Tuesday, July 30, 2013

Ready or Not

I originally wrote this post on my other blog, Frou FruGal, but since a lot of it has to do with Katie, I thought I'd repost that portion of the post here. If you've already read this post on Frou FruGal, feel free to skip to the update at the bottom.

I really should be upstairs right now, getting the dye on my hair and finishing my packing before I get on a plane today. I'm flying out to Utah to go pick up Katie, my sister-in-law.

Katie - Get Down Syndrome

(I made this shirt for Katie for the Valentine's Dance. Katie LOVES music and loves to dance).
If you are a regular follower, you know that Katie lives with our family for 8 months of year. Katie has Down Syndrome and since both of my in-laws have now passed away, Katie lives with our family for the majority of the year and with her other brother and his family in Provo, Utah for the rest of the year.

I'm not going to lie. It's hard to be a full-time caretaker. I've been on hiatus for four months and I desperately needed the break. I have loved every single second of my freedom. Don't get me wrong. I fully appreciate the fact that as far as taking care of someone with special needs goes, we have it easy. Katie has a calm nature and even though she is somewhat prickly at times, its pretty easy to get her to do what she needs to do.
Having said that, though, she does not have the capacity to think about her own needs. If she's hungry, she doesn't go make her own food or even tell you that she's hungry. Which means you have to constantly think about making sure she's eaten. Living in a house with teenage boys should help you appreciate the fact that Katie is the only person I have to do this for.

Katie - Special Olympics Medal Stand

She doesn't always understand what she is feeling or what she wants or needs and if she thinks she wants something but can't have it right then, she is usually incapable of understanding the reasons why she can't have it. This is often hard for me because I'm one of those people that doesn't just feel my own feelings, I usually feel other people's as well.

This is especially hard on me when Katie wants to be in Utah but it isn't time for her to go back. Usually, I can blow it off and not let it bother me. Trust me, there's no realistic way to be in the caregiving business for the glory or thanks because there isn't any. But sometimes, when you've done things for a person that you find unimaginable (I will spare you the details on this, but trust me, I've done some things you wouldn't dream of having to do) it's hard when that person you are caring for tells you they want to be elsewhere.

Truthfully, usually in those hard moments, those are my thoughts too. I'd much rather have her elsewhere in those moments and have someone else deal with her messes. I'd love to not have to do the hard things. Last year when Katie came, our life got crazy. She came out with my daughter, my niece and nephew. We spent a long week showing them the sites and playing in our state. Then they left and week later we moved to a new house.

Then everybody got sick. Montezuma's revenge to the nth degree kind of sick. Then we moved Katie to a new day program and found her a doctor (a special kind of challenge all on its own). We tried to work on issues on the house, which were many. Our daughter moved back home for a few months before her mission. Band season kicked into gear. If you're a band parent, you know what I'm talking about.

Katie loves going to see Noah in the band. It's one of her joys. If we say anything about band, she says, "I'm going!" She loves it and she loves watching the cheerleaders at the football games. She yells for the teams, even the opposing teams and generally has a great time.

Noah and Katie - Band

Both boys also had different schools and different schedules which meant driving 2.5 hours a days for the first month or so of school and then only 1.5 hours a day after that until February when Noah got his license. Then there was the whole getting the girl ready to serve a mission for our church which meant marathon sewing sessions to get her a modest wardrobe. Not to mention the whole I-Miss-My-Girl syndrome that I went through once she left.

Ryley - Pre-Mission

So, anyway, life was hard last time she came. Things have settled down now, but it's hard not to feel like it's all going to go to heck and back again when she comes back. I associated all the trials of last year with her. Not fair, and I recognize that, but still how I feel.

Lest all these smiling pictures of Katie fool you, she is not often smiling. It's more of a rare event which is why it is so fun when she does smile. I like to describe Katie as the someone with the needs of a toddler, the attitude of a teenager and the preferences of a little old lady - all in one fun package. It's a challenge, but I love her and ready or not, she's coming back. My challenge will be to put aside my fears and just take things as they come.

Update: A few people commented on this post over on my other blog about how down I sounded. I wasn't really down, so much as trying to talk things out and prepare myself for the change.  Mostly, writing is cathartic for me and once I wrote out what I was feeling, those things I was worried about went away. 

I had a great trip out to Utah. I took a swing out with my brother up to Idaho to help our mom clean out Dad's office. My dad passed away last month and Mom needed some help. I really loved spending time with them and helping out Mom and getting her situated for her new normal.

Katie has transitioned well back into her Ohio routine. She seemed surprised that everything of hers was still in the same place, including the door to her room. I'm not certain why she thought that would change, but she seemed happy to see her door, amongst other things. ??

She's had a bit of cold since being back in a wetter environment, but I think she was just starting to get it before we left Utah. On Friday, Dave and I took her to the Knox County Fair to hear Kellie Pickler sing. The stadium there is built into a hillside and it is quite steep. It wasn't until we were up in our seats near the top that I looked over at Katie and saw a rather sick look on her face that I remembered that she has a fear of heights.

Dave and I tried to keep her busy and not thinking about how high up we were, but she was only momentarily distracted.

