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    • Life With Multiple Myeloma
    • Aug 03, 2019

    Caregivers: How Do I Help My Multiple Myeloma Patient?

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As a caregiver, supporter, friend or family member, it can be hard to know exactly how to help your myeloma patient. Your loved one has the disease, but sometimes it can feel as if you are carrying the weight of it just as much. It can even be confusing figuring out how MUCH to help.

There isn’t a road map or recipe to navigating a cancer diagnosis, though that would make your role much easier. However, we can offer suggestions from fellow caregivers of how to help your myeloma patient. Of course, remember that each situation is different. A different patient, a different caregiver, a different way of approaching treatment, and different outcomes. But these are suggestions that can be applied individually and with flexibility. Above all, remember to support your patient and support yourself.

Listen

Listen!! I’ve gotten better at listening to his complaints vs trying to debate them. –Jen M.

Encourage him to listen to his body and support that. If he’s nauseated, and a certain food sounds appetizing, I make that food. If he’s tired, then he sleeps. I encourage him to drink water and take walks with me. —Rosemary D.

Help Them Be Independent

I set up a schedule for meds, which also includes spots for him to document blood pressure, pulse, glucose, etc. This allows him to be self-sufficient. They can lose so much self care. —Debbie S. G.

Pre-cooking and freezing healthy meals when I’m away. My husband, though independent with self-care, would not have the energy to cook whole foods. —Lisa M.

I let him be independent. Even if that means he misses med doses or cancels appointments. I only help now when he specifically asks for help. I used to do everything–meds, appointments, cooking cleaning, mowing–everything! He feels useful when he can do for himself. —Tina C.

I don’t make a fuss if we need to cancel plans because he’s not feeling well, or just too tired. I give him small chores to do because he feels guilty that he can’t help me around the house. I tell him every day that I love him and need him, and that I am with him through all his ups and downs. —April H.

Do What You Can–By Any Means

I managed all his meds – refills, sorting and filling the weekly container, making sure he took them. I did grocery shopping and got all his favorites that he only liked. Went with him to appointments so I could support him and ask questions. I let him rest and didn’t force him to do things. I understood how badly he felt and didn’t judge him. So many people didn’t get this and then he’d over-exert himself and end up sicker, leaving me to take care of him. —Cindy B. W.

Just be there. —David A.

Be Organized & Prepared

I track all of his biweekly lab results in a spreadsheet, and this helps me prep for the 3-month checkup and discussion with the oncologist. It is also reassuring to him to see the numbers every 2 weeks and know that he doesn’t need to worry—that we will (hopefully) see changes coming gradually, rather than be surprised at big changes later on. —Donna N.

I stay informed by reading in this and several other groups. I am able to give him the low-down on possible side effects and efficacy when he gets changed to a new drug. He has told me many times how much he appreciates how in-tune I am with multiple myeloma. —Liz R.

Don’t Stress Too Much!

We just roll with it, he takes his meds or not…he eats what makes him happy (within reason)…9 years from diagnosis with amyloidosis thrown in, he’s still rocking after 9 years. —Kathryn N.

We don’t dwell on it. It lurks in the background of our lives and when it comes up, we deal with it until it goes away again, like a giant game of wack-a-mole. We get to be normal for a bit longer and that is just what we need. —Patti A.

Stick By Their Side & Make the Best of It

I manage his meds and appointments. He has not had to receive one chemo treatment alone. I had to miss 4 times in a year but his sister, dad and daughter went with him. (He likes the cafe there – so we have lunch while waiting and receiving treatment- doesn’t make it seem so bad) we go to the gym and try to keep active while he is in full response and keeping him as healthy as possible. —Laurie S.

I let him be…I learned I can’t do everything. It’s too exhausting. I think time has given us perspective…it’s been over 5 years since his tandem transplants…you can’t keep going at the same pace that we did at the start, when there was chemo and appointments galore and all the meds. He hasn’t been on chemo now for over two years. Yes, there have been repercussions from that time, but we can deal with those. We take one day at a time. As someone mentioned earlier, enjoying the good days and dealing with the not so good days. Being thankful for having another day to move forward. —Carolyn P.

Keep his spirits up. His nature is naturally pessimistic and I’m a natural optimist. In addition to all the other things I do, it’s my #1 job to kick his butt right out of those deep blue funks and back into living whatever life is left, not sitting on his butt waiting to die. —Sheri H.

We have adjusted to the new normal schedule and are okay with just taking full advantage of his good days. We also celebrate each month his lab numbers are still within range, and leave the hospital in an upbeat mood as we head back out into an old normal life for a day and many times more than one day. Positivity plays a big role in our lives. —Judith L.

Take Care of Yourself, Too

Just being here with him. And allowing myself to do things with friends. —Jane B. B.

Take the stress and carry it. But don’t share it. Easy to type. Hard to do. My husband has PCL and the doctors said to quit working. He’s 55 and we own our business, employing 20 people. We have done this for 20 years and I said, “You’re done. I got this. Your job is to focus on health. My job is to help you and run our company.” 3 months in and it’s tough but is helping him so much. Clean eating, less stress, and providing comfort are what I’ve done. All while still trying to remain optimistic, positive, not coming home stressed and trying to take care of me too. It’s a lot. Find time to live, love, laugh and enjoy. —Kati B.

 

About Author

Erika Johnson

Myeloma Crowd Editorial Contributor, Nursing student, and cancer advocate.

4 Comments

  1. Nancy Stephens August 8, 2019 at 4:35 pm

    Where are the comments from men caregivers?!
    Not all patients are men!
    I can testify to that, I was diagnosed 11/18.

  2. Audra Spreeman August 8, 2019 at 8:06 pm

    Thank you for all of these comments, each one has given me comfort and a little bit of hope. I think the main thing I learned from reading these is that I can’t do everything and I have to let him be him still and I can’t get upset or feel like a failure if he misses a dose of meds one night. I also have to still let him be himself, so if he wants to just sit or do nothing that day, that’s ok.
    I also wanted to make a note that I realized while reading these is that every single piece of advice given except for one, came from all women. Is multiple myeloma more common in men or are women just more willing to leave comments.

  3. Tricia Neal August 12, 2019 at 5:31 am

    All of these are so true. My husband was diagnosed with smoldering myeloma in 2014, had a stem cell transplant in 2015, was then diagnosed with leukemia in 2017 and passed away in early 2018. We had 47+ years of marriage and was very blessed with two children and two wonderful grandsons. It was a journey for our entire family but we were blessed to have had him for so many years.

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