Your wife was diagnosed with multiple sclerosis (MS) two years ago. The situation has worsened during the last six months. How can you both cope? What will you do about the future? You never planned for anything like this.

Your father lives three states away and is recovering from a heart attack. He's managed on his own for a year, but now he needs more care. What can you do?

If you care for someone with a chronic condition, the above scenarios may sound familiar. A long-term or chronic condition affects not only your relative's medical status, but the entire family's social life, emotional stability, financial resources, and physical health. Coping with a long-term illness is complex for both caregivers and the care-receiver. Although a chronic condition can seem draining, you can find ways to cope, find some measure of control, and help your family accommodate the changes a chronic illness can bring.

What Is Chronic Illness?

An acute illness, like appendicitis or pneumonia, may be serious, but can be diagnosed, treated, and resolved. A chronic illness is different. Receiving the diagnosis is only the beginning. Your relative may see numerous specialists, who often need to make endless tests before deciding on a diagnosis. She/he may experience pain, losses, and repeated hospitalizations. Everyone is likely to worry and become weary of the process: dealing with the diagnosis, grieving the loss of health or lifestyle, and worrying about the future.

If you care for someone with a chronic illness, you're not alone. Common chronic illnesses such as arthritis, heart disease, diabetes, multiple sclerosis (MS), Lou Gehrig's Disease, and kidney failure affect nearly every American family. As lifetimes lengthen, more and more families are coping with the changes and strains that come with long-term illness.

Regaining Control

You and your relative will need to be your own advocates by learning as much as you can about the condition. The more information you have, the more in control you will feel. Your local library or bookstore can provide books on your relative's illness or disability. The library can also provide lists of organizations that deal with specific diseases (such as the American Cancer Society) and provide 800-numbers, educational materials, and local chapters with support groups. Studies show that caregivers and the cared-for benefit greatly from support groups or supportive counseling.

A chronic illness changes your frame of reference; secure plans for the future may suddenly be overturned. Your relative may not be able to depend on his/her body, mind, or livelihood. You may feel overwhelmed with new responsibilities and not know where to start in figuring out what to do. You or your relative might make sudden decisions in an effort to feel some sense of control. It's a good idea to avoid making major decisions at the initial diagnosis and during any acute stages of the condition. Potential relocation or placement issues need to be made carefully, taking all factors into consideration.

Here are some steps that may help you maintain balance and direction while caring for a chronically ill relative:

• Identify the challenges.
  When you begin to get used to the day-to-day management of the illness, consider more in-depth planning. Although it can be scary to look into the face of the prognosis, it can also help you regain control when you see the road ahead. Take stock with your relative about what you both want, need, and are capable of accomplishing. Consider his/her medical condition and all the information you have in order to alter plans and daily activities. It's okay to have wishes. It's okay to have fears and it's okay to be angry. When you plan carefully you may find that something you thought was impossible might very well be feasible.
• Learn how to relieve tensions.
  The intense stresses that came with the diagnosis now can become less intense, but are chronic companions of the caregiver and care-receiver. To keep tensions at bay:
  Recognize and communicate how you feel.
  Keep up your favorite hobby or activity.
  Remember, fun is a human necessity.
  Try to keep private time.
• Understand your own coping process.
  Don't expect that overnight you'll accept your relative's illness and the new strains it puts on you and your family. With the ongoing changes that can occur with chronic illnesses, adjusting to the changes is a challenge. Trying to manage with less money, fighting for entitlements, filling out forms, arranging for respite care, preparing nutritional meals, and learning to use assistive devices may require new skills. Understanding what approach works best for you can help. If you're a social person, join a support group and network with other caregivers. If information helps you feel better, read all you can about the illness.
• Consider your attitude.
  Despite the strain of long-term care, you may find unexpected pleasures, such as meeting joint challenges with your loved one and other family members. Many caregivers find a new appreciation of small victories and their own capabilities and strengths. Developing a sense of humor (particularly irreverent humor) is a great survival tool for caregivers.

The Importance of Family Communication

Family relationships shift over time as roles and responsibilities change with the illness. Such shifts present special problems in communication. Other relatives (such as siblings, children, grandparents) or friends may be so uncomfortable with the situation that they may deny the illness. They may feel overwhelmed and cut off communication at a time when they really need each other's support. If the strains are too great, a family member might shut down, feeling hopeless, isolated, and trapped. Sometimes relatives fret over minor issues while holding back painful news, angry feelings, or resentments.

When you know what your fears are (loss of income, loss of a dependable spouse, death of your loved one) you're less likely to express them inappropriately or take them out on others. You can also help jump-start communication by:

• Identifying your own needs
• Recognizing that life is more than the chronic illness
• Learning to send "I" messages: "I feel angry when we can't go to our favorite restaurant because it doesn't have a ramp" or "I feel great that you can use hand controls and drive the car".

By using these approaches you'll model good communication skills for everyone, gain a sense of control, and take ownership of your feelings at the same time.

