A Letter to Katie

Dear Katie,

Sometimes I wish I could talk to you and know that you understood what I am saying to you. I wonder what was going on with you today that made you so grumpy and out of sorts. Are you tired, or not feeling well? You said you were fine, but that's always your answer and I suspect  you really weren't fine today.

I wonder if you appreciate or liked the slip I made for you today to make your skirts longer so you don't have to constantly pull your skirt down. I hope there's a part of you that likes it, even if I realize that you could care less if someone sees your underwear.

Do you know that I worked hard to make a special dinner tonight for David to celebrate his birthday and so you could have a dinner with our family this week. I'm sorry that our week was so crazy and family dinners were few and far between. I suspect that part of your grumpies today was because we haven't had much family time.

I wish you understood how hard it is on me when you sprint to your room and slam the door, slamming out all of us. How you only talk about going home to Utah and you get so excited whenever anyone says, "Utah," "Provo," "Ryley," "Michael," "Celeste," "BYU" or any other word that reminds you of your "home." You have a good life with us and I know you like living with us. Your insistence that you go "home" RIGHT NOW wears thin on days like today. I wish you could be back in Utah with things that seem familiar.

I want you to see your friends, and be in your room and do things that bring you comfort. But you are making friends here. You do have things here that you like. Is there really no appreciation in your heart for those things? I'd like to think there is, but I honestly don't know.

I get that in the grand scheme of caring for people with disabilities, my lot could be much harder. I appreciate that you don't scream and  yell. I'm glad you don't deliberately break things, even if you accidentally broke a glass today. Next time, please tell me so we don't have broken glass on the floor, 'kay?

I'm thankful that are who you are and while I don't want to change that person, I just wish we could communicate better so I know how to help you. I don't want you to be unhappy, yet I'm not sure you know how to be happy. You were so excited to have me come get you in Provo so you could go to Ohio. Now you are here and all you talk about is going back. I guess it's going to take time for you to realize you have two homes and your life will be lived in two different places.

I'm hoping a good night's sleep will be the best thing for you and for me. Tomorrow is another day. We have your Christmas party at RNI this week. You are doing a secret Santa. We are 10 days away from seeing Ryley. We will put up our Christmas decorations tomorrow and you will get to help count down the days until Christmas.

I love you, Katie. Even when you are grumpy and surly and whining about going home, I am grateful for the chance to serve you. Most days, I just get that's part of your schtick--you're naturally surly. Being your 24/7 caregiver can be hard, but I'm willing to do it because I love you and I want a good life for you. So tomorrow, if I'm still not feeling good and you're still grumpy, could you just please put a sock in it for one day and cut me break? Please? With kisses on top?

Thanks,

Suesan

Fall Activities

Just so you don't think that all I do is stress and whine about Katie, I wanted to show you some fun activities we've done this Fall. 

First up is our family campground. If you want to know more about that, you can read about our own campground on my Frou-FruGal blog. Dave built a swing for Katie. Here's a video of her testing it out.

A few weeks after this video, we had a work party for Dave's co-workers. It was a bit chilly and kind of windy, but we had a fire going and Katie enjoyed kicking back by the fire.




Noah and Katie and I took a trip out to the pumpkin patch to pick out some pumpkins.

She and Noah went through the maze together. Katie went through hay bale tunnels and worked her way through a large indoor maze.

We fed some animals, which was a lot of fun. Katie was fearless in holding out the food for the animals to eat, even the pony that had very big teeth and was making me a bit nervous.  We walked out into a field to pick out our pumpkins.

Katie helped me choose some flowers for the front door. She chose the purple flowers.

I've since transplanted them in the yard so we can enjoy them next year.

We participated in the ward Trunk or Treat activity. Dave and Katie dressed up.

Katie enjoyed having the glow sticks around her neck. Dave went all out, as usual with a fog machine/cave/maze that the kids had to go through to get the candy.

A few nights after the Trunk or Treat, our village had their Beggar's night parade. We went downtown to watch Noah play the trumpet with the band. As we stood on the side of the road, everyone in the parade threw out so much candy, that Katie filled her bucket! That's the way to trick or treat. She enjoyed getting candy and is still working her way through it.

