Where to Begin?
It's time to start thinking of yourself as a caregiver when the following types of events occur:
- A major health problem, or a collection of smaller ones, is starting to cramp your mother's style.
- Financial problems (overdrawn checks, unpaid bills, huge credit balances) start cropping up.
- Grandpa doesn't get out as much as he used to and seems less interested in what's going on around him.
- Home maintenance is slipping: things that break around your parent's house are not repaired.
- Your parent's, lawn or garden, once meticulous, becomes overgrown.
- Dad's refrigerator is poorly stocked, or food that is past its prime still hangs around.
- Your grandfather just passed away, and your grandmother is living alone for the first time in forty years.
- Your father doesn't dress as spiffily as he once did and has stopped shaving and doing other personal care rituals.
- Mom has a fender bender at the mall for the second time this year.
- Dad seems distracted or forgetful when you speak to him on the phone.
- You've figured out that helping the older adult in your life now, even when there are no clear problems, might help prevent trouble later.
Get online if you're not there already. There is a wealth of helpful information for older adults and caregivers on the Internet. If you can introduce your parents to the Internet, that's great. If you can't, let them watch as you surf, just so they can get a feel for the help that's out there. If you're not computer literate or you don't own a computer, go to the library and arrange to take lessons if you can -- most public libraries offer Internet access these days. Don't cut yourself off from the world of help that's out there for you. Don't storm the gates at the first sign of trouble. If you feel you should get more involved in your mother's life, do it as gradually and respectfully as possible. Remember that if you're really trying to help, you'll do a lot better if you don't alienate or overwhelm her.
"It took me a while to realize that my parents needed help. I was so close to the situation and it happened so gradually that I didn't catch on -- or maybe I didn't want to catch on and admit that they were in trouble, because it was painful to see. Anyway, my best friend came with me to visit them one afternoon. Since she was more removed and not personally involved, she could see what was going on more clearly, and she opened my eyes to the fact that I needed to take some action."
Define your responsibilities as a caregiver. Make a list. Set up guidelines for what you will and won't do. Put it in writing and stick to it. If other family members can't help, make a decision to hire someone to perform the duties you can't or would rather not handle.
Make sure your parent joins AARP (formerly the American Association of Retired Persons). Anyone age 50 and older is eligible. Members get tons of discounts on everything from prescriptions to travel, plus a subscription to the AARP magazine Modern Maturity.
Although many programs for older adults are federally funded, the best way to contact them is through your local Area Agency on Aging. There is one in your community, even if you're not aware of it. These offices will connect you with a host of services for older adults in your area, including transportation, day care and respite care programs, residences, meal delivery, home care, legal assistance, and just about anything else you can think of (and plenty that you haven't!).
Get your father hooked into the local senior center. These centers provide transportation services, classes, information, recreation, and the chance to make new friends. Offer to go with him the first few times to help put him at ease. It's not all-or-nothing. Even if you are not making regular use of the local senior center, people there are still available to answer questions or provide resources. And if your dad only wants to visit the center occasionally, even if it's just for lunch, you're still welcome there.
If your mother is too young (or young at heart) to feel that she needs a senior center's services, a senior center would probably love her help as a volunteer. That way she'll already have a connection to the center further along the line when she starts to need help.
Introduce all new changes in your parents' lives as positives: "Now you won't have to worry about weeding the garden" or "You'll be able to get so much more done now that Jenny is taking care of the cooking."
Don't order; instead, ask. Bad idea: "The house is a wreck! I'm coming over tomorrow to set things straight!" Better idea: "It seems like one or two things need fixing. Would tomorrow be a good time for me to come over and help you take care of them?"
Whenever considering any programs, groups, or services for your mother, check them out on your own first. If a particular place or service doesn't seem right for Mom, you can avoid having one bad experience turn her off.
Make contact with a competent geriatric caseworker. You can contact such professionals through local senior centers or your doctor. Geriatric caseworkers are specially trained to deal with everything from financial and insurance issues to home health care, day care facilities, and volunteer groups that can help you. They're also able to evaluate what your parent's specific needs are. A geriatric caseworker will be an invaluable resource for you; no wonder this is one of the fastest-growing areas of social work.
Make sure your loved one is receiving all the medical and financial benefits available to him. Communicate with providers often to keep them updated and let them know that your loved one is not easy prey for the bureaucracy -- he has you on his side!