Finding the Balance Between Dependence and Independence

When you care for someone with a chronic illness, you and your relative need to discover your own balance between his/her dependence and independence. Your relative will need to tell you when she/he doesn't need care and wants to try on his/her own. An elder or spouse with a chronic illness might be tempted to cede all responsibilities to you, or rebuff any offer of help no matter how reasonable. Learning to work together is possible when you develop and maintain mutual respect and communication. Consider these ideas for fostering independence:

• Encourage your family member to keep as many usual family jobs and daily activities as possible.
• Explore ways to compensate for illness-related changes, either through assistive devices or more help at home.
• Investigate programs that provide assistance in maintaining independence, such as retraining programs, assistive equipment, and vocational services.
• Help your relative identify activities that can substitute for former hobbies, such as wheelchair races instead of softball.
• Trade household tasks with your relative to suit his/her current capabilities in order to create a sense of partnership. Switch bill paying for running errands, cooking for laundry
• Allow for mistakes and messes.

Managing the Financial Crunch

As a well spouse or elder caregiver, you may need to contribute more earning power to make up for loss of income. Two salaries may shrink to one. As a working caregiver, you may feel an enormous responsibility for making the mortgage payment, saving for your children's education, or supporting your elder in his/her current home. Keep in mind that financial planning is a joint activity. Be sure to include as many family members as possible. Consider these ideas for lightening the load:

Know your options.
Look at what eventualities you'll need to plan for and what resources (savings, insurance benefits, Medicare) are available. You may want to meet with a financial adviser and lawyer. Be sure to read the fine print on insurance and disability policies your family has so you understand what benefits are needed and when you're eligible.

Keep careful records.
It's a smart idea to keep copies of all letters and forms concerning insurance, bills, hospital records, and prescriptions. Some medical expenses are tax deductible, while others may be reimbursed through your insurance plan; but only if you keep good records.

Consider at-home earning.
If your spouse or elder can't work at a full-time job, she/he may be able to continue working from home. Consider home-based work such as phone sales or consulting jobs. Volunteer work, as well as being emotionally rewarding, can sometimes lead to a paid job.

Find low-cost services.
Some of the condition-specific organizations provide information about low-cost services. Your local department of human services, office of vocational rehabilitation, or aging organization may offer low-cost respite services or put you in touch with volunteer respite services. Local caregiver support groups are also a great resource for suggestions. Family members may be willing to subsidize care; if they don't offer, ask them!

Extend your caring power.
Trade services with other parents or caregivers. You might offer to cook dinner for a single mother in exchange for her shopping for your groceries. Be creative about the chores you trade.

Know the limit.
When you have only so much money, you’ll need to economize. Learn the limits and let go of any guilt.

Taking Charge of a Chronic Condition

You can't eliminate your loved one's condition, but you can understand the illness and your options, and then take steps to adapt along the way. Chronic diseases are often unpredictable and your family will probably feel overwhelmed and out of control now and then. Be sure to take the time to step back, share feelings, and consider how you can support each other and find resources in your own community to help you all.

Resources for Further Information

Gans, Lydia. To Live With Grace and Dignity. LRP Publications, 1994, 72 pp., $34.50. To order, call 1-800-341-7874.

Maurer, J., and P. Strasberg. Building a New Dream: A Family Guide to Coping With Chronic Illness and Disability. Addison-Wesley, 1989, 307 pp., $9.95. To order, call 1-800-447-2226.

Pitzele, Setra. We Are Not Alone: Learning to Live With Chronic Illness. Workman Publishing, 1986, 336 pp., $9.95. Call 1-800-722-7202 to order.

Pollin, Irene. Taking Charge: Overcoming the Challenges of Long-Term Illness. Times Books, 1994, $22.50. Call 1-800-733-3000 to order.

Register, Cheri. Living With Chronic Illness: Days of Patience and Passion. Free Press, 1987, 316 pp., $22.95. Call 1-800-223-2336 to order.

Spiegle, Jan A., and Richard A. Van der Pol. Making Changes: Family Voices Living With Disabilities. Brookline Books, 1993, $19.95. Call 1-800-666-2665 to order.

Strong, Maggie. Mainstay: For the Well Spouse of the Chronically Ill. Penguin, 1988, 327 pp., $9.95. Call 1-800-526-0275 to order.

Wheeler, Eugenie, and Joyce Dace-Lombard. Living Creatively With Chronic Illness: Developing Skills for Transcending the Loss, Pain, and Frustration. Borgo Press, 1990, 225 pp., $9.95. Call 909-8845813 to order.

This material is not intended to replace the advice of a qualified attorney, tax adviser, financial adviser, or insurance agent. Before making any financial commitment regarding the issues discussed here, consult with the appropriate professional adviser. This material was prepared by The Partnership Group; accordingly TPG (not MFS Fund Distributors, Inc.) is solely responsible for the accuracy of the content.

For more information or a list of other MFS Heritage Planning educational materials on helping your parents, contact your financial adviser.

© 1997 The Partnership Group, Inc.
MFS Fund Distributors, Inc.,
500 Boylston St., Boston, MA 02116

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