Caregivers, whether they are paid, unpaid, family, friends or professionals, face many pressures and stresses. To take the best care of the Alzheimer’s patient, you must take good care of yourself. Some ways to do this include the following:
- avoid isolation–talk to other caregivers
- seek support from family and friends
- find organizations that can help
- attend training and informational classes to learn new skills and find out more about the disease
Many caregivers become isolated when the patient requires a great deal of care. Isolation causes stress and can produce mental and physical health problems. Make sure you ask for help at all stages of the disease. Asking for help is not a sign of weakness: it’s smart caregiving.
Impact of diagnosis on the family
Family members may have trouble accepting that their relative has dementia. Family members may also feel anxious and depressed and worry about legal and financial arrangements. It’s important to remember that Alzheimer’s disease impacts everyone in the family (not just the primary caregiver).
Common feelings family members and caregivers report:
- grief and sadness
- fear and anxiety
- embarrassment or shame
- feeling overwhelmed and alone
- discomfort about the disease
What can be done about these feelings?
Don’t deny them. They are important for letting you and other family members know your areas of strength and weakness. Seek assistance for the areas of caregiving you find most difficult. Find a supportive person or a support group to discuss feelings. If more help is needed, consult a professional (such as a psychologist, social worker or counselor).
Some suggestions in coping with particular feelings are:
- depression–increase pleasant activities, especially social and physical activities
- grief and sadness–increase pleasant activities and talk about your feelings with others
- embarrassment and shame–talk with others who have been through a similar situation
- disappointment–try to remain flexible and accept things that didn’t go the way you had hoped they would
- fear and anxiety–plan for the future, take concrete steps to face fears and alleviate anxiety
- anger–get away from the situation and try again later, find someone to provide relief care so you can have time to yourself
- guilt–talk with a friend, counselor or helping professional; guilt is particularly tricky because there is always more you can do–be realistic in deciding what constitutes doing enough
- overwhelmed–get help, try to remember that the impaired person doesn’t always have to come first, plan for times when you can rest and be alone.
Why involve family and friends?
Caregivers sometimes feel the need to keep the patient’s disease a secret from family and friends. While you must use your own judgment and do what is comfortable for you, there are some good reasons for involving family and friends right from the start of the illness and keeping them involved.
- it helps your physical and mental health
- its good for the patient to get used to other caregivers early on (it can be harder to introduce new caregivers later in the disease)
- a team approach decreases the burden of decision-making
- family involvement can decrease misperceptions and fears about the disease and help everyone cope better.
How do you involve family and friends?
There are a number of ways to involve others. One, obviously, is to have private conversations. Another is to call a meeting of family and close friends. These meetings can be good ways to share information, feelings, and solve problems. Professionals are sometimes available to help conduct these meetings. Before arranging such a meeting think through:
- what you want to accomplish
- what you need help with
- who should attend, where the meeting should be, and how long the meeting should last
- whether you need assistance in conducting the meeting-if so, ask a social worker, clergy, lawyer, or nurse to assist you
When asking for help from family and friends remember to be specific and be direct.
Caregiving changes your life and can also change your circle of friends. Replace friends who are demanding and judgmental with people who can be supportive and understanding of your situation.
What long-term plans are necessary?
Long-term planning is important to good caregiving. Caregivers must make many difficult decisions over the course of the disease. Knowing what your choices are and having support available will make these decisions easier. When making long-term plans:
- make sure you have a knowledgeable attorney to advise you about durable powers of attorney, living wills, health care preferences, or a guardianship
- make sure you have a health care team you can rely on such as a doctor who specializes in geriatrics, a nurse, and a social worker; some geriatric doctors have nurses who can make house calls and this can be invaluable in the later stages of the disease
- become familiar with nursing homes; whether or not you decide to use one, it is good to know what’s available; remember that in urban areas some nursing homes offering specialized care for Alzheimer’s patients have long waiting lists
- develop a network of family, friends, and/or community services that can help you with caregiving at all stages
- take advantage of respite (relief care) opportunities; you can find respite help through:
- the Area Agency on Aging
- adult day care centers
- local hospitals
- family, friends, neighbors, church and community groups, or private agencies
- the Alzheimer’s Association
- Senior Information and Assistance
- be aware of other helpful services:
- transportation (low-cost van services, half-price taxi fares for seniors)
- meal and chore services
- doctors with staff who make house calls
- mobile X-ray services
- handyman services
To prevent isolation and stress, make sure you use as many available resources as possible.
Your physical health often depends on your ability to get help with the burden of caregiving. Being the only one the patient depends on is not smart caregiving. If you develop health problems, and this happens to many caregivers, the patient will be without help. A common reason for nursing home placement is because the caregiver becomes ill. Some common health problems of caregivers include:
- substance abuse (alcohol or medications)
- exacerbation of preexisting illnesses
It’s important that you take time for basic personal needs (such as exercise, proper diet, sleep, and time with friends). If your basic needs are unmet, health problems may develop.
There are a number of reasons why caring for an Alzheimer’s patient is particularly stressful. In this section we will offer some suggestions for managing the stress of caregiving.
With an Alzheimer’s patient, no matter what you do, or how well you do it, the patient will decline over time. As a result you will need to:
- continually readjust your time and involvement with the patient
- take time to grieve the many losses that occur during the course of the disease
- avoid taking the patient’s decline personally (it does not reflect on your caregiving)
- remember it’s OK to be angry at your situation: it’s nothing you would have chosen
Caregivers must adjust to role changes in addition to the extra tasks of caregiving. For example, an adult child often becomes a caretaker for their mother or father and a spouse assumes extra burdens and tasks in the relationship. Keep in mind that:
- role changes are tremendously stressful for both the caregiver and patient
- it’s normal to feel resentful and overwhelmed when forced into a new role
Caregiving is a job without clearly defined goals. There is often no limit to how much you can be doing (and to how guilty you can feel about not doing enough). It is helpful to:
- make a list of what defines doing a good job; be specific and think about the patient’s physical comfort and safety; when you start to feel inadequate think back to your list-are you expecting too much of yourself?
- talk to other caregivers about what you do; often someone in the same situation you are in can understand and help you gain a realistic perspective on your situation
Caregiving will often reactivate long-standing interpersonal problems you may have had with the patient. Generally, the more troubled your relationship was with the patient beforethe disease the more difficulty you will experience in the caregiver role. Remember, you cannot change your history, you can only work on the present.
Different stages of the disease may create different stresses. In the early stages the predominant stress is often depression over the diagnosis of Alzheimer’s and changes in the patient’s personality, while in the later stages the predominant stress is usually the physical exhaustion of caregiving.
Caregiving adds unexpected responsibilities. Don’t expect to accomplish what you did before caregiving. Think about decreasing some of your expectations (letting the house go a few extra days without cleaning, getting take-out meals, or not sending Christmas cards this year).
Caregivers may have made promises a long time ago, when the patient was healthy, that they would never send them to a nursing home. Today’s reality may be quite different and these promises need to be reconsidered. Nursing homes can provide many positive services (varied staff, activities, and continual medical monitoring) that you might not be able to provide at home. Remember, choosing a nursing home does not mean you have failed.
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