You are middle-aged and you may think the hardest talk you'll ever have is behind you, when you and your adolescent had the "sex talk." Actually the hardest talk may well be the one you must have with your aging parents as they face declining health and the loss of their independence. The subject matter is very emotional and thus very difficult to put into words. What do your parents want you to do when they are facing the end of their life?
The question is personal for this writer. My mother, Lil Bufford, died in my home in Hot Springs Village in July. The decline in her health had been gradual, beginning with a compression fracture in her back in 2001. She decided to give up her home in Paragould and much of her independence in 2003 when she moved to an independent living apartment in Hot Springs to be closer to my husband and me.
Although she had long-term care insurance, she did not want to go to a nursing home. I brought her to my house from the hospital in April. We started with Arkansas Hospice about six weeks before her death.
I held her hand as she breathed her last breath. We buried her at St. Mary Church in Paragould. She lies next to my father. I feel that the talks we had made it easier for me to follow her wishes when I could. When the time came to say, "This is what we are going to do," I wasn't sure that I would be able to do this last thing for her. What I found is that, once I made the commitment, God gave me the strength.
Different, yet the same
Kim and Dan Karp were a young couple, with children school-aged or younger when they took her father into their home during his fight with cancer; Rose Nabholz is a single woman who, with the help of siblings, gradually took over the care of her elderly parents who wanted to stay in their own home. Their situations, while different at the beginning, had only one ending.
Rose Nabholz, with the help of her sisters who also live in the Little Rock area, gradually took over the care of her parents beginning in 1993 after her mother's surgery for cancer.
Rather than taking their mother, Clara, and father, Tony, into their homes, the sisters worked together to allow their parents to stay in the family home until each parent died.
When their mother was unable to dress herself and care for the house, Nabholz and her sisters took turns going by every morning and evening to help their father who had taken over much of the household duties. In 1998, Nabholz retired and began doing more and more including taking her parents to their doctors' appointments.
In January 2000, Tony Nabholz refused surgery on a defective aortic valve because he was 92 and did not want to face the operation and the hospital stay. Because the diagnosis was terminal, his doctor recommended hospice and the family arranged for Hospice Homecare to come once a week.
Soon after the family arranged for paid care during the day while the sisters were at work, and in the evenings and on weekends, one of the sisters -- Rose Nabholz, Carolyn McCauley or Lilly Hess -- would stay in the house to help with meals and get their parents dressed.
"We worked together," Nabholz, a member of Our Lady of the Holy Souls Church, said. "Even those siblings that lived out-of-state helped out by coming in on weekends."
Tony Nabholz received the anointing of the sick from Msgr. David LeSieur, then pastor at Our Lady of the Holy Souls. He died in August 2000.
His wife, Clara, had gone through cancer surgery in 1993, and her health had been in a downward spiral since then, including heart problems. She died peacefully in her sleep 10 weeks after her husband's death. They were married nearly 69 years.
Kim and Dan Karp, now members of Our Lady of Fatima in Benton, had three boys, 8 months, 4 years and 6 years old, when Kim's dad moved into their home in 2003. "Grandpa Dave's" health had been in a decline since he was diagnosed with colon cancer in 2002. Karp's mother died of cancer while Karp was still a teenager, and her father's second wife was diagnosed with terminal cancer about a year after his diagnosis.
In the summer of 2003, her dad and stepmother could no longer care for each other and each moved into the home of a daughter for care during their last months. Karp's father, Dave Weida, died in March 2004.
Talk about the "what ifs"
In all three situations, the decline was gradual, with the child picking up more and more responsibility as the parent became more incapacitated. However, a stroke, a major heart attack, or a fall in the home resulting in broken bones can cause a situation to change overnight.
Karp's father was 61 when his cancer was first diagnosed. For this reason, "the talk" needs to begin early, while parents are coherent and can give some thought to the "what ifs."
The families stressed it would take many such talks to gather information from physicians, social workers, hospital chaplains and priests, before informed decisions can be made.
And it would take many more talks before family members accept and understand exactly what the parents' desires are.
Feeding tubes, ventilators, invasive tests, surgeries, more and more expensive medications, all of these are "what ifs" and many family members will want to consult with a priest or trained chaplain to understand the Church's teaching on these issues.
Karp said it is important for a child to always honor and respect his or her parents as human beings with dignity.
"Give them any independence they can handle," she said. "Try not to take over every aspect of their life. Don't try to do everything for them if they are capable of doing it themselves."
"I was busy all day, every day, just with three boys. I was lucky in that, except for the last few days of his life, my dad was able to get up, get dressed, to care for himself for an hour or two if I had to go to the store or pick the kids up from school," Karp said. "I had help from family in babysitting the boys while I took Dad to the doctors. Occasionally my church women's group at (Immaculate Conception Church in North Little Rock) would provide a meal."
"You must be knowledgeable about what services are available in your area," Nabholz said. "My mother subscribed to Aging Arkansas, a newspaper which keeps Arkansans over 50 informed about health, consumer issues, advocacy and senior legislation. ... We also used aides from CareLink, which is part of the Area Agency on Aging in Little Rock."
Weida was a veteran and Karp said all her father's doctors, medicines and hospice care were arranged through the Veterans Administration, which has extensive medical facilities in the central Arkansas area.
A major life change
The families admitted caring for their parents was a difficult experience.
For the Karp family, there was a loss of privacy in the home when Kim's father came to stay. One room in their house became a sick room, with a hospital bed and other paraphernalia illness brings.
"My dad was a strong man, physically and emotionally. I had to learn some nursing duties, like changing bandages, flushing his ports, etc.," Karp said. "I think the emotional challenges were harder to deal with than the physical. I had not lived with my dad for 18 years and I had a husband and three boys. We all had to learn to live with each other and our different personalities. ... It wasn't always perfect and feelings got hurt a few times. Still, I think that all and all we did OK."
Nabholz said she and her siblings often missed family and social activities because they were busy with their parents.
There is also the comings and goings of caregivers, home health aides, hospice workers and friends and because the parent can no longer attend Mass, extraordinary ministers of the Eucharist visit the home and someone has to be there to greet them.
Joy from pain
Though there is much sorrow in watching loved ones suffer, there is also much joy from this time in life.
"I got to know a lot about my dad that I did not know," Karp said. "My kids and my husband got to know my dad much better too ... My dad put a lot of thought into the gifts he bought his last Christmas with us. He knew that it was his last, so he got the boys things they would have, and could use, for a long time. They often say they wish 'Grandpa Dave' was still here."
Nabholz said she remembered how her family always had celebrations at the home of her parents.
"They always enjoyed the grandchildren and the great-grandchildren," she said. "And it was good for the younger generation to be with Mother and Daddy also."
Lilly Hess, Nabholz' sister, explained in a meditation that she wrote after her father's death that she learned a lot in caring for him at the end.
"During this time I got to know much more about my father and what he valued in life. He loved his wife through their years of marriage," she wrote. "He must have died to self many times through the years in choosing to love her and provide for his family. A faithful Christian, he followed in the steps of Jesus from his baptism to his death. His life glorified God."
Regional offices are located in eight areas of the state. For more information or to find the Area Agency on Aging nearest you, call (866) 651-2273 or visit the Web site http://www.arkansas.gov/dhhs/aging/ aaamap.html
Return to the Marriage & Family section index.
Please read our Comments Policy before posting.Article comments powered by Disqus