I don't know if it's a question so much but it seems as though people are curious about what I do on a daily basis. While it's true, especially in the winter, that I'm not always running around crazy busy, I tend to approach many of my days like a job with a list of tasks to complete. The truth is though, my days are always different and can change on a moments notice, literally.
I do standard things that most husbands do. I get up and and make sure Jimmy is awake before making coffee for myself so I can function enough to either help him get ready for school or ask the necessary questions about if he has his homework in his bag, any papers, ect, like I suspect most other parents of a 6th grader do. I drive him down to meet the bus on days when the weather's nasty (it's about a quarter of a mile from the house to the pickup area) which will become virtually everyday once winter sets in here. I work on the house and the cars when needed. I mow, take care of the landscaping, plant the gardens, bring in the firewood in the winter; cut, split, and stack the firewood in the summer; run to the post office to mail out the pottery pieces people have purchased from her, and pretty much anything else you can think of when you think of the husband's role in a marriage.
Together with those I also do the majority of the cooking, the dishes, much of the cleaning and laundry (though Jimmy is beginning to help out more with each of these and Marilyn helps out as much as she can.) One of the hard things with Marilyn, however, is that if she pushes herself to do much on a given day it actually makes things much harder for a day or two after. When she gets worn out, she's done and it takes days not minute or hours to recover. I see on her face the struggle that she has wanting to help when she can but realizing that she needs to guard against pushing herself to much.
Marilyn can't drive so many things are scheduled and arranged around that. The main VA clinic in the state is 5-6 hours away so that hour long Dr.s appointment is an all day event. If she's not feeling well a two day trip becomes necessary and we stop at my family's house overnight to take a break and let her relax. What we attempt to do it schedule other things while we're down that way so it's not such a long trip with minimal results but that's not always possible. Even if the appointment can be done at our 'local' VA clinic, local is a very relative term considering it's still 60 miles away. Again, we try to arrange other errands around the trip to make good use of our time, but she can only be on the go for so long before she becomes exhausted and we need to get back. Basically a standard, local appointment including driving and time spent in the doctors office is roughly 4-6 hours give or take.
Also, because she can't drive all of it falls to me. I do the grocery and other shopping, take Jimmy to hockey practice and games (some of which are up to two hours away), take them both to all appointments, go to the post office when needed, and whatever tasks most people do. She does come with me sometimes for grocery shopping duty but we've both decided that the task is much easier accomplished when I take care of it myself. Not to mention, I think she dislikes doing it as much as I do and it's an easy way for her to get out of it. HA!
If she's had a bad day or night with pain or has had a seizure I change modes and go into medical professional mode (medical professional? Yeah, it's the best descriptor I can come up with right now). After care for a seizure breaks down something like this: If she feels in coming on ahead of time or the dog alerts we get her to a safe place, preferably seated or lying down. Once the seizure begins I monitor her, wait for the convulsions to subside and then sit with her rubbing her cheek and saying her name until she opens her eyes and acknowledges who I am. Postictal (unconscious) time can range anywhere from a minute to upwards of 5 on occasion. After that it's sleepy time for her for anywhere between 4 and 12 hours. Usually I remain awake throughout that time and check on her periodically as from time to time her breathing can become very shallow. The dog generally hangs out on the bed as well as her protector. Once she awakens there in generally a day or two where her mind is very foggy and she's run down and requires a lot of rest. She's also had times where her speech is pretty severely affected. When this happens the only way I can describe it is that she speaks like a stroke victim. It's very clunky, like she's trying to say the words but her body won't allow it. During the time I've known her this has happened a couple times though her speech is somewhat slowed after nearly every seizure. It once lasted three days and another time about a week. Apparently before we got together it happened for a much longer period after one particurally bad seizure and the speech issue lasted for a couple months.
My job after seizures is very similar what I do on days where the pain in her legs gets up to about a 7 or 8 to a 10. These days either require use of both crutches or her wheelchair. Often she requires help with various stages of dressing herself, standing up, getting out of bed, and manouvering in and out of the shower during these times. I spend a lot of time running during these times as well. Preparing and bringing in food, moving things around, and getting her whatever she requires. Those days are the most physically and mentally exhausting. It hard to watch someone you care about in an assload of pain. It's hard on them as well knowing that it's hard on you. Thankfully, I'm a big guy. At least, that's what I tell my wife.
It's can be hard to explain to those who've never done it or had someone close to them who's been a caretaker. When I first entered into this I thought it would be easy and looked at others who'd done it and didn't understand the time involved and the stress it could bring about so it's easy for me to understand the questions people may have. Sometimes it feels like I'm busy when I'm not really busy. Something it took awhile to understand is that it can take awhile to figure out a routine. I don't mean a day to day routine because that can change at a moments notice. But routines for getting things done. We're still playing with some things to find what works and doesn't but it's coming together slowly and as it does things become much easier.
So that's a very basic breakdown. To get into anything and everything that could happen in a day or week would require be to basically write a book and if you're anything like me, you'd lose interest pretty quickly reading about the duldrums that come with every day life. In many ways our life isn't all the much different than many other's I suspect and certainly much better than other families with a disability in the home. We try not to focus on the negative and are constantly challenging ourselves to be better. It's not always sunny, but we have lights that enable us to see the good things every day in life.