More MS news articles for September 2000

Relatives define 'care' and 'giving'

By CAROL WERSICH, Courier & Press staff writer
(812) 464-7452 or cwersich@evansville.net

Vincent Pugliese/Courier & press

Peggy Jeffers holds up a glass so her daughter, Marcia Jett, can drink. Jeffers cares for Jett with the help of a visiting nurse. Jett was diagnosed with multiple sclerosis 28 years ago. The disease progressed, and Jett lost the use of her hands two years ago.

TEN LEADING STATS ABOUT FAMILY CAREGIVERS

  1. There are an estimated 25 million family caregivers in the United States. That's about 10 percent of the adult population.
  2. The caregivers provide two-thirds of all home-care services in the nation.
  3. The market value of their services is more than $190 billion a year.
  4. Eighty percent of all the caregivers are women.
  5. Seventy percent of the caregivers are betweeen 40 to 59 years of age.
  6. Sixty-five percent don't receive any help from other family members or from friends.
  7. Sixty-nine percent rate frustration as their most frequently felt emotion.
  8. Loss of leisure time, a change in family dynamics, and feelings of isolation are leading burdensome aspects.
  9. Virtually one-half of all the family caregivers have periods of prolonged depression.
  10. More people enter nursing homes because of caregiver burnout rather than because of a worsening of their condition.
Sources: National Family Caregivers Association and Illinois Chapter of the Huntington's Disease Society of America

IF YOU GO

The Sept. 13 Caregivers Conference is free, but reservations are required
for a continental breakfast and lunch. Call (800) 253-2188 or 464-7800.

The most overwhelming but one of the most rewarding task many people will ever face is caring for an ill relative full time in their homes. Often without notice, the caregivers are forced into the task without experience. A relative becomes ill and debilitated but wants to remain at home.

Out of necessity, the caregivers generally become quick learners in a variety of tasks.

Those who do it say their deep love for their ill loved ones is what gives them strength. They wouldn't have it any other way.

But caring for someone 24 hours a day can take an emotional toll. By day's end, the caregiver may feel completely wrung out, physically and mentally, and extremely exasperated and alone.

Officials of the Southwestern Indiana Regional Council on Aging hope to make the load of area caregivers a little lighter. It will sponsor a free Caregivers Conference from 10 a.m. to 2 p.m. Sept. 13.

Area professionals in health care will discuss assisted-care living and nursing-home placement.

Caregiving is something one must experience to fully appreciate the anxiety, hard work and pride. It is an experience that drastically changes lifestyles.

Here are the stories of three Tri-State women who are unbegrudgingly the chief caregivers to ill relatives in their homes.
 

PEGGY JEFFERS, a 76-year-old retiree from the Southwestern Indiana Mental Health Center, cares for her 54-year-old daughter, Marcia Jett, a former receptionist at the VNA, at Jett's far East Side home.

The daughter, who has severe multiple sclerosis, is mostly helpless physically. She spends most of her time in bed or sitting in a chair.

Here is Jeffers' story:

I always thought I wanted to do volunteer work when I retired. I just always thought I'd do a lot of visiting with friends and relatives, too.

I had expectations, but I've made adjustments. Since retiring in 1996, I've been caring for Marcia full time.

At first, it was frustrating caring for my own child. I cried easily. I didn't have control.

I'd get angry, and that made my job harder - and it made things harder for Marcia.

It took a long time for me to settle into a routine.

It's really important that situations are as normal as they can be for Marcia's mental health. But I live Marcia's life - not mine - so much of the time that I really have to struggle to keep things normal-like.

I used to feel guilty if I couldn't accomplish everything I wanted to accomplish. I wanted to do things for Marcia all the time. I felt obligated.

Now I'm a little more relaxed. I no longer feel guilty. I can't afford to let myself get really depressed.

I have to give a smile when Marcia needs one, and vice versa. Every now and then I lose it, and I get really sassy.

(Marcia nods her head in agreement and smiles.)

When I worked and Marcia was growing up, I was away from her a lot. Maybe I'm making up for that now.

(Marcia, whose voice is weak, says softly, "She's more than made up for  it.")

I must use a lift (mechanical apparatus) to get Marcia in and out of a chair. I also must feed her... .

Karen Mills, Marcia's visiting nurse, is so supportive I feel as if she takes care of me, too.

Getting outside to care for Marcia's flowers helps me a lot. It's an outlet. Just put me in the flowers, and I'm happy.

Neighbors and friends volunteer to help. And the Council on Aging provides me with a sitter so I can get out for groceries and to go to the bank and to take care of other business.

Marcia never complains or fusses about anything - not even leftovers for dinner.

Faith carries me.