Wednesday, January 27, 2010

My Dad

It doesn't seem like it's been over two weeks since I last posted. My days and weeks are so filled, they are flying by. Yet, in some ways it feels like time is moving slowly. Makes no sense, does it? I think it's because my days are packed solid, but they are not my own anymore.

I work, I take care of kids, I take care of household stuff (the best I can anyway), and I take care of my dad. I finally ran/walked yesterday for 30 minutes (I have lost so much strength and endurance and can barely run 5 minutes at a time now), but it had been 8 days since my last short run. We did get a treadmill a couple weeks ago, which is awesome. I've only used it twice, but at least it's there. I wouldn't have gotten in 30 minutes yesterday without it.

My weight is holding steady at 152-ish pounds. I am squishy and definitely not ready for spring clothing, but at least I'm not bursting my seams any longer.

I had strep throat last week & was completely down for one whole day. Thank God for antibiotics. I was back at it in about 36 hours.

My dad takes up a lot of my time now, at least 2 days a week when I'm staying with him (including Saturdays). And I spend at least two to three hours a day on phone calls or paperwork for him. He's been approved for one of the highest VA benefit levels (as of Monday) and we are getting a lot of help from the VA (finally--we applied in September). We are so blessed that we can take care of him without having to worry about how to pay for it. My sister has exhausted her FMLA and is now on personal leave from her job with Toyota. Since my Dad worked at Toyota, too, they are very accommodating to my sister.

He continues to decline, but slowly. He can barely lift himself from his wheelchair now. He insists on getting himself off his chair & onto the toilet (which is a slow, painful, difficult process), because he has a little strength left, but that's not going to last much longer. He already has a catheter, though, so his bathroom trips are usually only once a day. We are getting a power Hoyer lift from the VA soon so we can lift him when he can't any longer. He can't feed himself. He can still swallow food but liquids and pills are getting to be impossible. He's now on liquid lortab & my sister is opening his capsules and giving to him with food. It won't be long before he's on a feeding tube.

We are getting a hospital bed from the VA on Friday & it is going in the family room. Dad won't like it. He doesn't even sleep in a bed. He spends all of his time in his scooter wheelchair. Literally, almost 24 hours a day in that chair. Thankfully he is getting a real wheelchair in a couple weeks from the VA. This one will recline so he can put his feet up. His body is horribly swollen even though he's on two water pills, and his belly is distended (he was already a big guy, but 4 -5 months of not using his muscles is taking it's toll).

He needs care 24/7. We do not have anyone but family caring for him. My sister stays with him, my cousin and two uncles stay with him, my sister's best friend helps out, I stay with him, even my mom and her husband are spending time there when one of us can't. But it's getting hard to keep all the hours covered. I can feel the tension when people feel like they are spending too much time there. It's really hard. My dad is so stubborn, he doesn't even want a stranger (as in, a VA-paid-for Visiting Nurse person) to come help out 3 hours a day to cook and clean, even with my sister there with him. There is one visiting nurse girl that went to school with my sister who can come twice a week, but my dad doesn't want anyone else but her. So for now, we have to give up 3 days a week of help. My sister "handles" my dad and she has to bear the brunt of his displeasure, so if she says it's OK then she just gets 2 days a week. Personally it ticks me off that he can't be flexible, but he has nothing left--literally, can do nothing himself any longer--so him exerting his will is all he's got left, I guess.

His speech is also almost completely gone. When he's not tired he is easier to understand. But last weekend when I was leaving around 7 p.m., I couldn't make out anything. It's extremely frustrating for everyone. He has a talking computer with a keyboard on loan from the MDA, and he can type with a pencil slowly, but he won't use it. I don't understand his choices. We are waiting to see if he is going to get a communication device with eye-gaze speech, but they are very expensive and we don't know if medicare or his insurance or the VA will pay for it. Who knows if he'll even use it.

It's very hard. It hit me the other day the kinds of things I used to worry about and spend my time on before Dad got ALS. A lot of it seems silly now. Some things, like running and training for races, I miss terribly. I know this is temporary, and I know that I will not regret spending time with and for my Dad after this is all over. It still doesn't make life any easier right now. Thankfully my husband is supportive. My mom is amazing. My sister is a saint. And my Dad's brothers are there for him like they've never been before.

