John Eaton had always been a robust man, a piano player who worked jazz venues and the country club circuit far and wide from his home base in Bridgeport, Conn. He charmed the ladies and disarmed even the staunchest of audiences with his quick wit, warm smile and smooth voice.
That’s why a visit last year to his home jarred his daughter so.
“He was 113 pounds and he’s 6-1. He was always thin but not that thin,” said Jacqueline Platt, 68, of Buffalo, a retired Internal Revenue Service administrator who in recent years has traveled to see her dad at least twice a year.
After huddling with her two brothers, who’d barely noticed the change during regular visits over the years with their father, Platt asked Eaton to come to Buffalo. He declined, so she called him daily. During her latest visit in September, her 91-year-old dad decided it was time to accept the offer. Platt brought him to her tidy East Side home and became his primary caregiver.
She took steps to get his medical needs and legal paperwork in order, bring up his weight and help him establish a healthier routine. She found comfort in her father’s lightheartedness – but fear in new, unfamiliar outbursts. She lost sleep, particularly after her father on some nights would unlock the door and step outside, alone, into his new surroundings. She shored up the locks and gained a new vigilance for this man who raised her, but no longer always remembered her name.
“I had to get over that quickly,” she said. “Quickly, because my purpose is to make every day count for him, to help make it joyful and good. Still, the last three months have been like a world turned upside down.”
BELOW: CAREGIVING TIPS, WNY RESOURCES, WARNING SIGNS OF DIMENTIA
Caregiving – whether it be for a loved one with a disability, who is chronically ill or has become frail regardless of age – can be daunting, disorienting and meaningful, said Sarah Harlock, a memory care consultant with the Alzheimer’s Disease Assistance Center of Western New York and chair of the Erie County Caregiver Coalition.
“You don’t need to be a perfect caregiver,” Harlock advised the overwhelmed. “Just a caregiver who cares.”
She, Platt and others shared five steps to help ease the burden, provide more perspective and raise the effectiveness of support.
1. Get important documents in order
These include a power of attorney, health care proxy, Medical Orders of Life Sustaining Treatment (MOLST), and veteran discharge papers where appropriate. Platt pulled all of these together, helped get her father on Medicaid and gathered new copies of his Social Security Card and birth certificate – all in recent weeks. “It’s hard,” she said, “when you’re trying to care for someone and get all these documents in order.”
A health care proxy – which appoints someone to make medical decisions for you if you can’t do so yourself – can be downloaded from websites that include theconversationproject.org and compassionandsupport.org. “It’s something families could do over the holidays,” Harlock said. “I recommend you see an attorney for a power of attorney,” she said. “That also creates an opportunity to have a discussion about finances and future care options.”
2. Gather information about the diagnosis
“I tell people they don’t need to have a Ph.D. in this,” Harlock said, “but they do need to have a general understanding of the condition and the prognosis and progression of the illness, so that they can plan ahead. There are some great websites out there, particularly related to some of the illnesses. You just have to be savvy about getting your information and knowing your source. Sometimes starting with the organizations, foundations or associations dedicated to a particular diagnosis are a good place to start – so you don’t get the wrong information.” Platt took this approach after she and her father, a World War II veteran, went to the Buffalo Veterans Administration Medical Center Memory Care Clinic, which diagnosed Eaton with advanced Alzheimer’s disease. That gave more clarity to the caregiving process, and the staff prescribed medication to help stabilize his mood.
3. Find supportive services
Many caregivers don’t want to be a burden to others, Harlock said, “but you can’t do this alone.” Most counties in Western New York and across the state, through an Office for the Aging, provide programs, special events and a vast array of resources. Erie County Senior Services plays a similar role. NY Connects (aging.ny.gov; 800-342-9871) can point caregivers to those agencies, as well as in the right direction for a variety of needs including support groups, medical and legal issues, and home health and nursing home care. Platt contacted Erie County Senior Services and the Alzheimer’s Association, and reached out to church members friends and family within a week of her father’s arrival. With help from those agencies and the VA staff, she created what she calls “Team John” for her dad. “I felt like a weight was lifted off of me. When I made those connections, I could breathe.”
Linda Gelden, Kathleen Warner and Maryann Nowak, whose husbands attend a free monthly respite care program at Trinity Old Lutheran Church in Amherst, said the program gives them a few hours away to shop, sleep and sometimes grab lunch together. They also regularly attend Alzheimer’s Association support group meetings. “I’m doing the best I can,” Warner said, “but I know the time is coming when I’m going to need more help. There’s so much to think about.”
