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This past April, I attended the 2019 Aging in America conference in New Orleans. In addition to (mostly) fabulous weather, delicious food, and great jazz, I attended some inspiring sessions. There were two in particular that offered great ideas for solo agers: “Goodbye Magical Thinking–Real Life Planning for Solo Agers” and “The Caregiving Crisis: Who is Going to Care for Everyone?”

Goodbye Magical Thinking–Real Life Planning for Solo Agers

This session was presented by Joy Loverde, author of “Who Will Take Care of Me When I’m Old?” and “The Complete Eldercare Planner” and Dr. Sara Zeff Geber, President/Owner of LifeEncore and one of the American Society on Aging’s 2019 “Influencers in Aging.”

So what is magical thinking when it comes to aging? According to Loverde and Geber it’s “the belief that we are going to live healthfully until we suddenly die peacefully, in our sleep, after a fabulous day at the beach and an amazing dinner.” In other words, denial. As I learned in another conference session on palliative care, 70% of Americans wish to die at home and 70% don’t. Think about that for a moment. 

And who are solo agers? Geber said she initially conceived the term solely for people who don’t have children, but like the MN Solo Senior Task Force, she expanded the term to include people who are aging alone for any reason.

The advice in this session boiled down to three things for me: 1) get your legal documentation in order with the consult of an elder law attorney to make sure your health care and financial wishes are known, 2) consider communal living in one form or another, and 3) maintain a strong friendship network, particularly with people younger than you. While little of this was new to me, it was a good reminder and fire under my butt to complete my legal documentation. It was also affirming to see a completely packed room of people and know that I’m not alone with these concerns. Additionally, several things really stood out for me:

• Avoid guardianship or conservatorship if at all possible,  i.e., the state making health and financial decisions for you if you’re deemed mentally incapacitated. Apparently there are many horror stories out there and little oversight in this area. 
• Realize that your relationships will become even more of a revolving door as you age and make sure you ‘refill the pipeline.’ I’ve been struggling with this one lately, as several of my friends have moved away, and several have decided to have children when I thought we were ‘aging alone’ together. It’s hard not to feel abandoned. But this was a good reminder that this is just life; the only constant is change. And the only thing you can do is to keep making new friends across generations and hope that if and when help is needed, people will be there for you and you can be there for them. 
• I’m not alone in thinking the “aging in place” movement isn’t the greatest idea for solo agers. Geber agrees with me. She said the top two challenges she hears about aging are ensuring the money lasts and the many unforeseen problems with aging in your existing home. Aging in place is a huge amount of work/responsibility for a single person who is likely also dealing with health challenges. So I intend to age communally, whether that be in co-housing, with roommates, in a NORC (naturally occurring retirement community, e.g. a condo complex with friends/people looking out for one another), or next door to friends with a ‘village’ to support us.
• Think about who you’d call at 2 a.m. if you needed help and adjust your life accordingly if there isn’t someone you can name. A session participant brought this up. She works with seniors and cited the time when one of her clients was very sick, but not sick enough to call 911. The client didn’t know what to do. This is related to your housing choices as you age. Living alone just doesn’t sound great to me because of things like this.
• In addition to getting your legal documentation in order, make a video of yourself expressing your medical and financial wishes and make sure several people have copies. This is an easy way to make sure your wishes are known.

The Caregiving Crisis: Who is Going to Care for Everyone?

This session was presented by Sheila Warnock, Founder and CEO of ShareTheCaregiving, Inc. and Co-author of Share the Care. Warnock cited the shortage of professional caregivers that will only get worse in the coming years, and therefore the need for people to help one another.

The idea for the ‘Share the Care’ guidebook was born primarily out of her experience being a caregiver. She was the sole caregiver for her mother in the 80’s and also helped care for her best friend Susan, who was diagnosed with cancer. In 1988, a therapist told Susan she needed to stop trying to be so strong and should reach out and ask others for help. Warnock became part of a group of 12 women (mostly strangers to each other) who worked together for three and a half years to care for Susan. The contrast of caring for her mother without support to the experience of sharing responsibilities with a group proved to Warnock that this new collaborative approach to caregiving was something of immeasurable value and needed to be shared with caregivers everywhere. Thus, the Share the Care guidebook was developed: a step-by-step format showing others how to pool their time, efforts, and resources to assist a friend or loved one facing a health, aging, or medical crisis.