I think we are all in mourning now, before he's even gone. It's unbelievably hard to watch someone go through this. And sadly, it's just going to get harder.

Tuesday, January 12, 2010

Good news, bad news

The good news is I weighed 152.0 yesterday. My clothes fit much better and I feel better about my body. I'm still squishy--I need to lift weights again--but at least the squishy stuff takes up less space. More good news--we bought a treadmill & it should be here next week.

The bad news is my life is getting more insane, not less. I am going to my Dad's on Thursdays & Saturdays now to take care of him. Mark has agreed to let me miss work on Thursdays & he will be studying and working on Saturdays & my mom will keep the kids.

What the Saturday thing means is this--I have to cancel the marathon in April. I can't run for hours & hours on a Saturday morning & still go to my dad's to take care of him. It's just not possible. Plus, Dad will either be in really horrible shape in April, or he will have recently passed away. There's no way I can deal with that emotionally, and my family (the ones who are helping with my dad) can't support me in a race that took time away from my responsibilities. So it's off.

I'll still run the half marathon on 4/11/10, because after running four halfs I know I can train for 13.1 miles without too much trouble. And I'll either run Chicago in October or wait until next April & run Evansville's 2nd marathon (assuming they do it again).

I was really upset last Friday when I committed to staying with Dad every Saturday & realized what that meant to my plans. It's a big dream, celebrating my 40th birthday with a marathon run. But it can wait. I got over being upset pretty quickly.

Seeing my Dad barely able to lift himself out of a chair puts things in perspective. I'm damn lucky to be able to run at all.

Monday, January 04, 2010

Thankful in 2010

Even though my life is crazy right now, I've got a lot to be thankful for as we start a new year.

And if I had more time, I'd list them all right now. But, since I'm sneaking in a post between getting the kids to bed & preparing a client review for a meeting tomorrow, I'll name just a few.

I'm thankful I have my health. Seriously. There are so many people around me who are seriously ill, it's a miracle to me that I am healthy and can even run.

I'm thankful for my husband and children. Mark has worked a miracle this year, working hard and keeping us in business during one of the worst stock markets ever. He also made all A's in his college courses. He's just two classes away from finishing his degree.

My children are, without a doubt, the best thing that have ever happened to me & my husband. Sophie is astonishingly talented and beautiful (not that I'm prejudiced or anything) and is doing well in school. Her dizzy spells are gone but they are manageable and she's missed only a handful of days of school this year because of them. She was accepted to sing a solo in her school's variety show; kids have to audition if they want a solo because so few solos are allowed. The theme is "{School's Name} is Out of This World" with songs around stars, sky, moon, etc. She is singing Don McLean's "Vincent (Starry Starry Night)," which is significant because Mark loves Van Gogh, Sophie painted a copy of Starry Starry Night for Mark when she was 6 years old, and Sophie is an artist in her own right. She has a great voice. I'm so excited for her. Luke is full of energy and life, is more clever than any 4 year old has a right to be, and keeps me on my toes as a mother. He is the most loving little boy I've ever met, and is rough and tumble and is always ready for fun.

I'm thankful that I am not experiencing the horrible Seasonal Affective Disorder symptoms from last year. This is a HUGE deal. I am almost paralyzed every year by SAD. This year, I think the difference is because I'm taking calcium every day (600 mg day & night), taking fish oil capsules twice a day, and I'm using my SAD light on a regular basis. I'm also running outside more than I have in past winters.

It doesn't hurt that I'm down to 153.6 too. Fitting into my clothes and feeling better about my body always helps my state of mind. Not drowning my emotions in food (thanks in no small part to the Adipex I started a little over a month ago) helps a lot.

Not running enough miles to be trained well for the marathon in April, but running enough to stay in the running, so to speak. We just bought a treadmill today. Woohoo! I ran Saturday in 20 degree weather with about a 10 degree windchill for 6.25 miles. It was supposed to be 10, but my face & hands weren't protected well enough so I had to cut it short. Cold weather running I can handle; frigid weather running I wasn't prepared for. Gotta research some good gear.

Hope you are having a happy new year!