It took more than three years for Yvette and Calvin Haller’s children to convince them it was time to move in to an independent living apartment. Unfortunately, Calvin fell in their Town of Tonawanda home and broke his leg before the big move.
Yvette, 88, had soldiered on for years, pulling her husband up from chairs, collecting him off the floor when he tumbled, explaining away his bruises when their son and daughter visited.
“I told them I beat him up,” she said with a smile earlier this month while relaxing at GreenField Manor in Lancaster and holding her husband’s hand.
Charlie Blackwell relaxed with them – and admitted his own reservations about moving into the Manor with his wife, Grace, when the place opened in 2001. He did it for Grace, who was largely homebound after open-heart surgery. He was 80 at the time.
“We were so glad he wasn’t up on the roof chipping ice anymore,” said their son, the Rev. Michael Blackwell.
The Hallers and Blackwells discovered that life can go on as it slows down. That meaningful friendships, activities and moments still are possible. But you have to adjust.
It’s a reality that more than 70 million baby boomers will have to face during the next dozen years as they move into retirement age. Many will have to consider one of the key questions they may now be asking their parents: Is it time to accept a higher level of care?
“That’s a very personal question,” said Sarah Harlock, coordinator of the Erie County Caregiver Coalition. “But there are some guidelines,” she said:
* When safety becomes an issue.
* When dignity becomes an issue. “Maybe it’s something like knocking on a neighbor’s door at midnight thinking it’s noon,” Harlock said. “That’s not the way your loved one wants to be remembered.”
* When quality of life slips noticeably.
“None of these things mean you have to move out of your own home,” Harlock said, “but it does mean that you need a more supportive environment.”
It took a while for the Haller and Blackwell kids to convince their parents to leave home for safer, more supportive surroundings. Here are some of the things they encouraged others to consider if a similar decision may lie ahead.
1. Caregiver health counts
“I spend as much time talking to caregivers about taking care of themselves as talking to an individual with memory loss,” said Harlock, who also is program director for the Integrative Center for Memory at Dent Neurologic Institute in Amherst. “Caregivers tend to be so good at taking care of everybody else that they neglect their own health,” she said, and often are at a significantly increased risk of depression and worsening chronic illness that include high blood pressure, diabetes or arthritis.
2. Money needs context
The Hallers and Blackwells counted themselves among millions of older Americans living in beloved homes with no mortgage and a nest egg to leave their loved ones. Their children said this was a major factor in the two couple’s reluctance to move into an independent living setting where their transportation, socialization and other basic needs would be met. Despite a hearing loss and challenges walking, Calvin Haller, 91, preferred to live at home – and he is a longtime member of the board of the Niagara Lutheran Health System, the parent company of the GreenFields senior care campus, which also includes an assisted living apartment complex and skilled nursing facility.
“I always talk to families about talking to attorneys so that you have options for care,” Harlock said. “I don’t talk about protecting assets. It’s about positioning your finances so that you have options for care. People might think, ‘I want to leave money for my family,’ but not realizing that it may be their children or their grandchildren who will have this increased tax burden” if government has to pick up the cost for everyone.
To be sure, many cannot afford what can become a staggering cost for care and must turn to Medicaid. But for others, the $2,750 to $3,770 monthly rate for an apartment at the Manor may sound expensive at first, but there are no large upfront costs. The sale of a house could yield several years of payments before Social Security, pension and savings come into the mix, or vice-versa. And loved ones can spend time enjoying nice meals, chats, activities and special events that others have arranged instead of years filled with extra chores and worries.
3. Plan, be patient and persistent
David McMullen, executive director of the Niagara Lutheran Health System Foundation, encouraged families to talk to loved ones about potential future living arrangements before a crisis forces such a discussion. Those regular conversations can include visits to some of the continuing care sites in the region, he said. The Blackwell children talked up the Manor to their parents as it was being built; the Haller kids regularly touted it as a good fit as their parents struggled.
Families should talk frankly and openly as they notice troubling changes in a loved one, Harlock said. “Some people will want very much for their loved ones to stay home, because that’s what mom said she wanted, but might not necessarily appreciate the complexity of the situation or recognize that mom’s quality of life may be deteriorating because she’s home alone so much. It’s important that everybody be respectful of everybody’s perspective. I encourage families to try to keep the loved one’s needs at the center of the conversation and not drag in too much history. And if your loved one is capable of participating in the conversation of how their care should go, I absolutely want them to be involved.”
Harlock cautioned caregivers about making promises. “The only promise that you really make is that you will do your very best to honor their wishes. Nobody has a crystal ball. We don’t know how things will go, so it’s difficult to make a promise that you’ll have to retract later.”
4. Be realistic – and positive
Yvette and Calvin Haller met 68 years ago after he returned from World War II. They could have moved to other cities after they married but Calvin Haller loved his hometown, and worked his way up from a teller position at Buffalo Savings Bank to president. He still serves on some of the boards he’s been involved with over his life.
“He wanted to die in his house but my mom had finally convinced him it was time,” said his son, Cary. “It’s a hard decision. He’s lived in only two houses” – the one he was born in on Riley Street near Deaconess Hospital and the Town of Tonawanda Cape Cod-style home he and his wife bought after they were married. “For him, that’s a pretty traumatic move.”
Yvette Haller began to find a greater challenge in going up and down the basement stairs to handle laundry, and to clean the whole house. Then, like her husband, she began to have trouble walking.
“It was a very hard decision but inside, something tells you that you just can’t do in anymore,” she said. She has adjusted since moving into her apartment in August. She visits her husband for hours every day at the GreenField Health and Rehabilitation Center on the same grounds, and has made new friends there and at the Manor.
