Saturday, February 5, 2011

Routines or ruts

Matt found a demo scanner, so yesterday, my niece Cassidy scanned photos for hours and hours like a pro. A lot of them are upside down. We scanned six or more at a time sometimes. I'll try to do something more organized with them later, but my mom wanted the photos, and I wanted digital copies. So, after we scanned them, I returned her albums to her yesterday. You can see the pictures here. They date back more than 50 years.

This week was difficult in new ways from the previous weeks. This week, I hit a real wall in terms of depression and missing my family. I finally booked a flight home for tomorrow. I'll be home until next Saturday, unless I come back sooner, either because I feel pulled or because something happens.

My dad's stats are really good. The doctor and the nurse are really encouraged. But last Monday, we had a scare. Sunday night, my dad was having some trouble breathing. After he got up to go to the bathroom, he said he just wanted to lie in bed and breathe, and he was panting a bit. I asked him if he wanted to do an albuterol treatment, and he didn't. He then went back to sleep.

Monday morning, he said he needed his address book, a pencil, and a notebook. I handed him one of my moleskin notebooks with graph paper and he said, "Oh, I remember buying this." I didn't say anything because for all I know, he bought some just like it. He wrote for a bit, but mostly he slept and slept and slept. At lunch time, he got up to eat a bit and I asked him what he was writing. "My obituary."

I just looked at him, and he said, "Somebody's got to write it." True enough. But it scared me.

Matt and I were scared that Monday might be the day, so I called hospice and told them my concerns-- he was also worried because his abdomen was hardening on one side. The hospice doctor came, though, and my dad got up and was alert, lucid, had great stats, got up and walked around, and the doctor said he looked fantastic. The nurse came and said the same thing. One lung doesn't sound so great because it has fluid around it, but the doctor said that he could possibly keep doing this for a few months.

As great as that is for my dad, it's caused Matt and I to have to reassess a bit. I mean, we're on the ride now. We are committed. We are taking care of him, and that means we are living here in his house. But it's taken me this week to change my mindset from thinking that I was coming out for two or three weeks to two or three months. I'm going to start accepting work again. I started watching the first season of Dexter while doing the exercise bike for an hour every day, and I was so happy for something new to think about.

Matt and Heather have been getting their kids out every day. On Monday, we had to go up to the nursing home, so we arranged for our uncle and then the neighbors to stay with Dad. He was irritated later because we hadn't communicated with him, but I also think that he just doesn't like it when one of us isn't here. So, I have been staying home with him a lot. I don't really need to get out of the house every day-- I certainly don't when I'm at home. So, I haven't been itching to get out, but I just hit a wall of homesickness this week that put me in a slump. So, one day when Matt and Heather got home, I headed out to the garage and made phone calls. I turned on the space heater and found a pear cider. There was no bottle opener, so I tried using a lighter and I tried using pliers, but finally just went into the house to open it, then went back out to the garage. I was also trying to set up video messaging so I could SEE my friends and family. That helped a little bit.

I think I'm going to start trying to do some work again. With the high anxiety and drama of dealing with our mother daily mostly abated (we still have to take care of a lot of things and make a lot of phone calls), I think I can take on some work. I think it might be good for me to have that to focus on and think about. I try not to be on the computer when my dad is up and out because he's old school and doesn't like it. So, as a result, I often find myself in the recliner working on word search puzzles while he watches sports or the horribly violent Utah news.

Once I felt comfortable enough leaving my dad to book my ticket home, I also started a daily barrage of asking him, "Do you want to get out? Do you want to go for a ride? We could go out to eat or to a movie? Do you want to work on your memoirs?" Just because if there is going to be some more time, then I want him to start thinking about things he would still like to do. So far, he's only taken me up on writing the memoirs, which turned into writing his obituary on the computer.

But I understand that even though his oxygen levels are great and his heart rate and blood pressure and potassium levels are also great, cancer is raging through his system. He gets up and around a lot by himself, and even takes off his oxygen sometimes to go out to the garage to get an Ensure or go beyond its radius. Matt and I just sort of look at him in disbelief when he does this, but he doesn't do it for long, and there are lots of high-backed stools and couches for him to brace himself on. We are always on hand in case he should fall, which he hasn't yet. However, we have been virtually assured that it will happen.

