Long Distance Caregiving

Families are changing all the time. As they follow jobs across the country, they are more likely to be caring from a distance for aging parents.

Successful Long Distance Caregiving

It starts with you and your perspective. Be Realistic!

  • You will not be able to do everything, but you will be able to do enough.
  • You will need help. Ask for it! If you have a personal conviction that keeps you from asking for help, seriously consider giving yourself permission to change that rule!
  • If you define successful caregiving as “doing it all,?? you are sentencing yourself to unnecessary guilt and misery that will drag you down and limit your ability to provide good care. Don’t do it!
  • You will not be able to satisfy everyone’s expectations, but you will be able to satisfy crucial needs.
  • Develop healthy boundaries with family members and set their expectations to respect your abilities and limitations.

Assessment-Assessing From A Distance

Plan ahead. Schedule a non-emergency visit for up-close assessment.

Determine if your loved ones need help, a change, or improvement.

To the fullest extent possible, plan with rather than for your loved ones, considering their interests and preferences as well as their needs.

Choice – Dignity – Respect
The telephone may be the most important tool in long distance caregiving. During phone calls with your loved ones, listen for warning signs. Do they refer to any significant changes in their physical, social, or financial situation? If so, do these accounts agree with your own and others` observations? Or does it seem that they are exaggerating or minimizing any concerns? If so, you may need an objective third party to conduct an assessment.

Face-to-Face Assessment

Here are some tips for making the visit count:

  • Do all you can to maintain a positive attitude!
  • Use the resources in this manual to prepare as much as possible before you leave.
  • If possible, set aside enough time to include pleasure as well as business in your trip.
  • Prepare for your loved one’s possible reactions.
  • Your visit will involve a lot of personal questions and possible life style changes.
  • Anticipate how your loved one might respond.
  • Arrange for siblings, friends, other family members, or anyone else who might be involved to be present and participate.
  • Realize that you may not be able to identify all of your loved one’s needs and identify all resources in one visit.
  • You will probably need to follow up after you return home.

Assets and Needs

What seems to be working well and what are the needs?

  • What is his/her general health status?
  • Is he/she able to take care of daily grooming and hygiene?
  • Is he/she able to move around with little or no assistance?
  • Is he/she able to prepare meals?
  • Is he/she eating nutritious meals?
  • Is he/she going to doctor appointments as needed?
  • Is he/she taking medications as prescribed?
  • Is he/she able to pay bills?
  • Is he/she able to do housekeeping?
  • Does he/she have social contact outside home?
  • Can he/she still drive? If not, does he/she take a taxi or bus or ask for help?
  • Is his/her home safe and free of hazards?
  • How well has he/she adjusted to deaths, especially those close friends or relatives?
  • How well has he/she adjusted to changes in living arrangement?
  • Has he/she prepared legal documents, such as wills and advance directives? Are these documents in a place where other family members can find them?
  • Are insurance policies up to date? Where are the copies kept?

Assessing Risk

  • Is there an emergency?
  • Is health or safety at risk?
  • Is there any one else who can intervene on your behalf?
  • Can a temporary plan be developed until you are available to go?
  • Is there anyone in the area who can provide objective, reliable information about the situation?

Planning and Action

Begin developing action plans right away!

  • Even if you have not thoroughly assessed the situation, it is not too early to start planning and taking action to meet needs.
  • Action plans should take into consideration your loved one’s preferences, and allow them to exercise as much choice as possible.
  • Action plans should be flexible, implemented on a trial basis, and changed as needed.

Resource Tools and Connections

  • Internet
  • Phone
  • Community
  • Social Networks
  • You, the Caregiver

Essential Resource Tools and Connections

  • Use the internet to locate educational resources as well as information on services and benefits.
  • Use the phone to gather information and get referrals to the right resources.
  • Look in your community for providers who offer services that meet your loved one`s needs.
  • Use social networks to provide supports in your absence!
    • These networks include persons with whom your loved one has a friendship, family, or faith based relationship.

Internet

Go to www.aarp.org for articles on long distance caregiving.

  • AARP Caregivers Circle
  • Elder Care Locater Databases
    ??Check lists” for home health and long term care providers.
  • Use these as research tools to find out about the organizations such as the following:
    • American Association of Homes and Services for the Aging (AAHS)
    • National Adult Day Services Association (NADSA)
    • National Association For Home Care
  • National Council on Aging Benefits Checkup
  • National Association of Professional Geriatric Care Managers

Internet Education and Reading

Educate yourself about the aging process and caregiving

  • Family Caregivers Online (this site): Role of family caregivers, caregiver stress management, normal aging, chronic diseases, sensory loss, communication and relationships, legal and financial planning, government benefits, internet and community resources, safety, independence, and housing options.
  • Live workshops

Offsite Resources

  • Explore the Our Senior Years Website! www.oursenioryears.com
  • AARP- health and wellness, economic security and work, long-term care, independent living, and personal enrichment.
    www.aarp.org/
  • National Institute on Aging Caring from a distance    https://www.nia.nih.gov/health/getting-started-long-distance-caregiving 
  • Take the “What is Your Aging IQ?” test. A twenty question T/F quiz with the answers and explanations.

