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.
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.
Moving to a Long-Term Care Facility
When Your Older Family Member Has Alzheimer's or Dementia
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.
|Find Your Area Agency on Aging|
|Find Area Agencies on Aging in NC|
|Caregiver Specialists in NC|
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.
Other helpful resources related to communication and children/parent relationships and how to handle tough communication barriers:
Handbook for Long-Distance Caregivers
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.
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.
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
- 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.
"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.
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.
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.|
As a long-distance caregiver, you may decide that having your family member move to your city would be the most logical decision. Just making that decision, independent of all other considerations, was probably a difficult one. Now, you need to get the agreement of your older family member, who may be resistant, and figure out how to make it all happen. It can seem overwhelming.
The best way to start is to break it down into manageable parts.
- First, have the discussion with your own family and come to an agreement. Discuss what it would mean for your family. Consider finances and the individual responsibilities of various family members. Will the family member continue to drive, shop, garden, pay bills, etc.? Will they move in with you, get an apartment, move to a Continuing Care Retirement Community or assisted living facility?
- Second, have the discussion with the older family member. Remember that older adults in this situation may be resistant to leaving their friends and church family. They may also see such a move as the beginning of a decline in their independence or a first step toward long-term care in a facility.
- Third, look at the financial aspects - both yours and the older family member. Would finances be co-mingled? What are the tax implications? What are the legal implications? How would this impact the independence of the older family member? Would they want you to know their financial situation?
- Fourth, explore what resources and services are available in the new city. Are they comparable to the current location? Services may not be needed at the time of a move but they may be important later.
- Fifth, look at how to make it happen. Who will sell the existing home? Is there a lease? Who will oversee the move? Who will arrange for housing in the new city?
These are just a few of the areas that would need to be addressed before a big move. There is help available.
|Caregiver Specialists are well versed in what is involved before, during, and after such a move. Consulting with a Caregiver Specialist first would be a good strategy. Remember, their services are free. It might be helpful to talk to a specialist in both your city and the city in which you aging family member lives.|
There are also Care Management professionals available to walk you through every step of the process, for a fee.
Often downsizing is a very traumatic event for an older person. They equate memories with their lifetime of possessions. Not keeping an item may be like throwing away a piece of their life. And downsizing often represents to them their decline in functioning and a decline in their level of independence and ability to live successfully on their own and as the head of their family line (even if this is only symbolic). A trained professional Caregiver Specialist or Care Manager can help them sort through these feelings and help them make decisions that will serve them well. They can also get your family member connected to local mental health support, if needed.
In your area, you may have for-profit services that will come in and help your older family member downsize, pack, and move. These services are now sometimes associated with real estate firms. They will help their client pick and choose what is to be moved, donate the excess items to charity, arrange for the household items to be packed and moved to the new location, and will - if the move is within their travel range - come in and help the client get moved in and unpack. All this is done, of course, for a fee. If this is an option for you and you'd like to find out more, contact the local real estate association and/0r check in the yellow pages for movers who cater to seniors.
|Caregiver Specialists in NC|
|Find Your Area Agency on Aging|
|Find Area Agencies on Aging in NC|
|What is a Care Manager?|
At some point, most long-distance caregivers caring for aging parents consider whether or not to move in together. There are even more things to consider before making such a big adjustment to two families.
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. These type discounts may vary from place to place and time to time. Always ask.