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Guilt, worry make transition to elder care a tough decision

Rochester Business Journal
July 18, 2014

“It’s a very emotional decision. People know that once (they) make this decision, it’s permanent,” says Margaret Hance, clinical coordinator for the Alzheimer’s Association in Rochester. (Photo by Kimberly McKinzie)

A schoolteacher and nurse, Johnnie Lehman loved life. But a series of minor strokes and a diagnosis of Alzheimer’s disease have robbed her of that and taken her from her family home to a memory care residence at Cottage Grove.

Lehman’s husband, Edward, first had an inkling that something was wrong with his wife when a neurologist asked him to sit in on a routine appointment.

“I was just floored; question after question after question, Johnnie couldn’t do a bloody thing,” he recalls.

The evidence of his wife’s condition slapped him in the face.

“It was so powerful and discouraging to see my wife not be able to answer these questions. They pointed to a drawing of a lion, and she couldn’t identify it. Two years before she had come back from a trip to Tanzania, where we took two of our grandchildren. She had lived with lions,” Lehman says emphatically. “It was really a horrible experience to watch.”

Roughly a year after evidence of her dementia surfaced, Lehman was forced to place his wife in an elder care facility.

“I was her caregiver 24/7 for that first year. I knew that my blood pressure was way up, that I was a bit more nervous than usual,” he says. “Then I talked with my pastor, I talked with my doctor, I talked with my therapist, I talked with Johnnie’s doctor. All these people said the same thing: In a well-organized and well-grounded care facility, Johnnie will get better care than you are able to give her.”

Experts say placing a loved one in an elder care facility can be one of the most difficult decisions a spouse or other family member will make, but knowing in advance when that transition should be made can help ease stress.

“There can be a number of things that happen that might precipitate looking at long-term care,” says Margaret Hance, clinical coordinator for the Alzheimer’s Association in Rochester. “It could be that maybe it’s a spouse that’s a primary caregiver; maybe the spouse takes ill.”

Hance also notes that families often are spread out across the country, which means fewer people around on a daily basis to pitch in with care. Additionally, when an elderly family member becomes incontinent or needs help with hygiene or transferring into a shower or bed, that can become problematic, especially if the caregiver is slight or has his own health problems.

“One of the biggest ones with dementia can be behavior changes, personality changes, wandering,” Hance adds. “Sometimes the sleep cycles can get changed. Sometimes they’re up all night and sleeping during the day.”

Tough call
Barbara Lopa knew it was time to place her husband, Mike, in a home when she began passing out during the day from lack of sleep.

“He was getting to the point where he was up 24/7,” Lopa recalls. “I started passing out because he was up 24/7. Safety was an issue. That was a message.”

Lopa cared for her husband for a number of years before moving him first to a facility run by St. John’s and eventually to St. John’s Green House in Penfield.

“He was getting difficult to manage,” Lopa says of her husband of 53 years. “If he didn’t understand what I was saying, he would stiffen and wouldn’t let me walk him to a chair or bring him back to bed.”

Disruption of sleep is a big factor in caregiver burnout, says Kristan Tabacco, director of admissions for St. Ann’s Community. Dementia patients often experience sundowner syndrome, where symptoms are more prevalent in afternoon and evening.

“They’re OK in the beginning of the day, but as the day goes on, you might start to see some gradual confusion,” Tabacco notes. “For some people it’s a significant difference. Is that person going to walk out of the front door and start walking down the street and not know how to get home?”

Hance says safety is of great concern with elderly individuals living alone or with a caregiver.

“Are they going in and putting the stove on and walking away? Are they wandering outside the house?” she says. “Some people may come back easily, and others may have a harder time being redirected back home. That’s something that may precipitate another care plan.”

Tabacco says when she and her colleagues discuss living options with families, the most important thing they talk about is safety, for both patient and caregiver.

“Are they physically able to maintain the household?” Tabacco asks. “What happens if the healthier spouse ends up having a physical decline themselves? Or what if they end up in the hospital? What happens to the other person?”

Tabacco often sees elderly individuals who also have difficulties with taking medication.

“They may forget what day of the week it is, so they double dose on pills,” she explains. “Medications can lead to falls because they’re overdosing themselves or they have a drug interaction.”

The placement of an elderly individual in a home often occurs when adult children have visited after some time away. They may notice a previously meticulous home in disarray or see that one parent has taken on more household responsibility than used to be normal. There may be a stack of bills that has not been paid, Tabacco says. Or adult children may notice that a parent is going to the doctor more often.

These signs generally indicate that an elderly loved one is in need of help, which may take the form of an adult day care placement or an aide in the home, experts say. But if in-home help is not available or the individual has declined to the point of needing placement in a senior facility, the decision can be difficult.

“It’s a very emotional decision,” Hance says. “People know that once (they) make this decision, it’s permanent. Even though a lot of caregivers are burned out with caregiving, there’s still that emotional connection.”

Tabacco says guilt plays a role in the decision-making process, and often it is what keeps a spouse or child from placing a family member in a facility.

“No one wants to put their loved one in long-term care. This is my mom, and she took care of me,” she says. “Or this is my husband or wife, and I feel like I’m giving up on them if they go into a nursing home.”

Some of the guilt is based on past experiences, what individuals heard or saw years earlier when their grandparents were in nursing homes, Tabacco says. But long-term care has improved a great deal in recent years, she adds.

