JAN. 15-21, 2004
VOL 123 NO. 2
By Eileen Jevis/ SUN staff writer
SUN photo(s) Paul Finch
“Are you married?” Daniel asked for what seemed like the hundredth time. “Yes,” his wife replied. “To me?” he said. “Yes,” she said. “To you.” “I’m glad,” Daniel answered. “I’m glad you’re glad,” said his wife, who has shared a life with this man for close to 58 years.
Daniel is my father and he has Alzheimer’s Disease — a cruel, heartbreaking disease. I’ve watched other family members die of cancer but this is merciless because you never know when the journey is going to end. He hasn’t had an easy life — growing up as an orphan at the House of Providence, which is now Catholic Charities, working hard and raising nine children. My dad has survived cancer, open-heart surgery and other illnesses. He doesn’t deserve to have this ongoing, frustrating, slow separation from his family and friends. His tears of frustration mirror ours — his wife’s and children’s — who every day, watch him slip a little farther away. He doesn’t know our names, or if he does, can’t remember them. He’s confused as to who is who of his 17 grandchildren. They look familiar, but he can’t place them. The long goodbye, it’s called in Alzheimer’s publications. I’ve never handled good-bye’s very well. Now, my family and I experience it on a weekly basis. It hurts our hearts and our children’s as well, who see only confusion on their grandfather’s face instead of joy. It’s hardest on my mom, who is his primary caregiver and is with him seven days a week, 24 hours a day. She answers the same questions over and over and over. “Are you my wife?” “Do I have a brother?” “Where is the bathroom?” “Where is the bedroom?” “Do we live in a hotel?” “Who was that?” (He asks this when one of my siblings or I stop over to visit). As my mother moves from room to room throughout the house, my dad follows her, asking where she’s going. He stands at the stairway when she’s in the basement doing laundry or on the second floor doing housework and calls out, “Hello? Hello?”
According to information provided by the Alzheimer’s Association, this is part of the normal progression of the disease. Persons with Alzheimer’s becomes anxious when their caregiver is out of sight. Because my dad cannot remember the past or anticipate the future, the world around him has become strange and frightening. Sticking close to my mother provides him with a sense of security.
This strong man that was the head of our household and raised his nine children with a firm hand, has other fears as well –– fear of the dark, fear of being left alone, fear of falling. His restlessness and anxiety, his tearfulness and wandering are also part of the disease. Just recently, he woke at 5 a.m. and turned on all the lights in the house. “There was someone in the house during the night,” he said. “I’m checking to see if they left a note.” How scary these thoughts must be for him; they are equally upsetting to our family. But, thankfully, there are so many wonderful organizations and resources available to family members of the aged and ailing. One oasis that offers relief from the constant anxiety of taking care of an ill loved one is St. Francis Adult Day Care on Court Street in Syracuse –– a respite center run by the Sisters of the Third Franciscan Order.
Sister Mary Christopher, OSF, has directed the center with a mix of expertise, compassion, patience and skill since it was established in 1989. Sister Christopher has been a registered nurse for 50 years. She is the first true angel of mercy I’ve ever met. In November, we started taking my father to St. Francis Adult Day Care two days a week. It has provided a tremendous relief for my mother and gives her the opportunity and freedom to run errands and schedule doctor appointments without finding someone to stay with my dad, who can no longer be left alone. “It’s a very lonely job,” said my mother. “Some days I get impatient and resentful. That’s probably due to lack of sleep. But I wouldn’t have it any other way. I’ll take care of him at home for as long as I can.” My mother said that she often feels like her mind is in overload. She sometimes struggles with depression that stems from trying to do it all, remember everything and constantly reassure my father that she isn’t going to leave him.
Sister Mary Christopher and her staff of 13 provide a home-like atmosphere for over 100 clients each week. Approximately one-third of them suffers from Alzheimer’s, while others are afflicted with neurological diseases such as Huntington’s and Parkinson’s Disease or other mental incapacities. The rides to the center are difficult. My father asks again and again where we are going, why my mother isn’t coming and what he will be doing all day. They are hard questions to answer and I struggle not to use the words ‘day care.’ His nervousness and trepidation rub off on me. Recently, his questions became more delusional and he remained irritable during the 15-minute trip. While I know that these are also textbook symptoms of the disease, it doesn’t make it any easier to handle. When I entered St. Francis Day Care for the first time and every time since then, I was impressed and relieved at the cheerful, organized home-like atmosphere as well as the friendly, compassionate staff. My uneasiness and guilt fade away when the staff call my father by name, take him by the hand and lead him down the hall for coffee and toast.
Sister Mary Christopher is gifted with the ability to put everyone at ease. She has provided comforting and valuable information. I’ve learned that my dad isn’t the only one who fears the dark. “It’s normal for our clients to become anxious at the end of the day,” said Sister Mary Christopher. “Many of the participants feel this way. It’s called Sundown Syndrome,” she explained. Sundown Syndrome is very common with Alzheimer-type dementia. According to information obtained by the Alzheimer’s Outreach website, it is a state of recurring confusion and increasing levels of agitation, which correspond with the onset of late afternoon and early evening. “In the winter months, it starts to get dark at 4:00 p.m.,” said Sister Christopher. “This causes some of our participants to become disoriented, which increases their agitation and anxiousness. They worry about finding their way home, going home, or being left here,” she said. “It’s hard in the winter. They all want to know where their coats are, to know that they are accessible. It’s a real chore to keep them away from the coat closet.” Sister Mary Christopher also explained that it’s normal for the clients to lay guilt trips on their families for being left there. My father is often angry when my siblings pick him up at the end of the day. “Where have you been?” he demands. “Why did you leave me here for 17 hours?” This show of temper was disturbing for all of us until Sister Mary Christopher told me that my father was deceiving us into thinking he was miserable all day.
