Being a caregiver can be one of the toughest jobs around, whether you are tending to a parent, spouse, sibling or child.
Chances are it is a task that will fall to you one day, and that you will have little or no preparation for all that it entails.
That's why Highland Presbyterian Church's Stephen Ministry has planned "A Day for Caregivers" from 9 a.m. to 3:15 p.m. Saturday, Sept. 27, at the church, 1801 Oregon Pike. The five-part workshop is designed to give attendees the information and support they need to help them in caring for their loved ones.
"If there is one thing I wish I had when I cared for my husband, it was information," said Linda Guimond, of Lancaster. "There were so many things I didn't know, and I didn't know where to find the answers I needed."
Guimond became the caregiver for her husband, Darrel, when he was 71 and she was 68. In June 2007, Darrel Guimond was driving home from a concert in Ephrata. Suddenly, the professional musician's heart stopped beating. His car went over an embankment; he had no pulse. The rescue crew of emergency medical technicians worked feverishly to save him, using a defibrillator.
Doctors at the hospital held little hope for his survival. When his heart stopped, his brain was deprived of oxygen, thus causing severe damage. Mrs. Guimond and the family agreed to take him off life-support. But, to her utter surprise, her husband began talking. She had been playing his favorite Dixieland music and asked him if he liked it. He said, "Ah-ha." Then, when she rubbed his back, he said, "Feels good."
After many weeks of rehabilitation, it was time for her husband to come home.
Linda Guimond didn't realize what his amazing survival would mean to her.
Bittersweet experiences"I've always been a very strong, independent person. I felt confident that I could care for Darrel. It was much harder than I ever imagined," she said.
Her husband didn't sleep for more than an hour or two, for example. He wandered about the house. She couldn't sleep, worrying that he would fall. He was confused and agitated. Most of all, he didn't recognize his wife of more than 50 years.
He would look right at her and ask, "Who are you?"
For Guimond, it was an experience that was completely exhausting, heart-wrenching, painful, emotionally draining, physically challenging ... and extremely rewarding. Deep down, she knew that what he would have wanted was to be at home.
Even though her husband didn't know her as his wife, he seemed happy to be with her. One night, as they settled into bed, she told him how much she loved him and how happy she was that things were going so well between them. He agreed, telling her he loved her, too. Then, he suddenly whispered to her that they needed to be careful, because "at any time, my wife might come in and catch us in bed together!"
"I had to laugh, it was so funny," said Mrs. Guimond.
That bittersweet moment was complicated by her husband's declining health and confusion. Desperate for even a few hours of relief from being a 24-hours-a-day caregiver, Linda Guimond enrolled her husband in an adult day care program. She had help from Visiting Angels home-care service, and their children helped, too.
This year, in January, Darrel Guimond died after suffering from an infection.
Mrs. Guimond looks back at the experience as the hardest and best thing she ever did. She also realizes that it would have been so much easier if she had known more about being a caregiver. She said she wishes she had known how to ask for help.
Some of her questions related to taking care of herself while she was taking care of him, understanding her insurance and medical options, knowing how to plan for the future, making the right legal choices, adjusting to life as a caregiver and how to find spiritual fulfillment.
"One lesson that I learned was that I needed to rely on the hospital chaplain more. There are times when the decisions made by doctors and nurses are not the best for the caregiver. The chaplain can speak up for you," she said.
Mrs. Guimond said she would have appreciated a workshop like "A Day for Caregivers."
Sessions plannedThe program will include a range of topics of importance to caregivers, such as how families can work together, ethical and legal concerns, where to turn for help, how to adjust to the "new normal" and long-distance caregiving.
There will be five sessions and each person who participates may choose to attend two of them. The cost is $25 for the program, which will includes a keynote speaker, the sessions, lunch and a group meeting.
The speaker will be Ruth Stoll, coordinator of Samaritan Counseling Center's Congregational Health Ministries, discussing the challenges of being a caregiver.
Workshop sessions will be led by social worker Dorcia Bradley, of Hospice of Lancaster County; attorney Nancy Hughes, of Barley Snyder; Jessica Pavelko, of Pavelko Senior Counseling Center; associate pastor Anne Osborne, of Highland Presbyterian; and volunteer education coordinator Carol VandenBerg, of Hospice of Lancaster County.
The group session will be conducted by Mary Gabriel, of Gabriel Healing Arts, on "Taking Care of the Caregiver."
Seeking peace of mindFor caregivers like Donna Romanelli, of Ephrata, the workshops hold the potential to offer some of the help she needs. Romanelli has been caring for her mother, Rita Romanelli, for 14 years, after the woman suffered a stroke and other serious health issues including heart problems, vision and speech difficulties, arthritis and some paralysis.
Donna Romanelli works full time and struggles to take care of her mother, who lives with her.
"I call her my 84-year-old 5-year-old," said the caregiver.
Feeding and dressing her mother. Dispensing medications. Transporting her to doctor appointments. Handling emergencies. Processing paperwork for insurance and legal matters. Cleaning. Budgeting. And taking care of the house and yard. It's now all part of her lifestyle.
Donna Romanelli is the only daughter; she has three brothers who live outside the area. Thus, the onus of responsibility falls to her.
Because she is concerned about her mother when she is at work, Donna Romanelli has arranged for her mother to participate in adult day care and other programs. She has a caregiver come to give her mother baths.
As the 84-year-old's health continues to decline, the daughter is now considering nursing-home or assisted-living care; she believes that will give her more peace of mind, and her mother will have the opportunity to socialize with others.
"You learn as you go, and one of the things that happens is that you lose yourself. You need to ask for help," noted Romanelli. "You need to take care of yourself, too."
To register for "A Day for Caregivers," call Marilyn Ebel, 393-7722, or send $25 registration to Caregivers Workshop, Highland Presbyterian Church, 1801 Oregon Pike, Lancaster, PA 17601. The deadline is Sept. 8. The workshop is presented by the Cindy Faber Memorial Fund.
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