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Caregiver's Handbook 7

F. Caring for the Caregiver

Caregivers experience mixed emotions. Love for your family member and the satisfaction you derive from helping may coexist with feelings of resentment about the loss of your privacy and frustration at believing you have no control over what happens. You may find it hard to accept the decline of the special person for whom you are giving care. Such feelings will depend in part on your prior relationship with your care-receiver, the extent of your responsibilities as a helper, and daily activities in your life (professional, social, and leisure pursuits). Your conflicting emotions may cause guilt and stress.

To guard against becoming physically and emotionally drained, you must take care of yourself. You need to maintain your health and develop ways to cope with your situation.

6. Caregiver's Self-Rating Scale:

Below is a scale to evaluate your level of caregiving. It has been adapted from an article in *Co-op Networker; Caregiver of Older Persons* by Judy Bradley. It is an excellent effort to provide some guidelines for caregivers and to evaluate your level of care and value which you give your care-receiver and yourself.

The scale is a 1-10 continuum which describes the various styles of caring. Circle the number or numbers which best describe your level of care.

Table 2

1 2 3 4 5 6 7 8 9 10 ____________________________________________ Scale of Caregiving

1. Abandonment: to withdraw protection or support or to actively abuse your care-receiver.

2. Neglect: to allow life-threatening situations to persist or to display consistent coldness or anger.

3. Detachment/Aloofness: to maintain an air of detachment or being aloof, perfunctory in your care, no genuine concern, only obligation. Concerned only with physical well-being of your care-receiver.

4. General Support: given freely, with a guarded degree of warmth and respect, occasional feelings of manipulation. Concerned with both emotional and physical well-being of care-receiver.

5. Expressed empathy: the ability to feel what your care-receiver feels. a quality relationship where feelings can be freely expressed and caringly received with non-judgmental positive regard.

6. Sympathy: feeling sorry for care-receiver, giving sympathy, focusing on the losses experienced by care-receiver.

7. Occasional over-involvement: care characterized by periodic attempts to *do for* rather than *be with.*

8. Consistent Over-involvement: care-receiver regarded as object of series of tasks which must be performed.

9. Heroic Over-involvement: care characterized by sometimes frantic and desperate attempts to provide for every possible need your care-receiver has; increased dependence, care-receiver not allowed independence.

10. Fusion of personalities: between caregiver and care-receiver. The caregiver's needs no longer have any value or meaning; the caregiver has abandoned him/herself to needs of the care-receiver.

You can place yourself on the Scale of Caregiving to determine how you value your care-receiver as compared to yourself. The low numbers give little or no value (honor) to the needs of your care-receiver. The high numbers (8, 9, 10) give little or no value to your own needs as an individual and as a caregiver. The numbers in the middle are where you find a balance between undercare and overcare. Neither of the two extremes is healthy; they represent positions where you are not helping your care-receiver.

7. What can I do to help myself? Acknowledge your feelings: Your feelings have a lot to do with the way you view and cope with caregiving. All feeling are legitimate, even those that may sem disturbing to you (including anger, frustration, and sadness). Recognizing and accepting your emotions are the first step toward resolving problems of guilt and stress. Learn to express your feelings to family members, friends, or professionals. Take the following caregiver Stress Test; determine how much stress you are under.

Caregiver Stress Test

The following test will help you become aware of your feelings, pressures and stress you currently feel.

Table 3

Mark with S,O,U Sometimes true Often true Usually true

__ I find I can't get enough rest.

__ I don't have enough time for myself.

__ I don't have time to be with other family members beside the person care for.

__ I feel guilty about my situation.

__ I don't get out much anymore.

__ I have conflict with the person I care for.

__ I have conflicts with other family members.

__ I cry everyday.

__ I worry about having enough money to make ends meet.

__ I don't feel I have enough knowledge or experience to give care as well as I'd like.

__ My own health is not good.

If the response to one or more of these areas is *usually true* or *often true* it may be time to begin looking for help with caring for the care-receiver and help in taking care of yourself.

8. Seek Information: Check your public library for books, articles, brochures, videotapes, and films on caregiving. Some hospitals, Adult Education Centers, the Southern Regional Resource Center and CESS offer courses on caregiving and additional information on resources that you can turn to for help. Help is available!

9. Join a Caregiver Support Group: In addition to offering useful information, such groups provide a unique forum for caregivers to come together and share their feelings in a supportive environment. Groups help caregivers feel less isolated and can create strong bonds of mutual help and friendship.

Participating in a support group can help mange stress, exchange experiences, and improve skills as a caregiver. Sharing coping strategies in a group setting lets you help others while helping yourself. It may also help you to realize that some problems have no solutions and that accepting the situation is reality.

10. Set Realistic Goals: Caregiving is probably one of the many conflicting demands on your time. It is important to set realistic goals. Recognize what you can and cannot do, define your priorities, and act accordingly. Turn to other people for help - your family, friends, and neighbors. Prepare a list of tasks for anyone who may offer assistance. The list may include:

__ running an errand for you,

__ preparing a meal,

__ taking your care-receiver for a ride,

__ taking our children after school one day.

11. Practice good communications skills: Do not expect that others will ask if you need help. It is up to you to do the asking.

12. Communicate with your Family and Friends: Turning to family members or friends for emotional support and help can be a mixed blessing. Their visits may make you feel less alone and better able to deal with caregiving responsibilities. They can give you a break by spending time with your care-receiver.

However, other relatives or friends can be critical of the way you provide care. They may feel the house is not kept clean enough; or they may not like the way your care-receiver is dressed. Recognize that they are responding to what they see at that time and are lacking the benefit of experiencing the whole picture and any gradual changes in your care-receiver's condition. Harsh criticism may be a response to their own guilt about not participating more in the care process.

Try to listen politely to what is being said (even though this might not be easy). However, if you and your care-receiver feel comfortable with the way you are managing the situation, continue to do what meets your needs. Schedule a family meeting from time to time to help other family members understand the situation and to involve them in sharing the responsibilities for caregiving.

13. Use Community Resources: Investigate community resources that might be helpful. Consider using in-home services or adult day care. Employ a homemaker to cook and clean, or an aide to help your care-receiver bathe, eat, dress, use the bathroom or get around the house.

14. Use Respite Care Services: When you need a break from providing care to your care-receiver, look at respite care. For example, a companion can stay with your care-receiver for a few hours at a time on a regular basis to give you time off. Or have your care-receiver participate in an adult day care program where he or she can socialize with peers in a supervised setting; this gives your care-receiver a necessary break from staying home all the time. Hospitals, nursing homes, and particularly residential care homes offer families the opportunity to place older relatives in their facilities for short stays. The Residential Bed Availability Hot Line, your doctor, and the Area Agency on Aging can assist with arrangements.

15. Maintain your Health: Your general well-being affects your outlook on life and your ability to cope. Taking care of yourself is important and involves:

__ eating three balanced meals daily,

__ exercising daily,

__ enough sleep/rest,

__ allowing yourself leisure time.

Food is fuel for your body. Skipping meals, eating poorly, or drinking lots of caffeine is not good for you. Learn to prepare and eat simple, nutritious, well-balanced meals. Avoid alcohol above 2-3 ounces daily.

To Caregiver's Handbook Page 8

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