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Illness and Your Family and Friends

When one person in a family becomes ill - the whole family becomes ill.
Not literally. This is only meant to say that illness doesn't happen to just one person, it happens to the whole family and the whole network of friends.

What makes the situation even more difficult for many of the ill is that, so often, autoimmune illnesses, immune system disorders, and many neurological disorders are invisible to the naked eye. So it can be difficult to be seen as sick even by close family members and friends; and even when they know you are ill.

You may be so ill that it's difficult for you to participate in family life; in so much pain, that getting through the long hours and the days is all you can manage; or just simply at a loss as to how to ask for help without feeling like a burden to others.

Once again, throughout all the difficulty, your attitude can make an enormous difference. Your attitude can make it easier for others to help you. When you aren't drowning in self-pity, you make it easier; when you aren't looking for sympathy, you make it easier. Most sick people understand these things instinctively, and if they err at all, they err on the other extreme - they hate to ask for help when they need it.

But for both you and your caregivers, the bottom line is the same - the way you can best serve others is by first taking care of yourself. Ask for the help you need. If you live alone, then pick up the phone and call a volunteer organization in your community. There are people who will be happy to come out and give you some assistance. Whatever you do, if you are alone, reach out.

There is special advice for the families and friends of the ill - these are the caregivers. Here are some tips from a wonderful web site, the Family Caregiver Alliance, at http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=784:

"The care you give to yourself is the care you give to your loved one," said a caregiver. Absolutely the easiest thing for someone to say and the hardest thing to accept is the advice to take care of yourself as a caregiver. It is often hard to see beyond the care tasks that await you each morning.

What is shown by study after study is that caregiving compromises health. About 60% of caregivers show signs of clinical depression, and caregivers take more prescription medications, including those for anxiety and depression, than others in their age group. Reluctance in asking for and accepting help is a major barrier to getting necessary respite and support. Who has time to think about breaks when there is a diaper that needs to be changed? Seventy-five percent of caregivers in America are women, some taking care of spouses/partners, some adult children taking care of parents, some parents taking care of adult children. What does taking care of yourself mean, why is it so hard to do, and how do you do it?

Support. Support and coping comes in many forms-prayer, talking to family, friends or professionals, saying "yes" to offers of help, taking walks, reading a book, eating hot fudge sundaes. But most caregivers end up withdrawing from friends and family and feeling isolated and as if no one understands. Support groups can be an important source of understanding and connection.

Guilt. Guilt that "I should" do this or be able to do it, guilt that your loved one won't get as good care if you aren't doing it, guilt that something will happen if you are away, guilt about having a good time when someone else is not. As there is no "perfect parent," there is no such thing as a "perfect" caregiver. And you are not selfish to sometimes think about yourself and your needs and feelings. Although caregivers feel guilty when they get angry or frustrated, these feelings are ok and a way to know how well you are coping. "How can I say it is difficult when I really love this person?" questioned the husband of a client.

Setting limits. Learn to ask for help. The often-heard question, "Is there anything you need?" has but one answer: Yes. "Yes, I need a meal, I need someone to stay here so I can go out, I need some time by myself, I need flowers, I need help in the garden, I need some groceries." Learn to say "no" to requests that are draining rather than nurturing, such as hosting holiday meals. You can still make choices about your life and what is right for you and you do still have some control.

Your Body. Not getting enough sleep is a major cause of illness and stress in caregivers. Exhaustion is one of the main complaints, leading to irritability and then inappropriate anger which then leads to more guilt. Talk with your physician about medication for either yourself or your loved one to help with sleeping through the night. Know the limits of your own endurance and strength. Make sure you have regular check ups and that those "little concerns" about your health are looked into. Exercise is even more important as it gives you a break, combats depression and helps you maintain health. When I talk with caregivers, one of their fears is worrying about what will happen to their loved one if something happens to them. Worrying doesn't help. Taking better care of your health does.

Education. Learn as much as you can about the illness so that you can understand what is happening. Attend a workshop or support group, not just for emotional support but also to learn caregiving tricks to make caregiving easier. You can't know it all; this is a job you weren't trained to do. Contact someone who can help you connect with community resources and use them.

Emotional Health and Respite. Taking care of yourself may mean dealing with family problems. How can you make your siblings pull their weight? Possibly you can't, and learning how to have a family meeting or work around them is essential for survival. One family actually has a chart and marks off what each does so no one can say, "You aren't doing your share." It is easy to become overwhelmed, thus the need for breaks. One caregiver told me that she deals so much better with her husband when he has been at day care, because when he comes home, she is not already frustrated by him. Without breaks, you begin to question yourself, feel inadequate and experience burn out. Caregivers are often mourning the loss of the person "who used to be." Grief and loss need to be acknowledged.

One of the stressors of caregiving is seeing no end to the situation. Having a life and connections outside of caregiving helps you to maintain perspective, so that caregiving doesn't become one's only reality. You might be interested in "Because We Care," a guide to assist caregivers in facing day-to-day challenges, found at www.aoa.gov.

Meanwhile, your best defense is a sense of humor. Find people or situations to laugh at daily. It refreshes the soul and renews your spirit.

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