Dear Cathy and Mark,
My 82-year-old father was recently diagnosed with end-stage heart failure. His doctor informed us that he would likely not survive another year. My mother is 78 and has a number of medical ailments, but overall is in good health. My parents have adequate health insurance to cover my father’s medical care.
I have two siblings—an older brother and a younger sister. We don’t know the extent of what my father wants to do as he approaches the end of life, and how we can best help our parents in their declining years. What practical advice do you have for us to help our parents prepare for the inevitable end of their lives? —Carlos
CATHY: Carlos, I’m sorry to hear about your dad’s health. The end of life can be both a sad and beautiful time for families. The most important thing in this season that your family is facing is to have open communication and respect for everyone’s opinion, especially that of your parents. What your dad wants at this point in his life is most important.
In Mark’s response below, he mentions the importance of having a palliative-care doctor on your team. Not all hospitals in the Philippines have this but all medical institutions are now mandated by law to provide some form of palliative care. You might want to ask your dad’s cardiologist or his primary care physician about this. It’s very important for your family to have a meeting with all of your dad’s doctors so that you can be guided and be given a clear picture on what to expect, as well as find out what your dad can safely do given the restrictions imposed by his heart condition.
The situation will be very difficult for your mother. You don’t mention anything about a full-time caregiver in your letter. At this point, it will be very important for you and your siblings to get one for your dad so as not to burden your mom, especially now that she is 78 and has her own medical ailments to deal with. Caregiver stress and burnout are realities in the very senior population. This is something that you will need to address to avoid the potential of having to care for both your mom and dad at the same time.
A year will go by very quickly, so make sure also that all legal and financial affairs are put in order. The most important thing you and your siblings can do at this time is to make life as happy and comfortable for your dad. Make as many good memories as you can during this period, and most of all, do not leave anything unsaid.
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MARK: Carlos, you and your siblings are facing the same challenge that 55 million other families worldwide will face this year—the death of a loved one. This can present an overwhelming number of issues and decisions that your family may face. The death of a loved one can bring out the best in some families and the worst in others. This is an opportunity for you and your siblings to come together and prepare for the best possible outcome for your parent’s tough situation.
Cardiac disease and heart failure are the No. 1 cause of death in the Philippines. Having a good cardiologist to manage your father’s medical and physical needs is important. Thankfully, you have adequate medical insurance, so that’s covered. He may now benefit from the care of a palliative-care specialist. This doctor will work collaboratively with your family doctor and heart specialist to help manage the symptoms of advanced illness such as heart failure, including pain, fluid retention and the mobility challenges that this disease presents.
Additionally, a palliative-care specialist can help facilitate a “family meeting.” This involves getting all of you together to discuss your father’s advance directives—a document outlining what he wants and doesn’t want done should he become unresponsive and unable to communicate his wishes as his illness advances. This helps prevent future family disagreements as everyone is made clear on his wishes and expectations.
“Five Wishes” is a helpful document your family can use to walk through the most important things you need to discuss and have in writing. It can be found at www.fivewishes.org. The five wishes are: 1) the person I want to make care decisions for me when I can’t; 2) the kind of medical treatment I want or don’t want; 3) how comfortable I want to be; 4) how I want people to treat me; and 5) what I want my loved ones to know.
Losing a loved one is never easy. Having these hard conversations as a family is uncomfortable but necessary if you wish to help your parents avoid conflicts and confusion should your dad’s situation become an emergency. Having lost both of my parents to serious illnesses, I can testify to how much better it was that my four siblings and I were clear about what they wanted and didn’t want as the end appeared. We were able to “honor our father and our mother’s” wishes and agree on how we should work together to make sure that what they expressed in writing was what was done when the time arrived.
My heart is with you and your siblings as you face these challenging conversations. It’s the “uncomfortable gift” that you can give your parents knowing that you’ve honored their wishes well.
We’d love to hear from you. Please email us at [email protected].
Cathy is in private practice as a grief, loss, and transitions coach. She is an author of four books, two of them on grief.
Mark has been a registered nurse for 47 years and is an educator specializing in end-of-life care. He was director for training at the second largest hospice in North Carolina in the United States. —Ed.