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The Most Important Tool Is Love

Gizmolove's Story

I remember one particular day in mid-spring when I was growing up. The sun was out and the birds were chirping and all seemed right with the world.

Except in my house. Because my mom had Alzheimer's Disease.

The day started like any other -- up with the sun. But I was tired because I hadn't gone to bed until almost midnight, as usual. Mom was restless at night, she was restless during the day, she never let me out of her sight. This made things pretty difficult for me because mom was bedridden and I had to fix her meals, wash clothes, and keep the house, too.

"The morning went on this way for what seemed like weeks"

This particular morning I had gotten her up to go potty on the portable pot, and used this chance to put on clean bedding. I did a little sponge bath while she was on the commode, and slipped on a clean nightgown. Once I had her back into bed fresh and powdered, I went to fix her morning milkshake. She was at a point where swallowing pills (and boy she had a lot of them) was just not practical, so I ground most of them up and added them to a cup of milk shake, along with some doctor-approved weight-gain powder. She was losing weight so fast and the more she lost, the frailer she became.

Along with the shake I fixed her cereal, toast, and fruit and took the tray to her room. Some days I could leave her alone to eat but this was not one of those days. I had to coax every bite into her. I couldn't even sneak out to do the morning dishes or check up on the laundry or get my breakfast. She required full care today. Each time I left her room, even for a minute, she screamed and hollered for me to return.

The morning went on this way for what seemed like weeks, but I had accomplished a lot in just a few short hours. My mother was clean, her bed was clean, and she'd had her breakfast and her morning pills. Her arms, feet, and legs were creamed (to prevent skin tears), and as was our morning and evening custom, her hair was combed and face washed. I adjusted the TV for the 30th or 40th time that morning and she was fed, so it was time to brush her teeth and put in her eye drops.

Meanwhile, I was continually nagged about getting those sheets into the dryer and getting the dishes done, which had by now started their own country. Yet each time I left the room she called me back because she feared being alone. And each time I asked, "What do you need?" she would make up some excuse, just to satisfy my question. I just had to go potty myself, or put up her breakfast tray, or attend to those sheets, or get a bite to eat myself, but each time I left the room she called me back in.

Changes

Finally it happened. I was readying the noon meal and had been summoned to her room for what seemed the gazillionth time, when I just lost it. I slumped into the chain in her room and grabbed one of my aching swollen feet, cradling it in my lap. I pressed my back into the chair (I just know it's broken, it feels broken) and glared at her.

"What the hell do you want this time?" I said in a slow, menacing voice.

"I saw at that very moment that she wanted so hard to please me"

This question set in motion a rapid cascade of things. My mother looked at me quizzically, then opened her mouth. She saw my hostile expression and tried to explain herself, but all she could do was offer some sputtering that sounded much like a stalled train. But I could see the wheels in motion -- what would it be this time? Change the TV? No, that was worn to death. Perhaps she had a hangnail or needed a blanket or wanted more milkshake or maybe I had forgotten the straw or she was just plain thirsty. Maybe she needed to use the potty by the bed again, or maybe she was too hot or too cold. She sputtered and stammered, trying to think of some way to satisfy my question, but you could see that nothing would come to her poor, dear brain. The more she looked at me and stammered, the more she noticed my stern expression, and the more she sputtered like a kettle coming to boil.

Realization

She looked so cute sitting up in bed, all clean, with her hair brushed and face freshly washed. She looked like a little girl, trying to tell mommy or daddy why she did what she did and she was having such a hard time coming up with a viable excuse. My eyes softened then, and my heart became so full of love for her. I saw at that very moment that she wanted so hard to please me. Oh, it wasn't me, of course, she really didn't know who I was anymore. Sometimes she'd call me nurse, and sometimes I was "Kay" her last caregiver, and sometimes she'd call just "hey you." But she wanted to please me, like she would anyone. She was so dependent upon the charity of others, so completely helpless.

She noticed then that my face had softened, and that my eyes had changed. The stern look was gone, replaced now with love and shining so brightly to see her sweet struggle. I smiled, with just a hint of laughter in my eyes. She studied me for the longest time, and then she looked very puzzled. She started to form the words and she finally answered my question, with a question of her own.

