The Circle of Life: Caring for a parent on hospice

By Lorraine Thayer, RN, APN

Many of us have been lucky enough to have someone in our lives who loves us unconditionally.  For many of us it is a parent. The illness and decline of a parent brings with it a host of challenges and opportunities. The challenges emerge when caring for ourselves and our families while at the same time caring for a parent we know we will be loosing soon. Opportunities will appear for healing old wounds and creating lasting memories. Feelings of stress, anxiety, anger, helplessness are coupled with great love and desire to help your loved one during this difficult time. Your hospice team can be a bountiful resource for you during this special time. Here are some suggestions you may find useful for your family:

Educate yourself about your parent’s disease. It is likely that your loved one has been to several health care providers and had many procedures prior to receiving their terminal diagnosis. At each of these appointments your parent heard portions of what they were told. They themselves may be having difficulty understanding what is happening. They may turn to you for clarification.  When they do, you will want to have honest, fact-based answers. While every disease process is different, many follow a pattern of sorts. For you to understand what the disease is and its possible trajectory allows you to be prepared and to feel less anxious.

Become an active listener. Listening makes our loved ones feel worthy, appreciated, interesting, and respected. Ordinary conversations emerge on a deeper level, as do our relationships. An active listener maintains good eye contact. Fight the urge to turn away even if you are feeling tearful. We say so much with our eyes. Keep your posture open. Crossed arms and legs send a message you are not really listening or interested in the speaker. Make time. Try not to ask a question when you do not have time to hear the answer. If your loved one wants to discuss topics that are difficult for you to hear, do not shut them out. If you really feel uncomfortable, acknowledge that and suggest you have that conversation at another time or when another person is available. The dying process often involves life review and at times making amends. This can be a gift for all parties.

Allow your parent to maintain Independence as long as it is safely possible. Always give your parent an option, unless they have requested you manage a situation without their input. Adult children often step in and believe they are helping by taking burdens from their parents. Let your parents identify the burdens. Ask open ended questions such as “how do you want the bills managed?” instead of “do you want me to pay the bills?” This allows your parent to think about what they want instead of just answering yes or no. It also allows you to understand how they are thinking through processes. You may see that as their health declines, those questions cause some distress. At that time you will want to change to a yes-no type scenario.

Take care of yourself. You are a child, spouse, sibling, employee, community member and friend.  These roles are all important to everyone you love and to your own well being. Allow your friends and family to support you. They want to help you.  Learn to say yes.

• “Yes, I would like to go to the gym tonight.”
• “Yes, I love it if you could bring dinner by tonight.”
• “Yes, I would appreciate it if you would sit with my mother tonight while I attend my daughter’s recital.”

If you are a spiritual or religious person, now is not the time to place that on the back burner. If you generally meditate daily, try twice a day. If you attend Sunday services see if there are mid-week services you can attend. Meet with your spiritual resource. Let them know you are going through a difficult time. Ask your hospice team what support is available.

Whether positive, negative, or a combination as mixed as the colors of the rainbow, the emotions that bind us to our parents are strong. When our parents die, our complex emotions live on.