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Blogs of Writer, Artist, Photographer, & Caregiver Joanne D. Kiggins

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Location: United States

Joanne has published more than 2,500 articles and was award recipient of the 1990 Woman of the Year for Beaver County, Pennsylvania, for her accomplishments and excellence in journalism and to the community. Her co-authored book, “Unforgettable Journey,” won fifth place in the Grand Beginnings romance contest. An excerpt from her WIP, “Unearthed,” placed her fifth in the Absolute Write Idol contest. Most recently, her essay, “Perseverance,” is published in the Stories of Strength anthology in which 100% of the profits are donated to disaster relief charities. Her most recent articles were published in ByLine Magazine, Writer's Digest, AbsoluteWrite.com, and Moondance.org. She has a monthly freelance writing column at Absolutewrite.com. Currently, she is the sole caregiver for her 85-year-old mother.

Tuesday, September 25, 2007

What Do I Do All Day?? I'm A Caregiver!

Many caregivers deal with people who just don’t get it. Alzheimer’s Disease is one of the most horrible diseases a person could get. There is no normalcy with this disease. There is no knowing what the day might be like. There is no knowing what the next moment will be like. Planning anything is almost impossible. Once a loved one reaches the severe stage of Alzheimer’s, and sometimes even in mid-stage, everyone can throw plans out the window. The best we can do is keep our loved ones on a schedule and hope that nothing agitates them to throw them off that schedule.

Our job is to maintain a safe, warm, clean, relaxing environment and protect the health, safety, welfare and dignity of our loved ones.

Caregivers are on a constant watch, every minute of every day, making sure our loved ones are safe, warm, clean, dry, comfortable, and we do our very best to keep our loved one free of agitation.

Some people with Alzheimer’s Disease become attached to the caregiver’s hip. There is no moving from one room to another without the AD patient following behind. There is not a moment’s peace or a moment to relax. Just when a caregiver sits down hoping to prop their legs up to relax, there is a call for some need or another.

AD patients need help with everything. They need their hygiene taken care of for them because they’ve forgotten what to do. They don’t remember how to wash, brush teeth, wipe after going to the bathroom, flush the toilet; sometimes they don’t remember where the room is where these things should be done. They need a step-by-step instruction on how to walk, move through the house, get to the bathroom, and once they are in the bathroom, they need a step-by-step prompt as to what they should be doing while they are in there. In many cases, the person with Alzheimer’s cannot perform needs even with the prompts. They become agitated because they are no longer able to do things.

Someone recently sarcastically told me they work for a living and asked me, “What do you do all day?”

On days the loved one may be at Day Care, the caregiver is still busy all the time. At least I am. Regardless of how many hours my Mom is at Day Care, that doesn’t change the need for other things to be done.

My significant other lives in my house. I moved in with my mom into her house. We have two houses to maintain.

There’s grocery shopping, cleaning, laundry, prescription pick up, PT therapist appointment, OT therapist appointment, home health nurse appointment, dog grooming, dog veterinarian appointments, carpet cleaning (due to accidents the Depends don’t catch), bed sheets to be washed, beds to be made, bathrooms to be cleaned and disinfected everyday, grass cutting, flower bed weeding, house repairs, gutters to be cleaned, shrubs to be trimmed, gravel driveways to maintain, ditches to dig for rain drain-off, ditch basins to be cleaned out, storm damaged trees to be removed from driveways and property, newspaper to be picked up, mail to be picked up, garbage to be taken out and picked up, car oil changed, furnace to be checked, bills to be paid, meals to be cooked, doctor’s appointments, etc., etc., etc. And when the loved one is home it’s a constant, never-ending day’s work just meeting their every moment daily needs--and all their nightlong needs.

A typical day with Mom begins as follows:

“Good morning, Mom. It’s time to get up.”
“I’m tired.”
“I know, but you have things to do.”
“What do I have to do?”
“We need to get you cleaned up.”
“Where do I do that?”
“In the bathroom.”
“Where’s the bathroom.”
“Let’s get up and I’ll show you.”
“Do I have to?”
“Grumble, Grumble. I can’t get up.”
“I’ll help you.”
“Thank you, honey.”
“You’re welcome, Mom.”
“What now?”
“I have to wash you.”
“I’m sorry you have to do this.”
“It’s okay, Mom. That’s what I’m here for.”
“Thank you, honey.”
“You’re welcome, Mom.”
“What should I do?”
“You need to stand up.”
“I can’t.”
“Sure you can, Mom.” (I help her up.)
“What’s that?”
“It’s your walker.”
“Why do I need that?”
“It helps you walk.”
”It does?”
“Yes. It keeps your balance.”
“I’m dizzy.”
“You’re fine. Hold onto the walker.”
“What do I do?”
“Move your feet.”
“I can’t.”
“Sure you can, Mom.” (I touch her leg to prompt the move.)
“Where do I go?”
“To the bathroom.”
“Where’s the bathroom?”
“Over there.”
“Follow me.”
“Where am I going?”
“To the bathroom.”
“Where’s the bathroom?”
“We’re on our way.”
“What am I doing?”
“Going to the bathroom.”
“What for?”
“To get cleaned up.”
“What for?”
“So you can get dressed.”
“I’m tired.”
“I know.”
“Where am I going?”
“To the bathroom.”
“Where’s the bathroom.”
“Over there.”

At this point we’ve only made it three feet to the end of her bed. Are you tired reading?

