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Kind caregivers: How one family cared for grandma with dementia

Anne Gamboa was living in Florida when her family discovered she shouldn't be alone
Friday, May 30, 2008 | 5:13 p.m. CDT; updated 11:55 a.m. CDT, Tuesday, July 22, 2008
Anne takes a break from folding laundry to watch her granddaughter, Susan and great-granddaughter, Elisabeth, in the kitchen. Anne suffered from dementia and was no longer able to care for herself. Susan helped pick out Anne’s clothes, tie her shoes and feed her. In return, Anne helped with laundry, dishes and some cooking. “A lot of people said to put her in a nursing home, but she did not want to do that. And we didn’t either,” Susan’s husband John said about the decision to have Anne move in with the family. “She would be dead right now if we had not done something.”

COLUMBIA — When her grandmother stopped answering her telephone, Susan Goeres began to worry.

Then a call came in February 2007 from the Sheriff’s Department in Englewood, Fla.

FIRSTHAND ADVICE

Susan Goeres took a learn-as-you-go approach to caring for her grandmother, Anne Gamboa, in her family’s home in Ashland. Here’s Goeres’s advice for others who find themselves in a similar role: — Put aside your caregiver hat sometimes. “If I had known my grandmother would only be with us for 10 months, I would have talked to her more and just been her granddaughter.” — Don’t take those you love for granted. “Take time to give them a hug and tell them that you love them.” — Don’t get caught up in the “I gotta do” other things. “Don’t take for granted little moments you have with the person you are caring for.” — Give more kisses and I love yous. — Encourage your care recipient’s sense of independence. — Ask nurses and doctors lots of questions so you understand what medicines and conditions your care recipient has. — Take advantages of resources available in Columbia, such as the Adult Day Connection and the Central Missouri Area Agency on Aging. — Find a respite caregiver. “I had time to spend with my husband and children when my mother, Susan Shelton, cared for Anne.” — Take each day one at a time and one step at a time. — Be prepared to say goodbye. Things do not always go according to your timetable. More advice and information can be found at familycaregiving101.org, operated by the National Family Caregivers Association and the National Alliance for Caregiving.

By the numbers

The National Family Caregivers Association estimated that Missouri had 572,438 caregivers in 2004, the 17th highest in the U.S. The National Alliance for Caregiving and AARP define caregivers as “anyone over age 18, living in the U.S. and providing assistance with one or more activities of daily living” for someone 18 or older. Other facts about caregiving in the U.S. include: — 21 percent of the U.S. population (about 44.4 million people) provide unpaid care to friends and family ages 18 and older. — 25 percent of caregivers report living in the same household as the care recipient; 40 percent said they live within 20 minutes of the recipient; 15 percent live more than an hour away. — 15 percent of those caring for older adults report that the main problem or illness of the person they care for was old age, 9 percent report cancer, diabetes and heart disease and 8 percent report Alzheimer’s disease. — 79 percent of care recipients were age 50 or older, the average age being 75. — About 39 percent of caregivers are male. — 62 percent of caregivers are married or living with a partner and 74 percent work and manage caregiving responsibilities at the same time. The most frequently reported unmet needs of caregivers, the group reports, are: finding time for oneself, 35 percent; managing emotional and physical stress, 29 percent; and balancing work and family responsibilities, 29 percent. — The average length of caregiving is 4.3 years. Sources: 2004 study by National Alliance for Caregiving and AARP, familycaregiving101.org.

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An officer told Susan that Anne Gamboa, her grandmother, was at a grocery store and didn’t know how to get home — but she could remember her granddaughter’s phone number.

They’d made a habit of exchanging letters, but Susan hadn’t seen Anne for 11 years. Susan’s husband, John Goeres, had never met Anne.

“It was easy to get caught up in our own life because we were busy raising three small children,” John said. “But when we heard from the deputy, we knew we needed to go to Florida.”

When Susan and John arrived the next month at the one-story duplex, Susan knocked on her grandmother’s door for 20 minutes.

“When she answered the door, I barely recognized her,” Susan said.

Anne had lost about 80 pounds and was wearing dirty clothes.

Susan and John were even less prepared for what they found inside.

“John and I walked into a nightmare,” Susan said. “There was food in the fridge that looked like it had been in there a year and a half, and the house smelled like urine.”

Anne seemed relieved to see her, Susan said, and told her: “You’re a godsend. Make me well.”

John had read letters Anne had written to Susan over the years and felt as if he knew her.

“I was excited to meet this spunky lady,” he said. “I was sad to see her in that state, but I still had a lot of respect for her.”

Susan and John began cleaning the house and checking Anne’s bills.

“I found out her electric and water were going to be shut off in a week,” John said. “She was not remembering to pay the bills, and that’s when I began to think that we could not leave her there.”

Susan and John took Anne for a doctor’s appointment and learned she was suffering from dementia. They soon realized she couldn’t continue living in Florida without a caretaker.

After considerable soul-searching, Susan and John made the decision to bring Anne back to Missouri with them. They had two choices: put Anne in a nursing home or let her live with them.

At first, Susan was frightened about the challenges of being a caregiver. With time, she considered it a blessing to be with her grandmother again.

“We had to step out of our comfort zone because everything we were doing was new and unexpected,” John said.

