Your mom or dad has been diagnosed with Alzheimer's disease. While your first feeling may be worry, you can get support to help you guide your parent’s care and manage costs. That way you can make the most of your time together.
Several local, national, and online resources can help you find care for your parent, along with discounts, delivered meals, and legal or financial tips. Here are some leads on how to get started.
Create a Plan
Your first step is to draw up a plan for your parent’s future care, says Ruth Drew, director of Family and Information Services for the Alzheimer’s Association. Talk to a social worker trained in Alzheimer’s care or to a support group to help you make a checklist, she says. You can contact a social worker at your local hospital, community center, nursing home, or assisted living center.
“You need to address now your plan for down the road,” Drew says. Your plan may change as your parent’s health or needs change, she says. Most importantly, “involve the person with the disease in these conversations. Understand their wants and choices, and incorporate these into your plan.”
Your plan might include:
- Day care, long-term care, or home health care
- Assisted living or memory care housing
- A financial plan to cover costs
- Power of attorney and living will documents
- End-of-life care decisions
- Which family members will help with care
Different types of care can vary greatly in cost. Your choices may be limited by your financial resources, and insurance might not cover some choices. You'll simply do the best you can to honor your parent's wishes. Some things might not be possible because of financial constraints. See more tips on how to cover costs below.
Tap into a local support group of other caregivers of parents with Alzheimer’s disease or dementia, says Shelly Eisenstadt, a licensed clinical social worker at the William Breman Jewish Home in Atlanta. Your parent’s doctor or social worker, a local senior center, or the Alzheimer’s Association can refer you to groups in your community.
You'll be able to meet people who are going through situations very similar to yours. Many support groups are led by a social worker or therapist trained in Alzheimer’s care. This professional can help you understand your parent’s symptoms. “Remember, every person’s story is unique,” Eisenstadt says.
If you have siblings and you're sharing caregiving duties or costs, make choices as a team to avoid conflicts that stress you out, she says. “Alzheimer’s is a family disease, even though it affects only one person. It affects everybody.”
The Alzheimer’s Association has a 24-hour telephone help line, online caregiver’s tools, and local support groups of other caregivers. Find information on their web site, or call (800) 272-3900.
Keep Track of Symptoms
When it comes to helping manage your parent's medical care, it can help to keep a record. Write down any problems so you can bring these up at doctor’s appointments, Eisenstadt says. Your parent’s memory, communication skills, or ability to do everyday tasks may slowly get worse.
“Caregivers may have a lot of denial about their parents’ symptoms. If you look at facts written in a journal, you can see how things are changing,” she says.
Alzheimer’s disease may last for as long as 20 years, Drew says.
How to Deal With Costs
Care can involve taking time off from your job or traveling to help your parent. Medical care, home-health care, assisted living: Long-term costs can add up. But they can be managed. Here’s how:
Insurance and benefits. Find out what insurance coverage, Social Security, or retiree benefits your parent has that might help pay for care. If your parent is in the disease’s early stages and they want to keep working for now, find out what company benefits are available to help cover drug costs, medical appointments, or sick leave.
Personal assets. Your parent may be able to tap into savings, a pension, or their home equity to help cover long-term care costs. A reverse mortgage provides cash in exchange for property equity, but it allows your parent to keep living in their home. Find out what other assets may provide income or cash.
Government programs. Medicare, Medicaid, Social Security, veterans’ benefits, and other government programs may help pay for the care of a parent with Alzheimer’s disease. The Family Medical and Leave Act also allows you to take up to 12 weeks of unpaid, job-protected leave from your job to care for your parent. You'll be able to keep your job’s insurance coverage while you're gone.
Tax deductions. If your parent’s total income was less than $3,950 in 2014, you may be able to claim them as a dependent on your tax return. You may also be able to deduct costs for your travel to care for your parent, or out-of-pocket health-care costs from your tax return. Consider asking an accountant to find all your deductions and options.
Meals on Wheels
Your parent might not be ready to leave their home yet, but they need a little help. If your mom or dad lives alone, cooking meals can be hard or unsafe, Eisenstadt says. Find programs in your area that deliver prepared meals to your their home on the Meals on Wheels Association of America web site.