“We’re almost there.”
“I’m tired.”
“I know.”
“What am I doing?”
“You’re going to the bathroom.”
“What for?”
“Keep walking, Mom.”
“What’s this thing?”
“It’s your walker.”
“What’s it for?”
“To help keep your balance.”
“What am I doing?”
“We’re going to the bathroom.”
“It’s too late.”
“I know, Mom. We need to get you cleaned up.”
“I’m sorry, honey.”
“It’s not your fault, Mom.”
“I’m dizzy.”
“You’re fine, Mom. You’re just tired.”
“Yes, I am.”
“Keep walking, Mom.”
“Where is this place?”
“Just a few more steps.”
“Oh, there it is. What’s that?”
“It a toilet rail.”
“What’s that for?”
“To help you get on and off the toilet.”
“We finally made it.”
“Yes, we did.”
“What should I do?”
“Stand there while I get these (Depends) down.”
“Now what?”
“I’m running the water for your shower.”
“I don’t want a shower.”
“I know, Mom. But it’s the only way to clean you properly.”
“I don’t want a shower. I’m cold.”
“I know. The water is perfect.”
“I don’t want a shower.”
“I know. Let’s clean you up a bit.”
“What do I have to do?”
“Step over to the bathtub.”
“I don’t want a shower. I’m cold.”
“I’m sorry, Mom. Sit down.”
“Now what?”
“Slide over.”
“I can’t.”
“Sure you can, Mom.” (I help slide her over.)
“What do I do?”
“Lift your legs over the bathtub.”
“I can’t.”
“Sure you can, Mom.” (I lift her legs over the bathtub.)
“Now what.”
“I’m turning on the shower.”
“I don’t want a shower.”
“Feel how warm the water is?”
“No it isn’t. I’m cold.”
“Here’s the washcloth, Mom.”
“What do I do with this?”
“Put some soap on it.”
“Where’s the soap.”
“Right here.”
“Now what?”
“Put the soap on the washcloth.”
“I hate this. I’m cold.”
“I know.”
“What should I do?”
“Wash your face.”
“With the washcloth.”
“I got soap in my eyes.”
“I’ll help, Mom.”
“There’s still soap in my eyes.”
“How’s that?”
“But I’m cold.”
“I’m sorry you’re cold.”
“Now what do I do?”
“Wash your neck.”
“Will you do it, I’m tired.”
“I’ll wash your back. How’s that?”
“Brrr, it’s cold.”
“The water is warm, Mom.”
“I’m cold.” (All this time the heater is blasting and I’m sweating.)
“Sorry, Mom.”
“What’s next?”
“Your arms.”
“What about my arms?”
“You need to wash them.”
“What’s next?”

And so on, and so on, and so on.

Finally everything is washed and clean.

“Okay, Mom. Let’s get you dried.”
“What do I do?”
“Just sit there for a minute.” (I dry her hair, and face.)
“That feels good, but I’m cold.”
“We’re almost done, Mom.”
“Hurry up, I’m cold.”
“Okay, Mom.”

We take the next ten minutes getting her off the bathtub chair, out of the bathtub, and standing.

“Now what?”
“Now we’re going to dry you and get you dressed.”
“Thank God. I’m freezing.”
“You’ll be warm soon, Mom.”

Now here we are an hour into the day and we’re just beginning to get dressed and we’re still in the bathroom.

I won’t bore you with the remaining 7-8 hours Mom is up during the day, but I think most people can get a pretty good idea of what a caregiver goes through in just one hour. Multiply that by how ever many hours the loved one is up and awake and maybe you’ll have an idea of how exhausting a “good” day is.

For those who ask what a caregiver does all day, maybe they should buy the book, “The 36-hour Day.”

The next time someone flaunts their work schedule at me and sarcastically asks me what I do all day, I should use the answer those on the Alzheimer’s Association site use: “I sit around doing nothing but eat bonbons and party all day. What do you do?”

But no, that would be me causing a problem, so I’ll just hang up!

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Blogger >'' said...

Oh, Joanne. I had to read this to son. We kind of know how it is but the conversation -

Wow. It just put us there.

((hugs to you and Mom))

I hope you have a mild winter this year.

9/30/2007 8:41 PM  
Blogger Joanne D. Kiggins said...

Hi Unique, I'll bet Rain's head is spinning after reading that to him. Poor kid. :) I figured an hour was good for an explanation; the whole day would have taken up too much cyber space.

Thanks for being there for me. You're a truly wonderful friend.

(HUGS) to you and Rain.

Oh, I'm hoping for a mild winter, too. But Mom and I will plow right through it, just like we do every day. ;)

9/30/2007 9:41 PM  
Blogger Lori1955 said...

Wow I remember these days. With me it was getting Helen on the toilet. It took 20 minutes each time. This is my first visit to your blog. I love it. Have a lot of reading to do. LOL.

10/01/2007 7:24 PM  
Blogger Joanne D. Kiggins said...

This comment has been removed by the author.

10/01/2007 10:51 PM  
Blogger Joanne D. Kiggins said...

Lori, It's wonderful you visited my blog. I'm so happy you love it. I've really appreciated your openness about your caregiving of Helen and look forward to reading your blog on a regular basis.

((HUGS)) to you. You were her Angel, and I'm sure she loved you very much.

Hope your days are getting easier. I think of you often.

10/01/2007 10:54 PM  
Blogger ~Betsy said...

Joanne, this is too familiar!

You do a great job with your mom and your patience is a gift.

{{{{{hugs}}}}} to a fellow western Pennsylvanian!

10/02/2007 7:14 AM  
Blogger Joanne D. Kiggins said...

Thanks, Betsy. Good to see you again. Hope all is well is your house today. ((HUGS))

10/02/2007 1:59 PM  
Blogger Cinnamin said...

Sounds VERY familiar!

Don't you just LOVE that question?!?

I enjoy your blog - Thanks for sharing!

10/02/2007 9:00 PM  
Blogger Joanne D. Kiggins said...

Nice to see you, Cinnamin. Thanks for visiting.

10/03/2007 7:21 AM