Jeff Kahn was planning to move his mother into an assisted living facility before he spotted the Victorian house being gutted two blocks away from his Newton home.

Although he didn’t seriously consider purchasing it, he asked the realtor to fax him the renovation plans.
Visiting the property a few weeks later, he noticed the side porch slated to be made into a doorway. “I looked at it and realized I could put a handicapped ramp there,” Kahn said. That’s when he began to see the house as a future home for his mother.

Five months later, Kahn, 41 at the time, received a phone call from his sister in Philadelphia. Their mother, Hedy, 78, had been diagnosed with ovarian cancer and his sister wanted him to break the news. After Hedy agreed to be treated at the Dana-Farber Cancer Institute in Boston, Kahn asked her to move in with his family in Newton.

“We always got along well but I didn’t know if she would feel as if she would be bothering us,” he said. “She said, ‘No, that would be nice.’ ”

These days, a growing number of parents are moving in with their adult children. And, family gatherings often present the best opportunities to discuss “What if?” strategies for the day parents may no longer be able to live on their own.

“It doesn’t prevent the issues (from occurring) but it certainly makes it a little bit easier for families when they’ve all been involved and they’ve all heard it. Particularly when you let mom and dad weigh in before they reach the point where perhaps they aren’t thinking clearly,” said Robert F. Brooks, CEO of ElderCare Link, an Internet-based referral service specializing in senior care.

There’s lots to consider: Which child, if there is more than one, is best qualified and prepared to host the parent? What outside services might be necessary, such as home care nurses, Meals on Wheels deliveries or a new doctor? And how to keep the parent occupied if the host family works during the day?

Then there’s the cost of moving a parent in and managing his or her health needs.

So how far ahead should families broach the subject?

“I would not link it to age; it’s probably better to link it to the health condition of the parent,” said Dr. Maximiliane Szinovacz, professor and director of UMass-Boston Gerontology Institute. She said to consider whether there’s a visible decline in health or health problems likely to lead to dependency in the future.

When more than one sibling is involved, family issues may arise. The caregiver has most of the physical duties, but the entire family might take on the financial responsibility.

The ground rules need to be discussed beforehand since the caregiver has added expenses when a parent moves in. Families should decide who will share in those costs, or whether the parent will be financially responsible. If unexpected expenses occur, it should be decided which family members will contribute.

Family members should take the load off the host family whenever possible. “There should be some agreement among the siblings to share their parents,” said Suzanne E. Salamon, M.D., director of clinical geriatrics at Beth Israel Deaconess Medical Center. “Frequently what you’ll have is the siblings will live in different cities and the parent goes to live with one. The others should be sure and have the parents come to visit them for a while so that the caregivers can take a vacation.”

Care of a parent is not necessarily forever. Szinovacz said a new health and retirement study conducted by the University of Michigan has found that where there is more than one potential caregiver in a family, the primary caregiver changes over 25 percent of the time. “There are options clearly in terms of adult children negotiating the care and changing the care responsibilities,” she said.

Brooks said families are planning earlier and making the necessary modifications and renovations to their home before a crisis. Not every house can accommodate an older person. “The first thing to set up is the home situation,” Szinovacz said. “What modifications in the home would have to be made to accommodate the older person? Not every house is easy (to maneuver) with wheelchairs if all the bedrooms are upstairs.

“If you don’t have an elevator, there’s no way you can easily get this older person to the bedroom.”

In almost every instance, physical changes will have to be made to the house. Parents don’t want too many steps to climb, especially if they have trouble functioning by themselves or have arthritis.

Before Kahn discussed renovations with his remodelers, he called his mother’s physical therapist, who had been working with her to overcome growing frailty. Kahn discussed his mother’s mobility and upper-body strength, and got suggestions on planning for her arrival.

Eight months after Kahn had spotted the house, his mother had regained her strength and the house was ready for her to move in.

The idea for the ramp that had spurr-ed the move had been replaced with a lift in the garage that led to their kitchen. “She had an electric scooter to go into town with,” said Kahn, who had hoped she’d connect with some of the people at the local community center, but that didn’t happen.

“Someone made the comment that I made the house too nice for her to leave,” Kahn said. She did take advantage of nearby stores. “The fact that we were weren’t sitting in the suburbs in New Hampshire with nowhere to go was a plus,” Kahn said. “She could walk to the stores with her walker.”

Her living space resembled a hospital room. The Kahns installed a doorless shower large enough to accommodate her wheelchair. The shower had ADA-approved no-skid tiles, grab bars on three sides and a shower curtain for privacy. They found a toilet seat that sat high enough so that she didn’t have to stoop down; a portable commode was placed next to her bed in case she couldn’t make it to the bathroom.

Sometimes, when a parent moves in, unexpected compatibility issues arise. “It’s not quite a role reversal but they are coming to live in your home versus when you were living in their home,” Brooks said. “It’s important to set the boundaries of your private time and their private time.”

