Long-Distance Caregiving

 

Caregiving isn't easy even under the best of circumstances. But when you are trying to help and you don't live nearby, it can be even more difficult.

 

 

Alzheimer's & Dementia Long-Distance Caregiving

When you are caregiving for a family member who has Alzheimer's or dementia, decisions and providing care become even more difficult. Safety becomes a key issue. If you have hired assistance, what do you do if they have an emergency and cannot provide the service - even on a temporary basis? And, this becomes a time when the more difficult decisions must be made.

We hope that you will use the resources available on this website to help you make the difficult decisions that must be made such as whether your family member should be moved to a long-term care facility. Additionally, pre-planning for the future becomes an important part of the decision making process. Living wills and other important legal documents should be considered.

 

And finally, don't think twice about utilizing the skills and expertise of local caregiver specialists and information and assistance professionals. These professionals know what services are available locally and how to access them. They are also able to help you understand the decisions that should be made and what to consider as you make them, including the feelings and wishes of your family member needing care.

 

 

Care Managers

Care Managers are another available option. They provide professional assistance for older adults with complex care needs and/or their families in accessing, arranging and coordinating the package of services needed to enable the older adult to remain at home. If institutional care becomes necessary, they can help locate an appropriate facility and help to get your family member the care they need.

 

 

Communication

At some point, most long-distance caregivers caring for aging parents consider whether or not to move in together. There are things to consider before making such a big adjustment to two families.

 

Other helpful resources related to communication and children/parent relationships and how to handle tough communication barriers:

 

 

Family Decision Making - Do We Really Need A Meeting?

A family meeting is chance for everyone, including a person with a memory disorder, to express concerns and acknowledge different perceptions. Although face-to-face meetings are preferable, don't delay if everyone can set aside time for a conference call or even an e-mail chat. Be inclusive of all concerned, including non-local family members, children and teens who may be affected by decisions about elder care.

Pick a place where everyone is most comfortable. It could be the elder's home, a restaurant, or a hospital waiting room if it is an emergency. If the family is stuck in a disagreement, consider an outside facilitator, professional or expert.

Clarify purpose and priorities: housing, medical care, safety, driving. Before the meeting, gather information on these areas.

Establish that "best care for Mom" is the focus, not long-standing family feuds. Brainstorm, allowing each family member an opportunity to be heard and submit an idea without criticism.

Develop an action plan - what will be done first, second and third and ask for volunteers before divvying up responsibilities. Agree to follow-up by phone or email and acknowledge all contributions and good intentions.

*courtesy of the Duke Family Support Program.

 

 

Family & Medical Leave Act

Should you need to take time off from work to care for a family member, the Family and Medical Leave Act might be of use. You may be eligible for up to twelve weeks of unpaid, job-protected leave.

 

 

Get Connected to Local Services

There are several ways to get connected to local services in the area where your family member needing support lives.

Contact the state agency on aging of the state where your older family member lives or the Area Agency on Aging that serves the area of the state in which he or she lives. We have compiled state specific links in the following categories as well.

• caregiver information
• long-term care ombudsmen
• elder abuse
• health insurance information
• pharmacy assistance
• medicaid
• medicare
• hospice
• state government
• information & referral
• tax assistance
• Veteran's affairs
• Alzheimer's resources
• disability resources
• assistive technology

 

Another option is to contact the Eldercare Locator at 1-800-677-1116 to get contact information on a local agency or area agency providing services in the area in which your older family member lives.

 

 

How to Make Tough Care Decisions

"She says she is "fine" and doesn't need any help, but she doesn't understand or remember all we do for her. She says "we don't need to bring strangers into our home - we have daughters." But how long can I spend 5 hours each day at her house?"

• Should I make her see a doctor?

• Should I start looking for home care or day programs?

• Should I stop her driving or take over the checkbook?

• Is it time to consider another living arrangement?

How do you make tough decisions when money is short, there are few affordable quality service choices, no time to look and she "doesn't want or need help"?

Ask: Is it my decision to make? If she is able or if she has a husband, you may feel responsible without the power to decide. Consider labeling it "your" need for help or reassurance rather than "her inability to do it herself."   Dare to think the unthinkable. What would happen if your health takes a tumble? Change would be forced on you, and you would decide in a crisis. Look now while you still have control. Listen to those who care about you. If they think you need help, take them seriously. Move from "if" I need help to "how do I start?"   Decide when to start. If you can't imagine keeping up this pace for 6 more months, start looking now.   Choose one issue. Choose one need that, if met, will leverage other benefits. Don't be paralyzed by the magnitude of the task.   Experiment. You don't know whether a care option will work until you try it. Experiment until you find a good fit. Offer your mother a few beauty shop visit coupons for a "Mother's Day" gift, rather than "because her hair is dirty."   Take one trial at a time. Ask your dad to go with you for a visit to the day center rather than asking him to buy into a program.   Call in the allies. If your relative resists, ask for help from someone she respects. Don't focus on her dependency, limits or needs but on the benefits to her.   Make a friend of crisis. You may have to wait for a crisis, but prepare for the inevitable by considering a "Plan B". Check out services now.   Talk with a professional. Talk to a care manager or caregiver specialist who can help you clarify your thinking.   Remember.

 

Care decisions involve choices among imperfect options. Just do your best for your relative and yourself, and you will have acted responsibly.

*courtesy of the Duke Family Support Program.

 

 

National Institute on Aging

So Far Away: Twenty Questions for Long-Distance Caregivers focuses on some of the issues unique to long-distance caregiving. "Developed by the National Institute on Aging, part of the National Institutes of Health, this booklet is a gateway to ideas and resources that can help make long-distance caregiving more manageable and satisfying." It is in a question and answer format and is available online, though print copies may be ordered.

 

 

Travel Costs

Many travel related agencies and groups will discount travel expenses for trips to visit an ill relative or to attend the funeral of a relative. These discounts are known as bereavement fares and/or discounts.

 

 

 

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