When I first arrived home from the rehab hospital (Rancho Los Amigos) I lived with my two sons, age 9 and 12. My sons over the household tasks without complaint. They weren’t accomplished at housekeeping but they soon learned.
Over the years, my methods of coping have changed many times. At first I relied on my son to a great extent. I continued to cook full dinners quite often.
Daughter Julie was deeply involved in debate at Bakersfield High School which took hours of study. She pretty much left us on our own. She stopped in for a change of clothes and a night’s sleep but otherwise not involved in our lives. I was hurt my her behavior, but was to learn there was much more to what was going on with her.
Time passed, they grew up, married and began their families. I struck out on my own. Fearful and hopeful all at the same time. I really enjoy living alone. I have company when it suits me. Most of my time is spent reading, listening to music and writing online and working on the family story.
Today I live alone with Poppy, an elderly Yankee (aka known as Maine Coon) cat in a small condo built all on one level. The condo has two bedrooms and two bathrooms. I sometimes think it is a little larger than I actually need. But since my injury my list of hobbies has grown, as has my library. The extra bedroom and bath are useful when friends and family members stay overnight.
Most of the day-to-day cooking and picking up is done by me. Lest I mislead you, I don’t cook much.
FINDING A HELPFUL CLEANER
One day a week I have a few hours of help with the cleaning. My helper is well-organized and thorough. She does the laundry, cleans all the surfaces, hangs my clothes in the closet and makes the bed. I keep a list of special needs and we usually accomplish those in quick order. Without this weekly help, living alone would not be possible.
It took several years to find the right person. What sets her apart is her sensitivity to my special needs. So many cleaners wanted to do for me only those things they did for the able-bodied. I had tried many different helpers before finding Maria.
Even when I explained my special needs, many of the “cleaners” were unresponsive. I just kept trying out new help until I found the person who worked out. In this situation I simply had to be sure my needs were met. There was no room for flexibility on my part.
In other words, when hiring a helper, selfishness is required. The helper must acommodate me … do things as I need them done.
A few years into this, it occurred to me that I got along better with fewer gadgets and devices. I eliminated all but the essentials. People are suggesting I get this or that, but life is easier with less.
The bedroom is equipped with a memory foam mattress pad on a double bed and two sliding boards used to make transfers into bed easier. A trapeze helps me position myself in bed … a device I can’t do without.
A FULL-LENGTH TABLE
There is a full-length table next to the bed to hold my sleep apnea machine, the machine for my asthma aerosol applications and the blood pressure device used daily to record my vitals. My meds are kept in a couple of vintage stationery boxes I found on eBay. The bedside small chest holds a touch lamp and two plastic water bottles with straws .. for drinking water at night.
CELING FANS AND OVERHEAD LIGHTS
The ceiling fan/light over my bed is another essential I’d have a serious problem doing without. Two cords allow me to turn it on as needed. Everyone uses clickers for electronic devices … here they are a must.
COTTON BEDSPREADS AND DOWN COMFORTERS
An old, very soft down comforter with a heavy cotton bedspread (an eBay find) keep me warm and comfortable. The cotton bedspread is heaven-sent as it is necessary to wash all my bedding often. My legs are always cold or very cold when I go to bed in the winter. (Also, sometimes in the Spring and Summer.) A vintage Pendleton lap throw (another eBay find) goes over them until I warm up, then I toss it onto the table next to the bed.
FOAM LIFTS AS CIRCULATION AIDS
Only a couple of years ago, I discovered foam leg lifts which come in handy aat bedtime. When I am ready to settle in, I put each leg into the lift and roll up a thick towel to put under my thighs. The lifts help the blood get back to the heart.
Other devices to make life easier: a bath device attached to the bathtub, lots of tongs (reachers or grabbers) a telephone in every room, plus a mobile phone. Several extra wheelchair cushions are in the closet.
Found two wonderful eight-sided wooden trays on eBay which work beautifully when I am cooking and cleaning in the kitchen. The 10.5-inch tray is the most comfortable on my lap. The bottom of the tray which comes into contact with my lap is covered with felt, which means i only drop it occasionally. (Smile.)
Throughout, most of the lights and lamps operate on wall switches or cords with a switch in easy reach.
Perhaps the most essential single piece of equipment I use is the TRANSFER BOARD. The staff at Rancho taught me to use a wooden board, but a few years later a friend bought me a sturdy plastic board. I always own at least two. The plastic boards are strong and will take lots of use, but I’ve had two break. Constant years of use by a 150-pount woman apparently wore them out.
Twice I’ve had long hospitalizations. When I was at last able to get back into the wheelchair to gain strength for going home, I found I’d forgotten how to make the transfer. Since I am a complete spinal cord injury, my bottom thought there was nothing under me when I tried to move onto the board. It took real effort to overcome the powerful instinctive fear of moving from the bed to the board.
HOW TO BEST USE A TRANSFER BOARD
The transfer board helps me get into and out of bed, get into the chair at the dentist and the beauty shop, etc.
Transfers are IMPOSSIBLE with a bare bottom. Talcum powder on the board makes the transfer easier. I like to dress in dresses with long skirts. They seem to make the smoothest transfers on the board. Pants are okay for transfers, but take too much energy to struggle into.
In all those years, I’ve never fallen while using the board … transfer boards are safe … if you are careful.
Getting into a car is difficult, some cars more than others. Usually there is a big strong son around to help me in. Sometimes it takes pushing, sometimes pulling. A helper should use his/her arms in a crooked position so they don’t put the full weight on their back. Always grab the little bar up inside the car. It helps you keep your balance. The bar allows you to do most of the pulling yourself.
Removing the wheelchair front legs makes transfer to a car easier Remember to protect your feet while transferring.Be sure the car seat isn’t too hot or cold. I put a towel over the seat if I’m worried about the temperature.
FINDING AND USING TONGS
Navigating through the day in a wheelchair usually gets you where you need to go. Then someone puts the object you need, — just out of reach. The toaster is just out of reach. The mailman drops the newspaper through the door mail slot onto the floor or the softener sheets are neatly placed on the shelf just above the dryer — just out of reach.
Amazon offers grabbers and tongs which can be ordered by mail at Amazon.com. It ships fast at a reasonable cost and in my experience is reliable by any measure. They are ordinary kitchen tongs about 10-inches long work very well to reach things which are close, but not close enough — handy for getting the jar at the back of the frig or the pepper grinder at the back of the kitchen counter.
The 34-inch reachers or grabbers are handy for other tasks. The best-named, sturdiest grabbers I’ve run across are Nifty Nabbers made by UngerGlobal.com. They are heavier than my 31-inch PikStik, so I alternate between the two depending on the object’s weight.
Pikstik (my choice is about 20-inches long) is always at my side, propped against the foot of my wheelchair. A pair of tongs are found any place they might come in handy. It save so much time in the course of a busy day. Extra grabbers or reachers in my closet as they do sometimes break or get lost.
Send questions to Sofiea