Educate yourself about your family member`s chronic illness and sensory loss

  • Alzheimer Disease
  • Cardiovascular
  • Chronic Pain
  • Endocrine Disorders (Diabetes and Thyroid)
  • Intelihealth has multiple health/medical resources including chronic illness. It has a handy scrolling menu with information on specific disorders only a click away!
    www.intelihealth.com/IH/ihtIH/WSIHW000/408/408.html
  • Moss Rehab Resource Network has “Disability Fact Sheets” on a number of disorders related to aging as well as other resources.
    www.mossresourcenet.org/index.html
  • Caring From a Distance  website for an independent, non-profit organization dedicated to serving the needs of long distance caregivers

Assistive Devices

Consider assistive devices to enhance safety and independence. Use these links to explore what is available:

Medications

Several drug companies offer discounted medications by making an application that is available online

Any US armed forces veteran honorably discharged is eligible for discounted or free medication ranging from no cost to less than $10.00 per prescription per month. Call any Veteran`s Administration hospital for more information.

Internet Tools for Home Safety and Independence

  • Making Your Home Safe For Seniors: A Room by Room Assessment

Financial Resources, Benefits, and Services

  • The Eldercare Locater
    www.eldercare.gov

    • On the website you enter a zip code for the location where services are needed.
    • In most cases, a local, regional, and state contact will be given, including the nearest Area Agency on Aging.
    • Or call 1-800-677-1116
  • Benefits Checkup
    www.benefitscheckup.net/
  • The State of Texas Referral System (STARS)
    www.txstars.net

Begin to sort through the Medicaid, Medicare, and Social Security maze!

  • Medicare
    www.medicare.gov (1-800-633-4227)
  • Centers for Medicare and Medicaid Services (CMS)
    www.cms.hhs.gov (410-786-3000)

    • Formerly the Health Care Financing Administration (HCFA)
  • Social Security Administration
    www.ssa.gov (1-800-772-1213)

When Home is No Longer an Option

  • Use these resources to educate yourself about nationwide databases on home and community-based care.
  • Find many articles to help caregivers make informed decisions.

Geriatric Care Managers and Case Managers

  • Consider engaging the services of a geriatric care or case manager who is a professional, with training in gerontology, social work, nursing, or counseling, and who specializes in assisting older people and their families.
  • Use these links, and/or consult the local Area Agency on Aging.

www.caremanager.org

http://www.helpguide.org/home-pages/caregiving.htm

http://www.caregiverhomes.com/for-caregivers/cg-elder

www.myziva.net

Internet Skills

  • Do your computer skills need an update?
    • Take classes at reasonable cost available at local colleges.
    • Get help from a friend.
    • Go to the library and ask for help.
    • Check with a local senior center.

Telephone

  • Use the telephone to maintain contact with:
    • Parents, siblings and other relatives
    • Health care providers
    • Community service providers
    • Friend, family, and faith support providers
  • Much of the service coordination and problem solving involved in caring from a distance can be done over the phone.
  • Use of the phone frees up time for more pleasure and less business during visits!
  • Partnerships can be built with service providers through regular phone contact.
  • Partnerships improve the quality of care your loved one receives and prevent or help resolve crisis situations more effectively!

Information and Referral Lines

  • Call The Elder Care Locater at 1-800-677-1116 to identify local Information and Referral lines.
    • In most cases, this will access local, regional, and state contacts including the nearest Area Agency on Aging, as well as an Ombudsman referral.
  • In Tarrant County, call (817) 258-8180 for the Aging Information Line of the United Way and Area Agency on Aging.
  • In Dallas County, call (214) 871-5065 for the Community Council of Greater Dallas.
  • In the North Central Texas region (14 counties surrounding the Metroplex) call 1-800-272-3921 Area Agency on Aging of North Central Texas.

