How Caregivers Can Get Help When They’ve Reached the End of Their RopeMarie Marleyaward-winning author, ‘Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy.’ Co-author of ‘Finding Joy in Alzheimer’s: New Hope for Caregivers’Carolyn is an 85-year-old retired school teacher living independently in Houston, Texas. She is beginning to need assistance managing her affairs and caring for herself. She’s having problems with bathing, dressing, cooking, getting to doctor appointments, doing her shopping and paying her bills. Her only child, Ralph, lives in Dayton, Ohio. He worries about his mother constantly and wishes he lived closer so he could help her out. He knows he needs to take action; he just doesn’t know what to do.Martha is another 85-year-old whose needs are different from those of Carolyn. Martha’s memory and mental functioning are declining at an alarming rate, and she’s received a diagnosis of Alzheimer’s. It’s obvious that she isn’t safe living on her own. Her daughter, Susan, who lives nearby, hired a home-care company to help care for her mother. But Martha hated the arrangement and fired the caregiver the company had sent.Susan knows her mom needs to be placed in a facility, but doesn’t know what level of care would be needed, and she isn’t familiar with any of the facilities in her area. To make things worse, Martha is adamantly refusing to move. Susan has simply reached the end of her rope.Ralph and Susan have something important in common. Namely, both could significantly benefit from the assistance of an aging life care professional. Aging life care is a holistic, client-centered approach to caring for older adults. A professional in this field—founded in 1985—guides, advocates, and serves as a resource to families caring for an older relative.You may need an aging life care professional if:• The person you are caring for has limited or no family support.• Your family has just become involved with helping the individual and needs direction about available services.• The person you are caring for has multiple medical or psychological issues.• The person you are caring for is unable to live safely in his/her current environment.• Your family is either “burned out” or confused about care solutions.• Your family has limited time and/or expertise in dealing with your loved one’s chronic care needs.• Your family is at odds regarding care decisions.• The person you are caring for is not pleased with current care providers and requires advocacy.• The person you are caring for is confused about his/her own financial and/or legal situation.• Your family needs education and/or direction in dealing with behaviors associated with dementia.Aging life care professionals are engaged to assist in a variety of areas, such as:• Housing – helping families evaluate and select appropriate level of housing or residential options.• Home care services – determining types of services that are right for a client and assisting the family to engage and monitor those services.• Medical management – attending doctor appointments, facilitating communication between doctor, client, and family, and, if appropriate, monitoring the client’s adherence to medical orders and instructions.• Communication – keeping family members and professionals informed as to the well-being and changing needs of the client.• Social activities – providing opportunity for client to engage in social, recreational, or cultural activities that enrich their quality of life.• Legal – referring to or consulting with an elder law attorney; providing expert opinion for courts• Financial – may include reviewing or overseeing bill paying or consulting with an accountant. • Entitlements – providing information on federal and state entitlements; connecting families to local programs• Safety and security – monitoring the client at home; recommending technologies to add to security or safety; observing changes and potential risks of exploitation or abuse.Aging life care professionals typically charge between $100 and $200 per hour, although the fee may rise to $250 per hour in some large metropolitan areas. Medicare does not cover the cost but some long-term care insurance companies do. To find an aging life care professional in your area, go to AgingLifeCare.org or call the Aging Life Care Association at 520-881-8008.A slightly different version of this article was published on the Alzheimer’s Reading Room.Marie Marley is the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy, and the co-author (with Daniel C. Potts, MD, FAAN) of Finding Joy in Alzheimer’s: New Hope for Caregivers. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.
By KAYA LATERMANJULY 22, 2016
In her long career as a psychiatrist, Dr. Phyllis Harrison-Ross has been described by friends and colleagues as practical and calm. But two other traits, humor and patience, went right out the window when she decided to downsize.“You ask yourself what you want to keep, and the answer is ‘everything,’ ” said Dr. Harrison-Ross, who turns 80 next month. “It’s an emotional roller coaster that takes a toll on you. It’s very tiring.“I thought I could get down to the bare essence of things myself,” she said. “But that proved to be very difficult, much more than I had expected.”Her solution: Dr. Harrison-Ross hired a senior move manager.Moving is stressful at any age, but for those who have lived in one place for many years, getting rid of things that have accumulated over decades is a large barrier to overcome.As people get older, said David J. Ekerdt, a professor of sociology and gerontology at the University of Kansas, cognitive and physical issues hamper divestment. “It’s also a very emotional task. It’s hard to quantify the attachment one has to certain possessions,” he said, adding that the probability of people divesting themselves of their belongings decreases each decade after age 50.
