Caring for the caregiver

IN OUR last column we looked at the problems of caring for Alzheimer's patients. Most people feel hopeless when a relative or friend is diagnosed but although there is no cure at present, there are drugs that can temporarily relieve some of the symptoms and lessen the problems, particularly when the person has a mild form. Research is continuing around the world as, with life expectancy increasing everywhere, there is intense interest in better understanding the disease and in searching for a cure.

Family meeting

Perhaps the first thing that families should do is to meet and discuss frankly how the patient is to be cared for. In most families, there is usually one member who takes on the family's greatest problems, but Alzheimer's is too serious for any member of the family to exempt himself or herself from the problem. When the family meets, they should have an agenda for discussion. This may sound like "business" but this problem is so serious and potentially long-lasting that a systematic approach is necessary if the burden is not to fall unfairly on one or two family members.

Understanding the problem

The first order of business is to make sure that everyone really understands what they are facing. Maybe one of the younger family members - the one most familiar with the Internet or who is in, or has friends in the medical and nursing professions - can be given the responsibility to do thorough research on Alzheimer's and explain it to family members. There are also books, magazines and other sources of information.

A good source is other families who have a member who suffers from the disease. They can provide first-hand information and guidance. Take this seriously. There is much that can be accomplished if everyone understands what they are dealing with. All this information should be shared with the family.

Priorities

The next item is for the leading family member to prepare and discuss at this meeting a list of what needs to be done in order of priority. A schedule of how to arrange for care of the patient, including what members of the family can and will do, and how much reliable outside help can be found and how much this will cost is paramount. The next item is the cost of this help and who will bear it. There may be many sources of help which the family may not have known about before, as there has been no need for this type of help. Delegate family members to ask around. Check with the government senior citizens' agency; check with your church or other social group; home health aides; adult day care centres and nursing homes - all these must be investigated and decisions made as to what is best for the patient and for the family.

What the caregiver must do

Whoever ends up as the primary caregiver it is important to take care of himself/herself. The caregiver should:

Eat nutritious meals

Get enough sleep

Find time to do the things he/she enjoy: reading, walking, listening to music. Meditation or other relaxation techniques are highly recommended

Set a daily list of things to be done and don't overdo it

Don't be too proud to take outside help, whoever or wherever it comes from. Ask! No one can know how you are feeling if you don't say anything and that includes family members. Many family members have very selective memories when it comes to dealing with family problems. The caregiver should resist any urge to make himself/herself a martyr. There must be some semblance of equal sharing of this heavy responsibility. Set limits. Remember you can and should say "no" sometimes - to the patient or to family members when demands are unreasonable.

When feeling resentful or angry at the burden, pause, take a deep breath and remember why you are doing this job and accept that these feelings are normal; look forward to the time when someone will be coming to relieve you. Forgive yourself for these feelings - they are normal under the circumstances

Get regular medical check-ups to make sure the stress is not affecting the caregiver's health as it can do

If the caregiver begins to suffer from depression (extreme sadness, trouble concentrating, apathy, hopelessness, thoughts about death) he/she must see a doctor right away; the depression can be treated

Keep in touch with family and friends. Keep up social contacts at church, at service clubs or whatever sources of fellowship he/or she has had, or make these contacts now.

Do not try to spend 24/7 taking care of the patient. GET HELP ON A DAILY BASIS to prevent a physical or mental breakdown. This is vitally important. Supporting the caregiver.

Inevitably, it is likely that one or two family members will end up with the major chore of being in the front-line of caregiving. He or she will need the fullest support and encouragement of family and friends. Everyone must show an interest on a daily basis. Call or visit often to see how the caregiver is coping. Show an interest in both caregiver and patient.

Since the patient must be kept on a careful and predictable schedule, don't call or visit at an inconvenient time. Check what the schedule is so you can fit in and not disrupt the schedule. Call before you visit and when you do, be prepared to listen as the caregiver unburdens himself/herself. This is very important. Listen carefully if there is any veiled or direct cry for help for caring for an Alzheimer's patient is known to be one of the most stressful responsibilities ever!

Being of help to a family who is caring for a person with Alzheimer's takes time, patience and creativity. Try and help ease the emotional and physical strain. Any help you can, no matter how basic, will be more than welcome.

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