Not much distance from the car to the restaurant’s front door. Do I pop the trunk, lift out and assemble the transport chair, help my wife from the car then push her? She’s actually been feeling pretty good today. Just hold my arm, my good arm, she suggests. We’ll walk. I’m easily convinced, partially because I believe her, but perhaps more so because the cumulative effect of caregiving is exhaustion. I’d originally thought of my assistance as lending a helping hand, but over time, realized I was the default caregiver.   

We make our way toward Good Burger laughing at our meandering steps. Just a few years back, we were two highly active, nonstop, straight-ahead adults. Now look at us, a pair of oldsters excited by the prospect of reaching the front door of a burger joint.   

As we enjoy the food, I find myself thinking about the 19 steps my wife will have to manage when we return home. Physical therapists have taught her what to do. Face the railing and hold it with both hands. To ascend, step up with the inside (stronger) foot. Stabilize. Transfer her weight and bring up the other foot. I repeat the instructions and add a little encouragement while stationing myself immediately beneath her, serving as a kind of barrier from a potential tumble.
We finish our meal and begin making slow, fairly steady progress toward our car. Tackling the slight incline, our pace becomes labored and deliberate. We stop. Linda reports that her legs, the knee, the bad hip, her back, everything, hurts all at once. She’s hoping I can bring the car. 
Unfortunately, that would mean leaving her precariously upright, standing alone in the middle of the lot. I’m feeling like one of the jugglers I used to see on the Ed Sullivan Show rushing back and forth trying to coax a series of vertical sticks, each supporting a spinning plate. Back and forth, tweak this one, wiggle that one, else the plate it holds will tumble. Linda just might have a similar trajectory if I leave her to gravity’s whims. Like Sullivan’s performers, my task is to maintain a constant overview, then zero in where I’m needed most. Car, Linda? Linda, car? The routine is a metaphor for portions of each day.    

I remain at my wife’s side. We take deep breaths, minute steps, silent breaks during which we just hold one another. And finally, somehow, we reach the car, then the house, making our way up the stairs. We are done in but not done. She’ll need a bit of assistance getting ready for bed.     

Before my mother and my mother-in-law moved to the Kline Galland Home, a wonderful senior living facility, each of these ladies stayed with us. Linda’s calm empathetic manner was remarkable. It seemed obvious to me that the number one skill a caregiver could offer was patience. Neither of these women was made to feel like a burden. If anything, Linda made sure they realized we were honored to have them in our home.   

My caregiver tipping point for overextending good intentions reflects my energy level, my own relatively minor, but annoying age-related health issues, and how long the day is getting. At 79, I’m not the spry multitasker I may have been back when. I’m a better caregiver when I allow time for myself, for my own interests, or just for some peace and quiet.   

At first, I tried to deal with writing projects while Linda slept. But she wakes often and there are endless interruptions. Writing requires concentration. I began scheduling personal time, with the caveat that flexibility is foundational.   

We tried in-home caregiver assistance to cover my absences and to help in general, but, even with insurance, were only able to afford coverage for portions each day. You request specific hours and dates in advance when contracting with an agency, but Linda’s medical appointments were constantly updated depending on her needs and her doctor’s concerns. The caregiver schedule was in a state of sustained flux. Experienced, energetic help was appreciated. Unfortunately, not all caregivers met our expectations. I became a conduit, passing along requests and explaining how best to handle various tasks. It was easier for me to complete a task than to explain how we wanted it done.   

Maintaining the house, helping Linda, and trying to pursue a few of my own projects seemed to keep me conflicted. Eventually, our kids convinced us that it was time to let go of the home we’d cherished for more than 30 years. It made sense to move to an assisted living facility, a place with a full-time professional staff and maximum coverage.   

Preparation for the move, downsizing, packing and selling the house competed with Linda’s health issues and treatment. But eventually, we settled into a small, friendly, well-run facility. Being here is a relief. Caregivers stop by, straightening up our small apartment, asking Linda if she needs anything. Showers are offered according to a schedule. The housekeeper cleans each Wednesday. Medication Aids show up twice a day, providing the latest version of Linda’s ever- changing prescription regiment. This small army of associates has reduced my load and taken on some of the more essential aspects of caregiving. But, of course, if you add up the total time they spend with my wife during the course of a day, you don’t reach 90 minutes. I cover the other 22.5 hours. Not a complaint, but an observation. 

Aging is an industry as well as a process. There are thousands of devices designed to assist with tasks. Reachers, gizmos to help a person put on socks, to steady shaking hands as they attempt to manipulate eating utensils, there are an assortment of bath chairs, floor-to-ceiling poles that, when stationed properly, are remarkable for getting into or out of bed. These and more allow people to continue taking some responsibility for their own care. And, of course, the more people can do for themselves, the less aid caregivers have to provide. You cannot see it, but I’m winking. 

Know what I am equipped to do best? Help my wife find ways to continue pursuing her passions. Bring flowers from the store so she can arrange them. Sort through boxes of photographs, framing, hanging, arranging, rearranging, transforming our new apartment to an approximation of home. It will never be our old house, a place she misses even more than I do, but we can and do turn up our creative juices to make sure the new digs reflect who we are. 

Linda spent 30 years caring for the shrubbery and flowers that surrounded our home. Now she is in the process of planting a new garden on our balcony. Trips to the nursery—I drive, she mans the GPS. I push the wheelchair, she holds the pots in her lap. We’ve got a system. As we explore the flowers, I’m thinking that caregiving has its gratifying moments. Still, I’m glad to be holding onto the wheelchair. It just might be keeping me from falling over. 

If my caregiving succeeds at all, it is because my wife and I, known for our balancing act—Linda is a semi-retired perfectionist, while I’m prone to the “good enough” school—manage to interrupt our occasionally charged debates with reflective corrections and laughter. An observation: You can lament life’s progression or deal with it. We do our best to keep our good fortune in mind.  

During our five decades of marriage, Linda has gotten me through my own health challenges, as well as through life in general. I’m a writer and an entertainer. For many of those years, she booked the shows and she continues to edit my essays. I am a hopeless dyslexic and she’s perfected my spelling several times a day since 1970. 

Growing old together means sharing the good and bad; the ratio fluctuates. I take a certain satisfaction in being my wife’s caregiver. It’s more than a responsibility. When I do it well and feel appreciated, the frustrations are held at bay and I bask in satisfaction.   
Still, you are never completely off duty. Late at night when I’m on the edge of a dream, I remain sensitized to my wife’s pain. I’m on alert, always. Occasionally I hear her calling out. You okay, I whisper, only to learn I’ve been dreaming. She’s awake, sitting in bed, and wondering why I’ve asked. 

Charles E. Kraus is a writer, entertainer, and memory improvement teacher. Charles is the author of Baffled Again … and Again, a collection of essays. His most recent book, You’ll Never Work Again in Teaneck, NJ (a memoir) is available in local libraries and on Amazon. 

Caregiver tax credit would help hardworking families 

Every day more than 820,000 Washingtonians perform a great labor of love: caring for older parents, spouses, and other loved ones so they can remain at home—where they want to be. 

