Like many other difficult situations, one may encounter in life there is not a playbook for coping with one’s end of life. This rule applies to helping a loved one deal with terminal illness, in this case, there is not a cookie cutter way to handle such a situation, as all individuals experience their mortality and families and feelings of loved one’s experience the prospect of loss differently. In fact, mentally we may not even be equipped to process such an event. One may rationalize it has just bad luck or fate from a spiritual sense; however, it is not a simple or clean process to acknowledge and come to terms with the fact that with a great amount of certainty in a year or six months from now you will no longer be on this earth.
The process coping with a terminal illness becomes even more difficult when a person receives news of a terminal illness in an unexpected fashion. Often a diagnosis for a terminal illness arrives without advanced notice, in many cases the person receiving the news may not have had a clue that he or she was seriously ill. Under these circumstances the burden may be particularly overwhelming for family members and loved ones in addition to the person receiving the diagnosis. In other other cases we are apprised of the risk of terminal illness, particularly in cases where the risk factors for a disease are known or the conditions which cause the disease create a risk such as a lifetime smoker or someone dealing with diabetes.
In this case, the news may be less of a shock. However all of these considerations can be tossed out the window given the fact that we are all different and handle stress or our view end of life differently. Therefore, each circumstance will need to viewed as unique, given our differences and often we do not process shocking information in a predictable manner. Therefore process of coping with a terminal illness is not something that can be taught or rehearsed it is something that you muddle through and do the best you can. So when faced with helping a loved one face a terminal illness, there are probably not solutions to the problem, rather, the best we can muster are tips to cope and get through the ordeal in an attempt to make the process easier.
The following are some strategies that can be employed to help a loved one cope with a terminal illness and by no means are exhaustive or applicable to every situation.
The Role of Hope
Although it may seem counterintuitive being hopeful when facing a terminal illness has been shown to be a productive strategy for coping with impending end of life. It may seem unhealthy for someone to remain hopeful even though all indications point to the fact that he or she will not beat his or her illness. A 2014 article in the International Journal of Palliative Nursing outlines the case of a patient diagnosed with Stage IV lung cancer which gave her a short time to live. The patient, Mrs. S, was hoping for a cure, or at a minimum anything that would prolong her life. While she was able to do so, she engaged in activities with her husband and family giving her great joy. Eventually, the disease took its toll and within a month Mrs. S succumbed to cancer. However, during this process, she was remained hopeful even though realistically from a clinical perspective she should not have had hope.
The article summarizes why this use of hope was in fact not an unhealthy false hope, but rather a way to be hopeful, yet still be realistic. The article states to this fact “Until the very end, Mrs. S’s balancing protected her powerful need to be fully engaged in life while preparing for the inevitable dying. She provided living and, in the end, dying proof that feelings of uncertainty and hope can indeed coexist in patients with lung cancer in the midst of end of life awareness.” Therefore, hope was “not an act of denying end of life, but rather an act of affirming life and what was important to her… Mrs. S wanted to live until she died.”
Hope and denial are important coping mechanisms that can be useful in the right doses to help someone process a situation that in reality is very frightening. Denial is a coping mechanism that can allow your loved one to let reality in gradually as he or she contemplates end of life. When used properly denial is not necessarily bad.
Use Support Resources
As the old saying goes, a person is not an island, or in other words, we do not do well going at anything alone. Dying is one example of something no one should have to face alone. Hearing that your illness cannot be cured can be a frightening experience, coping with this process alone is not something a person should bear in solitude. When helping a loved one cope with a terminal illness, make certain that they understand that they are not a burden and that using support resources around them is what they are expected to do to make the process easier. The best strategy for using support resources involves asking your doctor or hospice representative what support is available to you, which may include information services about your illness, financial benefits you may be entitled to, support groups and counselling.
Along the same lines as using support, simply talking about a terminal illness can be a constructive way to cope and can be therapeutic. In fact, the worst thing a person can do is to avoid conversations about the illness or dying, which could very well foster feelings of fear as the topic of the illness becomes the elephant in the room no one is willing to discuss, but everyone, in the back of their mind, knows there. A constructive strategy is to talk to a partner, family, or friends, or to a doctor, nurse, counsellor, or chaplain. Talking through the process of dying should not be a one-off, rather it should be become an ongoing conversation because of feelings and perceptions as the terminal illness progress.
To provide support to a loved one, invite him or her to talk about his or her fears or even to talk about a completely neutral subject such as happy memories or just normal, everyday topics. In the process of the conversation your loved one might become more open about his or feelings and reveal a fear of losing control of his or her bodily functions or mind or autonomy. In this case talk him or her through what he or she is feeling or just listen.
Living with Uncertainty
Uncertainty is a scary emotion to process. Dying represents one of the great uncertainties in life. However, we all enter the process with a great deal of uncertainty not knowing how we will react or what we will experience in this process. Many patients facing terminal illness experience a great deal of anxiety about the pain that can accompany the illness or anxiety about the pain they may experience in their final moments. Not knowing exactly what is going to happen to you can feel overwhelming and upsetting. It is normal to feel like this, and it is perfectly acceptable, and in fact helpful, to talk to people about feeling uncertain. It may also be helpful to talk to others who are in a similar situation and share how they cope with these feelings. It is perfectly normal to live with uncertainty in this situation and fact, it is something that must be addressed. The uncertainty of this situation can be harnessed in a constructive manner, by reminding the person that we can only control what is within our grasp and that sometimes we must accept some uncertainty and be hopeful that things will not be as bad as we may fear.
Ultimately the process of dying is not as it is portrayed in the movie, it is a complicated process involving a range of emotions, in this sense, one should not expect a tidy answer to make the process more comfortable for a loved one. Rather the process of helping a loved one cope with a terminal illness is a learning process involving patience and understanding. One should not be overly consumed with how they will react when a loved one is facing a terminal illness, rather a more healthy focus is how they will make themselves available to help. Ultimately, the process of coping with a terminal illness is something that the person facing the end of their own life must come to terms with. It is not a situation that can be fixed or carried out without some uncertainty rather it is a process that will likely have high points and low points which patience and understanding can ultimately smooth out.
Superior Home Health & Hospice provides a full range of in-home care, hospice care, occupational, speech, and physical therapy in San Luis Obispo & the surrounding areas, along with many other services. We offer a complimentary consultation with an advisor to help you determine your loved one’s home health & hospice needs. To schedule your free consultation, call 805.742.4514 or contact us online.