Monday, October 24, 2011

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. 

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.

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.

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.

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 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.

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?




Picture the family getting invited to dinner, a really nice dinner with really nice people, you are so excited you actually do not have to cook, yea. Oh NOOOOOOOOOOO! There is some serious trouble in the bathroom. Its on the shower curtains (all 4 of them), the floor, the toilet.
Why it the toilet clogging? Oh it must be the entire package of wipes that got flushed down the drain.

OH! That's why she ran back to her room and came out with new pants. Good thing those bed sheets work so good at finishing the cleaning job. "You better be singing the WHOLE ABC song when you are washing your hands in there!"

I do not feel like eating anything now.



You know some people have such a great attitude and never complain. Not me, I am all about a good dose of complaining. There is just no way I could get through somethings without getting mad enough to change things. I love you Suesan, you are very entertaining complainer, you do it with such pizzazz! Thanks for the blog.


Reading your blog has brought back memories of taking care of our momma after brain damage. As with your Katie, she was not demanding or ugly, but she could not toilet or bathe herself and had very limited mobility. My sister was her every day caregiver with adult daycare, as she worked full time outside the home. I suggested wrapping TP around long-handled BBQ tongs as a potty time aid. Sis did not go for that, but saved up and installed the butt-washing toilet seat. Some touch up was still required. But I am vindicated, saw in one of those unusual helps catalogs a bathroom device very similar to my tongs, so there.

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