Caring for a family member or close friend is one of the most important roles we are likely to play in our lifetime.  However, hardworking family caregivers often spend their own money and may risk their jobs to help their loved ones. In fact, caregivers spend an average of more than $7,200 a year of their own money—making it harder for them to afford groceries and pay bills. Many have had to cut down their work hours or quit their jobs because of caregiving responsibilities. 

That’s why AARP is urging Congress to pass the Credit for Caring Act. The federal tax credit of up to $5,000 a year would put money back in the pockets of eligible family caregivers and help defray the costs of caring for a spouse or other loved one with long-term needs.   

Washington state needs family caregivers, and they need a tax credit. Find out more at www.aarp.org/caregiverswa 

This story was made possible by funding support from AARP Washington and BECU. For more information, tips and resources for family caregivers in Washington state, go to: www.aarp.org/caregiverswa.   

Protecting Your Marriage While Caring for a Loved One

Look for the Helpers, Part 1

The post From Helper to Caregiver—An Observation appeared first on 3rd Act Magazine.

In 2008, I became a very unwilling caregiver to Mom, who was living with dementia. Like so many, I approached it with dread, focused on the loss—not the person—hearing only confusion, not the thoughts. Then everything changed. Mom began to paint.   

Her fascinating paintings invited me in—past the fear, expressing thoughts and emotions she was no longer able to articulate verbally. Instead of loss and sadness, we were sharing joy, confounding everything I thought I knew or had been taught about Alzheimer’s. Clearly, here was a mind at work, not an empty shell lost in the fog but a joyful and creative person with a life to live, filled with possibility.   

I learned the first important care partner lesson. I let go of the woman I felt she used to be, embracing instead the wonderful woman who was with me in the moment—not suffering from dementia, but living with it.  

I joined her in real time where there are no worries, no regrets, no deadlines, no hurry—just the moment, clear, precious, and lived as it comes, where everything is, to use Mom’s words, “just delightful.” My visits with Mom stopped being dutiful, becoming for me essential—a source of joy and a path of personal discovery.   

Our life together was filled with hope, joy, and lessons learned—told as Mom lived, in moments, quickly forgotten but filled with laughter and discovery. And me joining her, as a partner, learning how to navigate a life with late-stage dementia, helped build the best possible life for both of us.  

It is the most rewarding thing I have ever done. 

For every caregiver at the beginning of their journey, who may, as I once did, feel only dread, unsure about what to do, what to expect, asking “Now what?” take heart. Amid the sorrow there is hope. Begin with one small step. Find something you both enjoy. For me, it was Mom’s art, but it can be anything—singing a song, taking a walk, enjoying the view, playing a game, or just sitting together and smiling. Enjoy the moment and the person you love will emerge. 

And for the far too many people who think of dementia only with despair, of people living with dementia as no longer there, not worth caring about, with lives not worth living, I invite them to discover a refreshingly different perspective. One that is a much-needed bridge to understanding that people living with dementia are valuable individuals with gifts to give and lives to live, needing and worthy of our support to thrive and live with happiness.   

Thanks, Mom 

Marilyn Raichle, began her career in the performing arts, founding the Seattle International Children’s Festival. In 2007, she received a Master of Public Administration from Harvard’s Kennedy School of Government and is currently the Executive Director of Maude’s Awards for Innovation in Alzheimer’s Care. Raichle’s new book, Don’t Walk Away: A Care Partner’s Journey, is available on Amazon.com. 

Evolution of a Caregiver

The Dawn of a New “Age”

The post A Care Partner’s Journey  appeared first on 3rd Act Magazine.

The menu offered in today’s medical care can seem miraculous. And there is also strong evidence that from this extensive menu, there is much care that doesn’t benefit patients due to overdiagnosis and overtreatment.  

As we age, we inevitably get closer to dying. That said, aging is good. It’s clearly better than dying! But we are approaching death later in life than previous generations. “Late in life care” is not end-of-life, palliative, or hospice care. It’s the concept that later in life we should carefully consider what care will really help us and how we can get it.   

A patient I cared for over many years immigrated to the U.S. in 1968. A former teacher and lawyer, he worked at Boeing and following retirement provided notary and informal legal services to his large ethnic community. I saw him regularly and frequently over many years for management and treatment of chronic conditions such as diabetes and hypertension, and various acute problems. He loved life, his close family, and his work. He lived fully and had fun—going to nightclubs and casinos, line dancing, playing his saxophone and clarinet, and entertaining kids with magic tricks.    

But, as he aged, over time his vision, hearing, and memory slowly worsened. Otherwise, he was in surprisingly good shape, thanks to caring relationships and mutual devotion within his large family. By all accounts, he still enjoyed his life.   

Although I was his longstanding primary care doctor, I didn’t see him as often as you might think and certainly less than in the past. He had reached the stage where he preferred what I call “late-in-life care.”   

Late-in-life care is for people who live to advanced old age, typically without a life-threatening illness. They may need extra attention from family, friends, and care providers. They still need things like flu and COVID vaccines and treatments for troublesome symptoms from conditions such as arthritis, anemia, skin problems, or perhaps a urinary tract infection.  

But care can be harmful in late life. Too much care can upset homeostasis, that delicate sense of internal stability that often helps very old people stay active in their remaining precious years. Late in life most people don’t need the stress and follow-up from diagnostic procedures such as colonoscopies, mammograms, Pap smears, PSA blood tests and others aimed at finding cancer, or certain treatments with great risks, which few would survive. Likewise, frail people do not need drugs that put them at risk for falls and foggy thinking. These are common side effects of many medications for anxiety, trouble sleeping, incontinence, and high blood pressure. Visits to emergency departments or urgent care can lead to high-tech medical tests and interventions causing stress and confusion from which they may not recover.   

Late-in-life care for my patient was in-person in clinic every one to two years. In between visits, his daughter and I discussed his care via phone and e-mail, adjusting medications as needed to treat his diabetes and other chronic conditions. This allowed him to spend his time the way he preferred, watching his favorite TV game shows, taking slow walks to buy lottery tickets, and occasionally having trips to a casino escorted by his grandson.   

Near the end of his life at age 99 he began to fail. Antibiotics cleared a lung infection. His energy waned and he quit going downstairs for breakfast. He stopped eating. His daughters took turns being with him. Two months after he recovered from an otherwise mild pneumonia, after a restless night, he told his daughter “we have to go” and asked for a favorite old woolen cap he liked to wear when it was cold. His daughter put it on him. Then, this well-loved man stopped breathing and died.   

Late-in-life care is not absence of care. It is not asking people to “get out of the way and die,” so younger people can get care as (former Colorado) Governor Richard Lamm infamously suggested in 1984. It’s geared to the short term, immediate needs of a person who has lived a long life and avoiding care of little or only future value. As you might expect it involves planning and clearly expressing personal preferences, especially since health care systems are not typically geared to this kind of care. But with supportive family, friends, and a trusted professional like a primary care doctor or other care partner, it is possible. Most of us, if  we are fortunate to live long enough, would want high-quality, late-in-life care.   

