A diagnosis of a “Terminal Illness” or “Life-Limiting Illness” can be devastating news to hear, even when someone has been ill for a period of time. For family and friends of a loved one with this prognosis, it can be challenging to know what to say or how to react. Life changes for this individual in a heartbeat and he or she will undoubtedly experience a wide range of emotions, which could include shock, fear, confusion, sadness, denial, anger, depression and guilt. Depending on the stage of the illness, this person can be told they have weeks, months, or years to live.
Forty-two percent of Americans have had a relative or friend suffer from terminal illness or coma in the last five years, but the journey is different for each. There are physical, emotional, financial, and spiritual needs during this time, which require support in varying degrees by family and care professionals. Your hope as a loved one is to support this person as best you can, helping to achieve the best quality of life for however much time is left.
Below are a few ways in which you can support your loved one with compassion, empathy, and effective communication.
The “Little” Things
Most individuals with a Terminal Illness will undergo some form of treatment. Most often, chemotherapy, radiation, or prescribed medications which can result in fatigue, nausea, depression, and sleep-related issues. These symptoms make daily tasks like running errands, cleaning the house, doing laundry, and walking the dog more difficult. Your loved one may not want you to feel sad for them, may not want to be pitied and will probably feel diminished because they are unable to master the things they once could. Offering to help with enthusiasm and sincerity because you want to, rather than because they cannot, will bring relief and comfort to your loved one.
Be specific when you offer to help. He or she may have trouble pointing to a particular need but can choose to accept or decline your offer to grocery shop, clean the house, pick up the kids from school, do some yard work, drive them to appointments or walk the dog. Develop a network of family and close friends who are willing to share some of these items from time to time.
Be the point person and choose people your loved one is comfortable with. Spending time with someone who is ill and confined to their home is important, particularly if they live alone (even if they don’t, you can offer relief). Companionship can help decrease the risk of depression or symptoms related. A Sloan-Kettering Cancer Center study found that terminally ill patients diagnosed with depression were four times more likely to desire a “hastened death” than those who were not. So, it goes without saying that keeping a smile on your loved one’s face can go a long way.
Talking about what’s ahead or simply who won last night’s baseball game staves off loneliness and fear. Sometimes he/she might not want to engage at all, but just to sit with someone may feel better than being alone. Continue to live as normally as you did before the diagnosis. Family gatherings and outings should go on with your loved one included in as much or as little as they feel comfortable participating in. They will appreciate feeling as “normal” as possible.
Be The Second Set of Ears
Even when you are not suffering from a Terminal Illness, hearing and absorbing everything your doctor is saying can sometimes be overwhelming. To have a second set of ears, and for someone to even take notes can be a blessing. If you are welcome and able to participate in what will be regular doctor visits, this can take some of the pressure and stress off the patient. If your loved one is afraid that he/she will not think of all of the appropriate questions or is intimidated by professionals and not likely to ask, talk before the visit and write down questions or concerns and speak on their behalf.
Getting Their Affairs in Order
This statement almost sounds harsh at first hearing, but your reality now is getting “End of Life” details such as care wishes and financial affairs organized. Before delving into what may feel like sensitive questions, ask your loved one if they would like to talk about these details. Listen and respond when they are ready. Often, people with a terminal illness are anxious to discuss because they are concerned about what will happen to family left behind. Some questions almost feel too delicate to ask even a healthy parent or elderly loved one; now they must be considered when facing terminal illness and should be discussed while your loved one can communicate their wishes effectively.
Some people plan well in advance of their death and have communicated these wishes to family members. For the individual who may not have made provisional plans or haven’t shared details with others, questions should be asked:
- Do you have a will?
- Who are the beneficiaries of your estate? If an attorney is not an option, there are reputable online services to assist in creating a living will.
- Do you want to be buried and where? Cremated?
- What do your finances look like?
- Is there outstanding debt?
- Are there passwords and codes for online services that need to be translated to whoever will assume bill paying, for instance?
What do you want your care to look like during this time?
Many patients decide they would like their last days to be at home, rather than in the hospital. Offer to research options for them, such as Home Health Care, Palliative Care or Hospice. Understand what their insurance will cover and what will be out of pocket. Are there certain Spiritual or Emotional caregivers they would like to be in touch with at this time?
Once you are aware of your loved one’s wishes, offer to make arrangements with appropriate Caregivers, Professionals, Friends, or Family, so a desired and comfortable plan can be followed. While this is an unexpected and challenging time for your loved one, it also is for the family members involved. Your support will go a long way in ensuring their final days are as comfortable and peaceful as possible.