On Halloween, Katie had her first official day of work at Richland Newhope Industries. They have been teaching her how to process documents and take pictures of them for digitizing the documents. She has happily gotten up every morning to get on the bus to go to work. She gets on the bus at about 8 a.m. every morning and is home by about 4 p.m.

We pack a lunch for her and on Fridays, they order Chinese food. Katie has earned her first paycheck of about $47. The bus drives up to the house to pick her up, but with the weather getting bad, we'll have to wait down at the road for the bus, as they don't want to tackle our driveway during the winter.

Katie and I got matching flu shots and while she doesn't enjoy the shots, she is very good about letting them give them to her.

We have found out from the attorney that the judge is going to require an expert evaluation, but we are going back to the doctor who gave Katie her physical to see if she'll sign the paperwork for us. We'll know this week if that's the case. If not, we'll have to look at other options, but I refuse to go back to Dr. Desai. I'll drive to Columbus before taking her back there.

We had a nice Thanksgiving. We had all the usual fare. Our family tradition is that each person helps out by making a part of the dinner. Katie made the drink for us by mixing the cranberry juice and ginger ale together. She loved it.

On Saturday, we ran errands. While we were at The Home Depot, Katie and I played around in the Christmas aisle, rocking out to the singing bears. Katie danced in the aisles and sang along to the songs. This is us just after we got done dancing.

We are talking about Christmas and that Ryley will be home in a few weeks. Whenever we mention Ryley's name, Katie says, "I want to see Ryley RIGHT NOW!" When we tell her she has to wait, she kind of deflates a bit, so she is very excited to see the girl.

She's excited to buy some presents for Michael and Celeste's family and Mary's family. When I asked Katie if she wanted to get them a present, she grabbed my arm and said, "Yes! I want to do that!" She was very emphatic about it, so we're working on a gift for their families.

I've been happy with how things are going. It's so much easier on me to have Katie gone during the weekday. She is much happier to be doing things and it makes it easier on me to have her here. It's hard to feel on call 24/7 and it helps me enjoy the time we have together.

She still tells me she wants to go "home" but I don't feel like it's because she is unhappy with her life here. I think Katie has yet to understand that she has two homes and she's always going to yearn for the familiar. I have no doubt that when she's back in Provo, she will tell Michael and Celeste that she wants to go home to Ohio. It's part of her charm.

Suesan

Happy Dance Day

At 8:10 a.m., over Northeast Ohio, a choir of angels broke out in the Hallelujah chorus. Okay, so it was only in my head, along with one of these.

For the first time since late July, I am alone in my house again. If you young mothers of toddlers mock, trust me, I feel your pain. But MY youngest is almost 14. That means for nearly the last DECADE I have had alone time in my home during the school year. 

Since Katie has moved in with us, alone time has gone away. I'm rarely alone. 

I've said it before, and it bears repeating. A struggle of the second-generation caregiver is not the amount of work you do for the disabled person in your life. It's the loss of some personal freedoms that seem to be the hardest adjustment--at least for me--to make.

Plus, yesterday was one of THOSE days. The "I want to go home" kind of day. Where every sentence out of Katie's mouth was proceeded by that statement. It kind of feels like one of your kids telling you they wish they had a different Mom. 

It hurts. I know it shouldn't because the rational part of me is fully aware that Katie is incapable of deliberately hurting me. But still, it's an emotional bitch-slap.

When she was in Provo and getting close to the time she came to live with us, all she told Celeste was how excited she was to come to Ohio. She also did the "I want to go home" thing with Celeste. A LOT. Only home then meant Pasco, to live in her old house next door to her sister, Mary. 

It makes me realize that when Katie does go to stay in Utah this Spring for a few months, that maybe Ohio will be home during these days. I don't know. I know that Katie needs to get used to us and needs to come to realize that this is one of her homes. Her life has been in transition the last couple of years, and I get that it will take time for her to accept her new normal.

Today is one of the big steps to making that happen. After three long months of bureaucracy and forms and assessments and physicals and shots and ID cards and direct deposit forms and the like, we finally have Katie enrolled in a day program.