Eric B. Larson, MD, MPH, is a Professor of Medicine at the University of Washington. He was Co-Principal Investigator of the SMARRT trial and formerly Vice President for Research and Healthcare Innovation at Group Health and Kaiser-Permanente Washington. With colleagues he co-founded the long running Adult Changes in Thought (ACT) study in 1986. He continues research through the UW Alzheimer’s Disease Research Center and other projects. He has participated in The Lancet Commission on Dementia since its inception. With co-author Joan DeClaire he wrote the well-received book, Enlightened Aging: Building Resilience for a Long Active Life.  

Rise and Shine — What Gets You Going?

The Caregiver’s Journey Part 3: Getting Caregiving Help

The End of Life and a Good Death: Planning for the Inevitable Can Add Joy to the Journey

The post  LATE IN LIFE CARE appeared first on 3rd Act Magazine.

Rebecca Crichton’s life stage and encore career align with her volunteer interests in aging and the field of hospice and end-of-life care. As Executive Director of Northwest Center for Creative Aging (NWCCA) in Seattle, she designs programs and presentations that incorporate information and practices related to successful aging and its inevitable endpoint.  

At 82, Crichton understands how important it is for her peer group to consider and discuss care needs as they age and get closer to end-of-life. A surprise is how much ambivalence or discomfort people feel about this issue. This can mean they avoid talking about their changing needs with families and friends. 

Crichton’s 50-year-old daughter Erika has worked in the fields of aging, caregiver support and training, and hospice and palliative care for the last 18 years. Because Erika’s career mirrors Crichton’s own interests and expertise, mother and daughter now work together to facilitate important discussions between older adults and those who care about, and for, them.  

Rebecca and Erika sat down for a conversation about this topic and how it relates to them and their own family. 

Rebecca: Erika, I’m delighted we have this opportunity to talk about this topic!  

Erika: Me too. And this is not the first time we have talked about aging and someone’s changing needs for support. We seem to talk about these topics often. 

Rebecca: I was thinking recently about what’s referred to as the ‘safety vs. autonomy spectrum.’ Some people value personal safety more than a sense of independence so will readily accept caregiving support. And some people value their independence over their safety and are OK with the risks that come from living with an illness or disability. What are your thoughts about this idea? 

Erika: Family members can find it hard to support how an older person chooses to live if they are worried about the person’s safety. That’s why conversations between older family members and those who care about them are so important. Open communication related to someone’s changing health or care needs means that when something significant happens there will already be a basis of understanding about what is most important to the older person. Ideally, the appropriate caregiving support can be provided to them in alignment with what they want. 

Rebecca: We know that most caregiving for older people is provided by family members. We also know that many families juggle child-rearing, jobs, and other demands that make it hard to provide the amount of care that an older family member might need.  

Erika: I had a client recently who shared he wanted his family to hire in-home caregiving so that they were not overburdened. I thought it was a beautiful lens to have as an older person—that his care for his family meant he wanted people outside the family to take part in supporting him. 

Rebecca: In the decade since I started working in this field, I have seen some new options for support for people as they age. Often a caregiving agency is hired to help someone, but other times families create a community of support that includes volunteers from their faith community, or a local civic organization. I am on the board of an Aging in Place village in Seattle. We have volunteers who offer everything from gardening and transportation to appointments and companionship. There are also organizations that hire retired people to provide non-medical support to older people. 

Erika: Each person’s living situation has unique factors that will influence planning for support. Just as we talk about how raising a child ‘takes a village’ so does supporting an older person as their care needs change. You and I did that for our friend, Ruth, who lived to be 100 and lived independently up until she died. 

Rebecca: Ruth is a good example of someone who valued independence over personal safety. Since she did not have any family locally, many of her friends came together to ensure she could remain at home. I was honored to be part of her support. 

I want to share two important ideas that relate to both caregiving and end-of-life planning. The first is that thinking carefully about what we want as we get older or become ill can help ensure we live well to the end. The more we share about what we want at the end of our lives means we can be in the present without feeling burdened by thinking about our future needs. And, as we both know, many people don’t know all the aspects of end-of-life planning.  

The second idea is that people generally ‘die the way they live.’ When we make a conscious effort to review our lives before we die—clearing troubled relationships, clarifying our wishes, sharing our values with others who might not know them—we can change default approaches to living that may not have served us well.  

That is why talking about this feels so important. 

Erika: I really like that you are thinking about what’s important to you and that we can talk openly about your life and goals. And I want to say that if your goals change that’s OK, too. Just keep me updated. 

For me, honoring your choices as you get older, even if they aren’t choices I fully agree with, is something I think about quite a bit. I also want to ensure your goals and desires are known to your doctors and other care providers so they can best support you over time. Knowing you have an up-to-date Healthcare Directive, a Power of Attorney for Healthcare, and a will gives me peace of mind around supporting you in the ways you want. 

Another element of our personal situation is that we live in different cities, so I am not immediately available if something happens to you.  

Rebecca: That’s not uncommon. Your father lives in Canada and I know you’ve also talked with him about what he needs as he ages. I also know he has many people around him who are providing a range of support. It’s important to me that you don’t totally give up your life to take care of me in the coming years.  

In your professional experience helping older people, how do you suggest starting a conversation about what someone needs and wants as they age? 

Erika: I had a friend whose mother had a diagnosis of early-stage dementia. They did not live in the same city and her mother did not want to talk about her diagnosis or plan for what should happen as her illness changed. Her daughter felt frustrated. She told me she wanted her mother to have some hired caregiving support, but knew this would make her mom feel she was losing her independence. I suggested she use words that expressed her feelings about her mom’s situation. Something like, ‘Mom, I worry that at some point you might need more help related to your situation, and I am sad we haven’t talked about it. How do you feel about what’s happening?’  This way of acknowledging the emotional elements of the situation allowed them to talk about what her mother’s diagnosis meant to each of them and how the daughter could best support her mother from afar. 

Rebecca: That’s a good example of a ‘proactive discussion’ instead of a ‘reactive discussion’. I’ve seen friends and their families trying to talk through caregiving issues during a crisis of some sort, often health related. It is more stressful to talk about these things during a crisis. We should also mention again that a discussion about aging and care support is not a one-time event. And as we both know, it’s common for families to completely avoid these discussions. 

Erika: These conversations become easier the more we have them. And if there are particularly challenging dynamics in a family related to aging or illness, finding a neutral person to facilitate the discussion can be helpful, which is what I do. In my experience, when the discussion gets started from a place of positive intent, it leads to the right dialogue and people feel better about the overall situation they are experiencing. 

Rebecca: As my daughter do you think we are having the right conversations? 

Erika: I do! And we’re not done. I feel lucky that you are still in good health and that you have a strong community of friends and extended family around you. And I also know that might change over time. I want to keep talking about this topic so I can help you in the right ways as things change. 

Rebecca: I’m glad we can talk about these issues and that we are working together to get other people talking, too! 

