INTRODUCTION

By Shirley Soleil

Caregiving is an ongoing activity.  Each and every day you give care, words of comfort and encouragement, do extra chores and errands, and try to be a spouse, parent, friend, wage earner, support giver and an individual meeting your own needs.  It is a demanding, often thankless task.  Are there ways to change this experience into one of more positive value?  I think there are.  If you are willing to take the time, effort and energy to move  into a more positive lifestyle then you can achieve things that you never dreamed possible.

SOME OF THESE CHALLENGES ARE:

• a changed lifestyle
• taking care of yourself
• improving communication

CHANGED LIFESTYLE:

Each individual is really a creature of habit. The same can be said about the family unit. There are unique habits, traditions and expectations within your family. Often, without realizing it you pick up a lifestyle that reflects the society you are living in. The bottom line is you as a family interpret and then act out a lifestyle that is comfortable and acceptable to you. You have a sense of security and safety in this lifestyle.

So what happens when chronic illness strikes a member of the family? The family experience challenges that encourage change. No one likes change but it is necessary if the family is going to survive and grow.

As a Caregiver the first and most important point to remember is to take care of yourself. If you ignore your needs and even wants on a regular basis several things can happen. You may:

1. become angry, resentful, and frustrated. The disillusionment and disappointment could bring you to the point of leaving the family or life itself.
2. get so burned out you get ill or are of no help to anybody else.
3. become so tired and distracted you could have an accident at work or on the road.
4. find it difficult to spend money on yourself because you're more financially strapped.

Others may not understand the changes you make to help yourself. Family members may get upset because you expect more of them. As long as you were willing to do everything, others let you. Don't expect others to jump right up and help. Perhaps you were a Caretaker rather than Caregiver. Be aware of going on "guilt trips".

There are ways to help yourself and others move into a different lifestyle.

Ask yourself  the following questions:

• what is top priority ?
• what can be left until later?
• what can I leave altogether?
• what can I give to someone else to do?
• who is the best person to ask to do this? (Make a list, be very specific, do not be too intense about completing everything, and have fun!)

After delegating work, fight the urge to do it if it is not done right away or the way you would do it. Discuss when it needs to get done. If you're dealing with children and young people, agree on a discipline for a broken agreement. If family members continue to refuse to do an errand or chore, then there is a need to talk about what's really going on. Your child may be reacting to having a different person in charge, may be anxious about what these changes mean, etc.

TAKING CARE OF YOURSELF:

Taking care of yourself may take on different forms at different times. Taking time to vegetate, read, soak in the tub, watch/attend a sports event, go to a church/social event, or a support group is important. It takes discipline and determination to give yourself permission to enjoy life. There are often people in the community; at the local church; social club, Social Services or Home Care to help give you quality time to yourself.

Don't forget to have fun with others. The dishes can wait, the floors can be scrubbed/vacummed tomorrow. Family members may be willing to help with these chores if the opportunity to have fun is at hand. There will be times the family member suffering from a chronic illness can not participate, still take time to do some of the things the rest of you like to do. Then plan something like watching a video with the family member who needs to stay at home. If you live alone with an ill person, you can still follow the above suggestion. Doing fun things helps distract the ill person from his/her illness. Laughter releases endorphins. These neurotransmitters, when released, give pleasure and are a natural narcotic.

If relatives, friends and peers have have stopped interacting with you, work through the grief and anger this causes. You'll discover other friends around the corner in support groups, etc.

REMEMBER TO COMMUNICATE:

Answer questions honestly and with respect. Remember and consider the level of understanding of the person asking. There are no silly questions. Often, the biggest fears of living in a home of a chronically ill person are:

• the sick person going/dying
• getting this illness
• breakup of the family unit.

The main guilt comes from:

• feeling I am the cause of this illness
• wishing the ill person would go away if he/she cannot be well (so things go back to the way they were.)

Making sure there are opportunities for open communication is a challenge but it is the best way of helping everybody deal with the changes.

Communicating openly with the family member who is ill may be more difficult. You need to express your feelings and listen as she expresses hers. You are allies with a common problem. Tell her what you need and ask her what she needs. No human being can meet all the needs of another but we can meet some.

Have an agenda for communication:

• know beforehand what you want to achieve
• rehearse and prepare for scenarios
• pick the right time
• be calm
• send "I" messages
• don't get on the defensive
• find a common ground, make compromises
• "no" needs to be said.

A Final Comment:

Support from friends, family, those who are living a similar experience, and professionals is vital. Maintaining friendships is important to both of you. Change what you do together rather than not see each other. Your loved one is not at fault for her illness and the limitations it causes. When you start questioning the patient, stop and think what it was like to have the worst flu ever. Realize that this is how it is for your loved one twenty-four hours a day, every day. Remember what she was like before the illness; energetic, active in family and community affairs, etc. Do you really think she wants to give all that up for a year or so in bed, not being well enough to go to work, thinking and feeling like she is not a productive member of society?

