As the generation of people who are faced with decisions for our parents, we are so very many times their final voice. We are a society that plans for almost all changes in life. We plan for graduation, our wedding, the birth of a baby, college and retirement yet most of us avoid planning for the end of life. There is a good chance if you are reading this; you have a loved one who hasn’t made those final plans. Now it is up to you to help them find the comfort care that they have earned.
Death is a part of the life journey yet our culture tells us that we should fight hard against it. It is a basic instinct to hold on to life and our loved ones. Medical science is making such astounding growth. It allows someone to be kept alive yet the quality of life that we all deserve is not addressed. How do we help our loved ones both live and die with dignity? When there is an illness, home health care services are a support to investigate.
I am not writing this to say I have answers. I will provide some questions for you to think about and use as a starting point for discussion. I will also share the story of my family. Please understand that being the final voice will leave you somewhere on a continuum between frustration and peacefulness. I am hopeful that these ideas will help lead you toward peace.
To be able to make decisions for your parent(s) or other loved ones you must know their wishes. This is not about your life and what you want but their life and what they desire. If the first time that you ever discuss these wishes with your parents or other loved ones is when they are critically ill, it is so late. When there is an illness the emotions tend to take over. Saying good-bye is hard and the closer that good-bye is to reality, the harder it is to be down-to-earth. Encourage your loved ones to share what they want their end of life to be like. Advanced care planning can help you with this. Have this conversation early, often and with the entire family. It is ideal if those plans have been made, communicated and are in written legal form. In reality many times that doesn’t happen. If that is the case, you are probably looking for an answer.
Making that Decision When It Hasn’t Been Made
If your loved one is still able to talk and be a part of their plan, it is essential you include them. Remember, it is about their life! All family members should be integrated in this dialogue. Together make a list of the things that are important to him/her in life. Talk about quality and quantity of life. Questions are listed as a starting point for the discussion. You will have to facilitate this conversation to truly give a representation of his/her life.
- Discuss if quality or quantity of life is more important to your loved one. Give examples from your loved one’s life to prove the answers. This is crucial to painting a true picture of their desires. One very simple example could be that she prefers a special chocolate over a full bag of just any chocolate. Another is he may have always purchased a pair of expensive shoes instead of having 10 pair of less expensive ones. The more examples the better representation of their life.
- How does your loved one want their last days to be? Once again give examples that lead you to this conclusion.
- How did your loved one spend their time throughout life?
- How important were friends and family in their daily lives? Did they surround themselves with other people or cut themselves off from the outside world?
- What role did their religious beliefs take?
- If needed, do they want their last days with in home health care?
As an illness advances and causes undue suffering it may be time to let go. If your loved one is fighting a terminal illness, you need to give him/her permission to stop the struggle. Hospice home care is an amazing support service. The staff is trained to help you and your loved one with this journey.
My surroundings growing up were unusual in that Dad was a funeral director and Mom worked with him. Our normal conversations at the dinner table were oftentimes about death. I understood that death was a part of life. I actually thought everyone understood this but only in adulthood have I realized my background gave me that capacity.
My parents chose to make sure all three of their children understood both in conversation and in written legal form what their last wishes were. That doesn’t mean it was easy for me to listen to. I can remember casual conversations when I answered, “I don’t want you to talk that way. You will always be here!” Although I was an adult, that was a child talking who was not ready to advocate for her parents. Everyone will die and we need to embrace that.
Being the Final Voice
Dad was in the hospital for 5 days before he passed. For the first 4.5 of those days we tried to find the medical answer. We met with the doctor the last day Dad was alive and I remember his conversation so clearly. He gave us the options that were there and then said, “If this were my Dad I would call Hospice nursing and make sure he was comfortable.” We were so blessed to have an advocate for Dad in that doctor. Mom, my sister and I were at the hospital and we talked to my brother who lived out of state. Dad had always focused on quality of life. If he could have spoken for himself Dad would have said a resounding, “NO!” to a feeding tube. There was amazing peace in knowing we did what Dad would have done. At 4 p.m. the medical interventions were stopped and Hospice Care Network took over. The lights were turned down and we sat and talked to Dad. We reassured him how we would take care of things. At 11:45 p.m. he peacefully passed. It had been an honor that day to be his final voice and it continues to be something I will always treasure.
MaryAnn Bliss DeVries
Wings of Hope Hospice Volunteer