The following suggestions can be a good starting point for anyone who has not yet talked about aging with their family. 

• Parent/Elder: “I want to share with you what is most important to me as I get older and what support I might need as I age. Can we talk about this soon? 

• Parent/Elder: “As I see my friends getting older, I’m thinking about my own situation and I want to talk about how you can best support me.” 

• Adult Child: “I hope we can talk about what your needs for the future might be and how I will be involved.” 

• Adult Child: “I want to talk about what I can do to best support you if your need for support starts to change.” 

Rebecca Crichton is Executive Director of Northwest Center for Creative Aging (NWCCA) and brings wisdom and purpose to her work with the aging community in the Puget Sound area.  

Trained as a hospice volunteer, Rebecca continues to teach and facilitate grief and resilience support groups for several organizations. Rebecca has master’s degrees in child development and organizational development and is a certified coach. 

 Erika Crichton completed her Master of Social Work degree at Columbia University in 2006. She has worked in the fields of aging, disability and dementia services, caregiver support and training, and hospice and palliative care. Erika has extensive experience as a medical social worker and has also held leadership roles in large health care systems. She recently started offering personalized health and care planning support through her business, Open Ended Support (www.openendedsupport.com.)  

Erika is a Washington state licensed advanced social worker and trained Dignity Therapy© practitioner. She holds advance certifications from the National Association of Social Work and the Center to Advance Palliative Care. 

This story was made possible by funding support from AARP Washington and BECU. For more information, tips and resources for family caregivers in Washington state, visit www.aarp.org/caregiverswa. 

The Importance of Difficult Discussions

Rebecca Crichton: Creative Aging

Mamma’s Manna – A Mother’s Legacy to her Family

The post Cheers to the Future! Talking Across Generations appeared first on 3rd Act Magazine.

“Are there other ways to get the tractor to town besides driving it yourself?” I asked Dad before going to bed. The late hour and residual jet lag were not optimal conditions for meaningful discussion but I asked anyway because I was anxious. For months, we had discussed, long-distance, his decision to sell the tractor and now we were at the point of disposition. How was “it” going to get to town? One more decision. 

“Yeah, it would cost about a hundred bucks to tow it,” he offered, with a resistant, ‘I don’t want to pay it,’ tone in his voice. 

My “Pop” is wired for doing things himself and when he can save a dime, well, it’s like winning a lottery bet. Equipped with mechanical engineering “know-how” and a good measure of initiative and devotion, he thrives on his list of projects. A self-described tinkerer, he is always up to something, especially around taking care of the house he and Mom built together. She’s been gone for seven years, now. 

While “know-how,” initiative, and resilience have served him well, he’s managed to get himself into a few injurious situations in recent years resulting in hospitalizations and rehab stays. His journey to honesty and awareness regarding his (evolving and devolving) physical capacities has been fraught at times with stubbornness, injury, frustration, and sometimes, a touch of foolishness. This weighs on me, living so far away. 

“Dad, I know you love driving the tractor, and I just don’t feel comfortable with the idea of you doing this.” I worried about the unpredictable impacts of a 10-mile tractor ride exertion on a person with chronic spinal limitations. 

He acknowledged my concern with a nod, but no words. We retired for the night. 

On some level, I knew he had already mapped this whole trip, the route, the rest stops, and the contingency plans in the event the old ’64 International tractor might take its last gasp on the way. This project had become a dream, imagining a “last ride” out on the road. 

Chowan County countryside is beautiful in springtime, with farm fields tilled, and being made ready for planting. Farmhouses, barns, and small family graveyards of extended relatives would mark the route. Driving in the country is a spiritual experience. You can go slow. 

We met at the kitchen table the next morning. His breakfast of choice, a bowl of runny instant cheese grits, a side of sausage links, and a cup of instant coffee, all prepared in the microwave, awaited him. 

“Morning, Pop,” I plopped at the table beside him. 

“Morning sweetie,” he returned. 

We sat together, quiet moments passing. Both of us being introverts, it’s a relief to not have to fill the space between us with words so early in the day. 

It had been five months since our last visit. Sizing him up, he appeared relaxed, and less achy in his body and mood. Having my husband and I around for the last few days already seemed to be “re-filling” his reservoir. Getting up to nuke his coffee again, he moved with ease. 

Before coming down for breakfast, I rehearsed my very good reasons why Dad should not drive the tractor to town himself. To be honest, I didn’t know if I had it in me to extend emotional support and advocacy once again (across the miles) because of a bad choice made. Besides, what responsible daughter lets her 89-and-a-half-year-old parent get up on a tractor? My reasoning seemed very sensible and justified. 

Finishing breakfast, I lingered at the table, waiting for any cues from him about our exchange the night before. 

“I’ve decided I want to try driving the tractor to town … I feel up to it … you and Fred will be there if we need to make adjustments along the way … I want to try.” 

Initially, the clarity of his declaration was disorienting. I was all prepared to do another round of pros and cons with him, but obviously, he had already sized me up and determined it best to make the call for himself. 

“So having it towed is really off the table?” I ask. 

“I want to try,” he repeated himself. 

I felt my exhale, all my reasoned thoughts and exhaustion give way like water that finally gets to tumble over a cliff edge, set loose. I was slowly realizing that he didn’t just want to do this, he needed to do this. Further, the power of his need would also require me to relinquish my own urgent need to protect him. 

Instinctively pivoting, searching for a new inner footing, I heard compassion arise from within: “You can persist with your protecting, raining on his parade, or you can yield, and let be.” 

“Well, okay,” I turned, looking directly toward him. “What can I do to help?” 

Things moved swiftly from there. Having my nod of “blessing,” Dad collected himself, calling out signals for the next steps to be ready to leave around 2 p.m. 

He climbed up on the tractor, his spirit and body moving slowly but with lightness and assurance. He pressed the ignition button and the old motor turned over once again on the first try, a good sign. 

Cinching the chin strap of his straw hat, he called above the engine noise. 

“I’ll see you at the farm,” he said with a smile, and off he went with a wave, clutch smoothly released, deftly shifting to second and then third gear before reaching the first curve down the road. 

We followed him at a just-right distance, meeting him at his rest stops with the watering bottle and hoots of enthusiasm. He looked so strong, relaxed, and SO very happy. And I felt so relieved and joyful, joining him in exhilaration for the fulfillment of his dream. We were all in all the way to town. 

Agency is the freedom to choose and to act. To support (allow) this free choice in one we care for, is an act of love. 

Rev. Harriet Platts, 62, retired hospice chaplain, describes herself as an urban contemplative, seeking wholeness, balance in the “everyday” of life. Her creative outlets include iPhone photography, particularly portraitures, and writing urban field notes about what she experiences in relationship to the natural world. She loves walking, reading historical novels, and cultivating her community of friends and family.   

