March 21, 2016 | by The Polyclinic
dad and daughter

Family members often provide the majority of long-term support for aging loved ones.
In 2010, the caregiver support ratio was more than 7 to 1. By 2050, this is expected to fall to less than 3 to 1.

This is the first of three articles in which we address significant moments in the caregiving journey and provide recommendations to help support caregivers.

It can feel like your heart is in your throat – that moment you realize your loved one can no longer live independently without support. Whether an aging parent, spouse, or someone close to you, the list of questions start and spiral. Who will help with their care? What if they don’t want help? What about finances?

Becoming a caregiver—and becoming a care receiver— is a life-changing role faced by many Americans every year. More than 6 million family caregivers are managing care for an older or infirm family member in the U.S., according AgingCare.com.

Here are several ways to identify when caregiving intervention is needed and how to navigate the first steps.

Don’t Ignore the Red Flags

Sometimes the warning signs are contrasts to behaviors we’ve always associated with our loved ones and others can be more gradual --- your fastidious father no longer pays attention to his appearance and mail piles up on his once-spotless desk; your mom gets agitated and flustered more quickly and begins to forget easy conversations from earlier in the day.

Common signs that your loved one may need caregiving help:

Physical

  • Weight increase or decrease
  • Hygiene changes
  • Sleeping too much or too little
  • Unexplained injuries or frequent falls
family caregiver

Home Environment

  • Hoarding or excess clutter
  • Forgetting to grocery shop or letting food rot
  • Unpaid bills
  • Unusual smells
  • Damage to car

Emotional and Cognitive

  • Outbursts, irritability
  • Withdrawal from others or unusual activities for that person
  • Confusion
  • Memory loss

Initiate the Conversation

No matter how you arrived at deciding to take action, it’s important to start the conversation with your loved one early. Doing so can make planning less overwhelming and also help preserve as much independence for your loved one as possible. However, be prepared to meet initial resistance. Most people want to stay as independent as long as they can.

Anita Schiltz, ARNP, a nurse practitioner in internal medicine at The Polyclinic Madison Center, suggests approaching a conversation with a loved one from the standpoint of honoring their independence to reduce potential setbacks. “Assistance is available at all levels and doesn’t always mean a nursing home. It could mean an opportunity for more social outlets, medication oversight, home cleaning, or assistance with activities of daily living (ADL), additional home supports can allow for staying Independent longer.”

Start with Heart

Be mindful that your loved one most likely doesn’t want to lose their independence. The feeling of being a burden to their family and friends can foster guilt and fear. Schiltz observes that older people’s pride can be a barrier to making logistical decisions that would improve quality of life. For example, she shares that they may fear “looking old” by using an assistive device such as a walker. “I typically go back to the prevention strategies chat, and focus on staying independent and safe as long as possible. This is just a hard conversation, but if it’s coming from your heart, a place of love and caring concern, then that is a good start,” she says.

When prepping for the first conversation, consider the timing and space for the conversation. Where can you be the most patient and relaxed? Where will your loved one feel the most comfortable? How will you respond if there is resistance? Thinking through these questions can help you position the conversation with your loved one’s best interest in mind.

Work with Your Loved One’s Health Care Provider

Your loved one’s primary care provider can be a valuable resource to both of you. “If you notice changes, suggest a visit to the doctor together,” says Christine Winther, clinical social worker with The Polyclinic’s Care Advantage Program, focused on care management for Medicare Advantage patients.

When attending a clinic visit with a loved one:

  • Ask for a longer visit.
  • Alert the physician to the changes you’ve noticed.
  • Discuss any changes in care needs, behavior, or mood.

Participating in the visit begins to bring you into the conversation with the physician but can also bring peace of mind. “The physician will likely order tests and further medical work-up to rule out any acute medical conditions,” says Winther.

It’s often during these family visits to the primary care physician that the patient will soften to the reality of needing some help. Typically what will follow is a series of labs and additional visits by the patient to specialists such as neurology, cardiology, and endocrinology to diagnose underlying issues.

Anticipate Barriers to Health Care Information

Personal health care information is protected by law. Unless your loved one has given verbal or written permission to their healthcare providers, getting information about diagnoses or medications will be difficult. “Even having a Power of Attorney does very little unless the loved one is incapacitated or in a medical emergency,” says Winther. “Don’t rely solely on your status as Power of Attorney to speak with medical providers or others involved with housing or finances.”

Plan Ahead

  • Discuss and anticipate questions about their care. Whom would they prefer to be involved with their healthcare? Who should participate in future decision making? Doing this early, while they are still able to communicate their preferences will help decrease confusion among family members and providers. It can also prevent unnecessary legal disputes.
  • Obtain and review documentation for future caregiving decisions. This saves time when you may need the form in the future for a decision with quick turnaround. Keep these documents in a secure central place that you can easily reference. Winther recommends obtaining and reviewing documents such as HIPAA authorization, Healthcare Power of Attorney, Durable Power of Attorney, and Advance Healthcare Directive early. Even if you do not have permission to access your loved one’s medical information, you can still alert health care providers about family concerns, observations and request that the next office visit includes a follow-up of these concerns

Create a Caregiving Road Map

  • Designate when, where and by whom help will be provided.
  • Delegate care tasks.
  • Document their preferences.

Empower Your Loved One with Choices

Engage your loved one with the power of self-determination as much as possible.

One way to empower the patient and identify who they want involved in their care is creating what Winther calls a “road map” to designate when, where, and by whom help will be provided. Write down things to identify who they would like to help with various aspects of daily living such as cooking, housework, transportation, billing, dressing etc. “Documenting their wishes can facilitate discussion and distribution of caregiving responsibilities among all caregivers, both paid and unpaid,” says Winther

Resources

At The Polyclinic, you may request a referral to speak to a social worker through your loved one’s primary care provider. Patients on a Medicare Advantage plan have access to a licensed social worker and caregiving support through the Care Advantage Program.

What's Next in this Series:

  • What is Caregiver Stress and Burnout? Learn about stressors and risk factors for burnout, how to ask for help, and the resources you need to build a self-care plan.
  • Long-Term Care Needs. Learn the options for higher levels of care, when to consider them, and how to manage economic factors for increasing care.

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