Many people with a serious disease feel a conflict between keeping a positive attitude to ward off disease while knowing that at some time they will have to accept that they do have a serious disease. When the existence of disease is acknowledged, “fighting it” is another attitude some people adopt. Others prefer to avoid a win-or-lose approach, and, instead, think of themselves and their bodies as one, a team that will work together to deal with life's needs, day by day.

A terminal disease has the power to strengthen healthy family relationships, or shatter already weakened ones. And yet it can unpredictably bring out the best in some people and in others, awaken emotions they can't handle. Some people are uncomfortable discussing death, and others dislike witnessing emotional displays of grief. The ALS Society of Canada has published a helpful booklet on this subject, Coping With Grief, which is available through the ALS Society in your region.

God grant me the serenity
to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.

Social workers, psychologists, counsellors, and support groups can be very helpful. You can learn from those who are familiar with what you are going through, share understanding with others who have the same problems as you, and learn how people with more advanced ALS are dealing with problems you might have in the future. The ALS Society, hospices, and other organizations provide this type of support service to many terminally ill patients and their families.

A person's life with ALS can be looked upon as a slow death, or as an opportunity for enrichment. The choice is yours. If you choose enrichment, it can take many forms. The choices are very personal. You can develop closer relationships with family and friends; make new friends with others who are sharing your experiences and with many other people who are involved with ALS; learn about computers and how to communicate with others through the Internet and other similar services; learn to appreciate other things in the world around you, things that you previously took for granted; take time to read and listen to music and learn more about spiritual awareness. The list can go on and on. It won't likely include everything you've always wanted to do, but it can include enough to give you a full and satisfying life. It all depends on your attitude and imagination.

Hope, faith, love, and a strong will to live offer no promise of immortality, only proof of our uniqueness as human beings, and the opportunity to experience full growth, even under the grimmest circumstances. The clock provides only a technical measure of how long we live. Far more real than the ticking of time is the way we open up the minutes and invest them with meaning. Death is not the ultimate tragedy in life.

It is important to be aware that members of your family and your friends are experiencing emotional reactions to your disease. They may feel guilty that you have ALS and they are healthy. They may also be short-tempered because of the extra daily responsibilities that they face – banking, raising children with less help from you, more chores – all this in addition to the care they give you. They may feel that it is not fair and then feel guilty about reacting this way.

Keeping the lines of communication open is the best way to work out these feelings. Talk openly to your family about how you feel and encourage them to share their feelings with you. If you find this hard to do, you may find it useful to talk with a social worker or other member of your ALS team. He or she may be able to help you and your family to solve communication problems. It is most important that you have someone to listen who will not be upset by what you are saying. The person you need may be one of your healthcare professionals, a friend or a family member.

Members of your immediate family will likely become involved in your daily care and assistance. Most people with ALS remain in the home for as long as possible, and the demands upon family members can be great. Your primary caregivers, such as your spouse, partner or grown children, may find that your care, especially in the later stages of the disease, is taking up most of their lives. It is natural for them to want to give all that they can to help you, but there should be limits to self-sacrifice.

Caregivers must continue to have lives of their own. Time in the company of friends or family who are not sick, in the pursuit of hobbies or activities in addition to care giving, are important refreshers. They allow the caregiver to recover from the stresses of care giving and make him or her a better, more cheerful helper. Do not hesitate to ask other family members to fill in for your primary caregiver while he or she takes regular breaks or, if necessary, arrange for paid help. A social worker may be able to tell you about what types of help and funding arrangements are available.

The needs of a caregiver tend to take a back seat to the needs of the sick person. It is hard to have a serious illness, but it is also difficult to care for someone with a serious illness. Most people, sick or well, feel a combination of some or all of the following emotions at different times when dealing with illness. Most importantly, no one should feel guilty about any of these feelings. They are perfectly normal and to be expected.

Initial emotions

Curiosity Love Closeness and openness to others Hope Disbelief Loss Anticipatory grief Guilt

Erosion of trust Denial Responsibility Long-term emotions Persistence Hope Love Appreciation of the value of life and of others

Sadness Guilt Loneliness Jealousy Annoyance Feeling trapped Feeling overwhelmed

Remember, everyone has the right to:

• put him or herself first
• sometimes make mistakes
• have his or her own opinions and convictions
• change his or her mind or decide on a different course of action
• protest unfair treatment or criticism