Caring for a family member or friend with Alzheimer's disease isn't exactly easy or fun. And when you live across the country, or even just across a state line, the distance adds an extra set of challenges.
According to the National Alliance for Caregiving and the Alzheimer’s Association, about 12 % of all caregivers live over an hour away. Their out-of-pocket expenses related to care are much higher than those of caregivers who live nearby.
With careful planning, and the help of technology, you can stay connected and feel a sense of control over your loved one's day-to-day care.
One of the most important responsibilities a long-distance caregiver can take on -- besides the financial help -- is coordinating all the medical information, insurance claims, and legal documents.
Set up online payments to take care of your loved one's bills. Make sure a living will, health-care proxy, and power of attorney are in place. Keep on top of Medicaid, Medicare, or private insurance claims. If they have a long-term health care insurance plan, look into filing a claim for home health care or a skilled nursing facility.
Reassess Needs Often
Since Alzheimer's is a progressive disease, your loved one's condition and care will likely change over time. Try to schedule visits every few weeks or months, and be on the lookout for any cognitive changes.
In the early, milder stages, they may be able to live on their own, while you can provide social support and help getting questions answered about insurance and doctor's visits. As the disease progresses, they may need a hand with driving, paying bills, and other activities of daily life. Eventually, you may need to hire a full-time in-home aide or consider moving them into assisted living or a nursing home.
When you visit, think about these kinds of things to help you gauge how much care they need:
- Is there food in the refrigerator? Is it spoiled?
- Are unopened bills piling up?
- Are they bathing, grooming, and dressing properly?
- Do they get lost while driving or walking outside of their home?
If they're still living at home rather than in assisted care, use one of your visits to check for possible trouble spots in the house. Remove tripping hazards, such as throw rugs and extension cords. Consider installing ramps or chair lifts, if getting around is hard.
Because clutter can be disorienting to someone with cognitive issues, clear away piles of junk, papers, and knicknacks. One simple photo album with pictures of family members can help bring a smile every day.
Check in Regularly
Since you can't be there on a daily basis to help your loved one prepare meals, remember to take medications, dress, and bathe, the next best thing is to hire a local caregiver whom you trust. Go to the Caregiver Center on ALZ.org to find links to home health-care agencies, or check out the Department of Health and Human Services eldercare locator at www.eldercare.gov.
Keep in regular contact with the caregiver to talk about any changes or challenges. Ask a neighbor or nearby friend to drop by often and give you an honest report of the quality of the care, too.
Get in the Medical Loop
Have your loved one give you written permission for their doctors to share medical information with you. Introduce yourself to their primary-care doctor and neurologist. Write down the specific medications and doses they're taking, and look into their side effects. Read up on Alzheimer's and its treatments.
Use Tech to Stay in Touch
With the help of a tech-savvy local caregiver or friend, you can get your loved one set up to video chat using software like FaceTime or Skype. As the disease progresses and their memory recedes, be prepared for them to need reminders about where you're calling from and who members of your family are.
Enjoy Your Time Together
Whether you're able to visit once every few weeks or only every few months, you may feel pressure to get everything done that day: shopping, doctor's visits, home repairs. Yes, that business is important, but you being there is also a chance to connect.
Plan out your visit beforehand, so you can take care of pressing issues, and also build in time to enjoy each other's company. Depending on your loved one's stage of dementia, they might enjoy watching a movie together, going for a walk, playing a card game, or listening to favorite music.