The Goereses began looking for a house with enough room and found one in Ashland. After living in Columbia for five years with John and her three children, Susan didn’t relish moving. Their children attended Columbia schools, and the family had settled into their home in the Trails West neighborhood in the Midway area.

“I was so scared, and I didn’t want to uproot the children,” Susan said. “But when I walked into the house in Ashland, I had a feeling in my heart that this place was right for us.”

Renewed relations

The new living arrangements required Anne to give up most of her independence but provided her with a new appreciation of family and an opportunity to rekindle her relationship with Susan.

“I realized the love she had for me that I never really knew,” Susan said. “She grew more loving each day she was with us. The children and I got to know our grandmother better, and she gets to know her grandchildren.”

Susan also came to realize their similarities: a quick wit, back-and-forth banter and an appreciation for music.

Sharing special moments together was an affirmation for Susan about the decision to move Anne into her home instead of relocating her in a nursing home.

Within a few weeks, the relationship blossomed into one of trust.

“One day she said to me, ‘I just want you to know I’m 100 percent on your side,’” Susan said.

Anne was getting acquainted with her great-grandchildren for the first time, and they, too, quickly connected. Despite her dementia, Anne was good with simple math and helped 7-year-old Elisabeth with her homework.

“She would sometimes just tell me the answers,” Elisabeth said. “It was great.”

Elisabeth and Anne read together, sometimes choosing the same books that Anne had shared with Susan years ago. One of their favorites was “The Kitten Twins,” a book Anne had brought with her from Florida. It’s a story about two kittens that are always getting into trouble but eventually learn their lesson.

Elisabeth also pitched in with the chores, helping prepare Anne’s food and getting her dressed.

With 12-year-old Alexander and 11-year-old Luke, Anne shared stories about her high school days on a swim team in Chicago. She gave the boys the “thumbs down” signal when they acted up.

There were also opportunities to share family history. Anne enjoyed sharing memories of Hungarian music and food along with stories about her parents who immigrated to America.

The experience wasn’t without struggles.

There were times when Susan found it difficult to care for both her children and her grandmother, but during their 10 months together, the family fell into a routine as Susan grew more comfortable in her role as caregiver.

Confirmed love

The first turn for the worse came in December when Anne entered University Hospital after a mild stroke that required rehabilitation in the Ashland Health Care Center for two and a half weeks.

“She kept asking me when she could come home, and I kept telling her soon,” Susan said.

During her stay at the center, Anne bragged repeatedly to the nurses about the care Susan was providing.

“It felt good to know my grandma was praising me to the nurses,” Susan said.

On Jan. 17, Anne moved back in with the Goereses. Her hearing had deteriorated, and Susan had to speak loudly in her ear for Anne to understand. Susan put up a sign near Anne’s bed that said “bathroom” so Susan could point to it and Anne would know what Susan wanted her to do.

Two days after Susan picked up Anne from Ashland Heath Care Center to take her home, Susan stopped at the city park for a bit of a break.

Anne was tiring easily and didn’t seem like herself, Susan said. She wasn’t talking much and had even stopped saying thank you.

Upset and feeling defeated, Susan took her Bible into the park to pray. As she was preparing to drive away, a woman she’d never met pulled alongside, and Susan started up a conversation with her. She recalled saying, “I don’t know why I’m supposed to say hello to you, but I felt really strongly that I needed to say hi to you. I’m my grandma’s caregiver ... .”

The stranger confided that she, too, was a caregiver for her adult daughter with cerebral palsy and told Susan, “God loves you so much that he entrusted you to take care of your grandma.”

The encounter left Susan with a renewed sense of confidence and commitment that she was in this for the long haul.

One night when Susan couldn’t sleep, she went to Anne’s room and prayed. When Anne awakened, Susan helped her to the bathroom.

“Thanks. I love you,” Anne told her.

“You’re welcome,” Susan replied. “I love you, too, Grandma.”

Final farewell

About two weeks after Anne’s return home from the hospital, Susan prepared her grandmother for a shower.

“Grandma had said, ‘I don’t want to take a shower,’ but I had to tell her to take one,” Susan said, adding that she was never fully comfortable telling her grandma what to do.

As Susan helped Anne bathe, Anne collapsed in the shower.

“At first I thought she had just lost her balance and fallen, but then I noticed she was taking short breaths and her eyes and tongue were rolling, and I knew something was wrong,” she said.

Susan yelled for her mother, Susan Shelton, who was visiting. They lifted Anne out of the tub; Susan called 911 and began doing chest compressions.

At 4:55 p.m., Anne was pronounced dead at University Hospital, but Susan is certain that her grandmother “took her last breaths here at our house in our arms.”

“She didn’t die alone in a nursing home,” she said. “She was in my arms.”

Anne Luther Gamboa was born May 10, 1918, and died Jan. 30, 2008. She was 89. She was buried Feb. 4, 2008, at New Liberty Cemetery in Ashland, just a short walk from the Goeres’ home.

Susan still has a caregiver’s checklist in her kitchen.

“The last thing on it says to be prepared to say goodbye,” Susan said. “But I wasn’t.”


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Comments

Sue Kuda May 31, 2008 | 8:13 a.m.

What a lovely story. Being a caregiver is an act of love. Been there....done that! But the memories will be treasured for a lifetime.

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