Alpha-1 Advocacy Alliance - Emotional Support

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Caregivers
How to constantly deal with the illness of a loved one.

There are two types of illnesses.

First type: The common pattern of illness is when an individual gets sick, goes to the doctor, and gets medicine and waits to get better.

Second type: The uncommon pattern of chronic illness is when an individual does not necessarily die from but lives with the illness. Because of the advances in medicine and treatment, the course and impact of diseases previously considered terminal have slowed and become chronic.

Let us look at how to go about dealing with an illness of a loved one whose illness does not match the common pattern.

Chronic illness often begins with symptoms, which often come and go, are difficult to diagnosis, making it necessary to search for specialists. This can lead the caregiver and patient to become increasingly frustrated and to start to question whether it is just in the loved ones and/or patients head - psychological.

When a diagnosis is finally determined despite being frightening it can be a tremendous relief. This sense of relief is short lived and may not be a universal reaction by all to the diagnosis.

Some caregivers experience sadness at having their worse fears confirmed or shock or even detachment. The emotions elicited by chronic illness resemble those described by Elisabeth Kubler Ross as stages of grief: denial, anger, bargaining, depression and acceptance, but for caregivers not necessarily all or in that order.

“And acceptance is the answer to all my problems today”. When you are disturbed, it is because you find some person, thing, or situation-some fact of your life-unacceptable. The first step in accepting a loved one's chronic illness is negotiating a coexistence with the illness just as your love one makes a choice whether to fight the illness to the death or to accept it as their normal state of being. What choices and options will you have to resign yourself to or have to deal with your loved one's chronic illness?

First- the practical side. The following steps will help give you more of a sense of control.

Medical directives and living wills-what are your loved one's wishes for medical care, for procedures that may reduce their quality of life, for life-prolonging efforts, or for pain control?

Durable power of attorney-to be able to make medical decisions if loved one cannot.

Knowledge of whom the loved one wants to know about his/her illness and hospitalization.

Help with managing and paying medical bills and dealing with the financial aspects of illness and disability.

Arranging for on-going assistance in meeting the loved one's health care needs and their ability to perform basic tasks of daily living.

Helping to think about the quality of the loved one's medical care and about treatment options.

Caregivers need to discuss arrangements their loved one has made or would like to make regarding wills, custody, and funeral and memorial services.

Discussing the above things may be difficult, depending on how the loved one feels and how they are coping with their illness. However, the choice in how to deal with each aspect of a chronic illness lies with the loved one who is ill.

Loved ones living with chronic illness are more than just their illness and may give support to their caregivers.

Care giving is stressful and labor-intensive. Some caregivers have their own health problems and aspects of their own lives to contend with even as they deal with the illness of their loved one.

Feelings of isolation and depression are common among caregivers. Their physical and mental health issues are as important as their loved ones' living with the chronic illness.

Second - now on the emotional side- the following steps can help you gain strength and courage needed to be there for your loved one.

On a regular basis, take time for yourself for relaxation, healthy eating, exercise, and fun.

Get help, if you need it, with providing assistance to the loved one. This is important, even if the loved one living with chronic illness objects to having additional assistance.

Accept offers of help from family and friends. People often wish to help, but do not know what needs to be done.

Join support groups or get mental health therapy if you feel distressed.

The stress of changing roles can be overwhelming and the caregiver may experience stress in the new role as the sole supporter and caretaker of the home and family. These changes can cause tremendous upset and confusion.

Too much anger at your fate and that of your loved one can risk bitterness.

You need information about your love one's illness in order to be prepared for changes both physically and mentally that they and you will experience.

I hope you have found the above information informative and helpful.

Disclaimer: The information presented on Ask Pat is not intended to be a substitute for professional medical advice or to replace your relationship with a physician. For all medical concerns, you should always consult your doctor.

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