Table of Contents
Coping With Being an Alzheimer’s Caregiver
Caring for someone who has Alzheimer’s disease can be overwhelming, exhausting and stressful. A family caregiver may feel loss over changes in relationships with a loved one with Alzheimer’s, other family members and friends. During this time, it is critical that caregivers look after their own physical and mental health.
Are you so committed to caregiving tasks that you’ve neglected your own physical, mental, and emotional well-being?
The following questions may help you determine if you are putting your health at risk:
Do you visit your physician annually?
The best thing you can do for the person with Alzheimer’s disease is to stay healthy. Respect what your body is telling you. Take exhaustion, stress, sleeplessness, and changes in your appetite or behavior seriously. Ignoring these symptoms can cause your physical and mental health to decline.
Do you accept assistance from others?
You can’t do everything. Attempting to handle everything yourself will only lead to burnout, depression, and resentment toward the person you care for. You are not failing as a caregiver by asking others for assistance. When friends and family offer help, accept it. Also look into community resources that offer respite from caregiving responsibilities.
Do you talk to others about your feelings?
You may think that no one understands what you are going through. Holding in your feelings, however, will only make you feel isolated and emotionally neglected. Sharing your experiences with others may help you put things into perspective.
There are six simple steps you can take to ensure that you are a healthy caregiver:
- See your physician regularly.
- Get screened for stress and depression.
- Get plenty of rest.
- Eat well-balanced meals.
- Exercise regularly.
- Accept help from others.
Dealing with Caregiver Stress
More than 80 percent of Alzheimer caregivers report that they frequently experience high levels of stress, and nearly half say they suffer from depression. Many caregivers don’t recognize their needs, fail to do anything about them, or simply don’t know where to turn for help. Too much stress can be damaging to caregivers and the person with Alzheimer’s.
If you are a caregiver who is experiencing stress symptoms on a regular basis, consult your physician. You may also want to seek professional counseling so that you have a safe and private environment to talk about your concerns.
Warning Signs of Caregiver Stress
- Social withdrawal
- Lack of concentration
- Health problems
Ways to Reduce Caregiver Stress
- Know what respite resources are available in your community so that you can take a break.
- Become educated about Alzheimer’s disease and caregiving techniques.
- Get help from family, friends, and community resources.
- Take care of yourself — get good nutrition, exercise, and plenty of rest.
- Manage your level of stress by using relaxation techniques.
- Accept changes as they occur.
- Plan for legal and financial issues to avoid handling them in a crisis situation.
- Be realistic about what you can do.
- Give yourself credit for what you have accomplished; don’t feel guilty if you lose patience or can’t do everything on your own.
- Connect with other caregivers by initiating an online community. You can share experiences with others who know exactly what you are going through.
Depression and Alzheimer’s Caregivers
Stress, anger, guilt, and grief related to caregiving can lead to depression. Caregivers can experience depression at any point in the disease process. If you are experiencing depression that is affecting both your physical and mental well-being, seek immediate help from your physician.
Symptoms of Depression in Caregivers
The presence of at least four of the following symptoms over a two-week period may indicate depression:
- Depressed or irritable mood
- Feelings of worthlessness or excessive guilt
- Suicidal thinking or attempts
- Motor retardation or agitation
- Disturbed sleep
- Fatigue and loss of energy
- Loss of interest or pleasure in usual activities
- Difficulty thinking or concentrating
- Changes in appetite and weight
Source: American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders
Treatment Is Available
If symptoms of depression are present, it is important for you to obtain a complete medical evaluation to rule out any other physical causes. Medications or an unrecognized disorder may cause depression.
If there are no other underlying causes, consult a psychiatrist to obtain a diagnosis. Geriatric psychiatrists specialize in recognizing and treating depression in older adults.
Changes in Relationships
If you are a caregiver, you will experience changes in relationships with your loved one with Alzheimer’s, and with family members and friends.
Alzheimer’s and Relationships
You may find yourself taking on a new role in your relationship as your partner’s memory worsens. The person with Alzheimer’s disease may no longer be able to perform certain tasks, such as balancing the checkbook, doing the taxes, handling financial and legal matters and doing certain household chores. Making important decisions on your own may feel overwhelming.
To be prepared for this role reversal, it is important that you locate financial and legal documents, such as life insurance policies, property deeds, and retirement accounts, soon after your loved one is diagnosed. You may need to turn to family, friends, professionals, or community resources for assistance.
You may be feeling enormous grief over the changes in your relationship. You are not selfish for experiencing these feelings. Given your partner’s cognitive decline, you may no longer be able to have the same emotional or physical intimacy that you once shared.
It is typical that people with Alzheimer’s disease experience changes in their sexual drive. Depression can cause a reduced interest in sex. Some caregivers report changes in sexual feelings toward their loved one as a result of providing daily caregiving tasks. A physical illness and reactions to medications can also reduce sexual desire.
Changes caused by the disease may cause the person with the disease to exhibit inappropriate behavior and an increased sexual drive. React to your partner with patience and gentleness. Give your loved one plenty of physical contact with hugs or holding hands. In many cases, he or she may simply be anxious and need reassurance through touch and gentle, loving communication.
How Does Alzheimer’s Affect Family and Friends?
You may feel socially isolated because your family and friends may have pulled back from your relationship or you have little time to spend with them. Your family and friends may hesitate to spend time with you and the person with Alzheimer’s disease because they worry about not knowing what to do or say. They may also not understand the behavior changes caused by the disease or are not able to accept that the person has the disease.