Be careful not to see yourself as the fixer - you can't fix this - or as a martyr - giving up your identity doesn't help anyone. Make sure to see your loved one as the person you have valued for however long you've been together. Show her how much you appreciate her, her personality, her smile, her words of encouragement, etc. Help her not to use her illness to feel self-pity, to abuse you or other family members, lose the sense of commitment to life, your relationship, the family, moving towards better quality of life and wellness. Encourage her to join a support group, or go to counseling if necessary to help her stay on track.

Caregiver Support groups

The importance of support groups for caregivers can not be stressed enough. There is little attention given to the needs and challenges to those who care for family members or friends who are chronically ill.

Definition of Chronic Illness:

An illness that lasts a long period of time is called Chronic Illness. Generally, there are very slow changes in pain levels. The pain can be constant or intermittent. The illness does not necessarily get worse over time and the symptoms can fluctuate daily. Many chronic illnesses do not have obvious symptoms or signs, i.e. limp. They are often called Invisible Disabilities. Young children and teenagers can suffer from chronic illness.

Time of Diagnosis:

The anxiety and stress of not knowing what is wrong with a loved one is relieved when the doctor gives a diagnosis. Putting a name on the illness means an opportunity to educate family members and friends, especially the primary caregiver about the illness, its affects on the patient and on the family. Then the caregiver can take a more active part in the treatment program.

Because you may not know anyone in this situation, you feel all alone. However, you are not alone. There are many who are experiencing similar feelings and asking the same questions.

Caring for Yourself:

The level of care depends at least partially on the well-being of the caregiver. The feelings associated with caring for someone over a long period need to be recognized and worked through. Some of these feelings are:

Embarrassment - being uncomfortable when in public because of the reaction (staring, asking inappropriate questions) to the person you are caring for, for example, if she is wearing a mask.

Fear - of the unknown and ignorance about the disease can lead to picturing worse things happening then what really is going to happen.

Grief - the grieving process involves several stages; denial, depression, anger, bargaining and acceptance; the stages of grief can occur more than once, last for varying periods of time and even return.

Anger/frustration - a caregiver can get angry or frustrated at herself, the patient, the family, friends, medical professionals, and others.

Guilt - having guilt because you want to be free of the responsibility, experiencing feelings perceived as negative, etc. is normal.

Support for Caregivers:

Caregivers need to have emotional and practical support. The family, friends, or outside agencies may be of help in practical ways. However, they may not/cannot give emotional support. A support group made up of those experiencing similar feelings and challenges can offer much needed emotional support and practical advice.

Benefits of a Support Group:

- Expressing feelings in a safe and secure environment can help a person move forward, emotionally and mentally.

- Listening and acknowledging concerns frees the person to be more creative in finding solutions.

- There is usually more than one way to do things. Being open to alternatives may help you in practical ways as well as emotionally.

- Just knowing that there are others with the same kinds of problems and challenges gives encouragement and hope.

- Sharing information about the illness empowers support group members, information on various issues that come up as a result of caring for someone with chronic illness enables you to make wise decisions.

- Having professionals come in to share relevant facts helps educate caregivers about treatment programs.

- Knowing when the person you care about needs help and when she can do the activity by herself can free the caregiver of some responsibility and give the chronically ill (especially the young) independence, a support group can help you recognize these times.

How do I cope with the household chores?

A professor shared two good ways to help the family pull together in keeping the house tidy. If an object is left in a public place, it goes in a box. Once a week a family meeting is held and the offender is penalized appropriately for leaving the thing in the public area.

When a child refuses to keep his/her room tidy, the door stays shut. You do not enter to get dirty clothes or sheets. Eventually the child will run out of clean clothes. When it is realized that you are not going back to the old pattern of gathering up dirty clothes your child changes his/her behavior. When you change others around you change.

How can I take care of the financial responsibilities, be a good spouse and parent and have a life of my own?

The most obvious demand on the spouse/parent is bringing home the paycheck. We all realize that. However, the caregiver is an individual with needs, wants and dreams. Being a good spouse/parent does mean making sacrifices but it does not mean giving up everything. Ask yourself the question - "What do I want the most?" The answer determines how you change to fulfill your dream. Adjusting things to have time for yourself means rejuvenation and that means having more to give to others. Revising your expectations so you are feeling good about yourself makes all the difference in the world to you and your family.

Here are some points to consider:

- Slot a piece of time just for yourself each day. It may mean rising a little earlier or retiring a little later. Read the paper, watch a video for l5 minutes, walk the dog around the block. Make sure everyone knows of this quality time and help them respect it by telling them why you need it.

