[00:01]
Lucy Murphy: Hi, my name is Lucy Murphy. I am one of the Victorian Myeloma Specialist Nurses, and I also have the pleasure of facilitating an online Partners and Carers Support Group once a month.
Today, I will be presenting a carer’s toolkit. The goal of this toolkit is to understand the role of a carer and the different types of support they can provide, but also the importance of seeking support for yourself as a carer of someone who is living with myeloma.
If anything today provokes any feelings or questions that need clarifying, please contact one of the nurses at Myeloma Australia.
[00:39]
The role of a carer looks different for each individual. It may involve helping for a few hours, or it might be a full-time caring role. It may also be paid or unpaid.
We are going to go through some of the different roles of a carer. However, the role is not limited to the following. We have listed some of the common and frequently challenging roles and responsibilities that carers take on.
Practical support might include finding a way to get your loved one to their appointments through transport. It might involve attending appointments and helping them understand the information that is provided.
It may also involve managing medications or assisting with everyday activities, such as preparing meals or completing household chores.
[01:33]
The role of a carer also includes advocating for your loved one.
Learning about a complex disease and the medical jargon that comes with it can be extremely overwhelming. This also includes understanding blood tests and diagnostic procedures.
Developing this understanding allows you to advocate for the person living with myeloma and support their needs and wishes.
[01:55]
Another role of a carer is providing emotional support.
Due to the nature of myeloma, caring can be extremely emotionally exhausting. As we know, myeloma is currently an incurable disease. Seeing your loved one experience it can feel like an emotional roller-coaster.
Sometimes things can move quickly, and sometimes they can move slowly. Carers often take on a lot of this emotional weight. We often see the effects of this ongoing support as carer fatigue.
[02:25]
Caring for someone with myeloma can be deeply meaningful. However, we acknowledge that partners and carers typically take on a great deal without even thinking about it.
This may include a physical burden, such as driving to appointments, completing additional household chores, assisting your loved one with mobility and sometimes helping with personal hygiene.
It may even lead to you neglecting your own physical needs, appointments and self-care.
The emotional impact may include stress, fatigue and the additional pressure caused by possible changes to work and finances. You may experience feelings of being overwhelmed or frustration with the healthcare system.
You may also have constant, exhausting thoughts such as: Are they okay? Are they in pain? Is the myeloma responding to treatment? What is the next blood test going to show?
Again, this demonstrates the emotional fatigue that can be experienced due to the nature of the disease.
Some people may feel grief for the life they thought they would have at this stage with their family member or friend.
Partners and carers can often feel guilty about needing a break, or they may feel as though they are not doing enough.
[03:43]
There is also a social impact. Caring may affect your relationships and social life.
Constantly relaying health updates to family members and friends can be exhausting and time-consuming.
Relationship dynamics can change, and we often see this following a new cancer diagnosis. These changes may affect intimacy or communication.
Your social life may be limited because your loved one is immunocompromised and needs to minimise their exposure to other people.
Your social life can also be affected by the emotional and physical demands of caring, giving you less time to refill your own cup through social catch-ups and hobbies.
[04:31]
You might find that you are more irritable, emotionally detached or lacking motivation. These may be signs that you are experiencing carer burnout.
I want to highlight that carer burnout is not a failure. It is a sign that you need further support.
We will speak more about available support in the upcoming slides.
[04:52]
What does informed decision-making mean?
It means understanding the available options and their possible benefits and risks, and choosing what best aligns with a person’s values, goals and quality of life.
Myeloma is often a long-term, relapsing condition, and treatment decisions may need to be made at multiple points along the way.
How can I help as a carer?
You can attend appointments and take notes about key information, help clarify what was said and ask further questions.
You can support the person to express their preferences and concerns. Advocating for their goals is key.
If decisions are feeling overwhelming, you can seek further support and speak about your options.
It is okay to ask for more time and clarification. You can ask for something to be explained in a different way.
Know that you can always seek a second opinion, and it is okay to change decisions over time.
To receive help with informed decision-making, you can contact one of the Myeloma Specialist Nurses and book a Telephone Support Line call through the Myeloma Australia website.
