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.



Jan Elizabeth

Dear Suesan,

I came over to this from your most recent post in Frou Frugal, and I was blown away. Your life is so full, and your heart is so big!

I'm familiar with the challenges of caregiving from looking after my Mum when she had Alzheimer's. We lived with her, and I know all about that "on" button. I also know about poop flying. Or at least, I know about it being stuffed between the layers of the bathroom sink which had rusted out, and having to redo the entire bathroom! My Mum had become bowel incontinent and was trying to deal with it herself without telling any of us what was happening. And of course, after we had finally traced the wretched smell to its source, I then had to start changing her, which was traumatic for both of us.

Being a caregiver takes so much that you actually feel it being taken away. It's taken me a few years to recover from living with my Mum, and even from caring for her at a less personal distance, when we got her into a wonderful nursing home. She died last October and it was a blessed relief. It's different in her case from your sister-in-law, because I remembered her as she was, and was grieving years before she actually died.

I hope by the time Katie comes back you have developed some more ties in your community so you can have some much-needed respite. It's important for everybody, but for you it is crucially needed to replenish what is being taken away as you are on-call 24/7.

What a gift this blog is! I haven't known very many other caregivers, and didn't get any kind of professional help (as in people to talk to) to help when I was looking after my Mum. I think I was afraid that if I started crying, I would never stop. So reading this has really hit me deeply. Thank you!

And trust me when I say I understand there is no glory in doing this job. There are rewards like the big smile you got for the picture, above, but hearing people say how wonderful you are doesn't really cut it. (Now if that came with an offer to babysit...!!) However, you are doing God's work. It's a wonderful thing.

I'm going to come back and read more when I can. We've also just moved, and I'm working three jobs to try and keep bodies and bones together in our lives, so things are busy.

Thank you again for writing this,
Jan Elizabeth

Ginny Wright

My dear cousin -

Thank you for your insightful, funny, and truthful post. You've put into words my life with our two girls - and reminded me how blessed our lives are.

Post a Comment