I'm surprised she is even smiling in this picture. We thought she'd be okay once the music started, but it was so loud she put her hands over her ears. We stayed for one song and then had to coax her down the stadium steps to leave. Later, I asked her if she had a good time and she replied, "No. I'm afraid of heights."

I don't know if you can fully appreciate what a huge thing this is for her to say. Katie usually only gives one word answers and often times those are hard to decipher because of her mumbling. For her to clearly express the concept of fear was a huge deal to me. I know that being in the programs she's attends in both Utah and Ohio have helped her speak her mind a bit more. 

That's not always an awesome thing, especially when she says she doesn't like something that you have no power to change. And, to be perfectly honest, I don't always appreciate her grumbling about stuff. I mean, when I'm the person that has to occasionally wipe her butt and clean up her other messes, who is she to grumble? AmIright?

I realize she is fully entitled to her own opinion on things, though, so I try to ignore those grumblings that I can not change, praise her for expressing her feelings and move on to the next moment that will hopefully be better than the last one.

And we do have some good moments. Like the other day when she a runny nose and + hands covered in blue marker = rockin' an unintentional Adolf Smurf look.

I took a picture of her to show her what she looked like since she wouldn't get up to look at herself in the mirror and I wanted her to go wash up. She's a nut some times.

Sam (our youngest son) and I decided the other day that it would be nice if Katie came with a thought bubble that would appear over her head to help us understand her a bit better. For example, this morning, I was trying to get her out of bed and into the shower before her program. She was dawdling and stretching and just taking her own sweet time. Just before she got out of bed, she got this "lightbulb moment" look on her face and reached around behind her and stuck her hand into her pajama bottoms.

I thought girlfriend had a wedgie and was trying to right matters before getting out of bed. Imagine my surprise as she started pulling these things out of her pants.

I REALLY wanted a thought bubble at that moment to understand the thought process that led to wadding up two cinch-sacks and a pair of socks and sticking them into her pajama bottoms for the night. I am really quite curious about that one. #SomethingIHopeToLearnInTheNextLife

So, we are good. We're readjusting. We're learning and we are just enjoying each good moment as it comes and trying to survive the less-than-good moments. We are looking forward to band season and are planning to send Katie to Disneyland in October. We are also trying to figure out some medical issues and know that we may have more adjustments to make in the future.


Thursday, December 13, 2012

One Year Later

It's been a year since I've written and a lot has happened in that year. Katie finished her rotation at our house rather well. She had some rough months in December and January being out of sorts and by February she perked up and started the countdown to return to Utah.

Katie loves being in Utah. One of the perverse things about her nature, though, is that when she is in Ohio, she says that Utah is her home and talks about going back to Utah. Her trigger words are many: airplane, Utah, Michael, Celeste, Provo, BYU and the like will all make her say, rather animatedly, "I'm going!" I have learned that if we say, "Yes! You are going. When are you going?" then she will tell us "Spring" and that is the end of it. However, there are days when that is not enough and she genuinely misses her Utah home, family and friends.

By March, I was definitely ready for a break and Katie was ready to return home. The travel is not hard for Katie, but she does get nervous on planes. I like to fly Southwest with her because they will let us preboard and get a window seat which helps Katie. You can see how happy she is in the cell phone picture I snapped. Smiles like this are rare from Katie.

I planned a Sister Pallooza  weekend with my Mom and 4 of my 5 sisters in Las Vegas to coincide with my trip to take Katie back to Utah. It was a great respite for me to sit in the sun and visit with my sisters and have ZERO responsibilities for a few days. I flew back to Utah from Las Vegas and spent a few days hanging out with my daughter and visited my brother. It was such a needed rest for me. 

When you a caregiver, it is so important to have those breaks. I don't really get much relief during the time that I have Katie. My husband's job as a managing editor for a local newspaper requires he work long hours. I'm the only female in the house besides Katie, so there are some needs I just have to meet. Understand, that Katie's level of care is very minimal. She needs someone to feed her. She will never think to get food for herself. She does follow a routine pretty well, but I have this constant "on" button in my head that doesn't shut off when Katie is in the home and it is draining on me. 

Noah and Sam did a great job helping Katie out. They stayed with her and made sure she had her meals on nights when Dave and I needed to be away from home. Beyond that, there wasn't help for me to provide respite. I didn't know enough about the county programs and what they offered for respite care and we do not have family in the other to help out. Being fairly new to our community also means we don't have the friendships to draw upon for outside help. 

Let's just say that we all were very much in need of a break when March came. Dave and the boys and I got to connect again in a way we hadn't with Katie in our home. We were just able to be us again. We had a fabulous vacation in June. We went to Washington DC and rode bikes to all the monuments and sites. We went up to Baltimore and were there for a celebration and stood on the deck of an old ship with men in period clothing of the sailors and watched the Blue Angels fly overhead. It was one of those absolutely perfect days.

Our summer was a full one. Noah worked at a scout camp an hour north of our home and we took many drives back and forth to camp. In mid-July, days before Dave and the boys were about to head out to their own Scout camp for a week, we got some very upsetting news. The home we had been leasing and thought we would be buying was no longer available to us. The owners were returning to the area and we had 6 weeks to find a new home.