Take the initiative to contact family and friends and explain that while Alzheimer’s disease has changed your lives in some ways, you value their friendship and support. Considering inviting a few friends or family members over. Let them know in advance of any physical or emotional changes in the person with dementia. Provide them suggestions about how to communicate with the person and what activities they might be able to do together.
Resolving Family Conflicts
Caregiving issues can often ignite or magnify family conflicts, especially when people cope differently when faced with caregiving responsibilities. Family members may deny what is happening or resent family members who live far away or are not helping enough. There may also be disagreement about financial and care decisions.
To minimize conflicts, try to acknowledge these feelings and work through them.
- Have a family meeting. Talking about caregiving roles and responsibilities, problems and feelings can help ease tensions. You may want help from a professional counselor or clergy.
- Recognize differences. Some family members may be hands-on caregivers, responding immediately to issues and organizing resources. Others may be more comfortable with being told to complete specific tasks.
- Share caregiving responsibilities. Make a list of tasks and include how much time, money, and effort may be involved to complete them. Divide tasks according to the family member’s preferences and abilities.
Continue to communicate. Periodic family meetings or conference calls keep the family up to date and involved. Discuss how things are working, reassess the needs of both the person with Alzheimer’s and the caregiver, and decide if any changes in responsibilities are needed.
Coping with Feelings of Loss
If you are a caregiver, you can expect to experience feelings of loss, especially as your life and the person you love are changed by Alzheimer’s disease. The natural phases of grieving usually involve denial, anger, guilt, physical symptoms and, eventually, acceptance. However, it is important to know that everyone grieves differently.
Symptoms of grief:
- Denial that your loved one is ill
- Periods of helplessness, despair, and depression
- Changes in appetite or sleep patterns
- Feelings of anger or frustration with the person with Alzheimer’s and with caregiving tasks
- Withdrawal from social activities, friends, family, and the person you care for
Throughout the process of grieving and mourning, guilt is often the most prevalent feelings for caregivers. Guilt can be related to:
- Thinking you could have done something differently
- Being able to enjoy life while your loved one may not
- Feelings that you have failed, especially if your loved has been placed in a nursing home
- Negative thoughts about the person with the disease — wishing that his or her suffering would come to an end
- Conflicts with family members because they are uninvolved or critical of the care that’s being provided
In many cases, feelings of guilt are linked to unrealistic expectations. To cope with the grieving process, try taking the following action steps:
- Confront your feelings
- Accept guilt as a normal part of loss and grief
- Find ways to forgive yourself
- Share your feelings with a friend, support group, therapist, or spiritual leader
- Learn to feel comfortable accepting and celebrating good things in your life
For more help, see 6 Ways for Caregivers to Manage Feelings of Guilt.
If grieving is so prolonged or severe that your physical and mental well-being are at risk, seek help from your physician. There are ways that you can begin to cope with grief, including:
- Returning to some aspects of your daily routine
- Allowing time for physical exercise, play, and rest
- Trying to find humor — even in difficult situations
- Bringing balance to your life by doing things that you enjoy
- Preparing for what the future may entail
Talking to Children and Teens About Alzheimer’s
Alzheimer’s disease has a large impact on family life. It is important to take the time to talk with the children and teens in your family so they understand what is happening to the person with Alzheimer’s.
The degree to which children and teens are affected by the disease depends on who has the disease — a parent or grandparent, relative, or friend. Other factors include how close the child or teen is to the person and where the person lives (in the same home, assisted living or nursing home, out-of-state, in close proximity).
Feelings and Reactions
Children and teens may feel:
- Sad about changes in a loved one’s personality and behavior
- Confused or afraid about why the person behaves differently
- Worried that the disease is contagious and that they will get it
- Worried that their parents might develop the disease
- Angry and frustrated by the need to repeat activities or questions
- Guilty for getting angry or being short-tempered with the person
- Jealous and resentful because of the increased amount of time and attention that is given to the person with Alzheimer’s
- Embarrassed to have friends or other visitors to the house
Children and teens may exhibit their emotions in ways you may not easily recognize. They may:
- Verbalize vague physical complaints, such as a stomachache or headache
- Perform poorly in school
- Spend more time away from home
- Stop inviting friends to the house
Ways to help children and teens cope
- Maintain open lines of communication
- Offer comfort and support
- Provide opportunities for them to express their feelings
- Let them know their feelings are normal
- Educate them about the disease and encourage them to ask questions
- Respond honestly to questions
Activities that can help and be done as a family
- Go for a walk
- Do household chores together, such as folding laundry, raking leaves, or washing dishes
- Listen to music, dance, or sing
- Look at old photographs
- Read a favorite book or newspaper
- Develop a memory book about the person
- Make a family tree
- Watch a movie
- Keep a journal together
Respite care provides caregivers temporary relief from the intensive demands of their daily caregiving responsibilities. Respite also strengthens caregivers to continue to provide ongoing care in the home. Respite care is mainly offered through community organizations or residential facilities. The most common respite care programs are in-home care and adult day services.
In-home services offer a range of options, including companion services, personal care, household assistance, and skilled care services to meet specific needs. In-home helpers can be employed privately, through an agency, or as part of a government program.
Adult day services provide the person with Alzheimer’s opportunities to interact with others, usually in a community center or facility. Staff lead in various activities such as music programs and support groups. Transportation and meals are often provided.