If your parent served in the military, the Department of Veterans Affairs provides a host of resources, including primary medical care, hospitalization, mental health services, home health care, and nursing home care.
Don't let yourself get overwhelmed by anything -- transportation issues, meals, even household chores -- without first checking with your local church or other religious or community groups, which often provide these services for older adults. There are good souls out there who want to help. Let them.
Know your neighborhood options: senior day programs, home health aides, assisted living, group living, senior foster care, temporary nursing home care, and so forth. Network! Network! Network!
Give yourself recognition for what you do.
"Somehow, I had lost track of how quickly time was passing. Over the years, I helped make the adjustments in their lives when they were needed -- I bought blouses with Velcro closures for Mom when her arthritis got the best of her, and I taught Dad to use the Internet so he could maintain his old interests and even develop new ones. But it wasn't until they both wound up with minor injuries after a car accident that I realized how much they relied on me. I was overwhelmed by the responsibility at first, but when I took stock of the situation and realized that I was now a caregiver -- which sounded like someone who walks around in a white uniform and squeaky shoes -- then I was able to organize the tasks and make the adjustments in my life that would be necessary for me to do the job well. None of it was easy, but now I'm proud to add 'caregiver' to all the other things I've accomplished in my life."
You can accomplish a lot over the phone -- but you have to be willing to spend half a day on hold. Be patient! The hold time might go by faster if you fortify yourself with a good book, a crossword puzzle, or some knitting.
Find out if you are eligible for any sort of free or reimbursed home (or other respite) care, whether it's a nursing service or companionship just for a few hours a week. These services must be prescribed by a doctor if they are to be reimbursed. If the doctor doesn't suggest this sort of care, don't be shy about raising the subject. He may not be aware of your loved one's day-to-day situation.
Keep everyone in the family informed as to how your loved ones are getting along. The earlier you involve family members in their care, the more involved and motivated everyone will feel. Even if it's easier for you to do something yourself than it is to suffer through phone calls with relatives you may not get along with, take the time (and patience) to make the connection. You'll need a team at some time, even if you haven't yet reached that point.
The Family and Medical Leave Act (FMLA) allows you to take an unpaid leave from your job to care for a family member in need. You must have worked at least 1,250 hours over the past twelve months to be eligible, and you may take up to twelve weeks a year.
Always have a Plan B.
Learn as you go; don't try to do everything all at once. Avoid information overload.
Take a seminar in caregiving. Such seminars are often offered through your local Red Cross or Area Agency on Aging (AAA). The National Association of Area Agencies on Aging can put you in touch with the AAA in your neighborhood (see Resources).
Getting Organized As a Caregiver
If you're generally a disorganized person, this is a good time to acquire new skills. Staying organized means keeping files for everything, including receipts, insurance company correspondence, and other useful items you'll want to have on hand for later reference.
Start with an accordion file. Dedicate yourself to maintaining it; it will make your life easier in so many ways.
Take inventory of the following documents and make a list of their locations. If most of the important documents are to be kept with your loved one, consider making copies for yourself to keep at home. Some of these items may not apply to your senior, but keep track of those that do and take care of loose ends this list may remind you of:
- Birth certificate
- Social security card
- Pension and retirement information
- Medicare card
- Health insurance policies and card(s)
- Prescription plan card
- Medical assistance card
- Disability insurance policy
- Home insurance policy
- Property deeds and titles
- Rental or mortgage agreement
- Living will or advance directives
- Health care directives
- Medical proxy
- Durable power of attorney
- Deposit (bank) book
- Safe deposit box key(s) and bank name
- Investment records (stocks, bonds, etc.)
- Car title(s) or registration(s)
- Car insurance
- Military records
- Funeral instructions
- Burial property information
Get a small notebook and use it as your caregiver diary. Keep lists of your parent's medications and their dosages. Make an entry for every health episode, describing the problem, the solution, the attending physician, and so forth. Keep this book with you always! This diary will serve as an invaluable document down the line when doctors require a complete history. (And it will save you from tearing your hair out when you are asked these questions umpteen times!)
If you are a high-tech type, the right type of cell phone can become your best friend by organizing information on all of your loved one's important documents and by holding multiple schedules at the same time. There are even applications for keeping track of medications, medical records, and so forth.
Open a FedEx account. It will save your life at least once.