If I haven't mentioned it before, we live in a small village in Ohio. Finding a home with at least 4 bedrooms and 2 bathrooms is not an easy task. Finding one in 6 weeks was even more difficult. Finding one in our school district proved impossible and we finally found a 162-year-old home back in our old school district. Our boys did not want to leave their school district, though, and since they have open enrollment, we kept them at their old school, but now we have to drive them there. Every. Day.

We had already scheduled Katie's return for the first week of August. She was supposed to come back in July, but we'd invited our niece and nephew to visit us when Katie came out and the soonest they could do that was in August. Katie returned and went right to her old room, knew her set up and settled back into her routine with barely a hitch. Until a month later when we actually moved.

Then, her stress levels increased. She pulled out some of her hair along a scar that she has on the top of her head. Her, "I want to go home" statements increased daily, accompanied by tears at times. On top of that we got the world's worst flu bug and Katie does NOT know how to care for herself when she is sick. 

The poop was literally flying. Have you ever seen the movie, "The Princess Bride" when they are in the fire swamp and there is a popping noise before the eruption? 

That is Katie before she barfs. She starts gagging and coughing and you know it's coming. You can grab the bucket and get it to her in time. No such luck when the illness is more "southern" in nature. When it starts coming out of the other end and you are trying to move someone as fast as possible to the bathroom who is naturally slow under the best of conditions and poop is trailing after you? Yeah. Those aren't good days. And you will understand why I made a bed for her in the bathtub on that day. It was a hell I never want to visit again. Like, Ever!

However, we got better and Katie was still going to her regular day program and even though she had to get up earlier than at our old house to ride the bus, there was some normalcy for her and things soon settled. In October, Katie became eligible for a Level 1 Waiver which means she now has Medicaid as her insurance and she now had the option of going to the New Hope program that is mainly funded by the county, or she could attend some private day-hab programs. 

I toured several of the area day-hab programs and founded one that offered more recreational activities. New Hope is mainly a work program. They say they offer other recreational activities, but they had Katie assigned to a building that didn't have any of those and getting her part of the activities was never very successful. I wanted her in a program where people are more willing to draw her out of herself and encourage her to participate. We are trying to improve Katie's social skills. As much as she seems like she wants to be alone, Katie really does enjoy being active. She is highly curious and I think she thrives on a variety of activities.

She started the new program just before Thanksgiving. Unfortunately, she got a bad cold, followed by an abscessed tooth and has missed a couple of weeks. Originally, I was going to keep her at New Hope for 2 days a week and All Care (the new program) on the three days. However, the fun field trip days are not available at All Care unless you go all week and those are the days that I really wanted Katie involved. She is also eligible to have a provider come in and work with Katie for 5 hours a week. When we had to change to paperwork to add the provider, I went ahead and moved Katie to All Care for all 5 days so she can do the fun activities that they talk about all week. Both of those changes happen later this month so I'm anxious to see how those work out for her. We are also getting an iPad for Christmas for her and we think we can use that to help her communication.

Finally, we now have a primary care physician. He is AWESOME. And he listens and he is willing to work with us to help Katie. Finding doctors in our area makes me feel like I live in a Third World country at times, so you can imagine my relief and joy at finding such a doctor. He prescribed some anti-anxiety medicine to help Katie through some of those transitions that lead to her pulling out her hair. He is getting some blood work done to give us a baseline for where Katie is at since blood diseases and Alzheimer's can start at 40, which is 1.5 years away. Not a pleasant thought for us. 

You know what else he did? He asked me how I was doing. Me. Not Katie. Me! I almost started bawling because if you are a caregiver you may already know that very few people think to ask how you are doing with the challenges of your life. He won my devotion with that simple question. I had already told him about the day to poop was flying and said, "It was a hell you can't even imagine." And then he gave me this look in which I could see that, yes, in fact, he could imagine such a day and I took it back. I said, "Wait. You're a doctor. You KNOW what I'm talking about." We bonded just a little bit over that.

While at the doctor's office, the nurse said to me, "You know you are amazing for what you are doing in caring for her, right?" I tried to blow that off because usually such statements make me mad. I always knew, from the moment I met Katie that some day I would be taking care of her and I have always been willing to do that. She is my husband's sister and she is my sister. What else would we do? However, I have heard it from enough professional people now to know that not everyone feels like Dave and I do. And when the nurse said it to me then I realized I was never going to get a thank you from Katie, but it was like the nurse was thanking me for her. I was still somewhat emotional over the whole doctor comment, but I was very touched that someone does recognize the sacrifice I make and appreciates that I am doing it.

Obvi, I am not in this for the glory. There is none. I do this because I love Katie. I have realized in the last year of taking care of her that there are no good days or bad days. There are good moments and bad moments. On the day we had her tooth pulled, a day that should have been a bad day for her, we also decorated the tree. We all wore Santa hats and we played Christmas music. Katie sang and danced to the music and every ornament she hung up that had something to do with Utah she said (in a happy way), "I'm going!" Yes, Katie. Yes you are. In the Spring.

 It was a good moment and I'm grateful for every single one I get.