Ideally, Szinovacz said, you want a separate room for the older person. Frequently, adult children move a parent into a room with a grandchild, believing it’s a perfect match. “That might work in some cases, but in other cases, particularly if the parent has a dementia and unpredictable problematic behaviors, that might not work out very well,” Szinovacz said.

Many children, especially those who live great distances from their parents, are unaware of a parent’s physical shortcomings. “They may be suffering some degree of memory loss or be in the early stages of Alzheimer’s disease,” Salamon said. “I hear a lot from the kids, ‘I just realized how bad her memory is, I didn’t realize how much arthritis she had. I didn’t realize how hard-of-hearing she was.’” It’s only in the emergency situation of having to house them that the children learn how dependent on them their parents are.

The parent also may have special nutrition needs. “People with certain health conditions will need a specific diet so you would have to do double cooking,” Szinovacz said. If children live at home, families may not regularly eat together because of varying school and work schedules.

“The older person who lives there needs three meals a day even though the rest of the family has not had lunch together for the last year,” said Szinovacz. “Some provisions will have to be made that meals are available all day long to the older person.”

Working caregivers may have to arrange for someone to assist their parent for an hour or two. If an older parent is going to be left at home, a Lifeline medical alert system, which allows him or her to call 911 easily in an emergency, should be installed. The parent should have an identification bracelet with an address and phone number so the caregiver could be contacted if the parent gets lost. This is especially important if there are memory problems.

Finding a doctor should be a priority when preparing for a parent to move in. “You should make an appointment and kind of get them plugged in so that if anything goes wrong you already have a system in place,” Salamon said. The parent should select a health care proxy and discuss various emergency scenarios that might arise. “It’s important to know what your parent thinks about resuscitation. Do they want feeding tubes if it ever comes to that?” said Salamon.

Medicine dispersal should also be discussed with the parent’s doctor. If the parent needs assistance taking medication and the child works, home-care nurses can assist with dispersal. The person dispersing the medicine needs to be fully informed.

“One daughter may be responsible for taking mom to the doctor but she is not who gives the medication,” Szinovacz said. “So the doctor will tell her about the medications that are needed and she will tell the other sibling about the medication, and that sibling might then tell her daughter who sometimes gives the medication what to do. At that point, we’ve got three people involved and something can go wrong in terms of the information content.”

Kahn had his own solution. “One of the best things I ever did was I had a sheet I carried with me and on my Palm Pilot that summarized my mother’s medical situation, what she had and what medications she was on,” he said. “It was two paragraphs. The ER physician said he wished everyone came in with this sheet.”

Although Kahn didn’t install a speaker or intercom system for Hedy, he did purchase a device that allowed her to call him on his cell phone whenever necessary. It also included a Lifeline link to 911. Before going to sleep, Kahn placed the cell phone next to his bed.

Many nights, he had to spring into action. “She’d wake up with excruciating pain from reoccurring urinary tract infections. We would have to quickly get to the hospital,” he said. With his 5-foot-3-inch mother weighing only 94 pounds, Kahn would carry her to the car.

Caregiving is stressful. Recent research shows the mortality rate among caregivers is higher than among non-caregivers. “To what extent can the caregiver deal with stress?” asked Szinovacz. “If you have several siblings and one of them is psychologically more fragile and vulnerable than the others, it’s probably better that the others are the caregivers.”

In approximately half the cases where a parent moves in with an adult child, that child is the only caregiver. Often, the caregiver isn’t that young and may also have health problems. “An 85-year-old mother who had a child when she was 20 has a 65-year-old daughter who might also have health problems; a 90-year-old may have a 70-year-old,” Szinovacz said. Then the question becomes, “To what extent is the caregiver, from a health perspective, able to provide care for the elder?”

Consider also how taking in a parent will affect the existing family structure. “If you lack support from your immediate family, then the care situation will become more stressful and at some point probably so stressful that you can’t do it any longer,” Szinovacz said. “If your husband really objects to the parent being in the home and to you spending all this time with the parent, in the long run, it’s probably not going to work out.”

Children, even teenagers, may become stressed if a parent begins devoting more attention to their grandparent than to them.

The state’s Executive Office of Elder Affairs (EOEA) helps families through its Family Caregiver Program. “Once someone has moved in, they (the family member) can call us and we would direct them to one of our facilities in their area,” said EOEA Communications Director Je’Lesia Jones. “They can go to that agency and learn about the different services that we would offer for people that are caregivers.”
Services range from respite care to caregivers support groups. To learn more, call 800 AGE-INFO or visit www.800ageinfo.com.

Hedy Kahn, who was a Nazi concentration camp survivor, lived two years and eight months with ovarian cancer, dying in July 2005. “Not all the times were great,” admitted Jeff Kahn. “We got on each other’s nerves but my daughters got to spend 700 or 800 great days with her. She got to see them do a dance performance and act and she got to be part of the family. I feel fortunate I had the opportunity to take her into our home.”