4. Make a plan
“The greatest thing I can tell everyone is anticipate,” Platt said. Nothing need be written in stone, Harlock said, but it’s important to understand what services you might need, and prefer, especially with chronic, progressive conditions. “I recommend you get ahead of the game. You might not be looking today or tomorrow but get out and start touring” senior independent, assisted and skilled living sites, said Michael Ford, community relations coordinator with Elderwood at Amherst. When costs can run up to $500 a day for round-the-clock home care and more than $100,000 a year for skilled nursing care, “You’ve got to do your homework,” he said.
Platt and her father, both U.S. Army veterans, decided in recent weeks they want to be buried in a veterans field at Forest Lawn. “I love my two brothers,” Platt said, “but that part of the detail was never discussed because it was too painful – he’s going to live forever and so on. My daughters don’t want to talk about it, either, so that’s why I’m getting things in order. While, I’m making plans and preparations for him, I’m making plans and preparations for me.”
5. Care for yourself
“We know that caregivers are at higher risk for depression, at higher risk for chronic illness, at higher risk of death because of the stress of caregiving,” Harlock said, “so it’s absolutely critical that caregivers learn to take care of themselves.” That starts with acceptance of circumstances. “You have to learn to live with this diagnosis,” she said, “and understand there is a lot of living still to do. Find your own joy. Anything that keeps you healthy and strong makes you a better caregiver.”
When Platt has had to do something difficult in recent weeks – like assure that her father got a shower or bath – “I made sure I’d eaten, taken my vitamins, taken my shower and I was at peace. I wasn’t thinking about bills or who needed to make the next phone call. I put that in with lighting a candle, watching a comedy, and laughing. My Dad’s got a beautiful laugh. We make jokes and whether he understands them or not, we laugh.” She also visits a personal trainer, regularly rides an exercise bike and gets an occasional massage.
Platt and her father made the painful, but necessary, decision three weeks ago that Eaton needed skilled nursing home care. He started his latest journey at Ridge View Manor in South Buffalo and will soon move to HighPointe on Michigan near Buffalo General Medical Center, which is closer to Platt’s home. The transition has been bumpy at times, but Eaton has eaten better, started to socialize and is in a safer environment.
“It’s better than being in jail,” he said with a smile Wednesday, while thumbing through a scrapbook filled with photos and news clippings retracing his professional musical career. At times, his brown eyes sparkled. At times, his brow furrowed and he gazed upward struggling to recall details.
“It looks like you’re on your way to Hollywood in this one,” Platt said as she pointed to photo in one of the stories. Father and daughter then launched into a song he wrote for her as a child, which started, “Butterfly, how high you’re flying.”
“I like this place right here with my baby, my daughter,” Eaton confided. “She’s looking out for me. I don’t know what’s good and what’s bad.”
Platt visits her father almost every day. She is sleeping better. Feeling better. Thankful for more help. She continues to worry about him and closely monitor his care. It’s hard to watch a man who once carried his golf clubs for 18 holes on many a warm day now struggle to walk more than a few steps.
“I think of it as navigating a rough river I’ve never navigated before,” she said. “We got into some rough water but I’m still in the boat. We’re still afloat. And I figured, ‘Let’s get him to the best place we can.’ I love him so much and the love just grew. What kept me grounded is my faith. He is a gift God has given me for this time, for however long it is.”
WHERE TO GO FOR INFORMATION, SUPPORT
NY Connects (aging.ny.gov; 800-342-9871): A starting point for those looking for caregiving services through local agencies, including the Erie County Department of Senior Services or outlying county Offices for the Aging, as well as a variety of supports for families dealing with loved ones of any age who have a range physical and mental health conditions.
Erie County Caregiver Coalition (eriecountycaregiver.com; 858-8526): Provides links on its website to help caregivers in a variety of ways, including with health care questions, home safety assessments, advanced care planning, transportation and proper nutrition.
CASE Niagara (caseniagara.com; 285-3499): Provides information and links to agencies and programs that help those who care for the frail, chronically ill and disabled of all ages in Niagara and nearby counties.
Alzheimer’s Association of WNY (alz.org/wny; 800-272-3900): Provides information on health care, services and more than 30 support groups across the region for those with Alzheimer’s and other dementias, and their loved ones.
Alzheimer’s Disease Assistance Center of WNY (adacwny.org; 250-2000, Ext. 1107): Helps doctors diagnose Alzheimer’s and other dementias and helps patients and caregivers put together an individualized care management plan.
Health insurance companies: “I always encourage people to contact their health insurance company to see if they have any programs that may help,” said Sarah Harlock, who chairs the Erie County Caregiver Association. “It may be a care coordination program, a disease management program, or a palliative care program.”
Legal Services for the Elderly, Disabled or Disadvantaged of WNY (lsed.org; 853-3087): Lawyers, University at Buffalo law students, social workers and others volunteer their time to provide free legal advice on civil matters related to caregiving.
