think he gets scared to ask me for help. I suppose if I keep rolling my eyes when he asks me for stuff...
It's hard though, to know I've quit my job to be his caregiver and he doesn't want me to care for him. It's minimal care. Help him pee. Light his cigarette. Feed him. Put on his blanket. That's about it.
What to do? Put on my sexy cheerleader outfit and get all "yay rah rah?" (I actually don't own one) Insist on caregiving - just set the schedule and do it? How do I get him out of the house and interested in things? Do I invite people here? Half the time he won't talk.
I think it's just one foot in front of the other. Just keep plodding along. Let things happen. What else is there to do?
UPDATE - THE NEXT DAY MONDAY 11/2 - 9 AM
I went for a walk this morning, still thinking about this post - how can I change things? We were up at 3:30 this morning (went to bed at midnight) - then again at 6 a.m. when he's up for good. I make him coffee, he smokes :( :( :( then I try to go back to bed but it never works -- took the dog for walk.
Around 8, I climbed back in to bed, thought I'd try to sleep. At about 7:30, asked Luther if he wanted to eat, need another cup of coffee? No, no, he's fine. Guess what? At 8:10, as I was falling asleep, he wanted to eat, wanted that extra cup of coffee.
People will say, oh I can relate - it's like having a toddler. No sleep, You're on their schedule. But you know what? Your toddler has a future. You feel hopeful, even through your sleep deprived crabbiness, that your kid will grow up. I feel hopeless.
Sure, my goal each day is to give Luther some level of happiness. Make him comfortable. I totally get that he's alive now. Live for today. Figure out a way to see a movie, hold hands. You know what he wanted to do the other day? Shop for funeral homes.
The changes are subtle but they alter us tremendously. I asked him if he could stop walking, would he? He said yes. But the alternative of me using this lift with a sling to lug him out of his chair just to pee or smoke seems worse.
This is a hoyer lift. We have it in our house now, part of the furniture, I guess.
I took a selfie of me on Halloween and if you look closely, you can see the lift and his wheelchair in the background. I doubt anyone else noticed but it made me realize our slice of my parent's home is riddled with medical equipment.
Anyways - this is the lift. I don't wear a white uniform. I think you can see why Luther keeps trying to put one shaky foot in front of the other to get to the bathroom.
There's actually a slit up the butt/backside so you can just do your business out the back once you're lowered on to the toilet.
I haven't really made a clear pathway from his bed to his chair to the bathroom quite yet. We need to practice using the lift before it's an emergency. We both keep putting it off, as usual.
I'd love to say a new day = a new attitude. As I was walking the dog, I thought - I'm grateful it's really nice out today.
That's all I could muster. I know it seems selfish. I know. I know. I know. That almost makes this sadness worse. If I could live in blissful ignorance - would that be better? I get that this is about Luther, not me. He's the one dying. I am so thankful we're here together. Saying all of this out loud makes me feel so selfish and weak -- tired and defeated at times. But we have a long road ahead of us. I have to figure out how to deal with these feelings.
I'm supposed to muster up the energy to do stuff. Power through. Just do it. Get it done.
I will. Eventually, I do.
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