It seems like such a simple concept that should happen organically, but in reality it isn’t and doesn’t. For example, Warnock said that her experience has shown that church congregations are great at helping with short-term care needs, such as bringing food to the patient/family, but not good at long-term care needs. This isn’t because people don’t want to help, but because they don’t know how and there’s no one organizing/directing them. As the Share the Care website says, “Caregiving will touch everyone at some point in life yet it often remains in the shadows of the public/media spotlight because it does not make for a picture that melts the heart but rather one to be avoided at all costs. Not so much because people are uncaring but rather frightened and uneducated. Sometimes, friends disappear when illness strikes because they don’t know ‘what to do or what to say.’” 

Warnock briefly explained how Share the Care works. Two people come together and identify a group of caregivers. Then, using a weekly rotating captain system, two captains contact the patient/friend and ask what he/she needs for the week. These captains farm out those tasks to the remaining group. This ensures that the patient/friend doesn’t have to ask for help, which takes an emotional load off of them. Each caregiver determines at the outset what he/she is willing to assist with. For example, some may feel comfortable helping with activities of daily living (e.g., bathing, dressing, feeding, toileting), while others might prefer to make grocery runs or help mow the lawn. Additionally, caregivers can choose their level of involvement as a “full member” or  “free floater.” A session participant asked if this can work for patients with dementia, and Warnock assured her it can and said there’s a chapter in the book dedicated to this. She said the key to helping patients with dementia is to keep the group of people that have direct contact with the patient very small, and have a larger group helping behind the scenes.

Warnock acknowledged that there are limitations to this system, and at a certain point, paid care may need to be involved. She said that Share the Care may not be able to completely substitute for paid care, but complements it well by reducing both the hours and cost associated with it. I do wonder what happens if you’re a group of friends living and aging together and you all need caregiving assistance at the same time. Who is the caregiver and the patient? My hope would be that lightning wouldn’t strike everyone at the same time, and between that and the financial benefit of sharing paid care, a solution could be found.

I feel the greatest strength of the Share the Care concept is the reduction in liability concerns and restrictions placed on what caregivers can do. This is the result of the absence of a coordinating third party and the fact that the patient likely already has some type of relationship with each caregiver. I asked Warnock if anyone has ever had liability issues using Share the Care and she said there have been none to date over 24 years.

ElderFriends is a volunteer-based program that provides companionship, outreach, and advocacy services to isolated older adults throughout Seattle and King County. By facilitating regular friendly visits, they strive to meet the emotional needs of isolated older adults, helping them to live a full life, in their own homes, for as long as possible. This is a critical enterprise, as a 2015 study showed that loneliness is the equivalent of smoking 15 cigarettes per day!

From 2011 through 2015, I had an ElderFriend who we’ll call Ann for privacy purposes. Ann and I got together twice a month on average to go out to eat, attend concerts, or participate in other local events together. She was an absolute kick in the pants and I loved our time together. An example of her joie de vivre was the time she met me at my office for one of our building’s summertime lunchtime concerts. She wanted to dance, so dance we did! She also wanted to dance with several men in attendance and wasn’t shy in asking. More than one of my friends declared they wanted to be like Ann when they grew up.

Towards the end of Ann’s life, her exuberance was tampered by medical problems. She stopped participating in many of the activities she loved and spent more time at the doctor. She suffered from depression. Her needs grew, and I wanted to help as much as I could, but also knew the rules that ElderFriend volunteers were supposed to follow, such as don’t advise in financial or medical matters or become someone’s power-of-attorney. In other words, I couldn’t do things for Ann under the banner of ElderFriends that a family member could. Fortunately, in Ann’s case, she did have two adult children living in the Seattle area who were able to step in to an extent. Even then, I felt Ann leaned on me a great deal for certain things. It made me realize how bad the situation could’ve been had Ann not had her children to help. Who would’ve helped her make decisions and advocate for her when she couldn’t do so herself?

I started to envision a program that was “ElderFriends on steroids,” where the limitations on volunteers were removed. I envisioned a civic organization where younger volunteers, particularly those who sensed they might need such assistance in the future and wanted to “pay it forward,” could step in to be advocates for older adults. In return, once they were older, they could expect the same assistance from a new cohort of younger individuals. They could essentially play the “adult child” role for someone and feel comforted that there would be an “adult child” available to help them if and when the time came. But I also envisioned massive roadblocks, such as financial exploitation and liability concerns. Additionally, I wasn’t so naive to think the ElderFriends rules weren’t there for a reason. So I contacted Kiersten Ware, the founder of ElderFriends in Seattle and currently the Executive Director at Store to Door in Portland, to find out what those reasons were. Here are the two key reasons she cited:

• Liability: Some insurance companies won’t provide insurance to volunteer-based organizations unless such limitations are in place. Volunteers are not providing a professional service, and therefore lines have to be drawn because volunteers don’t carry professional liability insurance. These limitations don’t exist when friends are helping one another. But involving a third party requires establishing boundaries.  Since older adults are a target for exploitation, they have reason to be suspect of others.
• Volunteer Burnout: Many older adults live alone, are lonely, and have no network of support. Their needs are incredibly high. If boundaries aren’t put in place, volunteers could potentially overextend themselves. They run the risk of becoming a chore worker or caregiver. Ware said she has observed this happening over the course of her career in the elder care field.