“Did he tell you about the box he’s been sanding during arts and crafts?” asked Sister Mary Christopher. “Has he told you about the games we play? We have bowling and horse racing, play word games and trivia games, gather together for our kazoo band or a sing-along and offer live entertainment,” she explained. “Our clients often show resistance to their families, but won’t embarrass themselves in front of others at day care.” St. Francis Adult Day Care, like many other respite centers, provides hot lunches and a morning and afternoon snack. At St. Francis, the agenda is based on a structured day of activities that changes every 45 minutes. The programs are therapeutic and offer a variety of health, social and supportive services in a protective and safe environment. The socialization and stimulation my father experiences has positively impacted his sleep habits and level of energy at home.
All of the information gathered for this article emphasized the importance of respite care. Research studies conducted by the Alzheimer’s Association have shown that caring for a person with Alzheimer’s has a number of negative effects such as emotional distress, fatigue and poor physical health, social isolation and less time for leisure, self, and other family members. Until the time when permanent long-term care is necessary, adult day care centers offer full or half-day programs that provide much needed relief to the caregiver. In addition to social day care programs there are also medical day care and respite programs available. At Vivian Teal Howard Residential Health Care Facility, there are four levels of respite care available -–– companion care, home health aid care, adult home supervised living and nursing home care. Phil Noe, administrator, and Margaret Pompo, director of social work, shared some valuable tips when dealing with Alzheimer’s patients and deciding what level of care that they need. “Respite care can range from a few days to several weeks,” said Noe. “Respite care gives the care giver a total break. The patient is here for 24 hours a day.” “We often provide respite care when the well spouse is hospitalized or is away for an extended period of time,” Pompo explained. “In respite care, all medications and treatments are given and all of the patient’s daily living needs are met. We also offer emergency respite care,” she said.
I asked Noe at what point families are ready to call them for long term services. “Necessity drives the decision,” he said. “When things start to get out of control at home, if the caregiver is doing too much, or is too stressed out, they will call us.” Noe said that they also get calls when a caregiver has been advised by his/her doctor to get help with the care of the patient. “Also, people have to work. They may want to stay at home to care for their loved one, but they have to put food on the table,” he said. Alzheimer’s Disease has taken much more than my father’s ability to recognize family, organize his thoughts or think logically. It has taken away his memories of picking apples, cutting down Christmas trees and summer vacations spent on Lake Ontario. But the disease hasn’t taken those memories from us. We will have them for our lifetime and beyond as we share the stories with our own children. It also hasn’t taken away our love for him — that man whom we were once afraid to show our report cards to, who now looks at us with confusion and fear. We will travel this journey with him. He will always be thought of as the man who survived life in an orphanage, World War II and countless other hardships and went on to provide safe and secure home for his family. And we will prepare ourselves for a long goodbye.
Dear Lord: Please grant my visitors tolerance of my confusion, forgiveness for my irrationality, and strength to walk with me into the mist of memory my world has become, Please help them take my hand and stay awhile, even though I seem unaware of their presence, Help them to know how their strength and loving care will drift softly into the days to come, just when I need it most, Let them know that, when I don’t recognize them, I will ask them to keep their hearts free of sorrow for me – for my sorrow, when it comes, only lasts for a moment and then it is gone, And finally, Lord, please let them know how very much their visits mean, how, even through this relentless mystery, I can feel their love. Amen
(This poem was found by a family member on the wall in a nursing home. Author unknown.)
Adult Day Care Programs
ONONDAGA COUNTY • Kirkpatrick Day Program Alzheimer’s Association of CNY (315) 472-4201 • Loretto Adult Day Community (315) 498-4405 OR (315) 474-1478 • Salvation Army Social Day Program (315) 479-1309 • St. Francis Adult Day Services (315) 424-1003 • VA Day Program (315) 448-7608 • Home Aides of CNY (315) 476-4295
BROOME COUNTY • Isabell St. High Rise (607) 778-2946 OR (607) 778-2411 • Endwell Site: Northminster Presbyterian Church (607) 754-0746 OR (607) 778-2411 • Golden Days – Johnson City (Medical Day Care) (607) 729-9291 • Sunrise Adult Center – Norwich (607) 337-1770 Medical Adult Day Care Programs
ONONDAGA COUNTY • Day Break Medical Day Program at Loretto (315) 498-4405 OR (315) 474-1478 • Huntington Adult Rehab Services (315) 488-2951 • St. Camillus Health and Rehabilitation Center (315) 488-2951 • St. Joseph’s Continuing Day Treatment (315) 488-2700 • Vivian Teal Howard Day Away RHCF (315) 475-1641
For additional information, contact the Alzheimer’s Association at (800) 339-4177, Onondaga County Department of Aging and Youth at (315) 435-2362, or the Respite Care Program at (315) 476-4295.