She got on the bus this morning, and I swear I heard angels singing. Maybe it's just the utter stillness and silence of my home, but they sound an awful lot alike in my mind.

Suesan

No Good Deed Goes Unpunished

I was talking to our attorney this morning who is helping us get guardianship for Katie. I told him about our experience last night with the psychiatrist and he said, "I think what you are finding out is that no good deed goes unpunished."

Boy, is he ever right. We were told by the folks at Richland New Hope that we would need an expert evaluation for Katie in order to get guardianship. They recommended Dr. Desai and told us he would charge a $25 fee for filling out the evaluation for the court.

Bear in mind that Katie has had a guardian since 1991. The reason we are applying now is because Mom recently passed away and Dad died several years ago. Katie has been her own guardian since September. 

Like good soldiers, we scheduled the appointment with the psychiatrist. We had to wait until we knew Katie would have some funds because without insurance the new patient visit was $195 on top of the $25 paperwork fee. 

After waiting an hour and 20 minutes for the doctor, we finally got in to see him. That makes me mad right there because why can't they schedule you for when they can actually see you? Don't get me started, though.

I handed the doctor the evaluation form from the guardianship packet I had and asked if he needed it or if he had his own copy. He informed me that he could not fill it out this visit, but that he would need THREE visits with Katie to determine if she was capable of taking care of herself. 

Let me assure you, a five question conversation would clear up that question, toot sweet. Here's how a typical conversation with Katie would go:

Doctor: "Katie, how old are you?"

Katie: "Nine."

Doctor: "Where do you live?"

Katie: "Grape Street." (Her address in Denver which she moved out of in 1989)

Doctor: "How much money is this?" (showing a quarter)

Katie: "A dollar."

Doctor: "What do you like to do?
Katie: "Isnee" (It will take the Dr. several attempts of Katie repeating this word before anyone understands that she is saying "Disney" which is what she wants to watch all day long."

Do you see what I'm saying? You are probably not an "expert" but I'm guessing that you would have no qualms stating for the record that Katie is in need of a guardian. I get that his professional reputation is on the line. I understand that he has to be concerned that someone would challenge this decision in court, but honestly, who would?

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Every family member clearly understands that Katie needs a guardian. No sane person would ever question this need, which means we probably need to be concerned about the less-rational people.

I was getting pretty upset with the doctor, because I wanted to make an informed decision about what he was saying and how much this was going to cost. If it was going to take 3 visits for his signature, we wanted to know how much those visits would cost.  Katie only has X amount of money from Social Security. We have to carefully budget her money. He couldn't/wouldn't tell us. We would have to discuss that with the girls out front.

We were done with this doctor. He was clearly incapable of understanding what we needed. He kept saying he needed to "treat" her. Um, I can't even get her to understand how important it is to wipe her butt after going number 2. What does he think he is going to treat in 3 visits? We asked the "girl out front" (she was 50+ if she was a day) how much follow-up appointments cost. She told us $80. So for a grand total of $380, and at least 6 or more hours wasted over the next three months, we too, could be the proud recipients of an "expert evaluation."

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I can't begin to describe how upset I was, because it does start to feel like you're getting played. For example, we applied for Medicaid benefits for Katie on October 3rd, only to find out they have a 6-8 week backlog. We can expect to get a call from them late November or later if you factor in the holidays. This is only the first step of many to determine eligibility for Medicaid.

I already vented my frustration about the process of getting Katie day services. I started in July and we've yet to have her participating. In fact, my pissy email went unanswered yesterday by all parties.

This morning I called the attorney to see if the evaluation was even necessary. He doesn't seem to think it is and is going to check with the judge. Even if it is necessary, it turns out the evaluation can be filled out by a doctor as well. If we need to, I'll take Katie back to the doctor who did her physical to see if she'll fill out the papers for us.

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It can feel like a lonely world and while we have encountered challenges like the psychiatrist, we've also met some really amazing people, like our attorney. He's helping us pro-bono because he's so impressed that we're taking on this responsibility. Honestly, that baffles us a bit because what else are you going to do? But we will take all the help we can get, because believe me, we need it.

