Long Distance Caregiving

WebMD Live Events Transcript

In our far-flung society it's common to find caregivers and their loved-ones separated by many miles. What resources exist for long-distance caregivers? What unique stresses and complications should you be aware of? Ronda Talley, PhD, from the Rosalynn Carter Institute for Caregiving, answered these questions and more on Oct. 21, 2004.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Support for this University course was provided by VistaCare.

Welcome to Caregiver University: "Learning to Care for Someone You Love." Your instructor is Ronda C. Talley, PhD, MPH, executive director of the Rosalynn Carter Institute for Caregiving. She joins us to discuss long-distance caregiving.

Dr. Talley, please tell us a bit about the Rosalynn Carter Institute for Caregiving.

The Rosalynn Carter Institute for Caregiving (RCI) was founded in 1987 at Mrs. Carter's alma mater, Georgia Southwestern State University. We now have an office in Washington, where we have our national quality caregiving coalition.

The goals of RCI are to support professional and family caregivers across all disabilities and across the lifespan. We do this through education and training research, public awareness, and policy and advocacy activities.

Is long-distance caregiving on the rise in this country?

It's estimated that 5 to 7 million Americans are providing long-distance care. As the population ages, we expect that number to rise. In addition, families are scattered across the country -- we didn't find that 20 years ago. So the issue of caring for a loved one who is geographically apart from you is a rising concern.

The RCI offers many programs to help support long-distance caregivers. One is the CARE-NET, where we work with communities to help them establish caregiving networks.

Mrs. Carter also convenes the Caregiving Coalition twice yearly. This group is comprised of almost 50 national organizations and governmental groups working to support caregivers across the country. For instance, the Alzheimer's Association of America is working on long-distance caregiving issues. And the National Hospice and Palliative Care Association is also taking strides to address this increasing need.

My 84-year-old parents are in relatively good health and live nine hours away. In this last year I am hearing more about how much the miss me. If moving closer to them is an option, would it be appropriate?

One of the best things a caregiver can do is listen to what they're telling you. Since they're telling you they would like to see you more, they miss you, you might want to talk with them about what changes have been going on in their lives.

For instance, your mother may tell you she misses you and what she'd like for you to know is that the care of your father is becoming more complicated, so one of the first things that you would want to do is to go below the surface of their missing-you statements.

At your parents' ages, it's not uncommon for care needs to become more pronounced. If feasible, you may want to consider how you can be a more active caregiver to them as they age.

Do you have siblings or other relatives that live near your parents? You might want to find out if they can help meet your parents' care needs in some way.

There are things you can do long-distance to support your parents, including:

  • Helping them make financial plans
  • Thinking through issues of long-term care
  • Discussing housing arrangement as they get older

These are all issues you could help them address long distance, as well as when you visit them.

"It's estimated that 5 to 7 million Americans are providing long-distance care. As the population ages, we expect that number to rise."

I am 22 years old and very sick with lupus. My mom (who lives three hours away) is very stressed out about me and it's causing her to be sick -- what can we do to stop her from getting so upset?

Many times parents are concerned because they're not sure their child is getting the care that is needed, so one of the first things you might do is talk with your parents about your local care arrangements and how you view them.

For instance, do you feel that the support provided to you by friends or colleagues is sufficient to address your health concerns? If they are, have you communicated this effective support system to your parents? Your parents may just want to know that you're being well cared for. We all know it's really true that worrying can make you sick, and if your mother is thinking that you don't have the appropriate care, it can really influence her health. I recommend:

  • Having an open conversation with your parents, discussing your care needs.
  • Then let your parents help you think through what some of your options might be.
  • Then contact local resources to help address those needs.

When parents feel a sense of activity and purpose when helping a child, it often empowers them and helps them feel like they're doing all they can do, even though they're not physically present. If your care needs can't be addressed in such a way that you and your parents feel comfortable about the arrangements, the three of you may want to consider whether it would be a viable option to move closer to one another.

As a vocational trainer for disabled adults, how can I reach out and support my very rural consumers and families more?

