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From Caregivers to Other Caregivers: Shared Advice and Experiences
Posted: Feb 22, 2024
From Caregivers to Other Caregivers: Shared Advice and Experiences image

There's nothing like being a caregiver to someone that you love.

Not only can it be emotionally draining and difficult to watch your loved one go through treatment, navigate employment with a terminal or chronic cancer, and feel the brutal side effects of myeloma treatment, but it can become impossible to find time to take care of yourself, your loved ones that you are in charge of, keep the house clean, complete your own work if you are still employed, and all the while stand as a support for your loved one as you face one of the hardest challenges you've experienced in your lifetime. 

Simply put, being a caregiver can be physically, emotionally, and mentally draining. 

That being said, there is no one that can help a caregiver more than another caregiver. This is someone who simply "gets it," understands where you are coming from, has no desire to judge but has ears to listen, and can also share important advice and experiences that they have learned. 

In our recent Myeloma Caregivers event, myeloma caregivers gathered together to listen to experiences and share advice with one another. I published another article on what others should know about how to best care for caregivers, but I wanted to publish a separate article for the caregivers themselves. 

Below, I have included advice from our meeting, shared by caregivers, for caregivers. Maybe not all of it will apply to you, but hopefully knowing that you're not alone in this journey and hearing advice and support from others in the same situation can be helpful to you. 

Seek Support 

  1. Connect with mental health professionals when needed. Caregiving is a hard task to carry alone. Your loved one's specialty center or community office should provide names of professionals willing/able to help you. 
  2. Seek financial resources. So many financial resources are made available through nonprofits, local funds, pharma support programs, and more. You can look here, HealthTree Financial Resources, and contact the social worker at your loved one's specialty center to learn more. 
  3. Join caregiver support groups. Join our HealthTree Myeloma Caregiver group, and look for other caregiver groups in your area. They can be myeloma specific or just general cancer caregiver support groups. They can be in person or virtual. Connecting with other caregivers can help validate your experiences and feelings, allow you to make new friends who understand you, and can be a great place to network to find other experts or areas of support as well. 
  4. Seek a Coach. You can join our free Myeloma Coach program to connect 1:1 with other caregivers (or others who have areas of expertise you are interested in). You can also look outside of HealthTree for certified, trained life coaches if this is something that appeals to you. 
  5. Learn to ask for help from strangers/new acquaintances. Sometimes, you are in a new place and don't have your normal support system around you. There may be times when you need help from people you don't know. Don't be afraid to put yourself out there. 

Take Care of Yourself 

  1. Participate in new opportunities. Consider joining a new club or program through your local community center. Take up new hobbies that you have always wanted to try. Remember that your life is just as important as it was before, and your happiness matters. 
  2. Keep up old hobbies- if you're a reader, make sure to have a book to read or make time for a visit to the library. If you're an artist, make sure you make time to be creative as often as you can. Go fishing, hiking, or whatever it might be to maintain your hobbies and things that make your life enjoyable. 
  3. Keep your body moving. Make sure to move your body via walks, gardening, cycling, swimming, dancing, or whatever way your body likes to move. Take time to get that needed exercise every day- remember, exercise/movement can cause a release of endorphins that make your life more meaningful. 
  4. Make a hair, nail, or spa appointment, pick up some at-home care items at the local grocery store, and take time to care for yourself. Watch your favorite movie or TV show, eat at your favorite restaurant, call your best friend, and make sure that you are filling up your cup. 
  5. Consider traveling- if you and your loved one are healthy and in a place to travel, make sure you do so! These don't have to be extravagant trips, but even getting out of the city can help you get out of the "cancer mindset." 

Mental Health Tips and Tricks 

  1. Stay away from Dr. Google! Many better sources exist in the world than googling your disease or symptoms. Turn to trusted websites of advice or education like HealthTree Foundation for Multiple Myeloma, International Myeloma Foundation, Multiple Myeloma Research Foundation, or Cure Today, to name a few. Ask your doctor/physicians what other trusted sources of information they recommend. 
  2. Create cancer-free zones. Consider not talking about cancer after 8 p.m., scheduling cancer-free nights with friends to watch movies or play games. 
  3. Adopt personal mantras- mindfulness practices like personal mantras can help you gain perspective. Consider one like "I believe I can get through this." 
  4. Journaling- keeping a journal can help you keep track of your victories and help you focus on things outside of cancer. It can also help you process the diagnosis, the side effects, and more. 

Other Tips for Myeloma Caregivers 

  • Read Tom Brokaw’s “A Lucky Life Interrupted” 
  • Use the words “terminal cancer” with unhelpful people in order to get the help that you need 
  • Establish agreements between you and the patient to reduce fear/stress. Determine responsibitlies between the two of you and be flexible 
  • If you’re a veteran, file a claim, make them tell you NO 
  • Check with the pallative care team at your facility for help, this is not just an end of life service 
  • Medicare Part D no longer requires you to pay any money after you have reached the “catastrophic” amount. Learn more here: $2000 cap can help out of pocket drug costs
The author Audrey Burton-Bethke

about the author
Audrey Burton-Bethke

Audrey is the Editor for the HealthTree Foundation for Multiple Myeloma. She originally joined the HealthTree Foundation in 2020 as the Myeloma Community Program Director. While not knowing much about myeloma initially, she worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys iced chais from Dutch Bros. She also loves spending time with her supportive husband and energetic three-year-old. 

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