Caregiving forces priority-listing

Ms. Ross is an adjunct music teacher at Hartwick College in Oneonta, and a cantor, singer and substitute organist at St. Mary's parish there. She is also a full-time caregiver for her father, Joe, who has Alzheimer's disease -- and cared for her mother, Mary, until she died last year.

"Caregiving is bigger than I thought," she said thoughtfully, surveying a living room in which a hospital bed is the prominent feature. "It's having a sick child and mourning the loss of them while you're doing it -- but you don't get the time to grieve."

Day at a time

Until 1991, Ms. Ross was an active, single woman with her own house. Her parents were estranged from one another, living in separate homes in the same town.

Ms. Ross moved in with her mother temporarily to help her recover from gall bladder surgery. One day, her mother had a severe headache. When Ms. Ross noticed her mother's hand was limp, she realized it was actually a stroke.

Reconciliation

Ms. Ross, vehemently against placing her mother in a nursing home, brought her home -- and her father, whom no one yet suspected of having Alzheimer's, moved in as well.

With the contents of three houses packed into one, Ms. Ross learned to feed her mother through a tube, change diapers and dispense medication. She also tried to teach music students in her living room.

"It was a zoo!" she told The Evangelist. "My father, my mother, the students, the caregivers."

Commitment

"I wouldn't let Mom go to respite because she'd get a bedsore, and I'd have to spend six months fixing it," she explained.

Only another caregiver would understand her situation, Ms. Ross said: "I became a prisoner in a way, because you become so isolated. When my mom was really bad, I couldn't even talk on the phone. I ended up with cellulitis in my leg twice because I had to stand in one place to feed her."

Still, caregiving gave her an appreciation for the little things in life. When fellow parishioners from St. Mary's helped as best they could, "you notice that when someone does something even small, it means so much."

Turn for worse

"I would be at school, and he would be rearranging the freezer [or] digging up the plants I had just planted," Ms. Ross recalled. "I thought he was being manipulative."

While she can't remember what made her realize her father had Alzheimer's, she said that eventually, the caregivers who came to help with her mother while she taught had to keep an eye on her father, as well.

Final days

"We knew we didn't imagine they had this reconciliation. God really did this," she said. "I know now no matter how bad things get in my life, God can do absolutely anything."

After her mother's death, Ms. Ross' father began to spiral downhill. She believes that he was able to become needier "when the spotlight was on him."

Help from others

Today, a helper takes Mr. Ross to adult day care and brings him home while Ms. Ross teaches. She is grateful for that help, for the fact that she has been able to keep her job, and for "the people who sit with my dad during church services. I can count on those people, so I don't have to think about it."

For the first time, Ms. Ross is planning a week of respite care for her father so that she can clean her house and take some time off.

Otherwise, she said, "you are alone with the responsibilities. You wear out your friends if you tell them too much. I know other caregivers I can call sometimes, but other people don't understand. They say, `Why don't you put them in a nursing home?'"

Frustrations

What's most frustrating for her as a caregiver, said Ms. Ross, is that "I let my [music] pupils down. I can't be the same person I used to be. I can't give my full attention."

She advised anyone who wants to help a caregiver to simply take notice of their needs: A flower delivered to a bedridden parent can brighten someone's day; sitting with an ill person for an hour can relieve a caregiver who has no time to run everyday errands.

As Catholics, Ms. Ross declared, "we're not just supposed to meet for Mass once a week. We're supposed to notice each other's needs and respond to them."

Lessons learned

Mr. Ross, who had been sitting quietly during the interview with his daughter, seemingly asleep, decided to play a tune on his harmonica. Ms. Ross laughed when she heard the first few notes.

"Do you know what that is?" she said. "`There's No Place Like Home.'"

(05-24-01) [[In-content Ad]]