“Years ago it was very institutionalized and it was focused on tasks that needed to be done. It’s become much more person-centered,” Tabacco explains. “Residents do have a choice in what they want.”

Picking a facility
Lopa, whose husband is at the Green House, did not want a medical emergency to be the reason her husband was placed in a home.

“I didn’t want to do that to Mike,” she says, describing her husband as a positive, happy person who enjoyed music and loved to dance. “I’ve known Mike since the eighth grade. I’ve loved him since the ninth grade. It’s very hard for a spouse.”

When Lopa and her daughters began researching homes, she was surprised to learn that a room was available at a St. John’s residence. When she received the call, she asked if the room could be held for a couple of months while she made a decision. She was not ready, she says.

“They said, ‘No, you can either bring him in tomorrow or Monday,’” Lopa recalls. “That made the decision for me.”

Though initially her husband seemed to like the facility, Lopa learned quickly that it was not the appropriate atmosphere for him, given his relatively young age and mental acuity.

“There was no stimulation for him there,” she says. “I knew he was declining because he had no one to talk to, no one he could interact with.”

After just two weeks of waiting, the Green House room opened up and Lopa had her husband transferred there. Coincidentally, the room her husband moved into had previously belonged to a neighbor of hers when she was a child.

“It was like God was watching over us,” she says. “He loves the staff, and they love him too.”

Choosing a facility can be nearly as difficult as making the decision to place a loved one in one.

Like other organizations in the area, St. Ann’s has numerous options ranging from independent living to assisted living to memory care and enhanced assisted living, as well as long-term care facilities. Independent living is much like living in an apartment, Tabacco says, but residents can add dining options, housekeeping and maintenance.

Assisted living and memory care offer everything independent living facilities offer but have aides to assist with the activities of daily living such as bathing, dressing, meals and medication dispensing.

Enhanced assisted living is a steppingstone between assisted living and long-term care. It is ideal for someone who needs help walking or getting in and out of chairs or bed.

“It allows people to stay in that higher level of independence,” Tabacco says. “The goal is always to keep people in the least restrictive environment. As long as we can maintain their safety, we want people to be as independent as possible.”

Long-term care facilities generally are for individuals who are physically compromised or have complex medical issues and the family or outside agencies cannot guarantee 24-hour care, Tabacco says.

“This is the full spectrum of assistance, so you have 24-hour nursing care, you have physicians on call,” she explains.

Being proactive
Prior to choosing a type of facility, experts and those who have been through the process agree that finding an attorney who specializes in elder law is a must.

Miles Zatkowsky, elder attorney and partner at Dutcher and Zatkowsky, says knowing when to place a loved one in a home is not a legal issue but quickly becomes one when safety is involved.

“What we’re seeing more and more of is the healthier spouse is getting ill faster. Now you have two people to worry about,” Zatkowsky says. “Waiting for a crisis could be a significant problem. What if the elderly person falls and can’t get to the phone? How long will they be lying on the floor without food, hydration, before someone stumbles upon them?”

He and his partner—both of whom have firsthand knowledge of caregiving and elder safety because of their own parents—always encourage clients to get a safety alert button they can wear to call for help if they have a fall or other accident.

Zatkowsky also suggests that long before an individual needs around-the-clock care, the family should arrange a power of attorney and a health care proxy. A power of attorney is legal authorization to represent or act on another’s behalf. A health care proxy allows an individual to appoint a person to make health care decisions if the patient becomes incapacitated.

A power of attorney also allows individuals to have financial powers. Allowing gifting powers means that a person’s agent can give away a part of the individual’s assets to save money, particularly with estate taxes, should the individual lose the capacity to make decisions.

Zatkowsky also advises clients to find an attorney who is well-versed on Medicaid and veterans’ benefits before choosing an elder facility or drawing up legal documents pertaining to an elder’s care.

“Medicaid is very complex, and it’s always changing. You can’t dabble in it,” Zatkowsky says. “If you dabble in it, you will make mistakes and your clients will pay the price.”

Hance of the Alzheimer’s Association says she advises people to get an attorney and start making decisions together as soon as possible.

“The earlier, the better,” she says. “You never know when there’s going to be something unexpected, like an illness, that may cause you to have to make a decision you weren’t anticipating.”

Tabacco agrees.

“A lot of times what we’ll see is people end up in an emergency room and that’s when the family realizes they need long-term care tomorrow and they can’t go back home,” she says. “When someone is in the emergency department, that’s really not the best time to start looking for long-term care. It causes more panic and anxiety. You’re not going to jinx yourself by looking for it ahead of time.”

Indeed, Lopa, who has been in a support group for a number of years, knew long ago that she had to prepare herself for the inevitable.

“Because of the support group, I knew that I had to start planning ahead, start researching nursing homes,” she says. “I tell myself it is what it is; I can’t change it. You have to accept it. But it’s still pretty hard to live with.”

7/18/14 (c) 2014 Rochester Business Journal. To obtain permission to reprint this article, call 585-546-8303 or email service@rbj.net.




What You're Saying 

Randi Minetor at 10:34:09 AM on 7/31/2014
It's remarkable that the RBJ, of all publications, would feature an article like this without mentioning one of the most challenging parts of choosing an elder care facility: the cost. Assisted living with memory care can cost as much as $7,000 per month here in Rochester, n...  Read More >

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