It was Sunday when Melanie received the notice. The 24-hour in-home health care provider for her dad, living with Lewy Body dementia, announced it was canceling his service due to a staffing shortage. In 48 hours, he would no longer be receiving the care he relied on. Melanie didn’t know who to call for help.
Melanie is one of thousands of seniors in crisis our nonprofit, START Senior Solutions, has helped over the last decade. What did they have in common? All could have benefited from a comprehensive plan for aging that anticipated the financial, legal, medical and basic care issues that can engulf seniors and families when crisis strikes.
Age with confidence
While we can’t predict the future, planning can help you manage the challenges of aging:
- Align your family around your wishes. Documenting what you want and don‘t want gives you a voice if a time comes when you can’t speak for yourself.
- Give yourself options. Planning allows you to make choices before you’re in crisis.
- Lower the risk of crisis. Being prepared can help you better manage the unexpected.
“There is no better time to start planning than right now while you still have capacity,” says Jim Dostal, START Senior Solutions elder advocate and former State of Minnesota long-term care ombudsman. “You know what you want, what you look forward to and who is important in your life.”
Act with urgency
As we age, managing our health, medical costs and basic needs can become more difficult and unpredictable. A single crisis can lead to life-changing decisions that many older adults are not prepared for. By 2030, adults aged 65 and older will outnumber children, according to the Census Bureau. Half of those over 65 will require skilled nursing at some point in their lives. Who will take care of them?
Staffing is the No. 1 concern among assisted living and nursing home directors. The need for skilled care is surging. For seniors who want to age at home, it’s difficult to find and keep help.
All it takes is a single event to change our lives. It could be a sudden loss of care support, a serious fall or a diagnosis of dementia. A crisis is like the tip of an iceberg. Underneath lie complex financial, legal, medical and care questions that must be answered.
If you are incapacitated by a serious injury or illness, how will you pay for medical care? Who are your legal decision makers? Who has financial power of attorney? Who has been named medical power of attorney? Once you have received immediate medical care, the question remains — where will you receive short- or long-term care if not at home? Who will care for you and how will you pay for that care?
Anticipating these questions before a crisis disrupts your life can reduce the chaos that can overwhelm families. “If you find yourself saying, ‘Let’s see what happens.’ That’s not a plan or strategy,” says Lynn Bergren, outreach nurse for START Senior Solutions. “Once you make the decision to delay planning, you’re setting yourself up for a cascade of legal and financial issues that you could never imagine.”
Make your wishes known. What is your vision for aging? What do you want? And just as important, what don’t you want? Write a letter of intent that spells it out clearly.
Sharing your wishes while you can speak for yourself is important in many ways. Our clients who didn‘t make or share their plans are the ones who are the most stressed and anxious when crisis hits. Give your loved ones and the people who are likely to care for you permission to do what’s needed without the guilt that weighs on a lot of caregivers.
Here are excerpts from the letter of intent I wrote for my children based on my wishes:
I recognize that many conditions, including stroke, dementia and debilitating accidents, may require that long-term care plans be put in place for me. While it’s my wish to stay at home and live a full and vibrant life, I know that that may not be possible due to practical, logistical or financial issues.
I want my caregivers, especially my family members, to know that I will not ask you to personally care for me if it means that you would suffer physically and emotionally or that your own needs would go unmet because of the high demands of my care.
Put the pieces together. Address financial, legal, medical and basic care needs in one document, and share it with your family and people you are counting on for support. It’s important to review and update your plan as things change in your life.
“When I talk to a client about planning, I like to start at the end of their life and work backwards, so I can get an idea of where they see themselves,” says Josh Casper, elder attorney, Casper Law. “We think through best- and worst-case scenarios. It’s important that your plan and legal documents address both, because reality will fall somewhere in between the two.
As you grow older your options and choices become limited. If you wait too long and don’t execute healthcare directives, powers of attorney and other documents you might need, your family may end up in court, Casper explains.
“Your family won’t know what you want, and they may not understand the choices you would have wanted to be made for you,” he says. “Legal costs will increase, and there could be fights between your children over what decisions are made.”
Identify a support team. You may be familiar with the saying “it takes a village.” The same concept applies to aging. It’s nearly impossible to tackle the challenges of aging without help.
“There are times when our capacity to think for ourselves is diminished,” Dostal says. “You could be in a hospital after surgery and not able to communicate. You want to have your team in place, so they can follow through with your wishes. Talk to the people on your team. Help them understand your plan and your values: who you are and what you look forward to as you age.”
Put together a list of people who will help execute your plan and advocate for you if needed. Who are the family members and friends you can count on for emotional support? Who are the financial, legal and medical professionals you can rely on for expertise? In difficult situations, who can provide guidance? Every hospital has a medical ethicist on staff who will answer questions and provide counsel. Church clergy and parish nurses can provide support.
Make sure to share the same information with all family members, so each person knows their role and responsibilities.
Begin the conversation
Planning is a big task with many parts. The most important thing is to start. I recommend two thought-provoking books that can help you think though your future and what’s important to you. Being Mortal by Atul Gawande and When All Is Said and Done by Pat Miles can guide your conversation and provide action steps that can help inform your own plan.
Take the first step toward your future today. Make sure your voice is heard and reduce the level of inevitable frustration and confusion that happens when a crisis strikes. If you have questions or need help, please contact me at [email protected].
Tracy Keibler is executive director of START Senior Solutions, a Minnesota nonprofit that helps older adults, caregivers and families navigate the complex challenges of aging through advocacy and education.
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