 The Truth About Long-Distance Caregiving 

Harriet Platts has been providing long-distance, caregiving support tracking for both her parents for more than 15 years, with episodic, increased involvement, and over-the-phone and in-person visits driven by need, medical crises, and transition. Her mother died in 2017, and she lost her only brother and sibling in 2020. She currently lives in Seattle and her father is aging in place (at this time) on the Chowan River, outside of Edenton, North Carolina. They are 2,500 miles apart. Platts remains connected with her father by phone/texting most days, and in-person visits two to three times a year. “From a distance, I had a practice of writing-mailing cards with hymn lyrics written in them of some of their favorites. Dad and Mom sang at the dinner table, as was a family custom. I also often sang to them on the phone,” she says. Platts can continue long-distance care because of the robust circle of extended family, neighbors, and local support near her father. Other long-distance caregivers are not so lucky. 

According to the “Caregiving in the U.S. 2020” study by AARP and the National Alliance of Caregiving, 11 percent of family caregivers live an hour or more away from their aging or ailing family member, with many living hours away. Long-distance caregivers spend nearly twice as much on care as those with family members nearby because of the need to hire help. If you are a long-distance caregiver, check out aarp.org/caregiving for a wealth of resources. 

FOR WASHINGTON

Your Vote Needed to Keep Long-term Care Benefit in Washington  

Working Washingtonians, and especially those caring for loved ones who are sick or aging, should be on the lookout for an important vote this November. If passed, Initiative 2124 will increase costs for working people, including nurses, teachers, and firefighters, by eliminating Washington’s long-term care insurance program.   

I-2124 will send more people into debt when faced with expensive long-term care bills and private insurance premiums they can’t afford. And more than 820,000 family caregivers in our state will lose important supports and benefits that help them take care of their families and loved ones. 

 Family caregivers are the backbone of our long-term care system, helping with everything from buying groceries and managing medications to bathing and dressing. Caring for a family member or close friend is one of the most important roles we are likely to play in our lifetime. However, the emotional, physical and financial tolls of caregiving can be profound. 

 Washington’s long-term care insurance program provides some important relief. For instance, funds can be used to help pay family caregivers to offset lost income while they are providing care. Funds can also be used to hire homecare aides and pay for home safety modifications, meal delivery, or assistive technology. If passed, I-2124 will strip away these critical supports. 

 AARP, the Washington State Nurses Association, labor unions representing home health care workers, doctors, grocery workers, teachers, and organizations like the MS Society representing Washingtonians living with pre-existing conditions are all urging a “no” vote on I-2124. 

The Virtual Family Caregiver

The Dawn of a New “Age”

Life’s Completion

The post A Tractor Tale of a ‘Last’ Ride: ‘What can I do to help?’  appeared first on 3rd Act Magazine.

I was 50 when I accompanied my younger sister’s trek across the country to move into our childhood home in Southwest Washington with our aging, widowed mother. My sister was leaving a big job and planned to turn our father’s spacious workshop into an art studio and see if she could make a living being a creative. Our independent and feisty mother didn’t need much help then—or thought she didn’t. Still, I knew living with her would be challenging, and when I flew home to North Carolina, I thanked the universe I wasn’t the one moving into my old bedroom in the basement. I could never do that.

Flash forward 10 years. It’s the day after my 60th birthday as I load my diabetic cat into my aging Honda CRV to drive across country. Yes, I’m moving to the bedroom where I had studied the periodic table and diagrammed sentences in high school. My mother, at 96, increasingly needs more help (though still in denial), and I am ready to return to the Pacific Northwest. Five years earlier my sister had moved from our mother’s house to the back of the functional-art boutique she opened in town.

A Reluctant Caregiver

I offer to live for one year with my mother. I can do anything for one year. And I will be back in the mountains and fir trees and the rain of my true home. The plan is that my sister and I will get our mother moved to some kind of assisted living and clean out the house my parents have stashed stuff in for more than 50 years. I will find a job, a home of my own, and resume my life. It will be a middle-aged gap year.

But we didn’t formalize a plan. My mother didn’t move. I didn’t get on with my life. And her care became my life as I tried to hold on to my sanity. Over the next four and a half years, my mother and I would fall back into the pattern of relationship we had when I was a teenager—each of us determined to win the war of independence. Me losing every battle. She hung on to life, and I increasingly felt I was losing a grip on mine.

As she became more cognitively and physically impaired, including near blindness, I became more isolated and more unemployable—or feared that I would. I insisted she have part-time paid companions so I could spend time with grandchildren and do some hiking and camping, which was the reason I wanted to come home. She kept firing them—declaring that she didn’t need them—while I vetted the next candidate.

I cajoled her primary care physician into referring her to hospice care. Though being nearly a century old is not considered a terminal diagnosis, my 80-pound mother got in on weight loss and congestive heart failure. The weekly visit by a nurse and the twice-weekly bath aide improved both our lives. Over the next years, she was discharged and readmitted several times, as she thrived under good care by someone with letters after their name. “It’s the best insurance around,” the nurse told me, “but Medicare doesn’t understand that.”

A Fall

Two months after the 100th birthday party bash my sisters and I threw for her, she fell in the hallway and broke her wrist and shoulder on her dominant arm. She could no longer push the walker she had recently started using, toilet herself, get up and down from a chair or bed, or, for a while, feed herself. Caregiving was 24-7, except for a few hours a week when a caregiver came to the house.

During my years with her, I was steadfast in my resolve to take care of myself—weekly coffeeshop dates with a friend, yoga, hiking, and time with my grandsons a couple of hours away. Over my mother’s objections (“she’s too busy”), I insisted my older sister come for week-long visits every several months from her home across the country so I could visit my older grandsons in North Carolina, go to writing retreats, and commune with nature from my tent. Self-care was my superpower.

After my mother’s fall, though, and three years longer than I had meant to stay, I was done. With some family pushback and several false starts, we moved my mother to assisted living—the best we could find on short notice—where she lived under the constant oversight of my sister and me for the last 18 months of her long life.

The Reality

The National Alliance for Caregiving and AARP estimate that nearly 42 million Americans provide unpaid care to an adult over the age of 50—most of them family—for an average of more than four years. Seventy-five percent are women. As of 2021, the estimated value of care provided by family caregivers: $600 billion. And they lose an estimated $522 billion in income a year because they are caregiving. Forty-four percent of them felt they had no choice. What these numbers don’t show is how many of these caregivers are burned out, in ill health themselves (often due to the stress of caring for another), or suffering from depression.

Here’s the kicker: The number increased by 9.5 million between 2015 and 2020, the increase led by those caring for a parent. Almost 10,000 boomers—those born between 1946 and 1964—turn 65 every day. By 2030, all boomers still living will be 65 or older. As the caregivers become the care recipients, we are living longer, but not necessarily healthier. The big question: Who will care for us?

The National Council on Aging reports that 80 percent of older Americans can’t afford long-term care and even those with less modest assets won’t be able to afford more than two years in a nursing home or four in assisted living. Yet one in seven will need care for five years or more. Since Medicare does not cover long-term care costs, older adults and their families must shoulder the expense or spend down their assets into poverty to qualify for social safety net programs such as Medicaid.

