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How to Manage Your Caregiving Responsibilities

Elinor Ginzler answers caregivers' questions

If you missed our live online chat with Elinor Ginzler, former AARP vice president for health and current senior director for supportive services at the Jewish Council for the Aging in Rockville, Md., read the below transcript of the conversation.

See also: 9 secrets of caregiving.

Comment From Marisol: Who can I turn to to help me sort out the interconnected financial and medical decisions I need to make to care for my infirm mother — decisions that also require a keen understanding of government programs (Social Security, Medicaid, Medicare and Disability)? Do I need a financial adviser, elder attorney AND a geriatric care manager?

Elinor Ginzler: You are so right to describe these decisions as "interconnected." They really are — you might not need all the professions you mention — the most important thing is to find an elder care professional that you can relate to and that you trust. The bar association for your area can provide names of attorneys who specialize in elder care law. Geriatric care managers are often a good place to start — check with the National Association of Geriatric Care Managers to find one near you. They not only understand aging issues, they also often have good contacts with other professionals.

Comment From Terrie: I am absolutely baffled on how to deal with my husband's wandering. He suffered a brain injury, but is physically fit. When he starts to wander, no amount of cajoling, distraction, logic or authoritative approach work. Last night, I found him walking at 4:30 a.m., barefoot and shirtless in the rain on a major road. I am concerned for his safety, and that of motorists. PLEASE HELP.

Elinor Ginzler: You are certainly dealing with a very difficult situation — how scary it must be for you when he wanders. If this only happens at night, consider talking to physicians about some medication to help him sleep and keep him safe. If locking doors does not work at your home — it might be time to consider alternative living arrangements. You cannot stay awake and alert 24 hours a day — other living arrangements (such as an assisted living residence) have an array of staff on duty to cover all the hours of the day AND NIGHT.

Comment From Sharon: My mother has given me medical power of attorney. My question is: Does this also cover situations such as deciding to move my mom closer to where I live so that I can check on her every day if she were to be in a hospital or a nursing home? What if she needed around-the-clock home care? Does medical power of attorney cover that?

Elinor Ginzler: Medical power of attorney appoints you to make medical decisions for your mother, should she become unable to make or communicate medical decisions for herself. Medical care usually refers to treatment by physicians and other medical professionals — often in the hospital setting.

If she is still able to talk reasonably now, this is the time for you to talk with her about what kind of care she wants and what living situations she would be interested in should she need help in the future. The more you talk together before a crisis, the better off you will be if there is a crisis.

Comment From Donna Jones: Does Medicare provide any monetary assistance for assisted living or memory-assisted places?

Elinor Ginzler: What a great question, Donna. It is so important to understand that Medicare does NOT cover assisted living residences of any kind. It only covers short-term stays in nursing homes after being in the hospital. Many folks don't know this.

Comment From Angela: Can I get paid for caring for a parent? I worked in CNA dementia care for five years, been retired two years.

Elinor Ginzler: It is unlikely that you can get paid, but there are a couple of possibilities. If your parent has long-term care insurance, the policy might cover paying family. For more information, check out our article, "Can I Get Paid as a Caregiver?"

Comment From Joanne: Elderly people can be very stubborn. How do you deal with a person who won't cooperate when I'm trying to do what's best?

Elinor Ginzler: Let's face it — all of us can be stubborn. And it is hard sometimes to figure out the best way to work with an aging family member. Think about if there is someone who's best suited for taking on this conversation. And as the saying goes, if at first you don't succeed, try, try again. You might also find this article helpful on the "Six Ways to Work on Someone's Denial."

Comment From Maryanna Olds: What is the best way to help my 81-year-old mother, who is caring for my dad, who is in a rehab facility and is dying of lung cancer? They live two hours away and I work a full-time job.

Elinor Ginzler: First, my heart goes out to you and your family. You sure have your hands full. Here are several ideas.

First, make sure your employer knows about your situation and that you know about any benefits and policies that might help you. Check out our article on "Balancing Work and Caregiving."

And one more idea — while you can't be there every day, you can still help. Tell your mom that you can make all the phone calls and handle lots of the paperwork. Those are things that don't need you there in person. And when you do go to visit, ask your mom what she'd like you to do. It could be take care of your dad or it could be take her to lunch.

Comment From Barbara: Is there a website where I can print out a medical power of attorney for California?

Elinor Ginzler: Thanks for asking, Barbara. Here's a link for a set of state-by-state forms. It's a great idea for all of us — no matter what our age — to complete a medical power of attorney and to have it just in case.

Comment From John Quinn: My mother was an army nurse in the '50s. Does the VA take care of dementia vets?

Elinor Ginzler: VA offers some really good benefits. For example, at Jewish Council for the Aging's day center, we have several veterans who attend our center for stimulation and support while they deal with their dementia, and VA pays. Check with your local VA to find out what's available in your community.

Comment From Rosemary: I have been advised by a social worker to get a power of attorney for my parents. Are the forms on line reputable or is it better to see a lawyer? I have read that hospitals also have these forms.

Elinor Ginzler: It sounds like your social worker is asking you to plan ahead. What a great idea. Please know there are two kinds of powers of attorney. One related to medical decision-making and one for financial issues. Both have your family member identifying an agent (you) to act on their behalf.

Go here for the health care power of attorney.

For other information on legal and financial matters, check out our resources.

Comment From Margaret: How do I get a durable power of attorney. My husband is no longer able to sign his name.