It is hard enough to wake up every day and know that we're here because our father is dying. However, there is nothing worse than the feeling that we are just sitting around away from our lives, waiting for him to die. I don't want that for any of us-- I would prefer to focus on his living, to the extent that his fatigue allows. And that also includes Matt and I continuing to live, beginning with my visit home and then my taking on work. I have yarn out here and crochet hooks, but I haven't felt even the slightest urge to use it. I read books at night before I go to sleep sometimes, but mostly by 9 or 10pm, we are all so exhausted that the lights all go out. My dad usually goes to bed at 8 and he used to wake two or three times a night, but he is sleeping longer stretches now. I think the meds they were giving him to bring down the fluid in his abdomen have done most of their work, so his system isn't as pressed to get rid of it now. But I have learned that my medical guesswork is, apparently, pretty inaccurate so Matt and I sort of shrug now because we don't really know what's going on, and that's ok.

It is much easier to turn off my brain and not crochet and not work and just do word puzzles and just exist than to accept the fact that part of getting back to my life includes accepting that I am out here for the duration. When I go home tomorrow-- for which I am terribly excited-- I know I'll be anxious to return to my role as caregiver here. Matt will be out here juggling everything on his own. I worry about the weather, about my dad declining suddenly. However, mostly I feel a heaviness in my chest because I am going home to visit. I am returning to my life to visit it before I take up my life out here again. It has been over three weeks since I have seen my family. I get five days with them and then I have to return for another two and a half weeks (that seems to be my maximum limit) before I can visit my life again.

I find myself putting down this address as my home address because it's just easier and more accurate than my Missouri address. I have a daily routine: Get up at 7am, give Dad his morning medications (which means waking him, and that makes me feel mean); go back to sleep a bit; Matt and kids start to wake up, make coffee, so I get up. Matt puts away my bedding every morning. I get it out every night. At some point, I will use the exercise bike for an hour, but I have been hanging out in either my pajamas or my work out clothes. My dad sleeps all morning, then ensure and a breakfast bar for lunch. We do albuterol treatments after breakfast and after lunch, then usually before bed. He will read the paper and have a little cereal around 9am or so, a bit of magazines, watch some TV. He'll nap again. Then, afternoon meds, and he'll get up around 4 or 5 and watch the news or sports or both. Then watch more crap on TV til bedtime at 8 or so. Evening meds, including putting out three percodan to help him sleep. They are always gone by morning.  I'd say he sleeps 16 or more hours a day.

So, I have this routine now. But I hate all of it. I am at peace with towing the line and being here for my dad as long as he needs me-- but it is very difficult. It's difficult to be so homesick and still smile and be pleasant in tending to my dad and hanging out with him. I found myself retreating into my head this week because I was so unhappy that it was easier not to say anything at all than to try to pretend that I was OK. My dad is a pretty sharp guy and he has noticed. He's glad I'm going home for a week, because I know from his friends that he wants most of all not to be a burden to Matt and I-- or to anyone, really.

He misses my mother, and the guilt and sadness I have felt over this has just about cracked me open. My mom sent a Valentine to him with her sister, and my dad read it twice. He has been telling people that it's weird because she has been there for nearly every major event in his life. But not this.  Did we rush her out too soon? Does he want to visit her? Does he want her to visit? Does he want her back here? These are the things that keep me up in the middle of the night after my dad has gone to the bathroom and returned to his bed. I tell myself that missing her is not the same as wishing she were here. I tell myself that he has never really gotten to grieve for the person she used to be because she and her dementia have been so fully in his face all these years. I tell myself these things, but it doesn't help. She misses him too.

She is settling down and not so angry anymore, but she is aware that she should be here for these last days, and she is furious that we have robbed her of this. I am too. There are no good solutions. Having her here was impossible. But every decision we make these days hurts someone. The only thing we have control over is who to hurt and how much.

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