The U.S. is one of just three developed countries without a national family leave program (Caring Across Generations). Only 11 states and the District of Columbia have a state policy (AARP). The National Library of Medicine cites a study that concludes social and public policy changes must be met soon to meet the long-term care needs of Boomers. “Meeting the financial and social service burdens of growing numbers of elders will not be a daunting task if necessary changes are made now rather than when Baby Boomers actually need long-term care.”

I unexpectedly spent four years neither on a retirement plan nor paying into social security and then was beyond an age to find meaningful employment. Other children care for a parent (or two) much longer than I did, go longer without a paycheck, and have fewer options than my family did.

My mother was lucky. She had family willing to accompany her on her long walk “home,” assets to pay for care, and she was relatively healthy. But the family had never talked about her future after her husband of 51 years died 23 years before she did. What did we think was going to happen? We don’t talk about our own aging because it’s terrifying. Our children, if we have them, will be left to figure it out.

Gretchen Staebler is the author of the award-winning memoir, Mother Lode: Confessions of a Reluctant Caregiver, a candid story of the six years she spent walking her mother home. She is a grandmother, a caregiver ally, and is working on a second memoir. She lives with her cat in her childhood home in Centralia, Wash.

This story was made possible by funding support from AARP Washington and BECU. For more information, tips and resources for family caregivers in Washington state, go to: www.aarp.org/caregiverswa

Important! Your Vote Needed to Keep Long-term Care Benefit in Washington State

An initiative that threatens to eliminate the WA Cares program appears to be headed to the November ballot. Initiative 2124 would allow people to opt out of the public long-term care insurance program and would destabilize the funding it needs to succeed.

Seventy percent of adults 65 and older will require some assistance to live independently as they age. Still, most of our growing older population lacks the financial resources to pay for the care they need. While private long-term care insurance is an option, rising premiums make it too expensive for most, and many applicants are denied due to pre-existing conditions.

The WA Cares Fund provides flexible and meaningful benefits, allowing families to choose the care setting and services that best meet their needs, including help with personal care, medical assistance, home modifications, and more. The benefit can also pay family caregivers to help offset lost income while they are providing care.

If I-2124 passes, Washingtonians will lose access to this affordable guaranteed benefit to help pay for the long-term care services and support they need.

Read more on Caregiving:

The Caregiver’s Journey—A Four-Part Series

The Caregiver’s Journey is a 4-part series. Here are the second, third, and fourth articles in the series.

Susan Partnow — A Life Interrupted

Evolution of a Caregiver

The post Confessions of a Reluctant Caregiver appeared first on 3rd Act Magazine.

“Be a rainbow in someone else’s cloud.” —Maya Angelou

I once attended a workshop where participants were asked how they wanted to be remembered at their death. Most wanted to be remembered for having made a difference. They want their lives to have mattered.

The idea of “paying it forward” was popularized by the 1999 book, Paying It Forward and the 2000 movie of the same name. Based on the premise that when someone does something for you, rather than paying it back directly, you pass it on to another person who in turn passes on the kindness. Many people practice this principle believing that such acts build exponentially, thus enriching the community around them. They may be motivated by a feeling of gratitude for what they have received or by the desire to follow in the footsteps of someone they admire.

While few of us will pen a book that will transform the way we view society, serve our country in a way that will be meaningful to future generations, or invent a vaccine that will eradicate disease, there are many opportunities to make a difference in the lives of others. Some years ago I received a phone call from a casual acquaintance the day before my surgery wishing me well, and assuring me that she would be thinking of me. Such a simple act, but it touched me deeply.

Has your life been touched by someone either known or unknown?  How did you feel? Does it inspire you to “pay it forward?”

Consider some of the ways you can pay it forward and make a difference:

• Be informed. Trust reliable sources to learn what is happening in your community, schools, or other organizations to determine how best to contribute.

• Stay involved. Support local programs that assist individuals facing specific needs such as food or housing insecurity. Make your voice heard by voting.

• There are endless opportunities to volunteer with organizations or individuals. Tutor through the schools, teach English as a second language, sit with the family of someone undergoing a medical procedure, drive someone to a medical appointment or treatment, call to check on someone’s health, or simply sit with someone who needs to tell their story without judging. Use your skills and abilities to create something new. A retired nurse I know created a care team in her church. A community theater enthusiast formed a drama group as a fundraiser for an organization they support.

• Become part of someone’s personal “choir.” When a friend of mine was facing an important job interview, he asked a group of friends to become his choir. He envisioned them sitting on his shoulder sending him positive thoughts at the time of the appointment.

These are only a few examples. Our challenge is to think of others.

Although I may not always know that I have made a difference, I hope never to stop trying to do so.

Linda Henry writes regularly on topics related to aging, health care, and communication and is the co-author of several books, including Transformational Eldercare from the Inside Out: Strengths-Based Strategies for Caring. She conducts workshops nationally on aging and creating caring work environments. Her volunteer emphasis is age-friendly communities.

More by Linda Henry:

Finding Passionate Purpose

Aging with Intention—Life is What You Create

Bittersweet Moments—Past, Present, Future

Bittersweet Moments

The post Aging with Intention—Paying it Forward appeared first on 3rd Act Magazine.

By SALLY JEAN FOX

Life is what happens when you’re busy making other plans. —John Lennon

Few of us deliberately plan to become caregivers. We have lives, commitments, and passions that are important to us, all of which could be dramatically disrupted by a loved one’s illness, physical or mental challenges, or accident. While it might be difficult to think about how we would cope and provide care if the worst should happen, the time to consider it is now.

Susan Partnow’s life abruptly changed when she was 71 and her husband, Jim, received a diagnosis of laryngoesophageal cancer that required life-altering surgery. Then, two years later, tragedy again struck her family, and she added a new role to her plate—caregiver to a caregiver, this time supporting her daughter.

At the time of Jim’s diagnosis, Susan was enjoying new freedom after leaving her job as a consultant in a health care system. For 18 months, she had been planning a service project about which she was passionate, leading a citizen diplomacy mission to Kashmir, India. Unfortunately, the trip was scheduled to begin just two weeks after her husband Jim’s surgery.

Technically, she and her husband were separated and lived independently of each other on different floors of their house. Yet Susan knew she was the one person in his life who could be his primary caregiver and that this was how she was being called to serve.

But what about India? She could cancel the personal portion of the trip. But 24 people were depending on her to lead the mission. She knew that the surgery her husband was facing was grim, requiring the removal of his larynx (voice box) and the reconstruction of his esophagus. Even after the surgery, he would require months of rehabilitative care.

Susan said “yes” to caregiving and set to work to figure out how to lead the Kashmir mission before stepping into her new role. She was determined to make it work. “My whole being was clear—I needed to go.”

Unlike some of us suddenly confronted by complex events or tragedy, Susan had several assets going for her. She knew how to navigate the health care system and research appropriate care options for Jim, including rehabilitation hospitals. She had a strong network of friends she could ask for support. And she had developed many beneficial personal practices as a teacher of “Compassionate Listening.”

