Sarah Harlock dispenses a lot of advice in her roles as a memory care consultant with the Alzheimer’s Disease Assistance Center of Western New York and chair of the Erie County Caregiver Coalition.
One thing she underlines for those involved in caregiving:
“I always try to encourage caregivers to not make promises,” Harlock told me last week during an interview for today’s cover story package on caregiving in WNY Refresh. “It’s really important. The promise you can make is to do your best. Life doesn’t always go the way we planned, so even as a caregiver, we can’t always fulfill promises that we make.”
Most who do so make their vows out of love and under duress, Harlock said, and the most common involves someone who promises to keep a loved one at home until the very end.
Harlock calls this “The No Nursing Home Promise.” (Read another piece here about what to consider before such a promise is made.) Harlock looks to drive home the point that none of us has a crystal ball – and that all of use exert limited control when it comes to our lives and the lives of our loved ones.
How often have we heard that true heroes are those who have learned not so much how to control but to how react?
The same might be said for caregivers, Harlock maintained.
“Caregivers already have enough challenges related to this role,” she said. “We don’t need to add on the stress and guilt of not being able to live up to a promise.”
Each caregiving situation is unique she said, even for those who have a family member with the same disease.
“What works for one family might not necessarily work for another,” she said.
And for some, assisted living or skilled nursing care may need to be part of the process of a progressive illness – like it or not.
“Success in caregiving doesn’t mean you were able to keep someone at home,” Harlock said. “It’s really important for caregivers to understand that success is measured in a lot of different ways.
“I wish that caregivers would look at success as maintaining some good health themselves, that it’s not necessarily that someone gets to stay in their own home. That may not be the best environment for every individual, even though they may have said, ‘I want to stay in my own home.’ They may really benefit from the socialization in another setting.”
Harlock works with patients with memory disorders and their caregivers in her role as a memory care consultant with the Alzheimer’s Disease Assistance Center. She looks to help get them to a point where they understand what options exist, and how to access them.
Below is a list of resources she and others provided for those who have hard work and hard choices ahead – meaningful work that will flow out of love, on a road that can be made a bit easier by those who have walked in similar steps.
Chris Otterbein is administrator at Ridge View Manor, where John Eaton – subject of this weekend’s Refresh cover story – was placed just before Thanksgiving.
“Have a sense of what your loved ones wishes are ahead of time,” Otterbein said. “It’s a hard conversation to have,” he said, but vital, nonetheless.
“You would be surprised how many people come in, in their 80s, and their family doesn’t have a sense about what their wishes are, and if you have more than one family member of a subsequent generation, it can lead to conflict.”
He too, advised against promise-making, and encouraged families and individuals who make a nursing home decision to give it a few months to work.
“Here, there’s plenty of interaction with other people, if that’s what you desire,” Otterbein said. “You have the opportunity to build relationships like those you had previously in life. Sometimes that brings someone out of their shell – and that’s a real good thing. ... They find friends, a relationship, someone their own age who can talk about similar experiences.”
His top tip for children whose parents are struggling: “Try to be truthful in as compassionate a way as possible.”
And he, Harlock, and several people interviewed for this weekend’s stories stressed the most important message every caregiver should embrace:
You’re not alone – and there is help and support available for you, too.
Eaton's daughter, Jacqueline Platt, who helped the 91-year-old, retired musician decide on nursing home care, is among those who has learned this is so.
"I love him so much," she told me, and with caregiving, "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 that is."
WHERE TO GO FOR INFORMATION AND 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.
NEXT WEEKEND IN WNY REFRESH: A CLOSER LOOK AT RESPITE CARE
Twitter: @BNrefresh, @ScottBScanlon