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Caregiving:
When you Need a Break

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Caregiving can be a satisfying experience. It's helping someone you care for, helping him or her continue living independently in the community. But there is no denying this can sometimes be strenuous.

Finding an opportunity to break the routine, to leave your caregiving responsibilities in other competent hands is essential. Taking a break is considered by many to be the most important thing a caregiver can do to sustain the ability and desire to care for an individual. It's called respite care, or taking time out.

You have a right, and many will say even a responsibility, to take time out to get away from your caregiving activities. You need time for yourself. Time to spend with friends or alone. Time to spend relaxing, on a vacation, or engaging in a favorite hobby or sport.

No excuses!
Sometimes you may feel you have good reasons for not taking a break. You may feel it's your duty to take total care of your family member, that it is your duty to respond to their every need because they can't for themselves.

You may think no one else understands the person's needs or behavior, that no one can provide the same quality of care. You may believe the impaired person will not allow anyone else to provide the care.

In some cases, these may all be true. Certainly the disabled person does require special attention and care. But a balanced evaluation will show that others can also do an adequate job, at least for a short period of time.

You will be better able to continue providing care when you are rested, refreshed and invigorated after other activities and interacting with other people.

With proper planning, respite care almost always works. You may not be able to locate an appropriate respite care service immediately, and it may take a few tries to iron out all the bugs. But with repeated attempts, an orderly and satisfying respite arrangement is usually possible.

Benefits for both
Isolation can be a danger to your well-being. If you allow no one to help in the caregiving, your friends may drift away and your social contacts shrink. Feelings of loneliness, sadness and grief may be exposed. Anger at the impaired person or the world could follow. Eventually guilt about even being angry may develop. It's not a nice process.

Also, often care receivers want more than just a single person involved in their care.

So, be specific in your requests for help. Consider small things each individual might easily provide, like spending a few hours a week playing cards or watching TV with your family member, or just by staying in the house while you're gone. Also be realistic about how long you'll need this help. You might try a "trial period" so all parties can see how an arrangement works.

Medical experts and groups representing the disabled also generally agree that handicapped or disabled people should be encouraged to do as much for themselves as possible. Involvement with others is an excellent way to spur interest in and work towards independent activity.

Defining your need
Admittedly, finding appropriate substitute care for a stroke survivor may be difficult. If you'd like to leave on vacation Saturday, don't expect to make arrangements Friday night. It takes time and preparation. Financial arrangements may need to be made. It may be upsetting to your care receiver. Balance these negatives with the benefit everyone receives from the temporary relief.

As in other caregiving responsibilities, you must be organized. You must know what type of help or relief you need or want most. Do you need occasional respite or a regular help you can rely on, or both? What activity and times are most beneficial to you? Is one evening out weekly enough, or do you need household assistance daily to allow you to tend a garden or go for a walk?

Develop your list from the major categories of caregivers' responsibilities:

• personal care   
• housekeeping   
• meal preparation   
• transportation   
• medical care/supervision   
• recreation   
• shopping   
• daily supervision or companionship

Compare the list to your financial resources, the people you might call on for help and any private or public agency services available in your community.

Others also care
Family and friends can and should play major roles in caring for a disabled or impaired person. This is true even if most of the care has obviously been taken on by one person, you!

Try to involve these others with giving care early. Keep them involved! You need their assistance for an occasional break. Neighbors and friends may be glad to help when asked, despite hesitating to offer. Maybe they don't know what they could do to help, or how to offer help without interfering. You may even be unintentionally discouraging them by appearing to always have everything under control, when you are really overwhelmed.

Depriving yourself of rest and recreation can sap your strength and drain emotional energy. It can create or compound tension between you and your care receiver, or among other family members.

Other than you, your care receiver may only see a few people regularly. He or she can also benefit from seeing and being around others while you are taking your break. A break helps care receivers stay "fresh" just like you. To the degree possible, it also enables them to continue with their own activities, interests and friends.

Where else to find help
Ask relatives, friends, clergy or social workers for suggestions of other people who might help. Often word of mouth is a good way to locate dependable, suitable assistance.

Sometimes community organizations such as United Way agencies or information and referral services can also help. Local colleges, churches and senior centers can also be sources of referrals or help.

Hospitals and nursing homes sometimes offer respite care for short periods of up to a week, temporarily moving the care receiver into their facilities.

Adult day care centers in many communities provide the therapeutic activities, supervision and health monitoring for four to eight hours a day. Many adult day care centers will take clients on a regular basis, one to five days a week. Day care is sometimes also available in private homes licensed to care for two to five people.

Home health aides and household helpers are becoming available for hire through private businesses, hospitals or health agencies. You may want to contact your county social services office and public health agency regarding similar help.

When calling any of these agencies, try to state clearly and briefly your needs for a break. Keep a record of the names of your agency contacts and all the information they give. Remember to ask about financial and geographical eligibility, and ask if there are other agencies whose services might meet your needs.

Preparation
Especially if you've always been available, your care receiver will need to be prepared when you do leave for a break. Try to arrange for the helpers to come at a time when the stroke survivor is normally calm and is likely to feel at his or her best. Also, reassure your family member that you will return at a particular time. It's probably wise to be close-by during the first few visits of the helper. The helpers will need to know the schedule and routine in the home, exactly what they're expected to do, and how to reach you if a problem arises.

In many parts of the country, formal respite care services are not readily available, but health and social services professionals are working to develop respite care. You may help speed this process by informing your county planning board or commissioner of your family's need for that service.

SOURCE: Stroke Association Organization