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Who Will Take Care of Mom (or Me)?

Planning ahead is key when facing long-term care decisions.

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When Joan's mother, Carol, was diagnosed with Alzheimer's disease last year, Joan was faced with caring for her mother and her family in her home.

With Carol having no long-term care insurance, Joan and her husband had to pull from their savings and take time from work to care for Carol.

Since the transition, Joan is looking to protect her family from her own potential long-term care needs.

The need for long-term care assistance might be due to a terminal condition, disability, illness, injury or just old age and may only last for a few weeks or months, or it may go on for years. It all depends on the underlying reasons for needing care.

Providing long-term care can be time consuming, expensive and exhausting. Helping protect families with long-term care insurance should be a part of everyone's plan.

Now more than ever, it is important for professionals to help clients and patients understand the need to develop provisions in the event a loved one needs care long term.

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Prepare for the Unexpected

According to research from AARP, more than 43 million Americans serve as unpaid caregivers for adults age 50 and older, and yet nearly one in four caregivers say they have a difficult time coordinating care.

Preparation is important because care planning involves decisions about finances, legal issues, the needs and wishes of the care recipient, family cooperation and a variety of issues specific to each family and their loved one who needs care.

"As with most things in life, the first step is the hardest. Planning long-term care and everyone's role as a caregiver is a lot to digest, particularly if their parents haven't given their future much thought," explained Robert Bua, president, Caregiving Division, Genworth Financial.

"We tell people to get started - have the talk. As parent's health, finances and lifestyle change, so will their needs and views. Also, laws, financial programs and local options will change. So revisit these conversations regularly."

Misconceptions in LTC Financing

Contrary to what most people believe, private health insurances or HMOs don't cover long-term care costs. They usually only cover expenses relating to an illness or injury, and that's only for hospital visits, doctor visits and prescriptions.

Even the most comprehensive private health insurances won't pay for assistance with daily activities. The only private insurance available that offers coverage for such activities is a long-term care policy.

Another common misconception is that long-term care insurance and disability insurance are the same. This is not true. Disability insurance only replaces income when someone gets hurt or ill, but LTC insurance covers home care, assisted living or nursing home expenses.

According to Bua, while every caregiving situation is unique, there are a few commonly used legal documents worth knowing about. They include a living will, durable power of attorney, and a "do-not-resuscitate" order.

These documents are important because family members will want to be able to make decisions that are in line with their loved one's wishes if he or she is incapacitated.

Disagreement and confusion among family members can be minimized if there are advanced directives to be followed. In addition, healthcare professionals are trained to honor a family's wishes.

More Options in Long-Term Care

Consumers have more options today than ever before as seen by the increased number of home care agencies.

According to the Centers for Medicaid and Medicare, there were approximately 9,200 Medicare Certified Home Care Agencies in the U.S. at the start of 2008. Today, there are slightly more than 11,000, representing an increase of 20 percent.

Conversely, during this same period of time, the number of Medicare Certified Nursing Homes has increased less than one-half of 1.0 percent from just more than 15,000 to 15,100.

According to Genworth's 2012 Cost of Care Survey, the median hourly cost for homemaker services and home health aide services nationally have risen 1 percent over the past 5 years to $18 and $19, respectively.

By comparison, the median annual cost for care in an assisted-living facility is $39,600 nationally, an increase of 1.2 percent since 2011 and a 5.7 percent annual increase over the past 5 years.

The comparable cost for a private nursing home room rose 4.2 percent from 2011 to 2012 to $81,030, or 4.3 percent annualized over the past 5 years.

"When it comes deciding on options for long-term care, a good rule of thumb to keep in mind is that costs may go up every year but so do opportunities to negotiate for price breaks," Bua added. "Family members should shop around and ask about payment plans. They should check to see if they belong to a group or network that can use its purchasing power to negotiate for a discount for long-term care services."

A Physician's Perspective

As an ER doctor, Charlotte S. Yeh, MD, chief medical officer, AARP Services, Inc., has seen families in crisis in the emergency department, overwhelmed from the stress of caregiving.

"The emotional volatility from the stress and burden of caregiving can be so overwhelming that family members can behave in a way they would never expect of themselves. And it is so understandable given the love, guilt, helplessness and the range of emotions they feel about their loved one, especially when they remember how it used to be."

Yeh tells professionals to encourage families in this situation to take time out for themselves. "They can't be helpful to others if they are exhausted. There are adult day care centers in many communities. They can set up rotating schedules to share the caregiving duties.

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Make sure they are accessing a full range of services that are available for their loved ones.

She added that professionals should never forget that they are not the patient. The patient and their family are the ones who need calm guidance and help. "Demonstrate good communications skills. While this health experience might be routine for you, it's not for the family and patient.

Be a good listener, and show patience. No matter how stressed and outrageous the patient or family can be, just listening and acknowledging their pain can go a long way."

Yeh provides these additional ideas for professionals:

  • Implement a formal caregiver assessment tool as part of care plan for patients.
  • Develop education modules for families and caregivers.
  • Survey families and caregivers to generate ideas about improving your business.
  • Assist families and caregivers to obtain health care proxies, advance directives and advanced care plans.
  • Consider implementing a patient apology program to use when things did not go as planned, or when a medical error occurs.
  • Provide 24/7 accessibility to your services because caregiving is a 24/7 experience.
  • Ask families and caregivers to share stories about their loved one. Invite them to bring in pictures and other mementoes to help your staff fully appreciate the patient.
  • Demonstrate cultural sensitivity and facility with language to match your patient population.
  • Consider adding a caregiver respite program.
  • Sponsor a get-together for caregivers, provide tip sheets and designate a special place in your facility where caregivers can take a break.
  • Make sure transportation services are available for patients and caregivers.

No two families are alike when it comes to their caregiving support needs.

It is important that they know they are not alone and may have more options than they think.

Care decisions are complex, and families should take the time to know their options and the care needs of their loved one.

Leslie Feldman is a frequent contributor to ADVANCE.


 

If you read many financial articles long term care premiums are going through the roof. I know that when I signed up my rate was locked in for 10 years and I probably will not be able to afford the premiums after that as I will be retired. For that reason I am considering dropping it now as I am not likely to use it before retirement. I also had to make decisions for my when she developed Alzheimers. We spent all of her money on her care within about five years and then applied for Medicaid. That is what will happen for most who are not wealthy.

Peggy ,  RNNovember 04, 2012
Warrenton, VA



Very informative!!

Dawnette  Chambers November 02, 2012
Tampa , FL



Great advice. I just spent 5yrs caring for my Mom with Alzheimer's. It was a rude awakening to discover her med ins did not cover long term care. Even being in the healthcare field, I had no knowledge of this situation. It was difficult to coordinate my home, job, home healthcare & eventual placement in long term care facility. A financial & emotional drain. Luckily, my contacts in the ER helped me with this transition. I will be forever grateful. I plan on looking into long term care insurance for myself so this situation does not repeat itself. Thank you, Karen Cleaver, RN, BSN

Karen Cleaver,  RNNovember 01, 2012
Bensalem, PA



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