Effective communication with someone you love who is disabled for medical reasons or a progressive illness is often difficult. Roles have changed, and you and your loved one fear the future. Follow these guidelines and your caregiving experience will be more rewarding for you and your loved one.
Knowing: You have to "know" the other person to respond appropriately to their needs. They may have changed, but they are still the same person inside. Keep that inside person in mind at all times. Remembering who that person really is helps you approach caregiving responsibilities in a more personal and intimate manner.
Alternate rhythms: Caregiving is a kind of dance as you both modify your behavior in response to the circumstances and to each other in your new roles. Do the dance. Give and take. You'll find a better balance that way.
Alter personal boundaries: You and your loved one must be flexible about your personal boundaries. Both of you will have to compromise. Your loved one is going to have to accept help, and you are going to have to adapt to spending more time in the role of "giving."
Patience: This goes both ways. You must have patience with each other to get through this successfully.
Trust: You have to have faith in your ability to be a caregiver. Your loved one has to trust you as a caregiver, regardless of the roles you played before the illness.
Authenticity: No matter how stressful the role, if you approach caregiving as something you do from your heart, it will make the task easier. If your loved one senses that you're doing the job because you want to, they'll be more cooperative and more willing to work out the compromises that will keep you healthier and happier throughout the process.
Humility: Be willing to learn from your loved one and avoid arrogance that may come from frustrations.
Responsiveness: This doesn't mean you have to jump every time your loved one calls. It does mean that you need to be sensitive to subtle nonverbal cues and respond to your loved one as the individual human being they were before they became "the patient."
Participation: Your loved one's responses, no matter how simple, open the door for you to more accurately understand what they need, or how much they need. Try to help your loved one transcend despair and find meaning in the situation. If they know they aren't going to live much longer, there's a lot going on in their minds. Help them feel comfortable about communicating their feelings to you, then have the courage to tell them how you feel.
Competence: Learn all that you can about your loved one's condition and demonstrate that you are competent to make decisions about their care. They will relax and become more compliant with the regimens that you develop to give them the best care and organize your responsibilities.
Commitment: Sometimes you've got the job whether you wanted it or not. But if it's yours, commit to it. If you're constantly fighting the idea that you've become a caregiver or if you resent it, you and your loved one will both suffer.
Being 'present': Don't get caught in the trap of just trying to get it all done and working "around" your loved one. Take the time to notice what's in their eyes, their tone of voice, etc. Communicate with touch and words while getting things done. They'll feel more comfortable, less frightened and less of a burden to you.
Non-judgmental: You and your loved one have to practice not being judgmental. You're both learning a new way to live. You have to accept that both of you are going to make mistakes.
Hope: An attitude of hope will help your loved one and remind you that your life must go on no matter how the situation develops. A positive outlook can be infectious for your loved one. Patients often live up to the expectations of the caregiver, whether positive or negative.
Teamwork: Learn to work with your loved one, healthcare professionals and any others involved in the caregiving as a team. It builds confidence, streamlines time and effort and keeps everyone pitching in without feeling threatened or overburdened.
Courage: You're leading your loved one into unknown territory. It can be frightening, but you have to have the courage to go forward as best you can and seek help when you need it. You also must have the courage not to be bullied and to take time out to care for yourself.