When Your Loved One Is Diagnosed With A Terminal Illness
Today I had a conversation with the wife of a 70 year old man who was just diagnosed with Stage 4 Pancreatic and Liver Cancer. There is no cure, just a treatment plan to try and reduce the tumor growth and buy him some time. They have also connected with a major institution for a second opinion and for eligibility in a clinical trial. Like others in their shoes, they are shocked, angry, depressed and overwhelmed.
Her husband denies he is depressed, but he hasn’t bathed or changed his clothes in 3 days. He spends his days watching television. When the wife asks him how he is feeling and what he is feeling, he answers her with “What do you want me to say? I’m dying”. She doesn’t know what to say or do to help him cope with this devastating diagnosis. She’s getting angry at him because of his unwillingness to share his feelings. Anger is how she normally deals with stress.
Denial, anger and depression are all stages in the grieving process. When one partner is in the stage of denial, and the other is angry, this can result in much relationship conflict. We talked about the wife meeting her husband wherever he is emotionally and that she needs to find a way to release her anger. Taking a walk, focusing on her passion for quilting, calling a friend, spending time with a grandchild, taking a hot bath or shower. She cannot force her husband to open up to her, although she needs that for her own mental health. She can only support him where he is. She needs to explain to him from a calm space that it’s important for her to know what he’s feeling so she can support those emotions, and she needs to know how he’s feeling so she can advocate to meet those needs for him as well. She needs to avoid asking him these questions on a regular basis, but she needs to be sure he recognizes that she is there for him whenever he wants to talk and regardless of what his needs might be. It is his job to share those needs with her as they arise.
She also needs to assure him that they will not focus on dying as they move forward, but rather on the joyful living of whatever time they have left together - moving into their new home, decorating their new home, spending time with their beloved family, grandchildren and dear friends, catching up with those they haven’t connected with in a long time. While over zealous laughter and joking is not usually helpful, true expressions of emotions are beneficial and should be the focus. It’s perfectly OK to cry and laugh and joke appropriately. These are human emotions. These are human times. These are trying times. Finding the irony and/or humor in the moment is helpful to coping and leading a “normal” human life. It is also beneficial to reminisce and share memories which validate a life well-spent.
Everybody responds to stress differently. Each person has their own unique mechanism(s) for coping. This is usually the same go-to behavior one has used during other life crises they‘ve faced. When faced with catastrophic life crises, such as the diagnosis of a terminal illness, individual coping skills may be overtaxed and inadequate to meet the crisis. This is the time that seeking out support is critical for one’s mental health wellness. I encouraged the wife to find a caregiver support group to help her during this crisis. I encouraged her to find a support group or person for her husband. I encourage her to speak with her husband’s primary physician about ordering a mild anti-anxiety or anti-depressant drug to help with coping.
We talked about shared decision-making and how important it is for her husband to be involved in every decision. In order to do that, the healthcare team must be transparent with all aspects of the diagnosis and treatment plan. Pain management must be a priority intervention, and needs to be re-visited continually. Discussion of the therapeutic use of marijuana for pain management should be discussed with the oncologist as to its legality in their state, along with its pros and cons for the particular diagnosis.
Palliative Care services should be requested early on in the diagnosis. Most lay people associate Palliative Care with Hospice Care because they are often bundled together in conversation and locale. Palliative Care is about living, not dying. It is about helping patients with chronic illness live with the symptoms of their disease. It is about helping with symptoms such as the inability to sleep (insomnia), the inability to take in oral nutrition, the management of pain. Do not hesitate to call in Palliative Care. Discuss this with your loved one’s oncologist or primary care provider. Most health insurance plans pay for this level of care.
The husband has been retired for several years, and ironically, the wife retired last year. They have been enjoying their retirement by traveling and spending time with their five grandchildren who live locally. They recently sold the home where they raised their own three kids, and are planning on moving into their newly constructed dream retirement home closer to their grandchildren in a few weeks. Early retirement gave the couple a chance to enjoy last year doing lots of the things they dreamt about doing in their retirement. It has given the wife the freedom to become full-time care partner/caregiver for her beloved husband. Moving physically closer to their children will certainly be a huge factor in the level of caregiving support that the wife can hope to receive and will undoubtedly need. There are no coincidences in life.
The most important thing is for the care partner/care giver to openly accept the challenges of such a role. It is a 24/7 role. It can be a long role. It can be a thankless role. It can be an isolating role. It is a demanding role. It is a rewarding, yet heart and back breaking role. It is the ultimate challenge to the marriage vows - “…in sickness and in health…”