So if “ElderFriends on steroids” won’t work, what will? While an infinite array of medical and social services exist, the void is still the ‘decisional/advocate’ piece, i.e., someone to be the project manager and navigate difficult situations for older adults without family or friends to help them. Ware said she wished she had an answer, but doesn’t; over the past 25 years of her career, people have been proposing ideas but progress has been limited. She said there are systemic cultural problems at play–ageism is rampant, and the denial of death and aging makes people loathe to think about these problems. Additionally, Americans are fiercely independent and shy away from communal living situations that could help them. She said she foresees that the Boomer demographic is not going to sit silently by, however, and hopes they might find answers to this problem.

So what’s my take-away from all this? Barring policy change that increases the pool and reduces the cost of professional health advocates and geriatric care managers, it all comes back to building your support network as best you can. People who foresee themselves aging without familial support need to have active conversations with their friends about what each is willing to do for the other before something happens. Join villages or cohousing. Be as social as you can. Be proactive. And hope for the best. If you have other ideas, I’d love to hear about them in the comments section. Thanks!

I recently spoke with Linda J. Camp, an independent researcher, writer, and consultant located in St. Paul, Minnesota. She’s coordinated a Citizens League Task Force that focused on “solos.” The Task Force Final Report is due out early next year. The Task Force’s working definition for solo seniors, or “solos,” is “individuals, who, by choice or circumstance, function without the support system traditionally provided by family.” She’s also written a white paper on the topic. She shares my concern that solos lack advocates who are able to help them make important life decisions, medical or otherwise. In other words, as Camp stated, “Who’s driving the train?” when a solo is unable to do so themselves. She said the first step is getting people to understand the population that needs help. And as the Task Force discovered, that population is larger than people think, and will likely include all of us at one point or another. Their report says the following:

Overall, Task Force members found it impossible to point to a specific set of characteristics or demographic factors to define the “solo” subsection of the population. While the term “solo” may be useful shorthand, it masks the variations in personal situation, income, culture, physical and mental abilities, personal attitudes, and choices that are present. What is more informative is not to talk about solos as a fixed category, but rather to use “solo-ness” as a descriptor. Solo-ness is not about the absence of friends and family but, as the working definition suggest, the availability and quality of support when there is a need to make health related or end-of-life decisions.

In the context of health decision support, individuals may experience solo-ness temporarily, intermittently, for short or long periods. People without children may never be solo if they are able to craft a support network of health professionals and friends. People with children, who have completed end-of-life documents, may be “functionally” solo if none of these resources is able to meet needs in an emergency. Hence, solo-ness can be viewed as a continuum, with those on one end having an effective plan and those on the other end having no plan at all.

Ageist thinking say that older adults without children, other family, or close friends are destined to lead lonely lives and to struggle with day-to-day activities, particularly when it comes to managing health events and decisions. The Task Force’s discoveries suggest otherwise. A more useful frame is to understand solos as a group diverse in culture, abilities, values, physical and mental capabilities, economic and personal resources, who sometimes need support with health decisions. Solos are not them; solos are likely to be all of us at one time or another.

Camp said she’s found there’s not a lot of research or education happening that’s focusing on this problem. She’s found that most of the focus is on end-of-life decision-making, which is “too late and beside the point.” Furthermore, she’s found that many people that work in senior service professions think this problem has already been addressed with the services that are currently available and/or operate under the assumption that at least one family member will be able to help with decision-making.

Camp said more education is needed to increase awareness of the problem and encourage people to start implementing their solo aging plan in their 50’s, at the latest. There needs to be awareness that that even if people are able to pay for services (and many aren’t), those services–such as professional caregivers and health advocates–are in short supply. I particularly like the conclusion of Camps’ white paper, which I think summarizes the problem:

We have long recognized that people come into this world lacking full capacity and requiring support. In response, we have created an infrastructure to shore up young people until they can fend for themselves. That infrastructure is made up of supportive and substitute decision makers in the form of parents, grandparents, teachers, and coaches, along with laws that, for example, set a minimum age for driving a car or consuming alcoholic beverages. The same kind of infrastructure has not yet been fully crafted for years when capacity declines.

