Long-Distance Caregiving, Up Close: LTCI Insider

Commentary June 02, 2018 at 04:20 PM
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Margie Barrie, a veteran long-term care insurance (LTCI) agent, marketer and educator, has been writing articles about long-term care (LTC) planning and related issues for years.

Here she talks about what happened when her mother fell.

Several months ago, I received the telephone call that nobody wants to get. My brother called from Baltimore. He was in the emergency room with my 97-year-old mother who had fallen and broken her hip.

I am now experiencing long-term care planning from a totally different viewpoint: as a caregiver, and doing it long distance. I live about 1,000 miles away in Florida.

This is a huge reality check. I've been immersed in long-term care planning since 1990. But teaching it and selling this protection are totally different than living it with a loved one.

I hope that by sharing my experiences and insights about how to navigate the system, it will help you to help your clients, so they can emerge with the best outcome. And it is not easy.

This is a reality check about a situation that is going to affect all of us at some point. Nobody is going to escape — neither your clients nor you.

I've calling these revelations the Four Realities. For each reality, I will identify a message that you can communicate to your client.

To start, here are more details about my trip to Baltimore. I flew there after receiving the call from my brother. The Tuesday after I arrived, Mom had hip surgery and on Thursday, they moved her to the nursing home across the street for rehab. Two weeks later, she was discharged from the facility . She is now home.

The good news: Thank goodness, my mother has great long-term care insurance, so we don't have to worry about where the dollars would come from. We started with around-the-clock care, and a week later, we cut back to one 8-hour shift a day. As you can imagine, she is a high fall risk.

My initial expectation: My mother is a wonderful person, and I have been fortunate that we are very close and rarely disagree. I never even considered that this would change.

The bad news: The dynamics of dealing with my mother with the new circumstances.

Here's examples of what I have encountered:

My mother was moved to the nursing home at 9 p.m. I arrived shortly after to find her very upset about the fact that she was sharing a room, since she had been expecting a private room.

I had warned her she would be getting a semi-private room, since that's what Medicare covers for rehab. But she hadn't believed me. I finally asked the charge nurse to talk to her.

At 11 p.m., I told my mother I was leaving, and we would resume our discussion the next morning. She was still upset.

When I arrived at the facility the next morning, my mother informed me that they had awoken her in the middle of the night because her roommate had died.

The outcome is because she had made such a fuss the night before, I think she had intimidated the nurse. The other bed stayed vacant for almost two weeks. She did get her private room!

When she returned home and we started discussing home health care details — such as when to reduce the caregiver hours from 24 to 8 — it was soon clear that we did not see eye-to-eye. I wanted more; she wanted less. Managing my mother has been more stressful than managing her care at this point.

What have I learned and what advice can you provide to your clients?

Reality 1: Caregiving is tough.

When you hear the words from a client, "I don't need this, because my family will take care of me" — a reality check is needed. Yes, your family is there. But do you want your kids to take you to the bathroom, help you shower, and give up their careers to become a full-time caregiver?

One of the best things about having long-term care insurance policies is that the family gets the ability to supervise the care rather than provide it hands-on.

Think of this in terms of Depends adult diapers, sheets with plastic coating and rubber gloves. When I purchased these items at Walmart, would I want to use them myself to care for my mother, or give the bag of supplies to the home health care aide, who had sent me to buy them? I know my answer. In fact, without Selma, our wonderful aide, I'm not sure how I would have managed.

Many family caregivers are trying to work at the same time. That's tough — caregiving takes time. That's one reason why we see a growing number of employers adding long-term care insurance as an employee benefit.

Being a caregiver can affect your health. A recent study showed that among working women 50 and older, 20% of caregivers reported fair or poor health, more than double the number of non-caregivers.

Message to your clients: Caregiving is very difficult. It's much better to supervise it than do it hands-on.

Reality 2: Where care is being received: The continuum of care

Stand-alone long-term care insurance is no longer nursing home insurance. Now it is nursing home avoidance insurance. Most of the care is being received at home, and virtually everybody wants to stay at home.

A reason for the many battles we've been having with my mother is the issue of control. She wants to keep control — and is doing whatever it takes to do that. She definitely wants to stay at home.

Message to your clients: You have a very good chance of being able to get care at home. And with a long-term care plan in place, you have the dollars coming in to maintain control.

Reality 3 – Navigating the system

This is tough. Obviously, I know a lot about long-term care and assumed this would go smoothly. Wrong!

This is where your clients will need help.

I hired a care coordinator even before I flew to Baltimore. Care coordinators are social workers or nurses who have additional training and expertise in the long-term care continuum. Their role is to guide you through the system, help with coordinating the care and more.

Here's what I knew:

  • Mom was going to need home health care when she came home. I was hoping that the nursing home would keep her longer, but she was discharged after two weeks.
  • I would need input from professionals about how long we would need around-the-clock care and when we could start cutting back.
  • Her primary care doctor was going to be no help in determining this. He is not a gerontologist and had no experience in managing home health care. Nor did her cardiologist or surgeon.

To make the difficult decision of how long to continue 24-hour care, I put together a team of people to provide input and advice. The team included the care coordinator, the Medicare agency social worker, and the head of the agency I was using for daily care. For the first month I held weekly conference calls to briefly meet and assess the situation. I now just work with the care coordinator since we have cut back to four hours of care each day.

Message to your clients: Consider hiring a care coordinator. Unless you are a health professional and have the ability to assess care needs, you are going to need help making these decisions.

Reality 4 – Don't be afraid to expect accountability

I am usually a very easy-going person. But I found that in dealing with some of the challenges I encountered, I needed to get tough.

For example, when Mom left the nursing home, I was given the name of the social worker from the Medicare agency assigned to her case. I called the women three days in a row and left messages. I finally called her supervisor and learned that the social worker was on vacation that week and most of the next week. Nobody had been assigned to take over her case load — and they sounded surprised that I was even questioning that.

Message to your clients: You have a right to expect people to meet their obligations. Speak up.

So where are we now? I'm back in Florida after being in Baltimore for almost a month.

Mom's policy has covered most of the cost for one shift a day. And if she has to move to assisted living or a nursing home, that will be covered too.

Dealing with my mother is still difficult. I know she wants to keep control. I do understand that and respect that — sort of.

For example, I had ordered her a new wheelchair. She hated it — the wheels were too big — so she gave it away. She wouldn't tell me who she gave it to because she knew I would call to get it back. She did tell me several weeks later that she was taking a tax deduction for the donation. I still don't know who received it.

So far, she has not fallen again — yet. She has promised to use her walker all the time. I have been thinking about installing a video camera in her apartment to check, but I have not had the guts to mention it to her.

My situation for now? I'm grateful and relieved that we have the care she needs and can easily afford it because of her long-term care policy. Day-by-day we are managing.

However, I am keeping my fingers crossed. Not a great solution, but certainly a realistic one.


Margie Barrie

Margie Barrie, an agent with ACSIA, has been writing the LTC Insider column since 2000. She is also the author of Selling LTCI Today: 46 ways to find more clients and close more sales, the national marketing coordinator for the LTCP Designation provided by the Washington-based America's Health Insurance Plans, and national vice president of the 3in4 Need More Association.


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