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TAKING CARE OF YOU WHEN CARING FOR A LOVED ONE WITH HIV OR AIDS

By Strength for Caring

As a caregiver of a loved one with HIV or AIDS, it is important to understand your own needs for rest, food, enjoyment, and relaxation on a daily basis to remain physically and emotionally effective. Only by taking care of you can you adequately care for someone else. It is important to be realistic about what you can expect from yourself, and keep in mind that nobody is perfect.

It may be helpful to look at your past coping patterns to determine your strengths and weaknesses when dealing with stressful and demanding situations. It is also important to assess other current stressors, such as family, work, and financial matters. It is also important to be aware of any changes in your routine that may have arisen due to your caregiving responsibilities.

You can help yourself with time management and reducing stress by using some of the following ideas:

Identify any tasks at hand
Prioritize the tasks
Accept help and delegate tasks to others! Friends, neighbors, siblings, and even children may be willing to lend a hand if you ask.
Discuss caregiving demands with healthcare professionals, particularly if the tasks are difficult for you to manage.

It can be difficult to take care of someone else if you are sick, or upset, or tired. That’s why it is important to get enough rest and some exercise so you can remain strong in body and mind. It is also very important to take some time off, see your friends or family, go to the movies, go shopping, or meet someone for a cup of tea. Many AIDS service organizations provide something called “Respite care,” which can help you take time off, as they will send someone trained as a caregiver for someone with HIV/AIDS to your house to help your loved one. This lets you leave the house for a while, even if it is just an hour.

It is hard to remember while you are caring for someone else, but you should take care of yourself first.

Feeling Overwhelmed

You may feel overwhelmed and confused when you learn your loved one’s disease is progressing. Here are several strategies to help you cope with feeling overwhelmed:

Try not to make important decisions when upset. Sometimes decisions must be made immediately, but they can often be delayed. Caregivers can ask a healthcare professional about timing of decisions.
Take time to sort things out. It is important for you to take some time to allow your thinking to become clear. Different people need different amounts of time. Caregivers should give themselves enough time to become more emotionally stable so that they can make plans and decisions with a clear mind and more peaceful spirit.
Talk over important problems with others who are feeling more level-headed and rational. When feeling very upset or discouraged, you can ask a friend neighbor, or family member to help. They may bring a calmer perspective to the situation as well as new ideas in dealing with the problems you may be facing.

Anger

You may feel very angry sometimes when caring for a loved one with HIV/AIDS. It is okay to feel this way at times, and perfectly normal. Feeling angry is okay as long as you act on these feeling appropriately. The best way to deal with angry feelings is to recognize them, accept them, and find some ways to express the feelings appropriately. If you don’t deal with your anger, it can get in the way of trying to live your life and care for your loved one. Here are a few strategies that may help you deal with feeling angry:

Try to see the situation from the other person’s point of view. Recognize that other people, including your loved one with HIV/AIDS, are under stress too. People react in different ways to the stressful events in their lives.
Express anger in an appropriate way before it is out of control. If you wait, your anger may lead to actions and words that you may later regret. Anger that is out of control can cloud your judgment.
Find safe ways to express anger. This can include things such as beating on a pillow, hollering out loud in a car or in a closed room, or doing some hard exercise (be sure to talk with your healthcare professional before embarking on an exercise regimen). You can take a break from the caregiving situation for a while, such as leaving the room or going for a brief walk. Try to calm down before going back, and deal with the cause of anger.
Try not to feel guilty about feeling angry. Anger is a natural response to a difficult situation. Guilt can make people feel that they are the only cause of the problem, when in reality there are many causes. Guilt can get in the way of dealing with the real problem and with the appropriate ways to express anger.
Talk to someone about your anger. Explaining to another person why you feel angry can help you understand the reasons for your anger and why you react as you do to situations. It can also help you put things into perspective.

Fear

You may become afraid when someone you love has a serious illness. You may not know what is in store for them, or for yourself. You may be afraid that you cannot handle what may happen. Here are several ways that may help you handle your fears:

Learn as much a possible about what is happening, and what may happen in the future. This can reduce fear of the unknown and help you to be realistic so you can prepare for the future. You may want to speak with your loved one’s healthcare professionals and ask questions about what to expect. You can also ask other people who may have cared for, or are in the process of caring for someone with HIV/AIDS.
Talk to someone about your fears. It may help to explain to an understanding person about your fears. This may help you think about why you feel afraid, and can help you gather your thoughts.

Loss and Sorrow

A serious, life-threatening illness can bring on a great sense of loss and sorrow. You may feel sad that the plans you had for the future may not be fulfilled. You may feel the loss of the “normal” person you love and the “normal” things you and he or she did before the illness.

You may want to talk to other people who have had similar experiences. People who have cared for someone with a serious illness may understand how you feel at this time. They may be willing to listen, and help you work through feelings of loss.

Guilt

Many people caring for someone with HIV or AIDS feel guilty at some time during the illness. You may feel guilty because you blame the person for their illness. You may feel guilty because you are well and your loved one is sick.

Feeling guilty is understandable, but it can interfere with being a good caregiver. Guilt may make you think about things you could have done wrong, while many problems have several causes.

To solve a problem, you should work towards forgiving yourself and the other person. Here are some other ways of coping with guilty feelings:

Talk to other people who have gone through similar experiences. It may be easier to see a situation objectively when it happens to someone else, and people who have gone through similar experiences may understand where you are coming from.
Do not expect YOU to be perfect. Expecting perfection from yourself can cause guilt to be a regular part of your loge. Remember that everyone makes mistakes from time to time.
Do not dwell on mistakes. You can accept mistakes and get beyond them as best as you can, and learn from them. You will be more effective as a caregiver and in helping your loved one when you feel your best.