Mrs. Carter often talks about the needs of rural caregivers and their difficulties, which can include:

  • Resources can be scarce
  • People may live far from one another
  • Medical resources -- particularly access to specialists -- can be difficult to obtain

Since the RCI was founded in a rural area, many of our solutions have come from the people in that rural setting. You may want to connect with the disability support groups within your area, or if your area has a CARE-NET, then you may want to think about contacting that group for additional information and support.

My grandparents definitely need help, but they are so reluctant to have a "stranger" come in. Is this common; people who are wary of nonfamily coming in to their home to help them?

Yes. The issue of grandparents accessing resources is a very big issue. With this generation, there are good reasons why they have these feelings.

This generation was raised in an era where family members took care of their own, and it was seen as a sign of lack of family resources to ask paid care to come do a task that was typically performed by a family member. There are cultural and emotional issues, in terms of having individuals provide care in the home.

However, at some point, one partner, either the husband or the wife, will have a care need which cannot be taken care of by typical family resources. It's usually at that crisis point that previously held beliefs about nonfamily members providing in-home care are challenged, and it's typically then that the couple reconsiders their attitudes about having nonfamily members come into the home.

My oldest and dearest friend of 45 years has been diagnosed with inoperable pancreatic cancer and has less then a year to live. I want to call her every day but feel I may cause anxiety; she has two devoted daughters, sisters, a brother and close companion that support her daily. I have seen her once (she does not live close by) and have mailed her cards and gifts. Is there a "general" need of constant contact or to be left alone?

There aren't any rules about how often you should contact, but she definitely should not be left alone. From the situation you've described, your friend has a good support group. What you can do from afar is this:

  • Have a conversation with her and tell her what you're feeling; tell her you would like to do things that are helpful for her.
  • Then, together, determine what that pattern of care should look like. She may be the kind of friend who would really enjoy hearing your voice every day, or she may say she'd love to get a card.

It's important for both of you that you have ways to show her how much you care and value her, and that you recognize her needs at this special time and want to do whatever you can to show her how much her friendship means to you.

"If the caregiver's health is compromised, they can't be an effective caregiver, which means the support system you've put in place for the care recipient disappears, and we now have two casualties."

I am going batty here with a very uncooperative, argumentative husband and need all the help I can get just to keep my health and sanity. There is no family support as they are all 1,500 miles away. My social contacts are limited with no way of expanding them due to his poor health. All I know is right now I am constantly being yelled at for nothing, he is picking arguments over nothing, and everything is my fault. What can I do, I am 70 and he is 81?

First, recognize what tremendous care you're giving and under what difficult circumstances you're providing it. It sounds like you're doing an incredible job taking care of your husband under very adverse circumstances.

One thing we've grown to understand is that the care recipient, in this case your husband, doesn't always understand or even realize the impact that their words and behavior can have on their caregiver. This is a difficult situation. And it's not one, unfortunately, that is unusual.

You indicate that you have limited social support, and I would encourage you to do what you can to broaden that. That may mean:

  • Contacting your church or synagogue, many of them have ministries to support caregivers
  • Calling friends that you haven't spoken with in awhile
  • Getting family members on the phone that may not realize what a difficult time you're having and how they can help

It's challenging when you have a spouse whose disability is such that you feel you can't get out of the house. Sometimes they complain if you try to get out and have lunch with a friend or get your hair fixed; they don't want to be alone.

If you reach out in the ways I've suggested and talk with these potential supports about ways you might have someone in to be with your husband while taking some time for yourself; that might help restore some of your own feelings of living life, as well as being a caregiver.

Sometimes it's difficult to get a care recipient to allow you to bring in someone to sit with them. At first perhaps it could be a neighbor or someone from the church. In the situation you're describing, one of the most important things to remember is to you must start doing things to take of yourself.

We've learned from research that if the caregiver's health is compromised, they can't be an effective caregiver, which means the support system you've put in place for the care recipient disappears, and we now have two casualties. In order to be a good caregiver, you need to take care of yourself.

