Dear Doctors: My friend was diagnosed with multiple myeloma 10 years ago. His chemo is no longer working, and his doctors say there’s nothing else to be done. He has accepted whatever is coming. He has lost weight, and sometimes the pain is bad. How can I help him?
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Dear Reader: No matter how long someone has been dealing with a serious illness, the cessation of active treatment can be devastating. This is true not only for the person approaching the end of their life, but also for family and friends. The response to this transition often includes a rotating mix of grief, sorrow, fear, anxiety, dread and anger. However, people also often feel acceptance, peace, hope and even relief. Again, these are experienced not only by the individual who is ill, but also by the people around them.
When spending time with someone with a terminal illness, you are looking for balance. That is, you want to be supportive and helpful, but not overwhelm them with your attentions. Hospice care professionals say this can be achieved by asking the person what they need. The answer may include physical tasks and emotional or spiritual support. It is also useful to understand that the person’s needs will change from day to day, and sometimes from moment to moment.
When someone is still living at home, you can offer to help with housework, care for a pet, do shopping or run errands, deal with bills or other paperwork, or help with any medications, treatments, equipment or personnel that are part of palliative care. Small gifts, such as a pair of soft or silly socks, a pretty pillowcase, a greeting card or a small bouquet can brighten a day. Simply sitting quietly with someone or giving them a space to express their fears or worries can be a great comfort.
Some people reaching the end of life get solace from creating a wish list of the things they would like to accomplish or experience before they are gone. This may be seeing a certain film, eating a favorite meal, browsing photo albums and sharing memories, speaking with a religious or spiritual adviser, playing cards or games, writing letters or engaging in texts, phone calls or video chats with people who are unable to visit.
Always check with the person before starting a new task or a project. This keeps them in control of the events around them, which bolsters mental and emotional well-being. It is also important to separate your own feelings and needs from what the person is experiencing.
And this brings us to self-care, a crucial part of helping people who are nearing the end of their lives. You are likely to feel a wide range of complex emotions while your friend is on this journey, and it can take a toll. For that reason, it is recommended that caregivers create a support system for themselves. This is helpful for the duration of the person’s illness, and also for the often-challenging days that follow once they are gone.
(Send your questions to askthedoctors@mednet.ucla.edu, or write: Ask the Doctors, c/o UCLA Health Sciences Media Relations, 10960 Wilshire Blvd., Suite 1955, Los Angeles, CA, 90024. Owing to the volume of mail, personal replies cannot be provided.)