A plan for her absence emerged. Friends stepped up to help. One volunteered to “be Susan” in her absence. Jim moved into a rehab hospital the day before Susan’s flight to India. But the move didn’t go smoothly. The weekend staff wasn’t prepared for the level of care needed to support a man who couldn’t speak and had a tracheostomy. And Jim was scared. Hours before her flight to India, Susan held an emergency meeting with the rehab hospital director to try to improve the situation.

But when Susan woke up her first morning in India, she saw a text from Jim pleading, “Get me out of here.” Jim wanted her nearby. But she was thousands of miles away and had to rely on the friend she had left in charge, who was increasingly overwhelmed by the situation. Things did not go perfectly while she was away, but two and a half weeks after departing Susan was back in Seattle in her new role as primary caregiver. The long haul of rehab began. Jim could neither speak nor swallow and couldn’t eat on his own. After months of healing and speech therapy, Jim finally mastered his smartphone so he could text to communicate. Then, he learned to speak using an electrolarynx. (Sadly, he will always need a tube to eat.)

When he was finally able to return home, Jim required extensive care. Susan had to learn the mechanics of tube feeding with many messy mishaps. “I’m not a nurse, and I’m not good at feeding and wound care.” What she was good at, though, was finding help. Home health provided some. Other support came from friends who visited Jim, walked the dog, and did tasks, thus giving Susan breaks.

Susan’s “Compassionate Listening” training helped her face a heart-wrenching situation with more equanimity than many of us would have. She worked to have compassion for herself and Jim, and to practice returning to her heart, again and again, when challenges set her spinning. She could also ask the difficult questions some of us would avoid, like when she said to Jim, “Do you want to go on?” That question turned out to be a shocking wake-up call that helped him move forward.

Tragedy strikes again

Susan Partnow’s caregiving responsibilities would have been more than enough for most of us, but two years after Jim’s surgery, another tragedy struck the family. Her daughter, Jessica, and son-in-law, Kurtiss, were one year into a happy marriage when he, at 38, had a catastrophic stroke.  Kurtiss survived the stroke to face a life with disabilities affecting his mind, coordination, and movement. Impacted by severe ataxia, he can’t walk or coordinate his movements, nor can he sing or play piano, as he once had done so beautifully. His career as a software engineer is gone. Jessica must bring in income and continue her career in nonprofit management and journalism while trying to support her husband’s many needs.

It’s hard enough to be a caregiver. But watching those we love bear the weight of caregiving is also painful. Susan saw her daughter’s load and stepped in to help. She became a caregiver to a caregiver, spending time with Kurtiss so that Jessica could have breaks, earn income, and have some life to herself. Susan visits her daughter’s place three afternoons a week to be with Kurtiss and take him to appointments. “We’ve become great friends,” she says.

Susan is a lucky one. She has a strong community, a sense of purpose as a caregiver and activist, and well-developed inner practices. The need for care has stressed but not bankrupted her family. Still, there are painful times when she asks, “Why were we so unlucky?” or “It’s unfair.” At those times, she tries to redirect her mind toward gratitude and appreciation, while reminding herself that dwelling in suffering and misfortune, however understandable, won’t help her situation.

While Susan’s story is unique, it contains lessons for all of us who never know when we may be called to provide care:

1. Build your community now. Talk with friends about what you would do in an emergency and how you can support each other.

2. Develop positive mental health practices. Susan uses “Compassionate Listening.” You may use your faith or a meditative practice. Develop your resilience before tragedy strikes.

3. Research caregiving resources in your community. What do people do when they need help? Are there care groups? Home health options? What rehab facilities are good? You may not need this information yet, but your preparation might also help another.

4. Be willing to accept support. When we are exhausted, overloaded, or depressed, it can be hard to ask for help. But caregivers deserve care. We can learn a lot about accepting help by discovering what supports others in our communities and then offering that help.

5. Don’t bury your grief and deep feelings. Therapy, grief counseling, caregiving support groups, books, and conversations can help.

6. Practice self-care. Go outdoors, walk, be in nature, and notice what brings you joy. Make a list of delights—or things you can do when life takes a difficult turn. You may need it.

The challenges Susan and her family have faced, however difficult, have come with gifts. She and her husband have become closer, and she loves being connected and interwoven in the lives of Jessica and Kurtiss. Her life isn’t the one she expected, but Susan is grateful for what she has. Part of her path has always been service, and she has plenty of ways to serve. “Service is love and that’s what life is about. In that way, I have a purpose. I am needed. I am serving. I am both caring and feeling cared for,” she shares.

That’s not to say it is easy. Susan tries to have compassion for herself and others. “It’s the heartbreak I don’t like. That doesn’t go away,” she says. “There’s a deep river of sorrow under it all. And that’s how it is.”

Sally Jean Fox, PhD is the author of Meeting the Muse after Midlife: A Journey to Meaning, Creativity and Joy, a writer, artist, and creativity and transitions coach.  She lives on beautiful Vashon Island, Wash.

This story was made possible by funding support from AARP Washington and BECU. For more information, tips and resources for family caregivers in Washington state, go to: www.aarp.org/caregiverswa

Important! Your Vote Needed to Keep Long-term Care Benefit in Washington State

An initiative that threatens to eliminate the WA Cares program appears to be headed to the November ballot. Initiative 2124 would allow people to opt out of the public long-term care insurance program and would destabilize the funding it needs to succeed.

Seventy percent of adults 65 and older will require some assistance to live independently as they age. Still, most of our growing older population lacks the financial resources to pay for the care they need. While private long-term care insurance is an option, rising premiums make it too expensive for most, and many applicants are denied due to pre-existing conditions.

The WA Cares Fund provides flexible and meaningful benefits, allowing families to choose the care setting and services that best meet their needs, including help with personal care, medical assistance, home modifications, and more. The benefit can also pay family caregivers to help offset lost income while they are providing care.

If I-2124 passes, Washingtonians will lose access to this affordable guaranteed benefit to help pay for the long-term care services and support they need.

Are You a Caregiver? Check out these Resources:

• Sound Generations in Seattle offers caregiver support including “free, confidential and personalized servicesto unpaid caregivers residing in King County.” https://soundgenerations.org/

• The VA in Puget Sound offers support for caregivers supporting veterans. https://www.va.gov/puget-sound-health-care/health-services/caregiver-support/

• Washington State DHS Aging and Long-Term Support Administration offers caregiver resources: https://www.dshs.wa.gov/altsa/home-and-community-services/caregiver-resources

• Eastside Friends of Seniors provides volunteer-based services to older adults facing the challenges of aging. https://www.eastsidefriendsofseniors.org/

• King County Senior Hubs provides support, outreach, connection, and opportunities for social engagement to elders throughout King County. https://kingcounty.gov/en/legacy/depts/community-human-services/adult-services/older-adults-caregivers/senior-hubs

• King County Caregiver Support, a division of Aging & Disability Services for Seattle & King County, provides tailored support services addressing the unique needs of unpaid caregivers. https://www.agingkingcounty.org/help-information/caregiver-support/

Don’t Miss Our 4-part Series on Caregiving!