I recently attended the Village to Village Network conference in San Diego. The conference was inspiring–so many people thinking creatively about how community members can support each other as they age. The primary reason I attended was to get a national perspective on how far villages can go to help frail elders that don’t have friends or family to assist them. According to a national survey conducted by the Mather LifeWays Institute on Aging, a majority of village members in the U.S. are still relatively young (74 or younger) and in relatively good health. The services most used by members are transportation and village social events. Half of the members surveyed said they joined a village because of their interest in social engagement, while less than one-fifth said they joined for future service needs. However, needing more intensive services was the top reason for dropping village membership and the average age of village members is increasing nationwide. Therefore, some villages are starting to think about how far they can go with the services they offer to members with more intensive needs. My general sense from the conference is that villages would like to help their members as much as they can, but are often limited by the dreaded “L” word: LIABILITY.

Here are two examples of village services for members with more intensive needs:

• Arlington Neighborhood Village said their members are increasingly frail. They recently piloted a program where they pay to have a Certified Care Manager spend up to 10 hours with a member to conduct a needs assessment. As part of this assessment, the care manager offers expert advice, develops a written care plan, and offers some limited assistance in securing resources for the member. The worst case scenario after the assessment is that the village can no longer support the member and in that instance, they may call family to step in, if available. When asked about how the village handles liability, they said the liability is on the care manager (who has professional insurance) and not on the village.
• The Village in Howard has created “Circles of Care” that are designed to consolidate requests for multiple services for a given member during a short-term period of recovery/recuperation, such as after a hospitalization. A Circle Coordinator and small team of volunteers step in to manage the variety of tasks that may be needed. These are not medical or personal care services, but those things a good neighbor would provide, such as meal preparation and clean-up, pet care, and picking up prescriptions. To reduce liability, volunteers are expressly forbidden to do the following tasks: dispense, administer, or recommend medicines or therapies; assist with activities of daily living, such as bathing, dressing, and toileting; respond to needs between 7pm and 9am; provide emergency transportation to the hospital; act as financial advisor; or act as a certified senior advisor, i.e., no advocacy with doctors or hospitals’ on members’ behalf.

The concern about liability was a thread woven through all of the conference sessions. Many of the villages said they live in states with a “Good Samaritan” law, which is meant to give civil or criminal immunity to those who come to the aid of others without any expectation of reward. This makes villages comfortable allowing their volunteers to provide services that a neighbor might do for another neighbor, such as those described above for the Village in Howard. But assisting with financial concerns or activities of daily living are big no-nos. In one session, someone asked if villages allow their volunteers to help members monitor their medication, and a “no” response was unanimous, as indicated by the vigorous shaking of heads around the room.

I posed the question of how far villages can go with their services during one of the keynote presentations at the conference. The presenters said this is a conversation that is just starting. Given that both assisted living and professional in-home care can be very expensive; more that 1 in 5 Americans older than 65 are–or are at risk of becoming– “elder orphans,” i.e., someone who is aging alone with no family available to address their caregiving needs; and there is a professional caregiver shortage that is only predicted to grow, I hope our society can find ways to help villages and other elder assistance organizations offset their liability so that they can push the envelope as far as possible. What ideas do you have to allow this to happen?

Keep smiling, keep shining, knowing you can always count on me, for sure.

I hope so.

I’m extremely fortunate to have amazing friends who keep me active and engaged. But it’s not just luck. I’ve realized that without children and siblings, apart from my husband, my friends will be critical as I age. Because of that, I’ve made a concerted effort to maintain my friendships. And because many of us don’t have children, we are able to commit quality time to each other. Any time my husband and I consider moving to a different city, we decide against it because we’ve spent many years building up our friend group here. A younger me wouldn’t have been too concerned about finding new friends in a new city, but current me realizes that solid friendships take years to develop and are harder to come by as you age.

Besides being a kick in the pants, my friends are, in fact, helping me live longer. Studies have shown that loneliness is a huge health risk, and having friends may be a bigger bulwark against this than family. One component of this has to be laughter, which might actually be the best medicine. I realized recently that whenever I’m with my friends (my girlfriends, especially), we are laughing (ok, cackling) most of the time.