Senior move managers specialize in the issues that comes with downsizing, including donating and selling items and hiring movers. In New York, these managers maneuver through the often stringent moving and trash-disposal rules adopted by co-ops and condominium buildings. They also deal with out-of-town family members who may want items sent to them. They pack and unpack; they call the cable company. Most also help with decluttering and organizing the homes of seniors who wish to stay put.The specialty is new, so no one can estimate just how many senior move managers there might be in the United States. But Mary Kay Buysse, the executive director of the National Association of Senior Move Managers, said: “Our membership has grown from 22 members in 2002 to nearly 1,000 members today. Though most of our current data is anecdotal, we know members managed over 100,000 senior moves last year.” She added that total revenue among the members was about $150 million last year.Dr. Harrison-Ross, a commissioner of the New York State Commission of Correction and chairwoman of the commission’s medical review board, said she first thought about moving from her four-bedroom co-op on the Upper West Side about five years ago, but didn’t start looking for a smaller place until health issues took a toll about two years ago.“There were rooms I didn’t go into for days,” said Dr. Harrison-Ross, who has lived in the apartment for 48 years.She found a spot in an apartment building for seniors on the Upper West Side, but knew she was in trouble when her first impulse was to “stick everything I had into storage and forget about it unless I needed something.”
She asked a friend to help her get organized. But the two puzzled over how to get rid of large items or whom to call to sell furniture and artwork.Then Dr. Harrison-Ross’s real estate agent referred her to Katie Hustead, who with her husband, Joseph Weston, runs Paper Moon Moves, a Brooklyn company specializing in seniors. She talked to Ms. Hustead on the phone and met with her in person before she signed on.“It’s very important to hire someone that you can trust, because the decisions you’re making are very emotional,” Dr. Harrison-Ross said. “Once I knew I could trust Katie, things started to move forward, because any suggestion she would make, I knew she had thought about what was important to me.”Most senior move managers in New York charge about $100 per hour, higher than the national average. In a 2014 survey conducted by the National Association of Senior Move Managers, 50 percent of the respondents said they charged between $41 and $60 per hour.Ms. Hustead said she likes potential clients to get in touch with her about six weeks before a planned move date. She will then sort and inventory all the items in the client’s home and determine what should be donated to charity, given to a friend or relative, sold or trashed. To decide which furniture can be moved into a client’s new home, Ms. Hustead uses Mark On Call, an interior design app, on her iPad, to help clients visualize what furniture fits in what room.
“This is helpful because it shows the client that you can’t bring everything, because it simply won’t fit,” Ms. Hustead said.She also takes dozens of photos of the insides of cabinets, closets and dressers, so if she is asked to unpack after the move, she can recreate the placement of things for her clients.Move managers also have a long list of contacts for specific tasks, Ms. Buysse said. For example, a good move manager will know not to call a top-tier auctioneer for something worth a few thousand dollars, and know which estate liquidators or junk haulers work well with seniors.Move managers can also step in when adult children don’t live near their parents or don’t have time to help sort through belongings. Judith Kahn, who owns Judith Moves You, a Manhattan company that specializes in senior moves, said most seniors can handle an organizational task for only about three hours a day, which can frustrate adult children who have flown in for the weekend and want to get things done quickly.“Kids often have a different idea of how their parents should move, so it’s better if a move manager can be that understanding, neutral person,” Ms. Kahn said.
Linda E. Frankel, a move manager and owner of Artful Transitions NYC in Manhattan, said many urban seniors don’t cull their belongings simply because they don’t have a car to easily transport things. Ms. Frankel said she uses nonprofit organizations like the City Opera Thrift Shop or Housing Works because they have trucks that can be dispatched for large pickups.Items with monetary value are either handed over to auction houses, which take a commission after the items are sold, or to estate liquidators and dealers, who give the seller money upfront.Documents that can authenticate artwork are key, said Robert Berman, an owner of Capo Auction in Long Island City, Queens, who visited Dr. Harrison-Ross at home one afternoon. After looking at her furniture and artwork, which included paintings by Herbert Gentry, an African-American expressionist painter, Mr. Berman took the Whitney baby grand piano, which had been given to her by her parents. She kept the paintings.“This is a nice size, perfect for a Manhattan apartment,” Mr. Berman said of the piano. He estimated it could fetch between $800 and $1,200, from which he would receive a 23 percent commission.Midcentury modern furniture is perhaps most coveted by dealers, while most ornate dining room sets — especially those that come with china cabinets, buffets and hutches — will not sell, according to Ms. Frankel. “It’s sad, because dining room sets were the biggest purchases people of this generation made, and it holds huge sentimental value,” she said. “But even their kids don’t want it.”