Suesan

There Are Days

I walked to the edge of the cliff today. In fact, I teetered on the edge all. damn. day. long. It's the cliff that I believe all caregivers are driven to by the frustration and challenges of providing care to someone who doesn't cooperate, or communicate or participate or any of the "ates" that make up our human existence.

I felt pretty crappy about it, too. Because that's what I do. I got mad at something Katie was doing. And I raised my voice. I scolded her even. 

And then I got upset at myself for getting frustrated with her. Which sort of pisses me off. Is it wrong of me to not want her to color so hard that crayon shavings fly off the page and onto her, covering her with a waxy, blue layer of crayon confetti? Waxy confetti that clings to everything in site and is nearly impossible to clean? She lifts up her shirt when she does this, so her entire torso is covered in the crap. 

I have standards and I know that she can follow the rules of our house. She knows how things are done, but she's been so used to being free to do whatever she wants, that it's often hard to get her to follow a new system. While I can't pinpoint a specific behavior or "Ah HA!" moment, I know there are times when she's trying to get back at me.

The thing is, I was smug. I thought I'd circumvented the whole issue by buying the twist-up crayons that have a crayon lead in them. That crayon is harder than normal crayons. You don't get the same coverage.

She showed me, though. She proved that crayon of all kind can be reduced to shavings of crayon confetti if one is committed and willing to break a few crayons along the way. 

I took the color books and crayons away until after lunch. She rewarded my discipline by pulling out several strands of hair. Too much hair. It's a whole other problem that can take months to heal. I'm definitely not willing to let her pull her hair out.

We're back to markers. I refuse, REFUSE, to clean up crayon mess, which would be surprising if you know that I'm not the pickiest of housekeepers. I can let my house be pretty dirty at times. Apparently, I found my line in the sand, because I'm unwilling to cross the crayon line. 

Markers are washable. Sure, she often looks like a Smurf when she's been using the blue markers for too long. She also looks like she's been on the losing end of a marker war. But markers are washable. They don't leave waxy remnants to show they were there. 

Not a great day, and while I probably should have started this blog by telling you what a wonderfully blessed adventure you're about to embark on, I just don't have it in me today to say such a thing. If you're a second generation care provider, you're in for one of the most thankless things you'll ever do.

The pay sucks. No one says thank you. You may get doors slammed in your face. You may be told that you're not liked and they want to go home. They may color themselves with crayons, or worse. It can be hell and there will be times you find yourself on a metaphorical cliff wondering how the hell you're going to hang on.

One of my friends, who deals with far more than I'll ever have to endure, told me today to build a shelter while I'm up here. It's going to be my new home for awhile. If I can, look around and I'll see that there are others up here with me, in their own shelters. Trying to hang on. Trying to survive the challenges that will define your new normal.

Suesan

A Dose of Reality

I'm not going to apologize for what I'm about to write. Nor am I going to filter my language. If you're offended by it, so be it. This is my attempt to share the joys and trials of being a second-generation caregiver. 

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There are some really sweet moments and blessings and there are some real trials. Mostly, I've been hit with the trials and I just needed to get those off my chest.

We took on the full-time care of my sister-in-law, Katie, back in July of this year. 

Katie has Down's Syndrome, and I suspect, some Autism-spectrum disorders, although those have never been officially diagnosed. Katie is by nature, reclusive. She communicates poorly and it is often difficult to understand what she is saying. Although, when she is excited about something, it is much easier to understand her.

Before she even came, I arranged for an appointment with the local agency that has day programs for Katie to participate in. Our first appointment was in late July. It's now October 24 and Katie still isn't through the application process.

Like taking on a disabled family member isn't rife with enough trials. The paperwork and bureaucracy we are having to go through is akin to torture. Or, at least, it's a tortuous process. 

I'm not going to lie. A good part of me wants Katie to be in the programs so I have some alone time. Which sounds almost selfish when you realize that Katie spends the majority of her time in her bedroom, watching the Disney channel and coloring. She isn't in my face trying to get my attention, she doesn't want me to interact with her. She isn't going around the house making messes or destroying things so I have to be on constant vigil.

Her room is next to my office and she does frequently turn up her t.v. too loud. I swear, that damn music from Phinneas and Ferb makes me want to punch a baby. Again, not apologizing. That's how I feel. I know that compared to what some caregivers go through, this is nothing. I'm fully aware of that fact.