Elinor Ginzler: Margaret, I'm sorry to say, it's probably too late. Powers of attorney can only be created if the person is still capable of making decisions. In the worst case scenario you might have to pursue guardianship. If so, you'll need a lawyer. Best of luck.

Comment From Valerian: I became my mother's caregiver 14 years ago. My mom was diagnosed with dementia two years ago. None of her other adult children have ever helped my mom. Now my health is failing and I am worried about my mom's welfare if I am no longer able to care for her. I am at my wit's end because I chose not to have a life after I became my mother's caregiver. I am here for my mother 24/7. She refuses all medical help and I am not ready to open my home to outside caregivers. Mom is almost 80. I suggested adult centers for a two- to four-hour break but she stubbornly refused to go. Support groups help sometimes, but it is hard for me to share every thought or feeling with a group or social worker. Besides taking a six-month vacation on Maui — ALONE — could you give me some realistic suggestions? I currently can't afford Maui for even a week. Thank you very much

Elinor Ginzler: Valerian, it sounds like you are dealing with an awful lot. I'm not sure if you can be there for your mother 24/7. Does she have other friends who might be able to help? And perhaps, she needs a professional to let her know she needs to accept some help.

Try talking to the doctor and think about using a geriatric care manager to engage with her.

Comment From Valerian: No. We moved out of state and it's just the two of us.

Elinor Ginzler: The elder care locator can help you find the aging office in your community. They will know about caregiver support programs in your community.

Comment From Amy Winter: My sister has had a series of health issues over a period of 10 years. First, a back operation, then fourth-stage breast cancer, for which she had two surgeries (because of being sent first to a general surgeon vs. oncological). Then she had further back problems and could not walk without pain, and dental problems — very painful due to mistreatment. All now resolved but she has been very upset and angry throughout and seems unable to let of the anger and, at times, hysteria. It has taken its toll on me and I have "cracked" a number of times. We don't live together, but I have been commuting at great expense from New York to Arizona. Compounding this, she married someone from Canada and because of economic circumstances she has had to commute back and forth, which causes further stress and pain. I'm thinking I need a support group; and she needs some post-traumatic stress and anger therapy. Can you comment? Many thanks.

Elinor Ginzler: You certainly are dealing with a lot right now. A support group would be a great idea. And if you can't get to one in person, AARP has an online support group for you. You will find that it is amazing to share with others and get support from folks who know what you're going through.

Comment From Michele: Is there any help available (Medicare, etc.) to help pay for home care? I have been caring for my mother, but now need to go back to work to earn some money. She does not have long-term care insurance.

Elinor Ginzler: Michelle, here is a helpful website to find out what benefits your mother might be eligible for. It might be home care or other community programs. Here is our Benefits QuickLINK.

Comment From Adrienne Gruberg: What language can I use to get a parent to realize that having their child as a cosigner on bank accounts is to their benefit. It's a control issue, but it's just for emergencies.

Elinor Ginzler: Adrienne, I'm so glad you recognize that it is very hard for older parents to share financial information with their adult children. If your parent is not comfortable with you on the account, there are other steps you can take. We have lots of information on working with families on financial matters. Here's one article, but you'll find many more on our site.

Comment From Guest: My husband is an only child, and we live on the East Coast. His aging parents are on the West Coast. We would like to move them in with us, but people are telling us that it would be too shocking for them. As it is, they are 92 and 93 and are quite feeble. How do I get them to agree to make the move, and is it wise?

Elinor Ginzler: I think we would all agree that moving is a big deal, even when it's the right thing to do. It's a really good idea to think this through and talk it through thoroughly before acting. You need to understand their situation to determine the best options. Start by assessing the situation and by talking with them lots. Check out this article on "How to Assess Your Loved One's Situation."

There's no one right or wrong answer. The better you understand the situation, the better everyone will be.

Comment From Patricia: Does Medicare offer help for assisted living payments?

Elinor Ginzler: Patricia, Many people believe that Medicare will cover assisted living. Unfortunately, that's not true — 80 percent of assisted living is paid for privately. In some states, some people on Medicaid might be able to use their Medicaid benefits to cover assisted living. Medicare is not a coverage option for assisted living.

Comment From Marta E. Bayer: I will like to be a caregiver/companion in home, and assist with their daily living activities. I need a part-time job (10 hours a week). What do I do?

Elinor Ginzler: Marta, it is a great job, and very rewarding. To give yourself a good set of skills, check out your local community college — many offer programs that teach people how to be in-home aides and provide a certificate when you complete the courses. Good luck!

Comment From Guest: My husband is 59 1/2 and has a herniated disk. The spine doctor says it will be a minimum of a year before he can go back to his work, if ever. He is willing to recommend my husband for disability, but when I go on to the Internet to research, it appears to be very complicated. Is there a resource to help us? We do not have money for a lawyer.

Elinor Ginzler: You should not need an attorney to apply for disability. You will need cooperation and documentation from your husband's doctors. Check out benefits check-up for information on filing for disability and other benefits that might help you out.

Comment From Marie Mokarry: I've been caregiving for four years, since my husband had three subdural hematomas and a seizure. He can take care of himself but cannot be left alone overnight. He doesn't like to do much except watch TV. I'm responsible for his meals, pills, transport to doctors, security, etc. No children. Married 25 years. Very depressed about the rest of my life. Any suggestions.

Elinor Ginzler: Marie, it sounds like both you and your husband would benefit from finding an adult day center in your community. Medical adult day centers provide health management and social stimulation in a supportive environment. You get a break and he gets a day of more than just TV.

Many thanks to all of you for joining me today.

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