Supply Mom with a nice stack of stamped, return-addressed envelopes to make correspondence easier. You can even make up some labels with the addresses of people to whom she writes frequently.
Get a big wall calendar. Make entries for everything and encourage your parent to consult it often.
Help with letter writing when your parent can't seem to keep up with correspondence.
Assist in making phone calls when letter writing is no longer possible.
Whenever you decide to organize or rearrange things, let your father know about the changes, get his input if possible, and be patient as he readjusts. A frequent complaint of older adults is that they can't find anything!
Set up a fax machine in your parent's home. A fax machine can be useful if prescriptions are lost (and you have copies) or when important papers need to be consulted.
"Mom hates anything electronic and would have held on to her rotary phone if the phone company hadn't objected. So getting her a fax machine seemed out of the question. But I had an extra one and set it up in her apartment, and you should have seen how pleased she was the first time a fax came through. It was my ten-year-old daughter's drawing of her with her grandma! She loved it, and even though she won't touch the machine (I change the paper and film when I go over there), she loves hearing it go off, because she knows she will have a special message from someone. Most important, she knows we are thinking of her throughout the day as we fax her scrawled messages, sometimes with just a big bunch of Xs for the kisses we send her daily."
Establish routines. Seniors often lose track of time, especially after taking a nap. Instituting routines will help structure the day.
Hang a large bulletin board and tack up everything from reminders and receipts to keys, eyeglasses, important phone numbers, orphaned earrings, and the like.
Keep photocopies of all your parent's important ID and membership cards. Highlight the expiration dates and leave a helpful reminder as to when the cards need to be renewed.
Keep an overnight bag in your car with a few of your own things (such as a toothbrush, a nightshirt, a change of clothes) just in case life throws you a curve. It will!
Caregiving and Financial Matters
Cancel credit cards when they're rarely used, to simplify the mail and your parent's life.
Phone and utility companies have special discounts and other services for seniors and the disabled: amplified phones, push-button phones, large-type bills, and so forth. Ask about what's available.
Keep track of your parents' finances, to the extent that they allow you to do so. Offer to help with bureaucratic problems and other details (like getting an insurance adjustment or renewing licenses) for which your parents might not have the patience.
Respect that most people consider money to be a private subject, and handle it gently. Sometimes, parents will open up about their finances; for example, if you mention your own concerns about retirement or estate planning. Ask their input on how they handled these matters.
Recognize that giving up financial responsibilities represents a loss of control for many older adults. Don't take over all at once; perhaps Grandpa only needs help writing checks for now. Take it slowly.
If you are in charge of your mother's finances, online banking will save you tons of time in bank visits and in being put on hold when you need to handle something. And you'll have an automatic record of every transaction.
Arrange for your loved one's social security, pension payments, and so forth, to be directly deposited into his bank account. It's a pretty simple process that the bank will be happy to help with, because it makes things easier on them, too.
Check your loved one's mail often to make sure outstanding debts are being paid, insurance premiums are up to date, and all business details are being handled.
"I knew it was really hard for my father to talk about financial issues, especially when it became clear that he might not be able to keep the house. We never really had a major 'talk' about it, where we sat down and ironed it all out. We did it in steps -- I'd bring up one part of it, we'd talk a little, then I'd suggest that he take a week to think about it and we could continue the conversation after that. It took a while, but it really made a difference in how he dealt with it."
To be removed from mailing lists if those catalogs are getting to be too much, write to the Direct Marketing Association (DMA).
Be sure to have copies of all health insurance and benefit program information that applies to your loved one. Make a list of all this information and indicate which policies cover various needs. Does one policy, not another, cover dental care? Do any of them provide for home health care benefits? Should you consolidate policies? A geriatric caseworker can help you make these decisions.
One quick way to find benefit programs for your loved one (or you) is to go online to benefitscheckup.org, sponsored by the National Council on the Aging. Fill out a confidential questionnaire, and get a list of local benefits or services to check into.
Medical bills don't have to be paid for ninety days.
The IRS (Internal Revenue Service) and AARP have set up volunteer tax assistance programs for older adults. (Accountants and tax lawyers volunteer their time to help with filling out tax returns.)
New caregiver tax benefits are in the works. Talk to an accountant to make sure you're getting the tax deductions, exemptions, and credits you might be eligible for as a caregiver. Or check with the IRS.