"Do you like me?" she asked.

"No mom, I don't 'like' you, I love you, I love you very much!"

"You do?" she said.

"Yes momma, I love you so much!"

I got up and went to the bed and sat down beside her. I held her tiny little hand and brushed her hair back with my fingers. A smile lit up her frail face, and you could tell she was truly happy that someone cared for her. I sat there for a while and held her hand, and told her that she meant the world to me. All she really said was she was "so glad."

I moved my chair next to the bed and held her hand for a while and we watched cartoons together. She seemed at peace just to watch the TV for a change. I don't think she ever really watched it, it was just background or distraction.

"Many times I fondly look back to that day, to the day when I found out the secret to caregiving"

So we sat there watching a Road Runner cartoon as if it were the current James Bond movie, and we laughed together. As I walked into the kitchen to fix mom's lunch and my breakfast, I noticed the birds in the backyard for the first time and how bright the sun was. I worked undisturbed in the kitchen for more than 20 minutes and managed finally to get the sheets into the dryer. I brought in mom's lunch tray and said, "I'll get my lunch and we'll have lunch together, in here." Mom replied with a "That's nice, dear," and we had a fantastic lunch and it turned out to be a very wonderful day.

Looking Back

That was four years ago, and mom's gone now. But many times I fondly look back to that day, to the day when I found out the secret to caregiving. You can get all kinds of pills. Some for depression, and some for anger, some for anxiety, and others for sleep. Pills for psychosis and pills for hallucinations and aggressive behavior. But the most important pill of all is love. Love does more than make the "world go around," it makes life manageable, and sometimes, bearable. When all else fails, try love, and a little kindness. Sometimes it's the only medicine that works. Sometimes it's the only medicine you'll ever need.

I know firsthand how very difficult it is to care for someone you love with Alzheimer's or dementia. Every case ­ every person ­ is different and so each situation has its own set of difficulties. But I'm a firm believer in love. That spring day convinced me of that.

Tools

I went to a caregivers meeting recently. One thing covered there was the "Caregivers Tool Belt." It works on the theory that all caregivers should have a variety of tools in their proverbial belt to fall back on. You can find which tools work best by trial and error. Sometimes distraction or redirection does wonders, and another day a calm and positive attitude turns things around. Fear and anxiety are a common problem with people with Alzheimer's and in this case the tools you'll need belong to a teacher. A steady demeanor that explains each step and then helps the patient through those steps.

But of all the tools in the caregiver's belt, I don't think you will find one more powerful than love. It truly is the one thing that conquers all. It will turn a harried day into a flower-smelling and bird-watching day. And, it can change a long, impossible day into a tiny vacation.

Sometimes, all any of us need to make us feel better and more cooperative, is to know that someone loves us. To know that someone cares. To feel loved and to feel safe and secure is sometimes the most important thing in the world. Try to keep a good supply of love in your tool belt.

It will bring out the sun.

The member story above may have been edited for clarity.

From WebMD: One in four Americans -- about 54 million people -- function as a family caregiver, according to a survey by the National Family Caregivers Association (NFCA).

Another NFCA survey reports that some 60% of caregivers say they experience depression, with the rate even higher -- up to 76% -- among those caring for loved ones with dementia, such as Alzheimer's disease.

Add to this the fact that half of all caregivers also work outside the home and it's no wonder caregivers so often need respite and support before the demands and constraints of caregiving become overwhelming.

Take care of yourself, not just your loved one. If you're a caregiver, call your county's Area Agency on Aging for information and referrals to local programs, such as Meals-On-Wheels, adult day care centers, in-home health aides, and transportation assistance. Some programs even help caregivers with home repairs or offer friendly visitors who stop by occasionally. Hospital discharge planners, doctors, and nurses can also refer caregivers to helpful programs. And, of course, caregivers should look for counseling and support groups for themselves, as well.

If you don't take care of yourself, you can't take care of your aging parent or spouse.

"From WebMD" is taken from previously published WebMD content and has been medically reviewed by WebMD physicians.

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