How to partner with your loved one during appointments
You want to support your loved one with their healthcare team, but how do you do so, while helping them keep their independence?
Striking a balance during consultations
You may be a valuable source of strength for your loved one.1 However, as much as your loved one may want you there, they might also want to feel in control of their own life.2 It may be helpful to agree before each appointment what they would like to talk to the doctor about and what questions they would like to ask.2
You will need your loved one’s permission if you want to take the lead, so make sure this is what they would like.2 If you have a list of things to discuss with you, you can help them by making notes and speaking up if anything is missed.2
For example, if you have helped them work out what matters most to them, you may be in an excellent position to support them during appointments with their healthcare team. You will be able to help their doctors to understand what their priorities are, so they can find a care plan to best suit their needs.3
Being gently assertive with the healthcare team
In supporting someone with MM, you may find yourself learning about different aspects of their care. This can include their diet, mental and physical health, symptoms and treatment plan.1
You have your loved one’s best interests at heart, and so does the healthcare team. So, ask any questions you may have. Make the best use of your time by knowing what you’d like to say. The handy pre-appointment checklist could help give you a head start.
Who to speak to about everyday questions. There may be different healthcare professionals you can speak to about troubleshooting questions and answers. Make sure you have a few different numbers and email addresses to contact in case you need them.
Who to speak to if your loved one experiences side effects, symptoms, or something that worries you. If you have a situation that concerns you, make sure you know who to contact quickly. Different healthcare professionals may be able to treat symptoms and side effects and pass any concerns on to the rest of the team.1
Whether the healthcare professional has a lot of experience with MM. A haematologist who focusses on MM will be aware of the latest research and treatment options. It’s worth knowing how much each member of your loved one’s team knows.1
If another MM specialist has seen your loved one’s care plan. Even if the doctor is an MM specialist, you can always request a second opinion at the start of treatment and when changes are made to a care plan.1
If the healthcare professional can explain something again. The healthcare professional will understand that this is a difficult time and will want to talk you through things.4 Make sure you both understand what’s been said before you leave the appointment.
Tips to brighten appointment days
Some people plan a reward or treat for the end of each treatment cycle.4 This could help give you and your loved one something to look forward to, but you don’t have to wait that long.
In general, you can help keep your loved one’s spirits up by doing something enjoyable every day.4 On appointment days or days when your loved one has tests, they may feel anxious.4 You might like to arrange a way to lighten the mood and improve their wellbeing on these days.4
Take an activity to appointments if there’s a wait. Download something to a tablet and watch or listen with headphones or take a book to read. If your loved one is too anxious to concentrate, consider a crossword, sudoku, word search, or a mindfulness colouring book for adults for a short burst of distraction.
Find out if there’s something you can do near the appointment. This might be going for a cup of tea, visiting a nearby gallery or finding a local park.
If your loved one is tired, arrange something closer to home. Have a film or TV programme set up at home for after the appointment, get some snacks, and spend quality time snuggling on the sofa.
Consider arranging something tasty for lunch or dinner. Just make sure the healthcare team agrees with your choice and your loved one has an appetite. Having a favourite meal to look forward to could help them focus on a positive end to the appointment and might also keep their energy up.
References
- MMRF. Caregiver guide. Available at: https://themmrf.org/wp-content/uploads/2021/05/Caregiver_Booklet_2021_04132021.pdf Accessed: May 2024.
- Myeloma UK. Infopack for carers of myeloma patients. Available at: https://www.myeloma.org.uk/wp-content/uploads/2021/09/Myeloma-UK-Infopack-for-carers-of-myeloma-patients.pdf Accessed: May 2024.
- Auclair D, et al. Patient Preference and Adherence 2022:16;573-85.
- Myeloma UK. Infopack for relapsed and/or refractory myeloma patients. Available at: https://www.myeloma.org.uk/documents/infopack-for-relapsed-and-or-refractory-myeloma-patients/ Accessed: May 2024.