Cancer, at any age, to anyone, is horrible — the enemy. But when it's a young person? There is an extra sting. Our parents are struggling with their own fragile medical conditions; they have had a loss of friends and siblings in the past couple of months. How can I possibly tell them that their granddaughter has cancer? Our own personal nightmare.
You may be worried that before you have had the "right moment" to discuss it with them, word will travel, letting the cat out of the bag. There are many downsides to that happening. One of which is "why didn't you tell me right away," and also the passage of misinformation. So instead of sharing accurate information from the get-go, now you have to unpack the untruth.
As awful as this reality is for everyone in your family, one of the most significant sources of discomfort and fear is the unknown. If you have treatment information for your parents, aunts, uncles, and other elders in your family, share it. As a follow up to "the bomb," any information you have can help focus the attention on the treatment options, and not just the diagnosis itself. Your plan may include getting input and support from trusted clergy or the social work department where your child is receiving treatment.
They remember when cancer was a largely terminal illness, no matter the origin or treatment. Despite dramatic treatment advances over the last 50-years, many elders still consider cancer a foregone conclusion. Helping them understand what the specialty hospitals and treatment professionals have to offer now, may be a hard sell. Provide them with literature to read (carefully consider access to the internet, which will overwhelm them with all kinds of information, not just what you want them to see, and not always accurate).
If your elder is mobile, going with you to an appointment, seeing the facility, and getting to meet some of the treatment team might be a huge help. If an elder is really struggling, set up a social work meeting when they are going to visit, and have it been a "serendipitous moment" where the social worker happens to be available for coffee, "right now."
It might be more prevalent in their community than they realize. It could be happening to the family next door, the Pro at the Golf Course, or the Bridge partner. However, your senior may not be comfortable sharing this information with their Bridge Club, Book Group, Garden Club, or sports buddies. Everyone is different.
While the focus can be on the child and the nuclear family, all loved ones are grieving and suffering from the reality of this diagnosis. Worrying about "how will they possibly cope with this" is an added pressure on the parents of the sick child. Maybe your folks had a child themselves with a cancer diagnosis. Perhaps it was even a similar situation, but the treatment today is radically different and far more curative than what they lived through.
This kind of impact on a family is akin to ripples in the water from one stone. It may bring back old losses, old traumas, and all the worry and anxiety that was experienced prior. If you add in their own struggling health or declining cognitive status, you are afraid that it becomes a tsunami.
Bring this to the team early on in treatment and get help as you plan to disclose the information to elders in your family. A family meeting, where everyone is free to bring questions and concerns, or a private session with your parents and an oncology professional, is available and encouraged.
Rarely can any members of the team answer the big question: WHY? But sharing data, providing education, allaying fears, and giving support is something that can go a very long way as your elder loved ones process what's happening to their grandchild. Depending on your child's level of comfort with their situation, they may be able to open the conversation with these family members to reassure them that they are confident in their treatment and that "not all of me has cancer."
Keeping loved ones close, informed as much as can be tolerated and managed, and part of the process can enhance bonds, allow them to feel useful and trusted, and keeps the open and honest flow of communication your norm.
It is terrifying for everyone. Don't go it alone. There are experts on your treatment team and in your community, just a phone call away. As Dana Farber Cancer Center used to say, "We are in this…Together."
Joanne MacInnis, RN, is the founder and president of Aberdeen Home Care, Inc., of Danvers, a concierge private duty home care agency in business since 2001. With 35 years of nursing practice, management and administration experience focused on home care and hospice, Joanne and her team specialize in advising and supporting families addressing the elders in their lives retain dignity and quality of life.