Preparing Yourself to Become a Parents' Caregiver

There is an element of fear associated with taking care of ill or frail parents, and one of our reactions to fear is avoidance. Thus, as sensible as it is to equip yourself with the needed information, most of us will not do it. If you have lots of free time, live close to your parents, and have plenty of money, then preparation may not matter as much. However, older adults are more likely to be financially secure than you are, and I know no one who thinks they have spare time. And 20 percent of American move every year. Relatively few of us live in the same area as our parents.

Your tasks can broadly be divided into becoming familiar with your parents' personal situation as well as learning about resources available in their community. If you do this when they are still in good health and spirits, you can make it a family project of sorts. If you are doing it without their assistance, such as after they've become ill, it's harder, but not impossible.

Doing it Together

Let your parents know that you want to discuss some family business matters and learn their opinions about some things so that you will be in a position to help them as they have helped you through the years. If they regard this as unnecessary, assure them that you know it may be needless for them, but that it will make you feel a lot better. It's okay to come right out and say that you realize you may be confronted with a caregiving or a special assist role at a younger age than most adults, and you want to feel prepared to handle the situation.

If they still refuse to discuss family business or preferences, then you may be on your own. Don't push it. There is always the chance that your questions may cause them to reflect on the possibilities, perhaps even discuss them with some of their friends. They may decide to discuss these issues later. They may not.

Some topics may make it sound as if you are trying to get a handle on their financial assets. Tell them up front it's not necessary to talk about that, or to tell you account numbers. You just need to know where to find the information should you have to take some action on their behalf. Topics to discuss include:

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Doctors' names and phone numbers
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Medical insurance and hospital preference
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Medical history and medicines taken
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Social Security number
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Military service records, if applicable
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Insurance policies--car, house, life, personal property, disability
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Phone numbers for relatives and favorite friends
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Neighbors' phone numbers
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Contacts at their offices or senior citizens center
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Bank accounts
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Mutual funds and other investments
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Retirement or annuity arrangements
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Mortgages or other major financial obligations
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Lawyer and accountant's phone numbers
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Living will (states their preferences about life support and related issues)
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Will and living trusts

If your parents will discuss these topics, take notes and keep the information in one place. In this computer age, you can even update it regularly and email yourself the material so that you can store it on line and have access to it if you are traveling.

You will need to involve not just your parents, but other family members, such as brothers and sisters and perhaps one of your parents' siblings or cousins. It is natural for one person to play a more active role, especially if that person is the oldest, is emotionally close to a parent, or lives nearby. If there are many potential participants, pick a time when all can join the discussion, in person or via phone. Once the time is set, stick with it, even if some people cancel. There will never be a perfect time for everyone, and you need to keep moving. Your goal is to create a network of caregivers. You or someone else may be the focal point, but it has to be a team effort.

Looking in the Broader Community

Not all information or assistance can be generated from within the family, and there is not one place to secure community resource material. Take the time to gather the material before you need it. When you want to know about an adult day care center for a parent with Alzheimer's or wheelchair transportation while your sports-minded mother recovers from her ski injury, you want to know now. The people you call will have 20 other things to do that day, and your needs cannot be at the top of their list.

The key is LIBRARY. The reference section in your parents' town's library will have community directories and bulletin boards may have information. Kinds of things to research in the library:

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Referral networks for services for senior citizens
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Assisted transportation services
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Home health care agencies
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Friendly visitor programs
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Meals on wheels
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Shopping assistance
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Senior citizen community centers
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Local nursing home reputations

Every state has a Department on Aging (or something with a similar name), as required by the Older Americans Act. Most counties and many larger cities also have a similar office, perhaps called a Division of Elder Affairs. These organizations are in the government listings of local phone books, and they have information on services throughout the state or locality. (Also check the yellow pages under such categories as "Senior Citizens' Services" or "Elder Care.")

There are also community support groups, generally operated by their members or perhaps through a local hospital or church. Most community newspapers list them weekly or monthly. If you live out of the area, call the local paper and ask when they publish the listing and then order a recent issue by mail.

There are national organizations for everything--the American Lung Association, the National Multiple Sclerosis (MS) Society, the American Heart Association, the Alzheimer's Association, and many more. Some offer support groups geared to families of the ill or physically challenged parent. The MS Society has groups for children of recently diagnosed parents and regularly meeting groups for teens or spouses. Call the national office for local chapters for any of these organization.

The MS Society provided only limited services through its D.C. area chapter when my mother first contracted MS and my siblings and I were young. I almost drool at the services available today. When my sister and I were in our late 20s and early 30s we did volunteer fundraising with the D.C. chapter. It was good fun for a good cause, and we met several other young adults whose parents had MS. I also learned how to inflate helium balloons, a skill that has served me well through the years.

Listen and Ask

Keep your ears open when you are around your parents or grandparents or other older adults. They know a lot, and could be willing to share. Maybe someone at your school, office or church has dealt with local or long-distance care giving. If you are truly fortunate, your firm will have resources on elder care assistance. More multi-location companies provide this as part of their Employee Assistance Program these days, since they want their employees to be able to deal effectively with these issues and still be efficient at work.

ASK FOR HELP

Even as you get older, you may need more help than others perceive. If you seem self-assured about your responsibilities or are generally considered unflappable, people may not realize you are afraid. My family and I surprised mom with a trip to Europe, and planned extensively. I was 25 and the only one traveling with her. A few days before we left, I was suddenly terrified about what would happen if she became seriously ill or died during the trip. I tried to talk to several people about the fears. Everyone breezily said, one way or another, "You'll do fine." Nice to have their confidence, but it did not help at all. I never did find anyone to talk to, and things did work out OK. Except the time when I forgot to put her wheelchair on lock in the bath of the small hotel room in Paris. Luckily, no bones broke and she was able to joke about it.

The most important message you can take away from this article is that no matter how you prepare yourself, accidents or unexpected events can happen and it is okay to seek assistance. In times of crisis, help often presents itself. If it does not, ask someone. That does not mean you have to lean on your friends. There are many organizations that provide ongoing support to family caregivers. Your best preparation may be to join one to learn more about what you do not yet know.

You can start your search for a caregiver group with the National Family Caregivers Association at http://www.thefamilycaregiver.org.