[06:06]
Caring for someone who lives with myeloma can often bring unexpected practical and financial challenges. Knowing what support is available can help prevent carer burnout.
Practical support may include help with transport to appointments, medication management, household tasks, meal preparation, managing paperwork and other activities.
Financial support to consider includes Carer Payment or Carer Allowance.
You can also consider workplace flexibility by speaking with your employer about sick leave, carer’s leave or potentially arranging flexible working arrangements.
There are also patient-assisted transport schemes, or PATS, and concessions that may be available to help with medications or transport.
The type of support you need may change over time.
A social work referral through the treating hospital can help you navigate some of the paperwork and the different services that are available.
I highly recommend accepting any help that is offered.
[07:13]
Now, let’s talk about self-care for carers.
As we have discussed, caring for someone with myeloma can be extremely physically and emotionally demanding. Over time, carers may put their own needs last, often without realising it.
To practise self-care is to protect your own capacity to care.
We spoke about some of the common signs that may lead to carer burnout so that you can identify them and seek support.
These signs include constant tiredness, feeling emotionally drained or irritable, difficulty concentrating, neglecting your own health and feeling isolated. However, the signs are not limited to these symptoms.
Self-care does not need to be expensive or time-consuming. It might involve taking 10 minutes of protected time to prioritise your own needs.
This may include having regular meals, staying hydrated, talking to someone you trust and rediscovering hobbies that bring you feelings of calmness and joy.
[08:16]
What does emotional self-care mean?
It means acknowledging your feelings and seeking emotional support, whether that is through support groups or helplines.
Remember that you are allowed to have your own needs and goals too.
Instead of completing the exhausting task of messaging multiple people with health updates, we recommend creating a private online group to send updates to the people who need them.
Let others help. Accept help when it is offered and delegate tasks where possible.
Reaching out for professional help can give you protected time to prioritise yourself. It can also provide you with tools to help you show up for yourself and for your loved one living with myeloma.
[08:59]
Communication and advocacy are important.
Communication is key from both sides: the treating team and the person receiving care. You need to be able to communicate with one another.
As a carer, advocacy may be part of your role. If your loved one is not feeling well due to the disease or treatment side effects, it is important that you speak up for that person’s needs.
When there are delays, confusion or conflicting information, you can sometimes be the person who helps clarify that information.
Advocacy also means ensuring that the person receiving care retains their autonomy and that people respect their choices.
[09:39]
Now, let’s talk about planning for the future together.
When do we start planning?
Planning can begin at any time, including at diagnosis, during major treatment changes, during relapse or progression, or when support needs increase.
You can always revisit and change your plans.
Planning for the future together is important because it can help reduce anxiety around change, ensure wishes and goals are clear, ensure support is accessed as early as it is needed, and create trust and shared decision-making.
Good planning means recording and understanding personal values, culture and family needs, as well as what brings meaning, comfort and dignity.
It may involve considering the balance between treatment side effects and quality of life.
Planning for the future and documenting these decisions protects choice and provides clarity for the future. Planning itself is an act of care.
[10:30]
Navigating the different resources can be overwhelming. We have listed some of the most accessible resources.
Advance Care Planning Australia helps people record their values, treatment preferences and wishes for future care.
There are also state-based advance care directives. Each state has its own forms and processes, and hospitals and GPs can help with these.
Carer Gateway is an Australia-wide service that provides emotional support, practical advice, counselling and respite options.
Another resource is Centrelink, which is part of Services Australia. Centrelink provides information about Carer Payment, Carer Allowance and related support.
On the right, you can see previous recordings if you wish to watch more of our online carer resources on the Myeloma Australia website.
If you need support accessing these resources, please speak with your local hospital about a social work referral, contact your GP or speak to a Myeloma Specialist Nurse at Myeloma Australia for help navigating them.
[11:42]
To summarise today’s carer’s toolkit, your role and support are a pivotal part of the experience of someone living with myeloma.
We would like to acknowledge the impact on carers as they experience their loved one’s myeloma journey.
Finally, planning for the future can reduce stress and uncertainty. As we mentioned, plans can be ever-changing.
Thank you for being a pivotal part of the myeloma community.
