We hear the term "hospice" often, but do you understand what hospice care is and how the family copes when their loved one enters hospice? There comes the point in a person's life when they no longer respond to a medical condition's treatment. They may have a serious illness where there is no hope for a cure. Sometimes a person forgoes a treatment that presents little hope for success but would bring a poor quality of life.
When the illness is not responding to medical attempts to cure it or slow the disease's progress fails, hospice care is the next step. Hospice is generally offered when a person's terminal illness has reached the point that their doctor believes they have six months or less to live if the disease runs its natural course.
Priorities for Hospice Care
Comfort and quality of life are the priorities when a person enters hospice care, and the goal is to reduce the pain of suffering that comes at the end of life. Beginning at-home hospice care provides a genuinely dignified, graceful end-of-life experience for your parent or loved one, but coping with it yourself is beyond difficult.
Hospice care is provided either at home or in a facility like a nursing home, hospital, or hospice center. A trained hospice professional will visit regularly, and someone on staff is available at any time, day or night.
The staff is more than just medical professionals. The team includes social workers, spiritual care providers, and other professionals that support patients and their families talk about their fears, anger, and grief.
Health insurance and Medicare will pay for most hospice services, but the maximum length of eligibility for hospice is six months. On occasion, additional assistance may be required - or - the person lingers longer than expected. Long-Term Care Insurance, if the care recipient owns a policy, will typically pay for additional hospice services if required.
Comfort for Everyone at the End-of-Life
The first time my father mentioned it coming back from the doctor, he passed it off as no big deal. The reality ended up being that he needed help from us to find comfort at the end of his life.
Learning how to cope with a loved one entering hospice care required being patient and honest with myself as a human being and is something I continue to work on even now that he is gone.
Coping involves 'feelings.' Feelings include dealing with and expressing acceptance and guilt, for example. You and your family don't have to do this alone. Hospice social workers understand the emotional aspects that are involved in caring for a terminally ill loved one.
Ask Each and Every Question You Have
Most of us don't interact with severe illness, end-of-life care, or loss in such an intimate way until the moment it's happening to our parents. I found every procedure, expectation, and legal process disorientating at the time. The most empowering phrase that I discovered for myself was "I don't understand."
Hospice care teams, physicians, and even family members want to be there to help you all. Asking questions openly and honestly helps the whole family understand the overwhelming information you're being given. These answers will also provide the sense of solid ground necessary to recover from painful news.
Be a Resource for Your Family
When I say be a resource, I don't mean to suggest that it's fair or right for you to bear the brunt of this situation exclusively. I still struggle with resentment, guilt, and pain that being assigned "the one in charge" instilled in me then, and I regret letting it happen.
Instead, I mean to say that your entire family unit will be looking for support as your shared loved one begins receiving hospice care. You will likely be among those trying to understand what you're feeling and trying to process everything that's changing in your world. The greatest gift you can give to your loved one receiving care is to be one among the many who choose to fill their shoes and give others a shoulder to cry on.
Allow Yourself to Express Emotions
One of the most important tips I can offer on coping with a loved one entering hospice care is to allow yourself to feel. Hearing about your parent's terminal diagnosis may create feelings beyond pain or sorrow that are simply too difficult to label or feel like the wrong emotion for the time.
There is such a thing as anticipatory grief that comes with knowing you may lose someone soon or even knowing that life is about to change.
Seeking support through therapy and health venting to friends and family will help you understand how you feel and accept your emotions as fair.
One perspective that truly helped me is understanding that loss and its feelings are intrinsic to the human experience. End-of-life care is there to provide peace and comfort for your loved one, so try to view entering hospice as an experience with perhaps subtle yet overall positive.
Perhaps you will be able to find a positive human experience in this situation as well.
About the Author
Mallory Knee is a freelance writer for multiple online publications where she can showcase her affinity for all things beauty and fashion. She particularly enjoys writing for communities of passionate women who come together for a shared interest and empower one another in the process. In her free time, you can find Mallory trying a fun new dinner recipe, practicing calligraphy, or hanging out with her family.
Contributor since September 25th, 2020
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