In our June 2024 blog post, we discussed how to fund a long-term care event and ensure proper protection. In this post, we'll focus on planning for your long-term care needs. While it’s natural to avoid thinking about a compromised medical state, the reality is that 70% of people turning 65 today will need some form of long-term care, according to the U.S. Department of Health and Human Services.
None of us can predict our future care needs, but it’s wise to consider your preferences now while you’re cognitively able to do so. Delaying this process or avoiding conversations with loved ones can leave them uncertain about your wishes and burden them with tough decisions later. I’ve heard clients say, “I’m close with my children, so they’ll know what to do” or “We talk all the time about life, so I know [insert loved one] will do what's best for me.” But in my experience, these statements often reflect an unwillingness to confront life’s fragility. No one can truly know what you want without a direct conversation, and even your loved ones, who may also struggle with thinking about their mortality, may not know how to navigate your care decisions without guidance.
My hope for you in sharing this post is to equip you with the information to think through your care preferences and encourage you to have these important conversations with your loved ones, so they and you can feel better about plans for a major life event.
Health Scenarios to Help Clarify Your Care Preferences
Understanding how your care preferences align with potential health scenarios is a critical step in planning. Below are examples of extreme health situations that could arise, paired with common challenges and key considerations for each:
A rapidly progressing cognitive issue
Imagine a situation where dementia or Alzheimer’s develops quickly, leaving little time to adjust or prepare. In a situation like this, you would likely lose decision-making capacity before wishes are documented. An increased need for secure environments to prevent wandering or accidents would be difficult for family members to navigate with a plan, let alone without one. Key considerations:
Would you prefer transitioning to a memory care facility or aging in place with in-home caregivers?
What steps can you take now to appoint a durable power of attorney to ensure your preferences are followed?
Are you comfortable with family members stepping in as primary caregivers, or do you prefer professional assistance?
A gradually progressing cognitive impairment
This scenario allows more time for planning but still comes with challenges, such as balancing your independence with safety concerns, increasing reliance on family or professional caregivers over time, and planning for transitions as care needs escalate. Key considerations:
At what point would you consider moving to a care facility?
What are your non-negotiables for quality of life (e.g., maintaining hobbies or routines)?
How can you prepare your home to accommodate changing needs?
A sudden accident resulting in permanent severe physical disability
This situation might leave you physically dependent on others, requiring significant adjustments, including modifications to meet accessible housing needs. The adjustment to your new physical reality would take time and bandwidth to adjust to. Given the likely uniqueness to a situation like this, it could be difficult to prepare loved ones for their role in this scenario, resulting in an added strain on family dynamics if loved ones are unprepared to assist. Key considerations:
Would you prefer in-home care or a skilled nursing facility?
Are you willing to relocate if your current home cannot be adapted?
How can you ensure your preferences are documented for emergency decisions?
Temporary incapacitation with expected recovery
This scenario involves a finite period of intensive care, followed by a return to independence. While the disruption to daily life and routines would be short-term, there would need to be a reliance on caregivers or rehabilitation services. Coordination of care would be an added responsibility, as well as maneuvering between several medical appointments. Key considerations:
Would you prefer rehabilitation at home or in a facility?
Are there specific family members or friends you would want to assist?
How can you ensure continuity of care during your recovery?
Understanding Types of Long-Term Care
"Long-term care" includes services for individuals who can no longer perform daily tasks due to aging, illness, or disability. Care options vary, from in-home assistance to full-time nursing in specialized facilities. While others’ experiences may provide some insight, they shouldn’t dictate your own care plan. The quality of facilities, including "memory care" units, can differ greatly, so doing your own research is vital. Here are the primary care options:
In-home assistance
Many prefer to age at home, receiving help with daily activities like bathing and cooking from professional caregivers or family members. Home modifications may be needed, which can be costly and complex.
Continuing care retirement communities (CCRCs)
These communities offer a range of care from independent living to skilled nursing care. They provide convenience and predictability, but often require significant financial commitments.
Memory care
These facilities cater to individuals with dementia or Alzheimer’s disease, offering a secure environment with trained staff and personalized care. They include activities to stimulate cognition and emotional support for both residents and families.
Assisted living
Designed for individuals who need help with daily tasks but not full-time medical care, these communities offer housing, meals, social activities, and personalized assistance. This option may require downsizing and adapting to communal living.
Skilled nursing facilities
Also known as nursing homes, these facilities provide 24/7 medical care for individuals with chronic conditions or disabilities. They offer services like physical therapy and wound care but can feel institutional and difficult to adjust to.
Combination approaches
Some begin with in-home care and transition to a facility as needs increase. While flexible, this approach can be emotionally challenging and disruptive.
No action plans
Delaying care planning often leads to rushed decisions, higher costs, and emotional strain on loved ones who are unprepared for the complexities of care.
Challenges and Hardships of Long-Term Care Transitions
Choosing the right care approach involves not only evaluating preferences but also anticipating potential hardships. Here are some common challenges and considerations:
Downsizing and relocation
Moving out of a family home after decades can be an emotionally and physically exhausting process. Sorting through personal belongings, parting with sentimental items, and adjusting to a smaller living space can be overwhelming. Delaying this decision until a health crisis arises may force rushed and less thoughtful choices.
Costs of aging in place
Staying at home may seem ideal, but it can come with increased expenses, such as home modifications, ongoing caregiver costs, and medical equipment. Balancing these costs with your desired lifestyle may require compromises, such as cutting back on travel or other personal goals.
Impact on loved ones
Leaving decisions to family members can lead to stress, disagreements, and uncertainty about your preferences. Without clear guidance, families may struggle to make decisions that align with your values and needs.
Emotional strain of transitions
Moving to a new care setting, whether it’s assisted living, memory care, or a skilled nursing facility, can be emotionally challenging. Residents often feel a sense of loss as they leave behind familiar surroundings, routines, and even neighbors or community connections. Preparing emotionally for these transitions can make the adjustment smoother.
Planning Ahead and Taking Action
The most effective way to navigate long-term care decisions is to plan ahead. Here are actionable steps to help you prepare:
Reflect on your values and priorities
Think about your lifestyle, independence, and the type of care environment that feels most comfortable. Use the information provided above to formulate your preferences and consider discussing these reflections with a trusted friend or advisor to gain clarity. Here are some additional questions to help you reflect:
"What aspects of my current home or community are most important to me?"
“If aging in place, is my current environment suitable for someone with physical limitations and/or cognitive impairment?”
"How would a sudden move affect me emotionally and physically?"
"Do I have a support system in place locally or elsewhere? What activities are they able or not able to help me with?”
"How much responsibility do I want my family to have in making decisions for my care?"
"In what situations would I be open to moving into a community where care is readily available?"
Research and visit care options
Explore CCRCs, in-home care services, memory care facilities, and other options in your area. Visiting facilities or speaking with service providers can provide a better understanding of what to expect.
Communicate with family
Share your thoughts and preferences with loved ones. Clear communication helps ensure that everyone understands your wishes and can avoid confusion or conflict later.
Document your wishes
While there are legal documents, such as a Living Will, Healthcare Power of Attorney, and Financial Power of Attorney, that are all valuable in documenting wishes, consider a separate, non-legal document to keep track of your preferences. It needn’t be anything fancy, just something that can be referred to when needed.
Work with advisors
Collaborate with your financial advisor or care planner to align your long-term care preferences with your overall life goals and financial resources.
By addressing these issues proactively, you can create a thoughtful, well-rounded plan that brings peace of mind to you and your family. Here is a list of resources for you to leverage in clarifying your long-term medical care preferences: