Remember: You Are Not Alone
About 66 million Americans are caring for parents, spouses, children, or other relatives. With the National Family Caregiver Story Project -- at www.thefamilycaregiver.org -- you can read stories of caregivers like yourself. You can post your own story or you can respond to another caregiver through the Pen Pal Program. You may get some valuable advice – and you're sure to realize that you're not alone.
Get Enough Sleep
Most caregivers who say their own health has gotten worse blame loss of sleep. Relaxation exercises, such as deep breathing, may help you at bedtime. If your loved one sleeps during the day but is awake much of the night, try to take naps. You may need to hire an aide or ask a friend or relative to stay with your loved one overnight so you can get a good night's sleep.
Join a Support Group
No one understands your situation as well as another caregiver. Look for support groups related to your loved one's illness, if possible. The local Agency on Aging may have a full listing. Or consider joining an online community, where you can connect with others, ask questions, and share ideas.
Draw on Workplace Support
Larger companies must offer up to 12 weeks of unpaid leave for employees with a parent, spouse, or child who is seriously ill -- thanks to the Family and Medical Leave Act. If you can't take leave, your employer may adjust your schedule so you can work flexible hours. Be clear about how you will get the work done. Employee assistance programs may help you find care for your loved one while you work.
Speak Up For Yourself
Be assertive to meet your needs and the needs of your loved one. When you make a doctor's appointment, list your reasons so you get enough time to discuss your concerns. When someone asks if you need help, say yes -- and suggest a task. Make goals for yourself to improve your own health or give yourself a break and create an action plan to meet them.
Show Love When Words Fail
When dementia makes it hard for your loved one to understand conversation, you can still communicate. Use facial expressions, gestures, and your posture. Make eye contact. Your eyes can show your caring, concern, and love. To keep a loved one from wandering outside, you can use a stop sign, barrier, or curtain on the door.
Hold Family Meetings
Gather everyone who might be involved in caring for your loved one, including paid caregivers. Connect distant family members through a speaker phone or online video chat. Have an agenda to discuss the latest medical news, daily caregiving needs, financial concerns, and your need for support. Allow all to express their feelings. Follow up with a written agreement and a calendar of tasks. The meetings should occur regularly.
If you understand more about your loved one's condition, you'll provide better care. And you can plan for future caregiving needs. Research the medical condition on the Internet and write down your questions to ask the doctor. If you need more time to talk, ask for a consultation appointment.
Take Care of Your Health
Caregivers have a higher risk for chronic illnesses and depression than ordinary people. That's why your to-do list should include time for yourself. Exercise reduces blood pressure and can help relieve stress. Take care of your back. You are at risk for back pain when you help someone sit up in bed or move from a bed to a chair, or if you bend over for long periods of time.
Know Your Limits
You can't provide good care if you feel overwhelmed and stressed out. Make a list of all the tasks you need to do in a week, including dressing and bathing a loved one, rides, cooking, and household chores. Brainstorm which ones someone else might be able to do. Learn when to say 'no' and set boundaries so you can take care of your family -- and yourself.
Get Help for the 'Sandwich' Squeeze
The average caregiver is a 48-year-old woman caring for a parent or other older relative. About a third of caregivers also have children at home. If you're in this "sandwich generation," be sure to ask for help when you need it. Older children can do chores and even young children can help entertain their older relatives.
Go Online to Coordinate Care
When you need help, try an online community. The National Family Caregivers Association offers a free one, called Lotsa Helping Hands, to coordinate care with friends and family. You can store medical information, post photos, arrange for rides, meals, or visits. Volunteers can sign up directly on an electronic calendar, saving you phone calls and emails. Other care sites work like a shared journal to post updates on a loved one's condition.
Find Respite Care
Make a list of family, friends, or neighbors to call when you need a break. Even a few hours 'off duty' can help you recharge. Insurance may pay for a home health aide. Adult day care centers can give you a breather while your loved one enjoys some social activity. Your local Area Agency on Aging can tell you where to find help, and may provide direct help, too. Hospice programs provide support for the whole family of someone who is terminally ill.
Cope With Sundowning
People with dementia can become confused or agitated in the evening. Fatigue or changes in their sleep-wake cycle may be to blame. Mental fatigue can play a role, too, from straining to process information all day. Tips: Plan activities early in the day and serve an early dinner. Turn the lights up in the evening. Check with a doctor about any physical or sleep problems. Treat your loved one with calm reassurance.
Set Up Cameras and Sensors
To chat with your loved one or keep tabs on her when you can't be there, consider setting up a webcam -- a video camera connected to the Internet. Video chat applications can also help to involve distant family members in care decisions. If your loved one might wander away, you can install sensors that alert you when a door is opened.
Provide an Emergency Alert Device
Consider an electronic 'help' button for time a loved one spends alone. It's worn like a pin or a necklace, and it's called a personal emergency response system (PERS). Most connect to the phone system. Some work like a walkie-talkie, so the wearers can talk to an emergency operator at any time. Some will notify a family member or call 911, depending on your preference. You will need to pay a monthly fee for the service.
Use Timers and Reminders
Let technology help you manage medicine. You can buy pill boxes that play an alarm when it's time for the next pill. Or try a smart phone app or an online medicine reminder. Many are free or low-cost. They can send an alarm, text, or even an automated phone call to your loved one. Pill organizers are a low-tech option. A month ahead, you can set out pills in little drawers by day, meal, or even by the hour.
Bring in Art and Music
Music and art can spark fun shared moments for people of many abilities and ages -- including grown children whose physical or mental challenges require ongoing care. Familiar music brings back memories and may lead to clapping or dancing. Simple songs, such as Christmas carols, provide an enjoyable moment. Art projects should be simple and safe, but not too child-like. Painting or making a collage from magazines are two good options.
Make Time for Laughter
There's nothing like a good laugh to relieve tension. Your current situation may be no laughing matter, but you can relax and forget your woes with a comedy on TV or DVD. Laughter may also be good medicine for your loved one. Studies show laughter releases endorphins, which are 'feel-good' chemicals in the brain.
Keep a Daily Routine
Following a similar routine each day can help you feel in control, rather than stressed. It also lets your loved one know what to expect, which may cut down on multiple phone calls or requests. A regular visit, meal, or phone call creates a time to discuss upcoming needs. For someone with dementia, a daily routine may help her feel more secure and make it easier for her to dress or bathe herself.
Start With a Stretch
Set the tone for your day by relaxing for about 15 minutes when you first wake up. It may seem impossible, but it's important to take time for yourself, even a few minutes. Take a short walk for exercise, work in your garden, or do some other hobby. Try a warm bath in the evening. Reducing your stress will make you a better caregiver.
Know the Signs of Caregiver Burnout
Is every day a bad day? It's important to get help for yourself early to avoid severe emotional burnout. Early warning signs include: Feeling tired most of the time Headaches, back pain, muscle aches Sleep or appetite changes Feeling helpless, trapped, or detached A more cynical or negative attitude Isolating yourself Neglecting responsibilities Using food, drugs, or alcohol to cope
Let Animals Assist
A visiting cat or dog can soothe people who are sick or confined to home -- a special-needs child, a spouse with a chronic illness, or a frail older person. Pets can lower blood pressure, reduce stress -- even make elderly people more alert. And seeing a loved one 'perk up' can make you, the caregiver, happier, too. Tip: Be sure your pet is well-trained. Or go through an animal therapy group.
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