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.”
“Already!”
“Yes.”
“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?”
“Yes.”
“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.”
“Where?”
“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?

“Where?”
“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.”
“How?”
“With the washcloth.”
“I got soap in my eyes.”
“I’ll help, Mom.”
“There’s still soap in my eyes.”
“How’s that?”
“Better.”
“Good.”
“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!

Alzheimer's -- Living Day by Day, Moment to Moment

In my last post, I showed you pictures of my daughter’s visit last weekend. Those were the good points of the visit; snap shots of family members who drive for hours to visit Mom and me once a month with hopes that she’ll remember them just a little bit longer.

With Alzheimer’s Disease you never know from one moment to the next what your loved one remembers, or what they don’t. You can only hope that each day as a caregiver you’ve made them comfortable, given them the loving support they need to live with dignity, and pray that when they wake in the morning, they remember who you are. And when the day comes that they ask, “Who are you?” you pray for the strength to hold back the tears and answer.

Even as often as my daughters Angel and Stacey visit, my mom didn’t recognize my daughter Stacey this past weekend. Mom watched her as she talked, spoke to her as if she knew her, then, she asked, “Do you have kids?” Stacey smiled, and without hesitation said, “Yes, two. My daughter, Trinity, is seven, and my son, Quenton, is two.” My heart ached for my daughter because Mom didn’t know her; my daughter’s heart ached for her grandmother’s memory loss, rather than for herself.

I’m proud of both my daughters, for understanding the disease, for taking the time out of their busy schedules and making it a point to travel four hours to visit, and for being the loving daughters and granddaughters they are.

It’s sad watching my mom’s mind fade. I see a piece of her slip away each day. I miss my mom; the vibrant happy woman who was always so excited to see her grandchildren and great-grandchildren visit; the woman who talked to me, mother to daughter, for hours; the woman who gave me life and loved me unconditionally. Yes, my mom is still here, but the person she was is gone.

She moves slower and slower each day. I dress her in the morning; get her situated in her chair at the kitchen table, talk to her while I make her breakfast, and watch her expressions to tell me what kind of day she will have. If she has difficulty finding her mouth with the utensils, I know she’s having a bad day. Though she’s overweight for her size, she’s not lost weight with her diminished appetite. She struggles to get out of her chair and I come to her aid. She ain’t heavy, she’s my mother.

Mom’s always tired by 4:00 PM, but I’ve noticed in the last week that she seems more exhausted than usual. Less talkative and less aware of her surroundings. The intermittent memories are no longer coming back to her. Out of sight, out of mind.

Yesterday morning we were sitting in the living room and I noticed her frown as her eyes scanned the many pictures on her bookshelf. I didn’t need to ask if she knew the people in the photographs. The wrinkles in her forehead told me she wondered who they were. I stood up, walked to the pictures, pulled them off the shelf, and took them to her. I handed her a photo of my dad. She knew Dad. The next two photos were of her grandson, his wife, and two daughters. She had no idea who they were. The next picture was of my brother, her oldest son, and his wife. She said they looked like someone she knew, but she didn’t know who they were. The next picture was of my second brother, her son, and his wife, but she didn’t know them either. The next picture was a four-generation picture taken five years ago with her, my two daughters, my granddaughter and me. She knew herself.

I placed the pictures back on the shelf and prayed for strength in handling the next stage of Alzheimer’s disease.

When my mom didn’t recognize my daughter last weekend, I thought Mom slipped to a new stage in the disease. When she didn’t recall the visit after a reminding prompt, I knew.

We moved from the living room to the kitchen for an early lunch. She looked around as she sat and said, “Dad built those cabinets. I remember because you told me he did.” I answered, “Yes, he did. He was a wonderful carpenter.”

I turned to smile at her and saw her eyes filled with tears and her chin quiver as she struggled to speak. “Was? You mean he’s gone? Did he pass away? When?” As she sobbed, I knelt next to her chair to comfort her. I held her, wishing I could do more than apologize for not realizing she didn’t remember he was gone. “I thought he was at work,” she said, as I dried her tears. My dad passed away nine years ago. Last week she remembered that. Today, she didn’t.

My brother called and said he was coming to visit. When he walked in the door, I knew she didn’t recognize him. I asked her if she knew who he was. She said “no”.

That was yesterday. Today was not better.

I woke up Mom as I normally do every morning, placed her clothes on the bed, and walked her to the bathroom. Before we made it to the bathroom door she began to sob uncontrollably. I sat her in the kitchen chair and asked her what was wrong. Her words shocked me. “I’m dying,” she said. My mom never speaks of death and if the subject is ever brought up, she changes it. For her to say she’s dying was an utter shock to me. “Why do you say that, Mom?” I asked. Her answer was short, quick, and heartbreaking. “Because I am. I can feel it, and I’m scared.”

I did the only thing I knew to do, hug her. And I responded with the first thing that came to my mind, my dad.

“Mom, don’t be afraid. When it’s your time, you’ll be with Dad again, and that’s something to look forward to.”

“You’re right,” she said. “I never thought of it like that.”

She dried her tears and we continued with our day; getting her shower, getting her dressed, and getting her breakfast. The day continued on a similar note with her watching me in the same way she watched my daughter last week. She talked, constantly asking questions; she asked about her house, how long she’s lived there, where was my husband and why doesn’t he stay here with her and me, and she asked if I’d be okay when she died.

“I’ll be okay, Mom. Don’t worry about me.”

As the day progressed, she regressed, and by 4:00 PM she was once again exhausted. She wanted to go to bed earlier than usual, and after the rough weekend we’d had, I was inclined to agree, so we started our bedtime routine.

Every night for the past three years my mom has said the same words to me as I dress her for bed. “Thank you, honey, for staying with me and taking care of me. You’re a wonderful daughter and I love you.”

Tonight, she didn’t say those words.

Tonight, she asked, “Who are you?”

I bit my lip, held back the tears and said, “I’m your daughter.”

Her eyes brightened and she gasped, “You’re my daughter. That’s wonderful!”

“Do you know my name?” I asked.

“No, will you tell me?”

“Joanne. My name is Joanne, Mom.”

“That’s a beautiful name. Did I give it to you?”

“Yes, Mom. You did.”

I hugged Mom, kissed her, and tucked her into bed as usual.

“I love you, Mom.”

“I love you, too. You’d better get some sleep. You’re going to need it,” she said.

“Good night. I’ll see you in the morning.”

“I don’t think so. Get some sleep. You’re going to need it,” she said again.
I kissed her forehead and walked out of her room repeating, “I love you, Mom. Good night. I’ll see you in the morning.”

Since then, for the past six hours, I’ve been sitting in my room upstairs, in deep thought-- a sort of stunned, dazed frame of mind. Each day for three years I’ve never known what the next day might bring. We’ve lived day by day, moment to moment, not knowing what the next moment might be like, but I’ve cherished every moment I’ve had with her.

I don’t know what tomorrow might bring, but with her strange discussions this weekend, I do know I’ll be staying close to her side, rather than listening to her breathing come through a baby monitor in my room.

For her sake, when it is her time, I pray she passes peacefully in her sleep. And when she does, I know she’ll be in a better place and she’ll be okay.

I didn’t have the heart to tell her, I won’t.

Good night, Mom. I love you. I’ll see you in the morning.