Taking On The Role of a Primary Caregiver

Taking on the role of a primary caregiver can be overwhelming. The daily responsibilities of providing care, coupled with emotions you may be experiencing with a loved one on hospice, can have a serious impact on your mental, physical and spiritual health.

If you find yourself as the primary caregiver for a terminally ill parent, spouse, or friend, it’s important that you have the support you need. 

Below are some helpful tips and resources to provide care for your loved one and for yourself.

  • Stay organized and be prepared for changes. Keep lists of medications, detailed instructions for administering medications, and operating medical equipment to ensure care is provided correctly even when you aren’t present. Additionally, many life-limiting illnesses may cause quick changes in your loved one’s mood or physical capabilities. Staying organized will help you be prepared for changes.
  • Be a good listener. Allow your loved one to talk about their terminal illness and impending death at their own pace. Don’t force your own opinions, but be ready to discuss various options for end-of-life care.
  • Educate yourself about the illness. Information is available through national associations, medical reference books, and other readily available sources in your library or on the internet. If appropriate, talk to your loved one’s physician about the illness and its terminal stages. Visiting Nurse Association physicians are experts in serious illness care and treatment options and can discuss your loved one’s condition with you.
  • Be compassionate. Let your loved one express his or her feelings about their illness and condition without criticism. Let them verbalize how they are feeling, even if you may not agree. Tell them they are loved and that you are there for them.
  • Recognize your own limitations. If you’re thinking, “Why am I so uncomfortable with this?” you may be feeling that you can’t cope with the situation. If so, try to understand your limitations, deal with it honestly, and seek out other help. Don’t hesitate to call another family member or close friend to assist you or reach out to VNA to arrange for in-home assistance.
  • Care for your own mental, emotional and physical health. Know that you are not alone and there are other people and resources available to help you. If you are feeling overwhelmed, take a break and arrange for someone else to provide care for a few hours or days. Physically removing yourself from the caregiver role can help you reset. Do your best to eat right and exercise regularly to maintain your own health and release endorphins to produce feelings of positivity. Finally, don’t be afraid to seek out counseling services to help you process what you’re experiencing.

It’s important to remember that as a primary caregiver, you too will experience worry, fear, and possibly anger. Loved ones and caregivers may also experience anxiety, dread, and denial upon learning that a family member or dear friend has a terminal illness. These feelings are normal, yet can be overwhelming. If you are the caregiver, you will need to learn to seek and accept help for your own physical and emotional strain. VNA medical social workers and chaplains can support you through this journey. You can rely on us.