Researching Service Providers

  • Elder Care Locator: 800-766-1116 to locate senior services in the USA
  • Be prepared by developing a filing system to keep records before you call service providers. You can use:
    • A spiral notebook.
    • Folders for individual or similar organizations.
    • A 3-ring binder with index tabs for each organization.
  • Have paper and pencil or pen by the phone if you are taking notes.
  • If you will be recording information electronically, have a link to the program you use on your desktop (Notepad, Microsoft Word, etc.).
    • Open a new document for each agency.
  • Create a folder for similar organizations, e.g., Nursing Homes, Assisted Living, Hospice, In Home Health Care, Respite, etc.
  • When contacting service providers make sure you are prepared.
    • What do you want to know?
  • Get the facts!
    • What is the organization`s name, address, phone, fax, web address, etc.?
    • Who are you talking too? Get the name, title, department, extension, and email address?
  • What are their requirements?
    • Eligibility?
    • Fees?
    • Documentation?
  • Is there a waiting list?
  • What is their application process?
  • Are there special requirements or restrictions, i.e., is transportation provided; are pets allowed in residential facilities?
  • Your assessment and research identify available resources in your loved one`s community.
  • Resources could include the following:
  • Local Area Agency on Aging (AAA)
    • Family Caregiver assistance programs;
    • benefits counseling
    • legal assistance
    • Local support for group meals.
    • Please note: each AAA offers its own unique programs and services, so ask what is available)
  • Fine Meals on Wheels Meals On Wheels programs throughout the US at Meals on Wheels – find in your area
  • Senior Centers
  • Home Health
  • Transportation Services
  • Assisted Living, Nursing Home, or Senior Day Care Centers
  • In home health care and other assistance.

Engaging the Family Member and Local

It Takes a Community

 
  • Engage natural supports, especially within the family itself.
  • Talk to family members
    • Have a family conference by telephone or in person.
    • Clearly define what the needs are and ask for specific help.
  • Ask siblings for help
    • What needs most closely match the skills of you and individual family members?
    • Who makes decisions in the family? Is that working?
    • What adjustments need to be made to how caregiver responsibilities are shared?
  • Communicate, communicate, communicate!

Engaging Your Family Member When They are Resistant

  • Ask your family member to be honest about how they feel about receiving help.
  • Talk about the consequences of what will happen if you do not get help now.
  • Explore concerns about how much that the service will cost and what financial assistance is available.
  • Explain what the service will do.
  • Listen to their fear, don`t argue and accept it even if you do not agree.
  • Be positive
  • Offer support.
  • If your family member is resistant, consider these measures for a smoother transition to needed services.
    • Investigate services and service providers until you have a level of trust in them. Your confidence and trust will transfer to your loved ones.
    • Ensure that he/she understands the service and how it will contribute to their independence.
    • Accompany him/her to a facility such as a senior center to provide support in the beginning, or be present for in-home services.
    • Explain what it means to you and perhaps ask him/her to do you a favor and just try it, perhaps on a trial basis.
    • Offer the service as a gift if there are financial concerns.
    • Have a person he/she respects approach him/her about it.

Social Network -Local, ‘Natural` Supports

Who will be there when you cannot be?

  • Look for naturally occurring relationships in your loved one`s social network.
  • These could be friends, family members, neighbors, ministers, or other members of your loved one`s religious or social affiliations.
  • Identify these persons early, ask for help, and engage them in the planning process.
  • Exchange contact information and communicate regularly.
    • Use these allies as your eyes and ears to get objective view points on your loved one`s health and safety.
    • Use them as your arms, hands, legs, and feet and voice for providing support in your absence

Other Family Members

  • Perhaps a sibling or other family member whom you believe has a responsibility to help is not doing so.
  • Ask him/her to help! But, do it tactfully.
  • Stay away from statements that typically begin with “you?? and sound like you are accusing someone of doing something wrong.
    • “You are not being responsible!”
    • “You obviously don`t care about me or our parents!??
  • Use “I?? statements that are your own thoughts, opinions, and emotions and communicate them calmly:
    • “I cannot manage this alone.??
    • “I feel overwhelmed.??
    • “I am concerned that Mom`s care requires more than I can provide myself.??
    • “I feel that the responsibility for Mom`s care has been left to me and I don`t think that`s fair to either one of us.??
    • “I do not mean to complain or criticize, and I very much appreciate you listening to me.??
    • “I would like to let you know what I have found out about what Dad needs and what we can do about it so far???
    • “I need you to call Dad at least once a month to help me out.??
    • “When are you able to come see about Mom and do some things around the house???

Taking Care of Yourself!

  • Learn! The more you know, the more you get from your efforts, the better you feel about yourself!
  • Grow! Respect your own limitations and abilities, develop boundaries around them, enjoy successes within them!
  • Give freely, respectfully, and lovingly, without giving yourself away!
  • Rest! You`re not a super hero, so get some rest!
  • Recreate! Physical exertion as well as mindless activities have their place and healing qualities!
  • Laugh! Research has shown that even the anticipation of laughing positively stimulates body chemistry!
  • Love! Spend time with people who energize you mentally, emotionally, and spiritually. Limit relationships that drain you! · Let go of regrets, guilt, and perfectionism.
  • Make a commitment to yourself to take your own advice and take care of you!
    • If you do, you will take better care of your loved ones.