A DAY IN THE LIFE OF A CAREGIVER

I wrote the following during my twenty-three years as a caregiver. My husband eventually died of progressive supranuclesar palsy in 2000. Since then I've written a memoir of our life together, "DREAMS INTERRUPTED", to be published later. The following is a excerpt from that memoir.  

A DAY IN THE LIFE OF A CAREGIVER.

Seven a.m. What will today bring? Will my husband get up when I call or will I need to plead while standing by his bed holding his robe? He often has difficulty finding the sleeves. His robe is finally on and his slippers placed in front of him. I ask him to remain seated while I go into the bathroom to turn on the lights. He may or may not remember my request. His blood presure may drop suddenly, causing him to faint. He has been hospitalized five times since January. It is now June. Will this be the morning he faints or loses his balance?

I wet and comb his still beautiful, thick, partially gray hair. He looks sixty-five. I hold his arm to steady him as we walk from the bedroom, through the living room to the kitchen for breakfast. I hold his arm lightly as he eases his six feet, 150-pound body onto the side of the chair. He stays in that position until I tell him to move to the middle and pull up to the table. This may take two or more attempts.

His numerous pills are in their usual little dish slightly above and to the right of his plate - within his right field of vision. (He has a left visual field block from the stroke.) 

He doesn't talk. I tune into the Today Show on the small kitchen television. The coffee pot has bleeped its last perk. Finishing touches are added to breakfast and served. I unfold his napkin and place it in his hand. Will he put it on his lap, or leave it on the table?

I remind him to take his pills. If lucky, he'll put a couple into his mouth. Or he might pick up his coffee cup insteasd of the pills. I stop him to remind him "pills first". The scene repeats itself until the pills are gone. From his left, I watch to be sure the pills make their journey to the proper place instead of on the floor. Good job. He eats his cereal with sliced bananas. I move his toast to the right side of his plate. The coffee pot is turned off, as is the TV. Dishes are cleared from the table.

After a few attempts at getting up, I tell him, as I do at every meal, "No, don't use my chair to hold onto; it may slide." I gently take his arm and place his left hand on his left knee for leverage. He makes it up, steadies himself, and walks toward the sink. The door is on his left. I wait. He finally gets his bearing and turns left, holding onto the doorframe. I assist him back through the dining areas and living room, around my desk and into the bedroom.

In addition to grab bars, it's now necessary to have a chair in the shower for safe bathing. (The inventor of the hand-held showerhead has my undying gratitude.) He holds his body very rigid. It's like trying to manually maneuver a robot. He holds his head down while I shampoo and rinse his hair. I bathe him in whatever position he wants - however I can.

His clothes are laid out on the bed in the proper order, everything on his right. Will he be able to dress himself? Yesterday, he asked for help. I stifled a laugh when I saw he was trying to put on his shorts over his head. I place them over his feet. He often puts his undershirt on backwards, or he can't find the sleeves of his shirt.

Dressed, we return to the bathroom where he is seated on a stool. His hair is blow-dried and combed. He attempts to shave with an electric razor while I brush my teeth. I shave what he has missed and trim his mustache, or clip his nails.

He's now ready for a couple hours of music or television. I lead him to the living room and his favorite chair with our poodle following at his heels. His lap is covered with an afghan. He thanks me. 

I return to my grooming, and tidy up the bathroom and bedroom. If not already too tired, I may set the timer for an hour and paint.

Lunch is prepared and the table scene repeated. He and the poodle again settle into his chair for the afternoon. I ask if he wants TV or music. He says he doesn't care, which is his usual reply.  So, why do I continue to ask? Because it's the caring thing to do.

Back in the kitchen, I put the dishes in the washer and tidy the counter and sink. It's now 12:30. I zap a cup of decaf coffee left over from breaskfast and take it to the den for my daily escape into the world of the Young and Restless. I like the title - young and RESTless. I find Victor aned Nicki's problems boring and mundane, but they give me an excuse to sit down and do nothing for a short while. I sit on the far end of the sofa where I can see my husband through the doorway. If he should start to get up, I can, hopefully, get to him before he falls. My eyelids grow heavy and soon the romantic overtures on the TV become  fuzzy background noise.

An hour later, I shake myself from a stupor and get with the business of laundry, paying bills, or whatever else needs to be done. Two hours later, I suggest a trip to the bathroom to avoid a mad dash. I'm learning ways and means to avoid problems.

After dinner and a repeat of breakfast and lunch, we settle down for an evening of television.

Tomorrow will be as usual except for a CT scan at 4:00 p.m. which means dinner will be later than usual. I welcome the change in routine. How ironic! Our previously exciting social life has deteriorated to doctor and hospital visits. Caring nurses and medical personnel become our link with the outside world.

No longer do I dwell on what if or I wish. I have no time or energy for a pity party or ISS (I suffer so) frame of mind. 

I remember when my husband came to breakfast with a spring in his step and a twinkle in his brown eyes. He would greet me with a hug and sometimes a kiss on the neck, ready and anxious to get to his office. His personality and determination to make everything better for everyone else was a big part of why I loved him. Yes, our lives were very different in the years that were normal, before he had a heart attack and subsequent stroke at the age of 59.

His body and mind continue to show change but our closeness remains the same. My love is sometimes overshadowed by caregiving, getting through the moment, the day, the week, toward an increasingly uncertain future.

Will today be the day another clot forms? Will it be the big one? Like Scarlet O'Hara, I'll think about that tomorrow. Today, I can only deal with the present. When I awaken him in the morning, will there be a response or will it be the final silence? After all these years, will I be able to let him go? 

Note: Since my husband's death in 2000, I have written the memoir and three novels. Man On The Balcony is now published, and a sequel, Maggie's Retreat, as well as the memoir will be available at a later date.  I thought the above excerpt might help other caregivers in their struggle. My secret of survival was love! 

www.mariepinschmidt.com