Family dynamics change when mother develops dementia

Katie runs the vacuum cleaner before Anna is tucked into bed. Vacuuming is a daily chore in Anna's apartment since she is prone to dropping food. Jim McNutt/Observer-Reporter
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BURGETTSTOWN – Betty Brooks began to cry inconsolably, her body shaking, as she stood in the pristine kitchen of her mother's apartment.

Katie Fehl lifts her grandmother, Anna Snatchko, into bed. Jim McNutt/Observer-Reporter
Betty had learned just three days earlier that hospice aides had been instructed to give her 86-year-old mother, Anna Snatchko, bed baths. The directive prompted Betty's brother, Larry Snatchko, to concede that maybe it was time to move Anna to a nursing home.

“If we take Mommy to a home, she's going to die,” sobbed Betty, 55, who has always assumed – at Larry's behest – that Anna would remain at home. “I'd rather she have a heart attack and pass away in her home.”

After a few discussions, Larry, who is Anna's power of attorney, and Betty, who has been Anna's primary caregiver for nearly two years, decided Anna would remain at home.

As a result, Betty changed the schedules of Anna's other main caregivers – Betty's daughter, Katie Fehl, and her niece, Kara Snatchko – because Betty insists on showering her mother. It's been that way since Anna's dementia progressed to the point where she constantly soils herself.

Hospice aides previously assisted Betty with the showers. Now, Betty relies on Katie and Kara if she can't handle Anna on her own. Sometimes, Betty said, it's difficult for one person to get Anna into the shower, particularly when Anna isn't feeling well or is just plain uncooperative. On Fridays, when Betty's sister, Judy Souffrant of Weirton, W.Va., is caring for Anna, a hospice aide will give her a bed bath.

“When they said that, it was like a slap in the face to Betty,” said Larry, referring to the bed-bath order. “We talked it over, and said, 'No, we won't put her in a home. We'll give it a little more time.' Neither one of us wants to see that.”

Anna Snatchko takes a nap before her granddaughter, Katie Fehl, back right, relieves her mother, Betty Brooks, during a mid-morning shift change at Anna’s Burgettstown apartment. Jim McNutt/Observer-Reporter
The reason is simple: The Snatchko family was not satisfied with the care Anna received twice when she became ill and required nursing home care after being released from the hospital. Her diapers weren't changed on a regular basis, and her oxygen remained off for periods of time after Anna had yanked the tubing away from her nose.

“Where they may have the best intentions, things don't always go too well. We did not like seeing her not cleaned up,” Larry said. “Although I can't say that about everyone. There are those who devote their lives to helping people. We've just been unlucky that she's been in places where it's not worked well.”

Anna lived with Larry, 64, for about six months before she moved to the Burgettstown Highrise for the Elderly. Larry's home is visible from Anna's apartment, and when Anna was healthy, she would wave to Larry from her balcony.

“When she first moved in, she lived by herself,” Larry said. “Somebody always stopped in to see how she was doing. She was fine.”

That began to change with the phone calls. Anna would call one of her children, talk for a few seconds and hang up. Ten minutes later, she'd call back, forgetting she had called moments earlier.

Anna's dementia began slowly, Larry said, but then progressed very rapidly. Anna's nine children agreed she needed help, but they didn't all agree on how to proceed.

“I was the first one who said she's not going to a home,” Larry said. “All my brothers and sisters didn't care if she went to a home. Some want this, some want that. Neither wants to meet in the middle. They thought it would be better for her to be in a supervised medical situation.

“Betty and I didn't see it like that. … Judy, she's just fighting it all the way. Betty is the only one left, and wow, I don't know how she does it.

To this day, some of Anna's sons still believe she would receive better care in a medically supervised facility.

No, Larry said, she's already getting the best care possible.

“A couple brothers who have not seen her in two years, they're actually upset she doesn't know them,” Larry said, “and out the door they go. She doesn't recognize any of us.”

Anna, who is incontinent, unable to chew or walk unassisted, requires 24-hour care. Larry shared the burden in the beginning, spending two nights a week at his mother's apartment until he developed chronic obstructive pulmonary disease. Betty has taken over those two nights, in addition to her original four.

“Now I'm laid up and disabled, and Betty has that humongous responsibility,” Larry said.

However, if one of Anna's caregivers must run an errand, Larry will monitor his mother on his computer via a camera the family installed in her apartment.

“She fell down once, and she was down until somebody got over there,” Larry said. “We keep a close eye on her now. It's been like that for quite a while.”

Southwestern Pennsylvania Area Agency on Aging also has been a godsend for the family. With the state's help, Anna receives in-home professional medical care and various incidentals, such as her hospital bed and oxygen. Otherwise, Larry isn't sure how the family could afford Anna's care.

“It's sad,” Katie said. “At this point, if Gramma knew what was going on, she would have told my mom a long time ago to put her in a home.”

But Katie understands why the family has chosen to keep Anna at home, especially after reading one of her mother's books. The book is about a daughter who is taking care of her mother, and it is written in the form of a journal.

“It's hard to let go,” said Katie, the tears starting to stream down her cheeks. “You're never ready to let your mother go. If my mother developed Alzheimer's or dementia, I'd fight to keep her alive.

“It's a horrible, horrible disease for any family to go through. You always wonder if you're doing the right thing or the wrong thing.”

What's upsetting even more to Katie is how it has affected her mother.

“I know how she's struggling taking care of her,” Katie said. “It's hard, and it's always going to be hard. Not only are you taking care of her, but mentally realizing that that's her mom. You can't live in the past. She's never going to be what she was before.

“Gram is the strongest person I know. She led a good life. In all honesty, she'd be much happier in heaven with her husband and two sons.”

The family believes that day may not be far off. In the past month, they have noticed a decline in Anna's health. She's become more disoriented, is not talking or moving as much, and she's sleeping a lot more.

Her coughing has increased and her breathing is labored, both the result of her COPD. Katie said she also has to feed Anna lunch most of the time.

Even Bettty's niece, Kara, told Betty, “It's like Gramma's dead, but she's alive.”

Anna's vitals, however, are good, and she is cognizant of her surroundings, lifting her feet at Betty's request, swallowing her pills at Katie's urging and automatically lifting her arms to be dried off after her shower.

“My grandmother is still living because of my mother,” Katie said.

Anna's journal
Anna Snatcho's caregivers keep a journal, documenting daily Anna's eating habits, bowel movements and her general mood. In a recent entry, however, her granddaughter, Katie Fehl, also shared a part of herself. She wrote:

Everywhere I go now, people know who I am from the paper.

Who knows, maybe Gram is still alive to bring awareness of dementia to our little towns.

Or maybe she's still teaching us how to love unconditionally, how to be patient, how to be kind through darkness, and how to keep moving forward when all hope seems lost.

What an amazing woman she is!