Linsey Knerl for The SCAN Foundation| Care of USA Today
While much of the COVID-19-related news cycle has focused on how to keep our older adult population safe, a recent poll by The SCAN Foundation suggests that we have a long way to go in preparing for the individual situations and potential challenges that older loved ones and all of us will face as we grow older.
Now is always a good time to take stock of one’s own aging preferences and goals, no matter your age, and the holidays are an annual opportunity to specifically check in with older loved ones and assess their daily living needs. How can these conversations lead to meaningful long-term support, especially when in-person visits and services are limited? Two women share their personal stories of planning and guidance during the pandemic and offer tips for those who want to use the upcoming celebrations – though they may be more intimate and even virtual – as a way to break through care barriers.
Ask about daily routines
Joanne Cleaver is an author and career consultant who engineered a move to an independent living community for her mother — all during the pandemic. Cleaver’s mother had experienced strokes and falls prior to the transition, but like many, she initially didn't want to leave her lakefront Vermont home to move 900 miles to be closer to those who could care for her. After taking an honest look at the true independence Cleaver’s mother could manage, it became apparent that a move was the only answer. Cleaver began researching options in the fall of 2019, just shortly after her mother had relocated to be closer to her own grandkids.
While she was able to take periodic flights to Vermont to check on her mother and help as needed, the arrangement wasn’t sustainable. Acknowledging aging for Cleaver often meant asking questions about how her mother was managing day-to-day tasks, which often signaled she wasn’t as independent as she first appeared.
"It was difficult to separate my mom's true capabilities from the circumstance," Cleaver said. “The reason she was OK is due to habit and routine.” Cleaver explains that her mother drove the same routes, went to the same outings and bought the same brands. The routine of her life was obscuring deeper issues of independence, which become apparent through observation and discussion. It wasn’t until she closely observed her mother in person that she noticed she was only doing well because she had a very specific and limited set of tasks that she did automatically. Going outside of those well-engrained habits, such as driving to a new place or shopping from a new store, was impossible without help.
After Cleaver and her mother agreed on a different living arrangement, there were many pieces to manage, including a home sale and touring care facilities during strict COVID-19 health measures. Cleaver even had her mother fulfill the mandatory 14-day quarantine upon arriving to Charlotte, North Carolina, at her house before moving on to the independent living community in August. While there were many unique considerations for their family due to the pandemic, Cleaver’s advice can be used at any time — even after a return to normal. She recommends families get prepared for a possible move to a long-term or independent care community at least six months in advance by gathering financial paperwork and tax documentation.
“You need to start collecting it earlier than you think you do,” she said. “You cannot underestimate the level of details they need.”
She also shares that every facility has a different application, and all financial institutions have a different format for their statements and reports. “Get the application in advance,” she said, for best results.
Speak a loved one’s language
Linda Tietje is a Dallas, Texas, business owner who specializes in helping older adults share their life stories. For her, having a talk about the important things was just part of her mission to make sure older loved ones have a voice. When it came to having talks with her own father, however, it was admittedly more challenging during COVID-19.
The German native has lived in the U.S. for 15 years, with her divorced parents living overseas and in the higher-risk group for COVID-19. Travel to visit them hasn’t been possible, so Tietje has made do with calls and emails about what aging will look like for her mom and dad. Despite not seeing them in person since August 2019, the family has been good about answering the tough questions well in advance of any changes in health or independence.
“My parents have always been proactive about having a plan should anything happen to them due to their own experiences with their own parents. Neither one wants to be a burden to my sister and me, so both reached out to discuss what should happen if or when the time comes,” she said. “Between calls and emails, my parents really initiated and drove these conversations even before COVID. However, COVID made the topic again more pressing.”
Linda’s experience, while inspiring, isn’t always the case in families, however. It’s often the younger family members who first broach these sensitive topics, including care services and end-of-life choices. In her situation, Linda was fortunate to have her parents choose to discuss these matters while they still have much control over their circumstances. The result is a blueprint for the way caregivers and children can start to have talks, even if they are the first to break the ice.
Tietje also shares her father’s best tip for communication:
“He told me years ago that it is much easier to have these conversations when everyone is healthy and it seems very abstract rather than to wait until it becomes more realistic in our mind.”
She admits that these conversations can be uncomfortable, but she thinks they are also reassuring. “We all know what is important to the other while still feeling that the worst-case scenario is a long time out.”
She also wants to express that communication styles are important. Her father loves to write, and so she decided that emails and letters were best for sharing essential information on aging care with him. Her mother, however, is a fan of phone calls. “Find the style of communication that works, and throw any 'rules' out the window,” she said.
Lean on others
Dolly Banks of Fairburn, Georgia, is a 64-year-old retiree and the primary caregiver for her 68-year-old husband Ben, who lives with dementia. While she has been proactive in dealing with her husband’s health needs the past few years, the pandemic brought new challenges when the couple was diagnosed with COVID-19 in July of this year. While Dolly was able to return home with a treatment plan, Ben remained in the hospital for a week. Dolly experienced first-hand that it wasn’t always possible to handle all her husband’s needs on her own. She learned to give up care for her husband to those who could rise to the challenge during a pandemic.
“The hardest part for me was to leave him at the hospital by himself,” she says. “I made sure that I had the phone beside me at all times, and the doctors and nurses were very good about calling to ask questions that he could not answer and to keep me up-to-date on his condition.”
When Ben returned, Dolly continued her caregiving by administering meds and ensuring he took meals, but he returned to the hospital shortly after with complications. He has since been released, but his ongoing dementia care needs remain.
Dolly shared that staying positive has helped her and Ben get through these past few months. She offers this word of wisdom for anyone who is dealing with a COVID diagnosis and still needs to care for a loved one: “I encourage you to fight to heal and survive,” she says. “You can make it through no matter how severe your case is. Don’t give up. Speak healing over yourself.”
She also learned to reach out and ask for help, when needed – a good tip for older adults and families to remember when sharing their preferences for aging and building out a care plan for the future.
Recently, Dolly took a much-needed pause from caregiving by staying at her daughter’s home while Ben was with their son. “He was in good hands. It gave me a break,” she shares. The couple has since sold their house and moved in with family, which ensures that there is always someone at home to continue care for Ben.
As they get older, she realized how important it is to lean on family for support. Caregiving is a full-time job, so it’s always nice to have a few extra helpers around. As families discuss these topics, identify who can help with various tasks. One family member might do grocery shopping for an aging loved one while others handle transportation and supporting activities of daily living in the home.
Aging awareness: More important than ever
Even though they are critical for aging with dignity and independence, it’s easy to put off these types of conversations. Talking with loved ones about ongoing care needs can bring up complicated feelings, highlight difficult family dynamics and force the reality that aging — while natural and beautiful — can be tough. With the holidays looking a lot different this holiday season and a pandemic that is following us into 2021, now is a perfect time have vital discussions around one’s aging goals and preferences, no matter your age and circumstance.
For more resources on aging and caregiving, visit TheSCANFoundation.org. The SCAN Foundation is an independent public charity devoted to transforming care for older adults.
Marc has 36 years in financial services and 6 years in teaching.
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