But here’s the rub: we are all still youngish, with most of us in our late 30’s to early 50’s. What happens when we’re 70? 80? 90? Who will still live near me? Who will still be alive? Many of my friends already complain about the gloomy weather and high cost of living here in Seattle and if they don’t leave soon, it’s likely they’ll leave as they get older. Additionally, many of my friends are fortunate to have siblings and numerous nieces and nephews and may move to be closer to them as they age. My friends and I joke about how it’ll be when we’re living the Golden Girls dream together. Some of us have worked through a handbook on senior cohousing to try and determine if it would be right for us. But the truth is, it’s too soon to know where we’ll be 20-40 years from now, when job constraints don’t limit where we can live. The only thing I can do right now is keep making my friends a priority, enjoying my time with them, and hoping that I’ll be able to count on at least some of them until the end.

One inspired aging-support concept is that of a “village.” Villages are geographically-bound membership-driven organizations that offer volunteer-provided services such as transportation, home repairs, and social connection opportunities. The primary purpose of villages is to allow members to stay in their homes and engaged with their community for as long as possible. Given that 87% of adults 65+ want to “age in place,” i.e., live in their home as they age, this is an idea whose time has come. I volunteer with the Phinney Neighborhood Association (PNA) Village in Seattle since I live in their membership area. (There are at least two other villages in other parts of Seattle.) So far I’ve given PNA Village members rides to the store and doctors’ appointments, helped a member get answers to Medicare questions (as a village-trained health advocate), and have been helping a member administer medication to his aging cat on a weekly basis. (Even animals benefit from village membership!) There are many other volunteer opportunities, such as mowing members’ lawns, helping to frame and hang photos, walking members’ dogs, and simply visiting members for a chat.

I knew that the village was a great idea, but its value really hit home as I was talking to my parents recently. My parents, husband, and I have been discussing the possibility of co-buying together (specifically, buying a home that has an attached or detached accessory dwelling unit, aka “mother-in-law”). My parents’ concern is that they would be a burden on us since my mom no longer drives, and my dad may not be far behind her. I explained the village concept to them and my mom in particular was really attracted to the idea. As we discussed it, we realized that living in a village area could really make the difference between co-buying working vs. not. And this could be true of friends living together as well.

While the village isn’t a complete solution, I think it could be one piece of my “Teresa.” It’s a supportive community that provides needed services and some peace of mind. Additional resources would be needed if I was no longer of fairly sound body and mind, i.e. the point at which I needed to move to assisted living or have an in-home caregiver. Additionally, there’s still the question as to who will be my medical and financial power of attorney (POA). Interestingly, although the PNA Village doesn’t currently provide POAs as a volunteer service, one PNA Village member did find a POA for herself through a contact she made in the village. So although a village can’t fully engineer a “Teresa,” they can provide the opportunity for such connections to develop organically.

So what do I do for my aging parents? To date, I’ve captained their move from from another state to live close to me and my husband, researched their health care providers and services, and taken them to doctors’ appointments, among other things. In the future, I expect I’ll do a lot more, including assisting them with activities of daily living or finding someone to do so, securing appropriate housing for them, and making important medical decisions for them as their durable power of attorney for health care. But the most important thing I’ve done and will continue to do for my parents is provide them with a sense of security. I am their advocate and they know they can trust me. This cannot be overstated and is the crux of the dilemma for myself and anyone else who won’t have their own “Teresa.”

“Yeah, but you’re an anomaly, Teresa. Most people don’t take care of their parents.”

“Having kids is no guarantee that there will be someone to take care of you when you’re older.”

“I wouldn’t want my children to have to take care of me.”

I hear these statements all the time. Yet statistics paint a different story. For example, a 2015 Pew research study that asked respondents from the U.S., Italy, and Germany about the care they provided for an aging parents in the prior 12 months found families are taking the lead role as caregivers for aging adults who need help handling their affairs or caring for themselves. Among adults with an aging parent who needs assistance, solid majorities in all three countries say they or someone else in their family provides most of the care, with few, especially in the U.S. and Italy, saying their parents rely primarily on paid help. According to a another 2015 study, 80% of older people with disabilities in the UK are cared for by their adult children and/or spouse.

While it’s true you can’t be 100% sure your kids will look after you in your later years, you can be 100% sure they won’t if you don’t have any. And if you don’t have a spouse or your spouse predeceases you, no luck there either. Perhaps this is the silver lining: people in my position don’t have the luxury of not planning their later years, since we can’t operate under the assumption that someone will be there to help. It’s unlikely that my “Teresa” will be a single person. Instead, it will probably be an amalgamation of various people, services, and technology. I’ll be exploring what I’m learning about this in future blog posts.