Ethel was a quintessential New York character. She was a woman who loved life, and happily lived alone in a one-bedroom apartment in Soho. Known to most in her neighborhood as Bird Woman, she frequented the local park to feed and talk to her beloved birds. The birds seemed to gravitate towards Ethel, as if they knew that she too had been a world traveler and that they shared an appreciation for taking flight to see the world.
Ethel had dozens of neighborhood friends, who really were more like her fans; they were people she met on a daily basis on the street or in the park, and with whom she had either developed a casual acquaintance or a close friendship. Ethel was seen as a wise woman, and as she aged, her many friends appreciated the advice she had given them through the years, and they in turn looked out for Ethel, on her daily stroll, or called her if they hadn't seen her in a while. It was these friends that noticed, many years ago, that her memory was beginning to slip.
Ethel's main health concern over the years was the severe Osteoarthritis she suffered from, which limited the movement of her fingers and hands. She'd tried several different ways to manage her condition, but eventually she lost the ability to use her hands to write legibly, and began to need help with many simple household tasks.
Ethel was referred to my Care Management practice by a mutual friend, Sy, who suspected that Ethel's memory problem was becoming more severe. Sy worried that with the decline in memory and the problems caused by her osteoarthritis, Ethel was losing the ability to maintain her affairs independently. Sy worked at a neighborhood social service agency. About a month earlier, Ethel had been in touch with Sy, to seek help with writing her checks and other correspondence more legibly. Ethel hired an employee from the agency to help her with these tasks.
When the check-writer saw Ethel's checkbook register, alarm bells went off, as it appeared that Ethel had recently written several very large checks to her building's Superintendent. "Those checks are larger than most people pay for rent for an entire year in a one bedroom apartment in Soho," Sy told me.
As professionals in the field, Sy and I know well the potential risk of financial exploitation faced by older adults with cognitive issues -- particularly if they live alone and have no one regularly overseeing their financial interest (a good article recently in the New York Times brings our attention to the relationship of slipping cognition and financial skills http://www.nytimes.com/2015/04/25/your-money/as-cognitivity-slips-financial-skills-are-often-the-first-to-go.html)
Though at that point we had no clear idea of the extent of Ethel's cognitive issues, we suspected she was being exploited by the superintendent, and that a cognitive impairment led to poor judgement about the huge checks she had written. I sought to determine whether Ethel needed an additional layer of protection from others interested in her money.
After working with Ethel for a time, it became clear that her financial judgement was quite sharp. She was perfectly aware of the gifts she'd been giving, and that she'd even spoken to her accountant beforehand regarding tax ramifications. With regard to her superintendent, she explained that she was simply making good on a promise to him after he had helped her significantly with major projects in her home.
She revealed to me some of the other gifts she'd given to friends and neighbors, "so you won't feel alarmed when you find out," she said. Among many of the gifts she gave were education funds she'd created: several college funds for her relatives and she'd even set up and funded college savings accounts for two small boys, sons of Albanian immigrants she'd met and played with over the years in the neighborhood park. Ethel had always been a woman in charge of her own destiny: she was feisty and independent, and lived her life doing what made her happy. Often, this meant that others were the beneficiaries of her kindness.
Over the next decade, I visited Ethel often and as her memory deteriorated, helped her hire caregivers, then trained them and monitored the care they were giving. At first, Ethel only wanted care during daytime hours, and these women brought her to museums and movies, to the theater and, of course, to her beloved park to see and feed the birds. One early morning Ethel called to tell me that she had fallen out of bed, as she tried to make her way to the bathroom. She knew that the time had come, she told me, to get help at night -- so I found her a nighttime caregiver.
I often commented on how definitive Ethel was in her decision-making. "Often, people waver when making such important choices, but you, Ethel, seem to be so decisive." Ethel laughed at this and shared that this was her plan. She told me that when she turned 65 she had a friend who was 10 years her senior who had been placed in a nursing home after a fall. Ethel said that this woman's experience frightened her, as she had no one in her life who knew that she never, ever wanted to go into a nursing home. So she drew up a plan for herself that included incredible detail of what she wanted as she grew older. This was the plan for how Ethel wanted to age. She'd look at the plan each year and decide whether she wanted or needed to make any changes.
This "Plan" was especially important when Ethel realized that she had symptoms of dementia. She knew when to get help, to hire caregivers, and she knew what she should pay, as she had already researched the caregiver pay scale in her neighborhood. She knew where to go for check-writing, and where to turn for grocery delivery. Ethel had specific ideas of what she wanted her neighbors to know about her condition, and what was to be kept confidential. And she had drafted her Last Will and Testament, and (she drafted) her Living Will. She had also designated an individual to be her Health Care Proxy to carry out her medical affairs, and another individual who would hold her Power of Attorney, to take care of her financial affairs.
As a member of her team, I helped Ethel live the rest of her life in the way she had envisioned for herself and detailed in her Life Plan. I followed Ethel's Plan carefully, and she lived according to her wishes. I think Ethel would be pleased to know that I use her plan as a model to teach my clients and students how to Plan for Aging.
Here are some guidelines based on Ethel's Plan for Aging:
1. Advanced Directives are instructions as to how you'd like to be cared for if you can no longer speak for yourself. They include drawing up a Living Will and designating and individual who will be the Health Care Proxy, and another who will hold a Power of Attorney. Ethel called her Advanced Directives her "Voice for the Future." She'd advise people to be sure to think about who will be able to carry out your wishes and be clear about how important it is to you that they not falter.
2. You can frame your illness and recovery process by choosing your doctors, your hospital and your rehabilitation center preferences before a crisis. Hopefully you'll never need an orthopedic surgeon, but if you ever fall, you'll want to have the name of the one you've researched based on care provided and bedside manner, not the person randomly assigned to you in the Emergency Room.
3. Think about whom and what makes you happy now, and how you can keep these people and activities in your life as you grow old. If you're a club joiner, buy a lifetime membership -- it's worth it. If you're a ballet-goer, keep your seats at the ballet. If you enjoy ballet now, chances are you'll continue to enjoy IT as you age, and you'll appreciate getting out and being with people.
4. If you have dementia and you have the resources to hire someone privately to manage your mail and your paperwork, do so while you can choose the person you want carefully. If you don't have the resources to hire someone privately, ask the person you have designated to hold your Power of Attorney to recommend a trusted social service agency with employees or volunteers to help with check-writing and bill-paying.