The frank reality is that individuals with periodic fever illnesses may be full-speed-ahead one moment and the next become crippled with debilitating pain and/or the sedating impact of pain control medications. The frank reality is that the people we love and depend upon as our intimate partners, our parents and the parents of our children and our children themselves may need us to switch just s abruptly into caregiver mode.

Its not fair! Its least fair of all to our loved ones whose energy and passions can be cut off at the whim of some random (?) endocrin encounter or neurotransmission. But its not fair to us, either. The caregivers.

We do it for love but not without feelings. After the compassion and caring allow yourself whatever sadness and guilt and grief and -yes- anger you feel. This page is about taking better care of you so that you'll be there and able next time, and so that your life remains full and rewarding.

Ask me. I've been there. Done that. Creating this website is part of my therapy.

What's yours?

Chronic Illness
(reproduced 01.01.2007 from October 2005 Tips and Topics : http://www.caregivernorth.org/cgi-bin/content/content.cgi?db=content&uid=default&ww=on&id=156&view_records=1)

Approximately 35.3 million Americans, young and old, are limited in their daily functioning because of a chronic mental health or physical health condition. For the vast majority of these individuals, their family members are the primary health care provider. Whether the member is a child with diabetes or a mother, father or grand parent with Alzheimer's disease, it is the family, first and foremost, that cares for an ill loved one.

One member's chronic illness influences the lives of everyone in the family. Roles and routines change. It may seem as if the medical professionals that care for the chronically ill family member become part of the family. The demands of caregiving must be negotiated. Family members' emotions may be on a continuous roller-coaster ride. On the other hand, families may come together and grow closer. Their lives may take on new meaning. They may find rewards they had not expected on their journey through illness. The only certain thing is that chronic illness is a family experience, one that is shared by all.

Ways in which chronic illness can affect the family?

There are several ways that chronic illness can influence family life:

Daily routines may change because the limitations of the chronically ill family member and the demands of treatment may require that others be more available.

Family members may experience strong emotions, such as guilt, anger, sadness, fear, anxiety and depression. These are normal reactions to stress. It is useful to talk about these emotions with other family members or friends.

Families may need to seek help in sharing caregiving responsibilities; this helps all members feel they are contributing to a loved one's welfare and it also protects any single member from caregiver burnout.

Your feelings are valid, so be easy on yourself to not feel guilty when you've had a bad day. The emotional rollercoaster can take you for a ride on any given day. Find a way to release your anger, sadness, jealousy and elation -- all guilt-free!

The chronically ill member may need to find ways to be as independent as possible, given the limitations that the illness causes.

Research and ask questions to learn all you can about chronically ill family member's condition/diagnosis and potential therapies.

Despite the demands of the illness, families may need to work hard to maintain a sense of "normal" life. This can benefit the chronically ill member, as well; it may help him or her adjusts into family life more and may reduce the chronically ill member's sense of guilt regarding the demands the illness places on the family as a whole.

When you should seek help?

At any time during the life of a chronic illness, family members or the family as a whole may need support from a trained professional. Signs to watch for include:

For example, family members may remain overprotective of the chronically ill member long past the crisis phase. The chronically ill member may feel he or she is being overly controlled and may rebel by not complying with treatment or medication, or becoming angry with family.

Evidence of caregiver burnout.

Oftentimes, caregiving falls to a female member of the family who may become exhausted by the 24 hours per day, 7 days a week demands of the illness. The primary caregiver may be hesitant to ask for help, feeling that it is her responsibility. But she may also show signs that may be a call for help: increased episodes of temper outburst, sustained exhaustion, loss of interest in daily activities, depressed mood, and changes in sleep or eating. These may indicate that the caregiver needs more support and the family needs to be more involved.

The progression of changes in the chronically ill family member.

These changes may be related to illness or personality changes in the chronically ill member. A sudden decline in the health status of the chronically ill member may upset the whole family. The chronically ill member may also experience periods of depression, even thoughts of suicide, which are common with persistent illness.

Stress or conflict among members of the family.

Family members may develop physical symptoms that are similar to those of the chronically ill family member.

In any of these circumstances, the family's primary care provider can act as a resource for referring the family to a therapist who is experienced with illness and in association with other medical professionals.

What kinds of interventions are commonly used?

Families seeking help can expect a variety of useful interventions:

Family Therapy

It is valuable for the whole family, including the chronically ill member, to meet with a qualified Family Therapist. During sessions, the therapist can help the family discuss how they are dealing with the illness, make decisions together, and learn how to utilize their own internal strengths and resources to address problems.
Individual Assessment and Treatment

Some family members may be experiencing symptoms of depression or anxiety that need to be addressed through individual assessment, appropriate medication, and individual therapy in conjunction with family therapy.

Support Groups

Many organizations offer support groups that focus on a specific illness. These groups are a practical addition to family and other forms of therapy.

CAREGIVERS COPING WITH CHRONIC ILLNESS: TIPS You must take special care of yourself You must take special care of your relationships Each day you must develop a "wait and see" attitude for what can and cannot be done that day Do not assume decision-making roles for your loved one. You must not say "you look tired, you need to go and rest". Do say: "You look tired. What can I do to help?" There are new sets of rules for everyone. Remember that your loved one is still responsible for his or her own LIFE. Most Caregivers need and want MORE help and a good nights sleep, don't be afraid to ask. You must develop a personal support system, just for you. Keep your sense of humor and develop new interests. Don't think of your loved one as "the patient". Maintain friendships. Spend your energy wisely. COMMUNICATION, COMMUNICATION, COMMUNICATION

Tips and Topics facilitated by Family Caregivers of Northwest Michigan,
Sponsored by Catholic Human Services, Inc.
Funded by Area Agency on Aging of Northwest Michigan through Michigan Office of Services to the Aging