In this age of new HIPPA guidelines, how much information can family members expect to get from a doctor long-distance, either by phone or email?

Doctors are reluctant to share information without permission from their patients. That situation is easily solved.

In my own family we've had to address that concern. I live 10 hours from my parents, and I often need to speak with their physicians. What we've arranged is for them to give permission to their physicians to talk to me. In that circumstance their physicians have been very forthcoming with me, but without that kind of permission they hold the patient information to be confidential.

Many physicians now realize the importance of keeping caregivers informed about the progress of the care recipient and they want your help in providing the best care. That's a very motivating factor for them to share information when appropriate permission has been given.

Nurses are an excellent source of information, and they also are able to take more time talking with caregivers than physicians. They, too, would need permission to provide information about the care recipient, but once that is given, they are usually very forthcoming about explaining the details of a complicated procedure or medication management.

Is it appropriate to ask to join in on doctor's visits by phone? So many times, patients don't hear or understand everything they are being told, and having a family member's ear there seems like it would be a big help.

It is very appropriate to listen in on phone calls. Many times when information is given, even when you're facing one another, it's hard to remember all the details of the conversation.

Having a caregiver present with the care recipient when the physician or nurse speaks to them, or having them present in a telephone conversation, are both good ways to ensure that accurate information is available for treatment.

Are there home care providers who specialize in working with families who live out of town, who would provide daily or weekly updates by email or phone?

Yes, there are individuals that can be of assistance. One place is:

The Eldercare Locator
(sponsored by the Administration of Aging)

The Elder Care Locator will provide information about the area agencies on aging across the country. If you want to find funding for services you might wish to visit www.benefitscheckup.org. This is a program of the National Council on Aging that will help you find out about whether your relative qualifies for federal or state assistance.

You may also visit the web site of the National Quality Caregiving Coalition at www.nqcc-rci.org. Many member groups of the NQCC provide information on how to locate local services.

"It may wear you out, it may change your life, but it's one of the most important experiences an individual has, particularly when caring for a loved one."

We cannot afford to move closer to my husband's handicapped parents yet, but they need help now. I feel so helpless. Where do I go?

One of the first places they can turn to for assistance is the Area Agency on Aging. The federal government established AAA in every state to provide a whole range of programs and services for the elderly.

Most of these agencies are associated with city or county governments. They can provide information or referrals to other city agencies and sometimes provide care management, which sounds like one of the most important things you're asking for.

What criteria are used to determine that an elderly person is no longer able to live independently?

One of the most important factors in deciding whether an elderly person can live independently is their own wishes. Absent a precipitating event, such as a fall or a progressive illness such as Alzheimer's disease, most elderly individuals would tell you they prefer to live in their own home throughout their life.

However, when a precipitating even occurs, many times that situation must be reviewed. In some cases, the elderly person will decide it's time to change living arrangements. They'll often consider their options, such as moving in with a family member or looking at local care availability, such as a skilled nursing facility, independent care facility, or nursing home.

That's one of the best situations, when an individual of their own volition decides a change in residence is needed in order to address the care required. When this doesn't occur, however, family members may be called in, or they'll conduct a family meeting to consider the elderly relative's needs and what care options are realistically available and affordable.

A family meeting can also help clarify which members in the family may be able to provide support. So the things that can influence that critical care transition are a combination of factors:

  • The willingness of the elderly individual
  • His or her care needs
  • The availability of local resources
  • The family support and decision-making process

Dr. Talley, do you have any final words for us?

Being a caregiver is one of the most challenging and rewarding experiences an individual is privileged to experience. It may wear you out, it may change your life, but it's one of the most important experiences an individual has, particularly when caring for a loved one. The Rosalyn Carter Institute for Caregiving is available to support caregivers.

The Rosalyn Carter Institute for Caregiving

As a long-distance caregiver myself, I realize the critical nature of this experience. We at the RCI will be working to help address your needs.

Thanks to Ronda C. Talley, PhD, MPH, executive director of the Rosalynn Carter Institute for Caregiving, for joining us to share her expertise with us.

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