- List the jobs/errands/responsibilities in three categories: Has to be done, Can wait, and does not matter. Focus your time and energy on the first. Take into consideration others' lists as well. Fixing a toy for your child can be an act of love and enable you to have quality time with him/her. When someone else can do it, let him or her. Learn to delegate! If you can pay, pay to have it done!

- Remember, a simple gesture like a hug, an "I Love You", renting a movie for the family to watch, snuggling with a loved one while listening to music brings so much more into a family's life than fixing a leaking faucet.

Do I have to give up my friends, social and church activities, support group?

It is important to have outside relationships, people who affirm you as a person, not as a spouse of a chronically ill person. Research studies have shown that having positive relationships, especially friendship helps ward off disease and lengthen life. Caregivers can get ill, so help yourself stay healthy

- keep your friends. Keep in mind that some people may turn out to be "fair weather friends". Good friends understand and respect/support your decision; they do not try to put you on guilt trips.

You may have to change your priorities. Instead of going out four or five evenings, cut down to two or three.

How can we keep our relationship alive when we cannot have the physical intimacy we had before?

Accepting changes in this area is probably the most difficult. There are going to be some real struggles. You know the saying, "It'll either make you or break you?" or "What doesn't kill you makes you strong?" Well, that is where it is at. It is trite to say remember that cuddling and hugs and kisses, etc. are very important. It just does not cut it when you desire the full physical experience. Yes, they are important but practically you may have to take things into your own hands so to speak. In addition, shared sexual pleasure can be experienced in other ways besides intercourse. It depends on you - communicating is very important here but is probably the most difficult thing to do. However, you and your spouse need to discuss this lifestyle change as well as all of the others. What you decide to do needs agreement on both sides. Sex can be a beautiful part of marriage but if it has been a focus of a relationship, you are in more trouble than if it is seen as one aspect of a healthy relationship.

How can I be both parents to my children?

You do not have to be. Your spouse is not gone. You need to notice some of the responsibilities the spouse/parent had to give up. However, only a mother can give a mother's love in a mother's way, only a father can give a father's love, in a father's way. Children have expressed their joy in having the parent at home rather than in a hospital even if the parent is in bed most of the time. There is a sense of security in that parent being present.

How can I ensure my spouse gets to enjoy our children?

It is very difficult for children to understand why a parent cannot go to the Mall, Concerts, Sports Events, anymore. Children are often more adaptable than adults. They adjust well if there is open, loving communication. They can accept the changes if told why they occur and it helps if other positive experiences replace the losses, for example, watching a video while lying on the bed or enjoying a good book or watching the pet play. Yes, it is very difficult to have to say no and explain why a parent cannot do something. Done in the right way can help your child grow up to be a responsible, compassionate and accepting adult.

Children, whether healthy or chronically ill need some basic things from their parents. Your child needs to know he is loved for who he is not for what he does or what he may become. He needs lots of reassurance as he moves ahead, cuddle not coddle him. He needs to know he can trust you, that he can come to you for love, hope encouragement, support, affection and direction that you will believe in him. He needs praise. Praise for all the positives and for how he tries to turn negatives into positives. A child needs to know the boundaries. The boundaries should stay constant. If they change daily according to your moods, the child becomes confused and distrustful. These change as he matures. As the boundaries, expand his sense of responsibility changes. He gains confidence as he realizes that he has learned valuable lessons that lead him to a new level.

Here are some important points to remember when living with a chronically ill child.

The definition of Chronic is ...ongoing or continuous or perhaps the symptoms let up for awhile but the illness is still there. So chronic means your child is faced with challenges other youngsters are not.

How to deal with school, work, play, peer pressure, teacher's expectations, and his illness? How does he fit in? Your child needs help here. What can you do to help?

---Talk to your child about how he feels about fitting in. Does he feel isolated or ostracized because he cannot take part in everything? Develop a positive attitude and do not let your child develop self-pity. Feeling sorry for oneself accomplishes nothing and actually makes the illness worse.

---Talk to his teacher. Explain the illness, its effects and what kind of expectations is practical. Teachers need to understand that children with chronic illness may be too tired to take part in activities, may miss a lot of school time due to illness, doctor's appointments or physiotherapy. They may have difficulty concentrating, need encouragement and need to take part in work and play within limits.

---Talk to his peers, their parents. Invite them to take part in conversation about your child's illness. Answer questions honestly, but briefly.

---Give literature to each, teacher, student, other parents to help them further understand. In other words, take time to communicate, to educate and lend support as others struggle and relate to your child.

In some cases, there will be negative reactions. People feel threatened. If this happened to your child, it can happen to mine. Therefore, out of fear and anxiety they deny your child is ill. People will not want to take time to learn and understand but rely on old ways of dealing with things like ignoring the situation.