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Caregiver Concerns

Finding out that someone close to you has multiple myeloma may come as a shock, leaving you feeling upset and worried about the future, which is suddenly more uncertain.

For the sake of the patient, you may feel that you need to put on a brave face and suppress your feelings. But honestly sharing how you feel can help facilitate future communication and bring you and the person you care for (and about) even closer.

Where can you get answers to the many questions you probably have?

  • Ask the patient's healthcare team if you can talk to them about what to expect.
  • Call Myeloma Canada, at 1.888 798‑5771.

Getting help

During treatment and recovery, myeloma patients are usually not able to do as much as they could before.

In addition to caring for the patient, you may have to take on responsibilities or do things that you rarely (if ever) did before. Don't allow yourself to become overwhelmed by all this – you are not alone. Healthcare professionals, relatives and friends are there to help you.

  • Don't hesitate to take people up on their offers to help. It will make them feel good to know that they're helping to lighten your load.
  • Across Canada, there are organizations that can provide help and assistance. You'll find their contact details in the "Finding support" section of this website.
  • Your family doctor can also be a useful source of information and support.
  • Ask about the availability of services, such as social workers, dietitians, psychologists and specialized nurses, at your cancer centre or in your health region.

Preparing food for patients

It can be very frustrating to see someone not eating well, especially if you have spent a lot of time and effort carefully planning and preparing a suitable meal.

Try not to take this refusal to eat personally, and understand that it most likely has nothing to do with the quality of your cooking, and everything to do with the fact that there are days when patients just aren't able to eat – like days when they're experiencing severe treatment side-effects.

You can try to gently encourage the patient to eat, but don't push. The patient will start to eat when he or she is ready.

It's a good idea to prepare snacks in advance and have them available for times when the patient does feel like eating. Healthy snacks that are easy to store and prepare include:

  • Fresh and dried fruits and nuts (to be avoided, however, if the patient has diarrhea)
  • Soups
  • Breakfast cereals
  • Yoghurt
  • Dips
  • Sandwiches
  • Raw vegetables 

Communicating with the medical team

Although most of the attention from medical staff is focused on the patient, remember that you are also an important member of the care team.

Don't hesitate to ask questions. Sometimes, you might want to ask questions that the patient would rather not ask (or know the answer to). It may be difficult to ask some of these questions in front of the patient. These questions may be about what is likely to happen, or about what plans to make.

If the patient has given his or her permission, ask the doctor or nurse if it would be possible to speak to them without the patient being present.

Sometimes, it's the patient who is reluctant to ask a question because he or she thinks the answer might worry you, the caregiver. Try to discuss things together before seeing the doctor or nurse, so you know what to ask.

The patient may not always be happy for you to know things that he or she does not, which is why it's important for you to discuss these issues together. In some instances, the patient can write a letter to members of our medical team, giving them permission to share information with you, as his or her caregiver.     

What you need to know to help support the patient as he or she goes through treatment

  • Will the patient need to stay at the hospital? If so, for how long?
  • Will the patient require a lot of care?
  • Will I need to take time off work?
  • Is there other help or support available?

Communicating with the patient

Don't feel that you have to talk about everything immediately. Also remember that listening is as (if not more) important than talking.

Taking the time to really listen to someone, without feeling that you have to find solutions to any problems or worries, may be one of the best ways you can help.

Many of us have an inner voice expressing thoughts that may stop us from having important, but potentially uncomfortable, conversations. Below are some of those "invisible scripts" (do any of them sound familiar?), along with suggestions of ways you might deal with them.    

Thoughts Communication tips
"I don't know what to say."

Often there is no "right" or "wrong" thing to say. You don't need to have all the answers.

Simply listening (really listening) to someone talk about their fears or worries can help ease them.

Just letting the person know you care enough to listen is important.  

"I don't want to open the floodgates."

Often, we feel that we need to stay in control by avoiding subjects that are difficult or upsetting.

The thing is, those strong feelings are there anyway, and the patient may need an opportunity to express them every now and then.

Your being there for him or her, and showing that you care, may help more than you know. 

"I hate it when he or she goes all quiet." 

Learn to sit with the silences, and resist the temptation to rush in and fill them with trivial chatter. The patient may need and/or want time to think.

Remember, too, that not all communication is verbal: holding hands or placing you hand on someone can express more than any words can.

If you think the reason for a silence is that the patient is upset about something, you can gently ask questions (like "What are you thinking about?") that may help to get him or her talking again.

If you think the patient would prefer to be left alone, you can simply ask: "Would you like some time on your own, now?"   

Taking care of yourself

Even the most loyal and devoted of caregivers need a break sometimes.

Taking a break from caring can give you time to think things through, help you de-stress and provide you with well-deserved rest.

Even just taking a few hours off during the day, and getting out of the house, can make a huge difference in the way you feel and the amount of energy you have.

  • You can take advantage of times when the patient is away from home.
  • If the patient is up to it, you might want to consider inviting friends over to keep him or her company for a while.      

It's easy to start thinking that you have to be positive 100% of the time, and that you have to hide negative feelings, like anger, from the patient and other people in his or her circle.

While it's true that positive thinking can help you face the challenges of myeloma, you don't have be upbeat all the time. Giving yourself permission to take a day off to feel sad does not mean that you've lost control and will never feel positive again, or that you don't care. Quite the contrary!

If you feel overwhelmed, and like things are getting on top of you, it's important to make time to talk about how you're feeling with your family doctor, or the myeloma nurse-specialist. By keeping things bottled up, you may end up feeling guilty about repressed emotions, like anger. Whatever your feelings may be, they are neither selfish nor insignificant. And they matter just as much as the patient's do.  

You can't take care of someone else unless you also take care of yourself.

  • Let other people help.
  • Learn about myeloma and its treatment.
  • Take care of yourself: eat well, get enough sleep and visit your family physician if you need to.
  • Take a day (or a few hours) off when you need to.
  • Ask your doctor about home visits by nurses.
  • Keeping a journal or diary can help you explore and express your feelings.