Even though I can still do my own thing, she's still here. In my awareness. I still have to think about when it's appropriate to feed her. She won't come to me and tell me she's hungry. I have to remember it's lunch time and feed her. That may not sound like much, but I'm not so good with regularly feeding myself, let alone another person.

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It's that constant, 24/7 on-call, never-ending, thinking about how to take care of someone else that is always there. You never get a break or a rest from it. Yes, my husband is here and so are our boys. But 99.9% of the responsibiliy to take care of Katie falls to me. Even if I could share the load with them, and I do, it's still me who has to remember that she's here. I would love to have a break, even if just for a few hours a day.

I have to think about when to bathe her. I have to deal with her fricking periods. No one else can deal with that. Just me. And let me just say for the record that I don't even have to deal with MY OWN! A hysterectomy  (PTL!!!) saved me from that several years back. Do you KNOW how many layers of wrong it is that I have to help clean up someone else? It's just wrong.

Then there's my underlying, seething anger that comes to a full boil every time I have to clean up shit. Literally, shit. Katie's mom, my mother-in-law, somehow managed to teach Katie to read, but never to wipe her own butt. She just did it for her. For Katie's entire life, her mom wiped her butt. Even though her Mom always planned that Katie would some day be living with someone else, she never thought that perhaps this particular skill was one that would help Katie and her future caregivers. Not to mention making her own life easier.

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Katie's sister had care of Katie for several years before sending Katie to the brother's houses. At the very least, the sister should have taken on the task of teaching Katie this all-important skill. But, no. She didn't. Now Celeste and I have to deal with Katie's poop dried into her panties because Katie didn't get herself clean enough.

When her panties are dirty, Katie takes them off and puts her pants back on. Commando-style. She will then not put new underwear on. So then her pants get crap in them, too. It's so lovely.

The other morning I came in to find dried chunks of poop on the floor of her room and in her bed. Smeared onto her white eyelet bedspread, all over her sheets. She really didn't get clean the night before.

Behold, my joy was NOT full at that moment. I wanted to cry. I'm not going to lie. I wanted to scream and rant and rail at my now-dead mother-in-law. How dare she?! There are times I really think I may smack her in the next life for what she's put Celeste and me through.

Other times, I am filled with compassion for her because she did this for 35+ years. She took care of a child that has the mentality of a toddler, the attitude of an angry teenager, and the preferences of a little old lady, and not the cute kind, either.

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It's a lot to do. My daily tasks now involve accompanying Katie to the bathroom every session to try to teach her how to properly clean up after herself. I know she can learn this, but it is going to take every last ounce of patience I possess...which isn't much....to teach her. 

As thanks for all of this, Katie tells me nearly every day how she wants to go back to live with Michael and Celeste. Thanks, Katie. Thanks, for recognizing my efforts to care for you.

Do I sound like a bitch? Because, I surely feel like one at times. And before you condemn me too harshly, you should know that I want Katie here. These moments of trial are brief. They are not constant and those moments when Katie smiles or says something funny goes a long way to erase the memory of poop-cleaning.

Having her in our home has been a blessing to our family. I love that she is here. Mostly, I like that I'm not alone all the time while the boys and Dave are off doing things. But there are still times when I need a break. It's a lot to do, even if it isn't a lot to do.

Today I wrote a pissy letter to Katie's caseworker. I complained that it's taking too long to get Katie through the process. A part of me feels badly for complaining. However, taking on the care of a disabled person is hard enough. The bureaucratic hoops we have to jump through are ridiculous.

Today, we are getting a psych evaluation for Katie as part of the guardianship process. Another hoop. A $225 hoop, too. That's part of Katie's money that could have been spent on a horse-therapy program that she'll have to forego this round.

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That's my reality today. Cleaning poop. Writing angry emails. Bathing an adult. Shaving her facial hair. Fixing her meals and trying to find opportunities for her to help. Asking her to take her dirty clothes to the laundry and sorting them. Buying her weekly set of markers because her old ones died. 

Try not to be jealous, will ya?

Suesan