She often shows her clients how low similar furniture has been priced on internet commerce sites and how long it takes to sell such items, which quells most ambitions to seek top dollar.Instead, she tells clients that the most likely scenario is that “someone will buy it from a dealer or a thrift store and it will have a new life,” Ms. Frankel said.That said, people hire move managers not just for their organizational skills but for their discerning eye. Ms. Frankel once came across an Arabic manuscript in a pile of books; her client had no idea where it had come from. Ms. Frankel had a hunch it was a rare find and she was right; the book was a late-17th-century Ottoman Quran and sold, she said, through Sotheby’s London in 2014 for about $50,000.Move managers can be found online. Many are referred by real estate agents, estate lawyers, geriatric care managers and staff at senior living facilities.Not surprisingly, specialists in senior moves say their business is growing. According to the New York City Department for the Aging, about 1 million individuals in the five boroughs were 65 years and older in 2010. By 2030, the number is expected to grow to about 1.35 million. The Department of City Planning estimates there will be a total of 8.8 million New Yorkers by 2030, up by about 7 percent from the estimated 8.2 million figure for 2010.
Some people hire move managers to help make it easier to stay in their apartments.When Donald Pandina, 80, and Sal Cigna, 78, a married couple who have lived in a Brooklyn Heights co-op since 1978, called in the cavalry, they had accumulated so much they were using one of their bedrooms “as a garage,” Mr. Pandina said.“There are things in there that we thought would be great to use in our vacation home, which we never purchased,” he said.Mr. Cigna said their spacious apartment seemed more and more crowded. A referral from a friend led to Mr. Weston of Paper Moon, who helped them cull their belongings. “By doing all of this now, I think we’ll be able to make quick decisions if and when we decide to move,” Mr. Pandina said.Many, however, don’t call move managers until the situation is dire. Fran O’Brien, 52, found herself in such a jam when her mother’s health rapidly deteriorated. By early this year, it was clear that her mother, Astrid O’Brien, needed round-the-clock care, and her parents would have to leave their home of 54 years in Riverdale, the Bronx.“It is truly a frightful prospect to suddenly have to determine what you want to keep,” said Robert O’Brien, Fran O’Brien’s father. “I became anxious because I knew I couldn’t do this alone.”In early March, Astrid O’Brien moved into an assisted living facility in Paramus, N.J., and Ms. Kahn of Judith Moves You was hired to sort through the couple’s things. The O’Briens, both philosophy professors at Fordham College at Lincoln Center for more than 50 years, had over a thousand books, mostly on philosophy, Ms. Kahn said.Ms. Kahn and Mr. O’Brien, 85, pared down the collection to about 300 books. Mr. O’Brien said he couldn’t believe how quickly Ms. Kahn worked. In a few weeks she managed to get him moved in with his wife, who died four days later at age 82.For Fran O’Brien, hiring a move manager afforded her precious extra time.“I didn’t want to spend the little time I had left with my mom packing boxes in the Bronx,” Ms. O’Brien said. “It was such a relief when I found Judith.”
When Audrey Davison met someone special at her nursing home, she wanted to love her man.Her nurses and aides at the Hebrew Home at Riverdale did not try to stop her. On the contrary, she was allowed to stay over in her boyfriend’s room with the door shut under the Bronx home’s stated “sexual expression policy.” One aide even made the couple a “Do Not Disturb” sign to hang outside.“I enjoyed it and he was a very good lover,” Ms. Davison, 85, said. “That was part of how close we were: physically touching and kissing.”Ms. Davison is among a number of older Americans who are having intimate relationships well into their 70s and 80s, helped in some cases by Viagra and more tolerant societal attitudes toward sex outside marriage. These aging lovers have challenged traditional notions of growing old and, in some cases, raised logistical and legal issues for their families, caretakers and the institutions they call home.
Nursing homes in New York and across the country have increasingly broached the issue as part of a broader shift from institutional to individualized care, according to nursing home operators and their industry groups. Many have already loosened daily regimens to give residents more choice over, say, what time to bathe or what to eat for dinner. The next step for some is to allow residents the option of having sex, and to provide support for those who do.“Sex falls right smack dab in the middle of who we are as people,” said Marguerite McLaughlin, senior director of quality improvement for the American Health Care Association, the nation’s largest trade association for nursing homes, representing nearly 10,000 of them.The Hebrew Home has stepped up efforts to help residents looking for relationships. Staff members have organized a happy hour and a senior prom, and started a dating service, called G-Date, for Grandparent Date. Currently, about 40 of the 870 residents are involved in a relationship.
