When a loved one is diagnosed with myeloma (or really any chronic disease), the feeling of shock is overwhelming. There are many different thoughts that start to run through one’s mind. Most frequently, one wonders “How am I supposed to care for my loved one?” Upon embarking on this difficult and unfortunate journey, it is important to know the basics of caregiving. Of course, everything will not be learned at once—but getting a head start can most certainly help. Three cancer caregivers shared their insights on what they wish they would have known at the start of their individual journeys with their loved ones.
Get as educated as possible regarding the patient’s disease and treatment options. Often, it is best to get information from reliable sources rather than “word of mouth” or protective family members’ opinions, even when they mean well. It is also important to be informed on caregiving to be more aware of how to better fulfill one’s role.
“Don’t accept the first diagnosis and treatment plan if they don’t feel right to you,” says Ken Owenson, caregiver and husband of a cancer patient. “You have some time, and it’s a good idea to think it through. It’s really important to go to a facility with a caring atmosphere and staff.”
“You think you’re going to remember everything the doctor tells you, but you don’t always,” says Michelle Turner, caregiver and wife to a cancer patient. At doctor’s appointments, a lot of information is given, so notetaking is a good way to keep track of important details. A notebook can also be used to write down questions for future doctor appointments or keeping track of the patient’s symptoms.
Many patients and caregivers report several benefits from talking to people during their experiences. It is also a great way to help and sympathize with others going through the same journey.
If you get rundown, sick, or depressed, it is hard to do anything for the patient.
“[I] felt guilty at first when [I] would leave [my] husband for short periods of time to take time for [my]self, but [I] eventually grew to realize how important it was. I love to walk, I like to sit down and read whenever I have a chance, and all of those things help," Turner says.
In situations like this, a patient can get frustrated easily and take out his or her anger on those close to him or her. Sometimes the caregiver needs a reminder that the loved one is just not feeling well, and that’s the way most people act when they aren’t feeling well.
Treatments sometimes cause side effects for long periods of time—months or even years. It is important for caregivers to be prepared for any time duration. Although no case is typical, these are some general guidelines that can help a caregiver get started in such an important role.
about the author
Myeloma Crowd Editorial Contributor, Nursing student, and cancer advocate.