The Caregiver’s Journey—A Four-Part Series

The Caregiver’s Journey Part 2: Looking After Yourself

The Caregiver’s Journey Part 3: Getting Caregiving Help

The Caregiver’s Journey Part 4: When Caregiving Ends

Caregiver’s Journey

The post Susan Partnow — A Life Interrupted appeared first on 3rd Act Magazine.

211 connects individuals with expert, caring help.  Through 211, family caregivers can:

• Get immediate support and talk with a local resource specialist.
• Address basic necessities such as housing, food and utilities for themselves and their loved ones.

• Connect to local services and organizations who can help with transportation needs of loved ones, provide healthcare and information and resources including prescription payment assistance, and access to food delivery services, home safety programs, veterans’ benefits, and more.
• Get referrals to specialized help for themselves and their loved ones.

“As champions for caregivers, we know at AARP that caregiving can be a complex and challenging role, and many may not know where to turn to for help or may be overwhelmed by the sheer number of resources available,” said AARP State Director Marguerite Ro. “211 simplifies the process by helping caregivers connect to programs and services, access financial assistance and emotional support in their communities, and more.”

“Across America, 211 is seeing continued demand for local services to help family caregivers and their loved ones,” said Joshua Pedersen, Senior Director of 211 at United Way Worldwide. “Often, someone might call, text or chat 211 to find out what support is available for their loved one, and the call specialist is trained to hear when they need more support for themselves, too. By joining forces with AARP, this will help fill a critical resource gap. “

211 trained call specialists respond to 50,000 requests for help every day all over the U.S. and tap into 1.5 million locally curated resources.  Washingtonians can get the local information they need by simply dialing 211 today for free help. Dial 211 or visit www.aarp.org/211care.

Resources for more caregiving help:

Caregiver Action Network—Life After Loss: https://www.caregiveraction.org/feelings-you-may-have-life-after-loss; Finding the Right Support Group: https://www.caregiveraction.org/finding-right-support-group

The Center for Prolonged Grief, Columbia University: https://prolongedgrief.columbia.edu/for-the-public/complicated-grief-public/overview/

Family Caregiver Alliance—Grief and Loss: https://www.caregiver.org/caregiver-resources/caring-for-yourself/grief-and-loss/

Read our 4-part Caregiving Series:

Part 1: Preparing for Caring

Part 2: Looking After Yourself

Part 3: Getting Extra Help

Part 4: When Caregiving Ends

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What happens to older adults who do not have close family when they develop dementia? The truth is, we hardly know.

Population aging together with changing patterns of marriage and childrearing mean that growing numbers of people in North America reach advanced ages without a living spouse or children. This matters because the incidence of dementia increases with age, and considerable support and care are needed to live well as the condition progresses. The vast majority of this care is provided by spouses and children.

There is reason to worry that older adults who lack family in these two relationship categories may be vulnerable if they develop dementia. Until now, however, very little research has examined the topic.

Older adults with dementia without close family

I am a medical anthropologist and I research social and cultural dimensions of illness and health care. (I am also the daughter of a mother who lived with dementia for a very long time).

Our team has worked with information collected as part of a long-running medical research study of dementia called the Adult Changes in Thought (ACT) study. Since the early 1990s, this study has been following participants recruited from the membership of an integrated health-delivery organization in Seattle to identify those who develop dementia.

Our team has been examining the research data and administrative documents generated by the ACT study, with an eye to what they can tell us about the circumstances and needs of older adults who were kinless when they developed dementia.

Qualitative analysis of ACT administrative documents, some of which contained clinical chart notes from participants’ medical records, proved to be an especially rich and informative source of data.

Surprising findings

We recently published what we believe is the first article on kinless older adults with dementia, and some of the findings might surprise you:

• This circumstance is not rare. In our sample of community-dwelling older adults, we found that 8.4 percent were kinless at the time they developed dementia. (This is probably a conservative estimate because more would likely become kinless after the onset of dementia, upon the death of a spouse and/or child).

• This is a predicament to which anyone may be susceptible. The life trajectories that led people in our sample to be kinless at the time they developed dementia were quite varied. Some had never married or had children, but others had outlived both spouses and children.

• The average age of the kinless older adults in our sample at the time they developed dementia was 87. Half were living alone at that point, and one-third were living with unrelated persons such as hired caregivers. Most were women who became kinless late in life and unexpectedly.

• A person’s role as caregiver (at the time they developed dementia, or prior to that) could have important consequences for their own ability to access care. For example, some in our sample had previously moved to a residential setting to meet the needs of a spouse, which could mean that they were well situated to access care later. On the other hand, at least one of the 64 kinless older adults with dementia in our sample was serving as caregiver for a roommate (who also had dementia), which triggered an intervention when it led to a situation that was dangerous for both parties.

• Some of the kinless older adults in our sample seemed to have little support, but others received considerable support from relatives such as nieces, nephews, sisters, grandchildren, and others.

• Some received support from neighbors and friends that could in some cases involve quite extensive hands-on care. In many instances, however, neighbors and other community members appeared to have gotten involved only at moments of crisis, as a form of rescue.

This research affords a rare window into the circumstances and needs of a potentially very vulnerable group that up to now has remained largely invisible. Our findings have implications for clinicians and health systems, but also for society more broadly.

“Who cares?” is, on one level, an informational question about caregiving networks—one that our team, through this research, has begun to answer. On another level, however, “who cares?” is a provocation. The predicament of kinless older adults with dementia should provoke all of us to work to better support people facing a form of precarity that anyone may be susceptible to in late life.

Janelle S. Taylor is a professor in the Department of Anthropology at the University of Toronto. Her research focuses on social and cultural dimensions of illness and health, and over the years has addressed a range of topics, including reproductive technology and medical education as well as dementia and caregiving.

Credit: Previously Published in The Conversation

Tips for Solo Agers

 For people who are aging solo, this research offers no easy answers, but it does point toward some questions worth considering:

• Would your current living situation make it easy to access help and support, if you should need it in the future? If not, consider looking into available options sooner rather than later.

• Have you ever spoken with your health care providers about your living situation, who is most important in your life, and/or your concerns about your future? Having such information may help them better support and care for you.

• Do you have an active network of social relationships? Neighbors, friends, fellow volunteers, fellow members of clubs or other organizations can all be valuable sources of support.

• Are publicly supported dementia programs available in your area? If not, consider getting involved in efforts to advocate for them.

• Have you thought about what would be your wishes (for medical care or for your finances) if in the future you were unable to articulate them? Have you talked about these matters with people close to you and documented them in ways that can have legal force?

Related stories:

Time to Get Real About Aging in Place—the biggest challenge of aging in place is the profound shortage of people—both family members and paid—to care for us.

Moving Closer to Your Family—Longer term, it will benefit you because at a time you may need help, your family will live closer and know you more deeply.

The post Older Adults with Dementia without Close Family appeared first on 3rd Act Magazine.