Visiting Nurses Association of WNY (vnawny.org; 630-8000): The largest of several home health care agencies in the region, it provides various levels of care designed to keep those with medical needs in their homes for as long as possible.
Power Tools for Caregivers: County senior agencies, in cooperation with health departments, coordinate these classes across the country, including in the region. The six-week sessions run once a week and teach caregivers how to reduce stress, improve self-confidence, better communicate feelings and locate helpful resources. Caregivers also learn how to make tough decisions and balance their life needs. The $25 cost includes a handbook. Trinity Old Lutheran Church in Amherst will host a series starting Jan. 5; to register, call Erie County Senior Services at 858-2177.
Respite care: The Erie County Department of Senior Services and the Alzheimer’s Association of WNY work to help local agencies provide a social adult day program for those with dementia at least once a month at several sites, including the Amherst Center for Senior Services and Trinity Old Lutheran Church in Amherst; Catholic Charities Senior Day Care in Buffalo; Guildcare Adult Day Health Care in Buffalo and Niagara Falls; and Aurora and Hamburg adult day services in the Southtowns. For more information for programs across the region, contact the association at (800) 272-3900 or email program.wnyalz.org. For a listing, click here.
BUFFALO & ERIE COUNTY LIBRARY RESOURCES
Support for caregivers
“The Caregiving Trap: Solutions for life’s unexpected changes,” Pamela D. Wilson
“Passages in Caregiving: Turning chaos into confidence,” Gail Sheehy
“Voices of Caregiving – The Healing Companion: Stories for courage, comfort and strength,” Healing Project
“Leaning Into Sharp Points: Practical guidance and nurturing support for caregivers,” Stan Goldberg
“The Caregiver’s Path to Compassionate Decision Making: Making choices for those who can’t,” Viki Kind
“Support for Alzheimer’s and Dementia Caregivers: The unsung heroes,” Judith L. London
“When the Time Comes: Families with aging parents share their struggles and solutions,” Paula Span
“The 36-hour Day: A family guide to caring for people who have Alzheimer disease, related dementias and memory loss,” Nancy L. Mace
“I’m Still Here: A breakthrough approach to understanding someone living with Alzheimer’s,” John Zeisel
“The Comfort of Home: A complete guide for caregivers,” Maria M. Meyer
“Solace: How to relate, listen, and respond effectively to a chronically ill person,” Walter St. John
“The Educated Caregiver” videorecordings – Three discs: Volume 1, “Coping Skills”; Volume 2, “Hands-on Skills”; Volume 3, “Essential knowledge,” Nancy Van Camp
“About Alice,” Calvin Trillin (cancer)
“Life in the balance: A physician’s memoir of life, love, and loss with Parkinson’s disease and dementia,” Thomas B Graboys
“Moving Miss Peggy: A story of dementia, courage and consolation,” Robert Benson
“The Theft of Memory: Losing my father, one day at a time,” Jonathan Kozol
For more information, visit BuffaloLib.org, click on “Subject Guides” and choose “Caregiving.”
As you visit older, frail or chronically ill loved ones during the holidays, experts say you should look for the following signs that suggest the need for a greater level of care.
Things are out of place: Once meticulous loved ones have changed. Clutter is obvious. The stovetop is grimy. Laundry has piled up. The bed isn’t made and mom made it daily for at least 50 years.
Food is absent: The refrigerator and cupboards are nearly bare; expiration dates on foods have long passed.
Foul odors: Food has spoiled or signs of incontinence are obvious.
Weight loss is apparent: Raises questions about what, and how often, someone is eating.
Damaged motor vehicles: Are there noticeable signs of scrapes or dents?
“I don’t want to turn people into detectives over the holidays,” said Sarah Harlock, who chairs the Erie County Caregiver Coalition. but if you have a sense that something’s off or something’s not quite right, I encourage people to ask the question, ‘How are things going and what may make something a little bit easier for you, whether that’s grocery delivery, a Meals on Wheels program, or assistance with yard work?’ If the question needs to be put off to early in the new year, follow through – and keep your eyes out for changes.”
TEN WARNING SIGNS OF DEMENTIA
Memory loss that disrupts daily life
Challenges in planning or solving problems
Difficulty completing family tasks at home, work or leisure
Confusion with time or place
Trouble understanding visual images or spacial relationships
New problems with words in speaking or writing
Misplacing things and losing the ability to retrace steps
Decreased or poor judgement
Withdrawal from work or social activities
Changes in mood and personality
“People have the symptoms long before other people are noticing it,” Harlock said. “They just work harder at compensating. But because these disorders are progressive, it does become noticeable.”
Sources: Alzheimer’s Disease Assistance Center of WNY, Alzheimer’s Association Alzheimer’s Association
Twitter: @BNrefresh, @ScottBScanlon