A “family caregiver” is a family member or friend who cares for someone who is disabled. Many disabled persons have only one such caregiver. Such solitary caregivers tend to suffer from a great deal of stress and, as a result, are vulnerable to illness.

One source of stress, especially for caregivers who are losing a parent, spouse, partner or friend to Alzheimer’s or another kind of dementia, is seemingly endless mourning. First, they lose the person who was able to be independent and to take care of himself. Then they lose the person who has been a companion in making decisions and enjoying life. Finally, in the case of someone suffering from advanced dementia, they lose the person who has recognized and known them.

The obvious suffering of their loved ones who are losing abilities, independence and parts of themselves sometimes makes it difficult for caregivers even to admit that they too are hurting.

“What right do I have to be upset,” a caregiver may ask herself, “when my loved one is losing and suffering so much?”

A geriatric care manager can help caregivers recognize, accept and express their feelings of mourning and can refer them to caregiver support groups that can help in these ways. Freedom to mourn is freedom to love the person one is losing, to receive from them what they can still give, to care for them with realism, intelligence and tenderness, and to take care of oneself.

Denials of mourning by caregivers are common and understandable, but they can have tragic results. A caregiver who cuts herself off from her mourning may not be able to recognize, affirm and enjoy the ways her loved one is still present. For example, even a person with advanced dementia can often, with encouragement, remember and tell stories about his childhood and early life. He will sometimes respond with physical warmth and even playfulness to a loved one whom he does not remember, but whose affectionate touch is familiar. In order to receive such gifts, a caregiver must be able to admit her feelings for and thus her mourning of her loved one.
Caregivers sometimes deny the feelings of anger about losing their loved one that is part of mourning. The repressed anger can break out in hurtful ways. For instance, a caregiver may become cold and distant in dealing with his loved one. Or he may find that he is constantly frustrated with and critical of her for what she can no longer do.

Often caregivers feel guilty about their anger. They become critical of themselves for what they have not done or are not doing or for their lack of compassion. Such guilt results in a vicious circle. When they attack themselves, caregivers become more exhausted, less able to care, and less able to love, which can lead them to be even angrier with themselves.

Caregivers who are caught up in guilt and the denial of mourning and who face the overwhelming demands of caregiving on their time and energy tend to neglect their own needs and health. Too often such neglect leads caregivers to become ill themselves.

Getting help with mourning from a geriatric care manager or a support group is thus a way of caring for both one’s loved one and oneself.

Dr. Herndon is with Community Geriatric Care Management, a wholly owned subsidiary of Foremost Home Care. communitygeriatriccare@gmail.com

Many older people live alone and do not have a close family member or friend living nearby who can help them if they become ill and unable to do all the tasks necessary to maintain their lives at home. They or a family member will sometimes employ a geriatric care manager.

A geriatric care manager can perform a range of needed tasks, such as helping with paying bills; planning for medical care and ensuring that a client goes to doctor’s appointments; working with doctors, nurses and social workers at hospitals and rehabilitation centers to ensure that a client receives the best possible medical care; arranging for and supervising home care aides; and working with a client to maintain his or her quality of life.

For example, a professional colleague referred me to Ms. D, who lives alone. She had been a professor until she was diagnosed with Alzheimer’s disease.

The first time I met her, she told me that she had been having increasing trouble remembering how to pay her bills. Sometimes she got disoriented on the subway, even when going to a familiar place, and panicked when she realized she did not know where she was. She needed help logging on to check her email. She did not remember how to tell the time from a digital clock. She did not know how to retrieve messages from her answering machine. She was overwhelmed, uncertain and close to despair.

Since that first meeting, I have met with her in her home for two hours a week. As I help her go through her mail, pay bills, check her email and do other tasks, I repeatedly confirm what she can do. She is a witty conversationalist. She has become active in the senior center and is going to be teaching a writing class there. She maintains close friendships.

By the second or third meeting, she had become more confident. She has stopped getting lost or panicked on the subway. She continues to have difficulties with other tasks, but, as I help her with them, her lack of ability rarely overwhelms her. She is enjoying her time at the senior center and conversations with friends.

This case illustrates a principle in working with someone suffering with dementia: Help with the specific tasks with which she is having difficulty, but repeatedly and consistently confirm her remaining abilities and help her find others who will appreciate what she knows and can do.

Roy Herndon Smith, Ph.D., is with Community Geriatric Care (communitygeriatriccare@gmail.com), a subsidiary of Foremost Home Care.