“I’ve never been any place where people welcome you so much, with their heart and soul,” she said.
Charlie Blackwell is thankful that his wife, Grace, came out of valve replacement surgery, and 21 days in ICU, after she was diagnosed with heart failure in 1983. By the time they moved into the Manor in 2001, she needed oxygen and was mostly confined to the house. The couple already had moved from their home in Eden to a ranch house in Hamburg, but his children helped convince him another move was in his wife’s interest.
“After we moved in here, my wife Grace became very active,” Charlie Blackwell said. “She was the one-person welcoming committee that met all our new residents.” She joined the library and altar committees, and took on a project to set up a café and gather volunteers to run it.
“What a change in Grace at that time,” her husband said. “Depression gone. She came to be the very happy person that she was. This was the best medicine I could have ever given to her, to bring her here.”
Grace Blackwell died in 2006. Her husband took over duties in what has become known as Grace’s Place. A photograph of the couple hangs on a wall near the entrance. He is 95 now. The retired accountant continues to walk at least a mile or two a day on the grounds or, in tougher weather, the Manor hallways. He also was allowed to plant a small garden similar to the one he once had at home.
“This was great therapy for me,” he said, adding, “I’ve had a good life.”
5. Dementia is a disease
Signs of dementia include poor judgment and decision-making, the inability to manage a budget, losing track of the date or the season, difficulty having a conversation, and often misplacing things, according to the Alzheimer’s Association. Such memory loss is progressive and tends to worsen over time. “In the beginning, people may very well have the insight into some of their own deficits,” Harlock said. “That’s a really tough place to be when you realize you can’t function the way you used to. ... It’s tough on family, too.
“At a certain point, people tend to lose insight into their own challenges and often become less distressed about their own deficits,” she said. That’s when loved ones need to step in – and try to understand that those struggling will at times become irritable, and maybe irrational. It’s also understandable that loved ones will sometimes lose patience and become irritable themselves. That’s when it can be helpful to reach out for support. “You don’t have to be a perfect caregiver,” Harlock said. “Just a caregiver who cares.”
Caregivers need to care for themselves while caring for others. Take a caregiver stress test at alz.org/care and follow these tips from the Alzheimer’s Association:
- Be realistic about what you can manage.
- Accept changes as they occur.
- Take care of yourself by watching your diet, exercising and getting plenty of rest.
- Make legal and financial plans.
- Give yourself credit for what you’ve accomplished; don’t feel guilty if you lose patience and can’t do it all on your own.
- Reach out for resources and get help from family, friends and community sources.
- Learn as much as you can about the condition of those you care for. Attend workshops when they’re offered.
WHERE TO GO FOR INFORMATION AND SUPPORT
NY Connects (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.
Alzheimer’s Association of WNY (800-272-3900): Provides information on health care, services and more than 30 support groups across the region for those with Alzheimer’s, other dementias and any kind of memory loss, as well as their loved ones.
Erie County Caregiver Coalition (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.
Western New York Alzheimer's Caregiver Partnership: Assists caregivers of persons with Alzheimer’s or other dementia with care consultation and assessment, caregiver support groups, caregiver education, respite assistance, enrichment events, caregiver events, and transportation. Also offers a variety of volunteer opportunities. Serves residents of Allegany, Cattaraugus, Chautauqua, Erie, Genesee, Niagara and Wyoming counties. For more information, call 896-6388 and for services in your county call (800) 342-9871.
CASE Niagara (285-8224, Ext. 215): 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.
State Department of Health: The department website shares information about home care as well as assisted and skilled living facilities, including how to select one, profiles of each one, their deficiencies and a list of patient rights.
Long Term Care Ombudsman Program (817-9222): People Inc.-administered program places family advocates at many regional assisted living and skilled nursing facilities to serve as a go-between to bring concerns of loved ones to staff and administrators.
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 Coalition. “It may be a care coordination program, a disease management program, or a palliative care program.”
Center for Elder Law and Justice (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 (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.
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 email@example.com.
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. Click here to find classes in Erie County or call Erie County Senior Services at 858-2177.
Living Your Best With Dementia: The Alzheimer’s Association Western New York Chapter in mid-January will offer a unique program for those recently diagnosed with Alzheimer’s disease, mild cognitive impairment, or another related dementia. “Living Your Best with Dementia” will run for a limited time and include education about the disease, information about community support services, care planning opportunities and social interaction with those facing a similar challenge. The program will run on a monthly basis for a limited number of meetings. Those interested in participating, or learning more about other local programs and services, can call 800-272-3900 during weekday business hours.
Resources at the Buffalo & Erie County Public Libraries to help caregivers
“The Family Caregiver’s Manual: A practical planning guide to managing the care of your loved one,” by David Levy
“The Dementia Caregiver: A guide to caring for someone with Alzheimer’s disease and other neurocognitive disorders,”
by Marc E. Agronin
"The Caregiver’s Companion: Caring for your loved one medically, financially and emotionally while caring for yourself,”
by Carolyn Brent
“Juggling Life, Work, and Caregiving,” by Amy Goyer
“Caregiver’s Handbook: A practical, visual guide for the home caregiver,” by DK Publishing
“Leaning into Sharp Points: Practical guidance and nurturing support for caregivers,” by Stan Goldberg
Readers might also visit the Library’s Caregiving Subject Guide, which contains links to selected websites including automatic catalog searches for more books and videos on this topic. Click here.
Twitter: @BNrefresh, @ScottBScanlon