Many others are ready for one. Beverly Herzog, 88, a widow, said she missed sharing her bed. Her husband, Bernard, used to lie on the bed with his arm outstretched. Assume the position, he would tell her. She would curl up beside him. “I hate getting into a cold bed,” she said. “I feel no one should be alone.”But intimacy in nursing homes also raises questions about whether some residents can consent to sex. Henry Rayhons, a former Iowa state legislator, was charged with sexual abuse in 2014 after being accused of having sex with his wife, who had severe Alzheimer’s disease and was in a nursing home. A jury found him not guilty.The case helped call attention to the lack of clear guidelines for many nursing homes; only a few, like the Hebrew Home, have any formal policy at all.Dr. Cheryl Phillips, senior vice president for public policy and health services for LeadingAge, an industry group that represents more than 6,000 nonprofit elder-care service providers, including about 2,000 nursing homes, said sex would come up more often as baby boomers moved in. “They’ve been having sex — that’s part of who they are — and just because they’re moving into a nursing home doesn’t mean they’re going to stop having sex,” she said.Daniel Reingold, the president and chief executive of RiverSpring Health, which operates the Hebrew Home, said growing old was all about loss: vision, hearing, mobility, even friends. Why should intimacy have to go, too? “We don’t lose the pleasure that comes with touch,” he said. “If intimacy leads to a sexual relationship, then let’s deal with it as grown-ups.”The nursing home came up with a sexual expression policy in 1995 after a nurse walked in on two residents having sex. When the nurse asked Mr. Reingold what to do, he told her, “Tiptoe out and close the door behind you.”
Before adopting the policy, the Hebrew Home surveyed hundreds of nursing homes in New York and elsewhere, only to find that “most of them even denied that their residents were having sexual relationships,” Mr. Reingold recalled. He later spoke about the findings at an industry conference, asking an audience of more than 200 people if sex was going on in their nursing homes. The only ones who raised their hands were three nuns in the front row, he said.Today, the sexual expression policy is posted on the home’s website and reviewed with staff members. Mr. Reingold said it was intended not only to encourage intimacy among those who want it, but also to protect others from unwanted advances and to set guidelines for the staff. For instance, the policy stipulates that even residents with Alzheimer’s can give consent for a sexual relationship under certain circumstances.Though the nursing home has never been sued over the policy, Mr. Reingold said, some families have objected to such relationships, especially if one of the residents is still married to someone else who is not at the nursing home.
Relationships also mean more drama for the staff, which tries to keep up with who is together and who is not. The dining room can be a land mine. Sometimes, one member of a couple will get jealous when the other pays attention to someone else. Other couples become too amorous, prompting calls to “keep it in your room.”Still, Eileen Dunnion, a registered nurse who has three couples on her floor, said she encouraged her patients to take a chance on a relationship, reminding them, “You get old, you don’t get cold.” A few years ago, she served as a lookout for a man who had two girlfriends. He never got caught. “I did my job well,” Ms. Dunnion said. “Nurses wear many hats.”Kelley Dixon, 74, said sex had become more important to him because it did not happen as regularly as he would like. “It’s not about bang-bang and I’ll see you later,” he said. “It’s about enjoying the company of who you’re having sex with. I’m not keeping track anymore. I don’t have notches on my gun.”
In the past year, a dozen people signed up for G-Date. Half of them were matched by social workers and sent on a first date at an on-site cafe. None found love, though some became friends. “We’re not giving up,” Charlotte Dell, the director of social services, said. “We’re going to get a wedding out of this yet.”Francine Aboyoun, 67, is waiting to be set up through G-Date. She said she remained hopeful that she would meet someone. While living at another nursing home, she met a man who would come to her room at night. Though they did not have sex, they kissed and lay together in her bed. “Wow, it felt like I was young again,” she said.Ms. Davison, who is divorced, said the last thing she ever expected was to find the love of her life at a nursing home. She met Leonard Moche in the elevator. He was smart and made her laugh. She moved to his floor to be closer to him.Ms. Davison said they had been planning to get married when he suddenly became ill; he died this year. She is still grieving.“I think of him as my second husband,” she said. “It was great and unexpected, and wonderful while it lasted.”