The carer journey is different for everyone and your situation can drastically change in an instant, which is why it’s important to be prepared for anything. There are ways to plan for the unexpected and prepare for what may seem at times to be an impossible challenge. At the end of the day, caring for someone is about improving the quality of life of a loved one and there are many ways in which you can do that.

Needs at home

If you are planning to be a carer out of home, you may want to consider what changes can be put in place to make life easier for yourself and the person you are caring for.

Services

There are national, state and local services available that can help you as a carer and the person you are caring for. These services may include support from the NDIS, state-funded nursing services or community-based support programs. There are also many not-for-profit organisations, such as the Leukaemia Foundation, who can give you advice as to what you may need in your home to assist you with your caring duties.

Home modifications

Depending on the layout of your home or the mobility of the person you are caring for, you may need to make simple adjustments. For example, one of the common side effects caused by medications treating blood cancers is fatigue. In preparation for this, you may want to place a stool or seat in the shower or install thick curtains in the bedroom for daytime naps.

Managing behaviour

There is no such thing as a standard blood cancer journey and everyone deals with it in their own way. These emotional responses can be compounded by the side-effects of medication. This may mean the person you are caring from has become irritable, anxious, depressed or lethargic. For a carer, this can be difficult to deal with, especially if these changes are significant.

Improving the behaviour of the person you care for isn’t about supressing negative emotions, but preparing for them and dealing with them when they arise. There are many tactics you can use to benefit your situation as well as the person you are caring for:

• Set a regular routine to combat surprises
• If there is a routine, offer a warning that change is coming to help prepare for it
• Communicate clearly and directly
• Plan for difficult situations and conversations
• Consider how tired, in pain or bored the person you are caring for may be before organising activities.

Sometimes you may feel that the behaviour that is being presented is totally unacceptable or dangerous. In this case, get in touch with a professional who can assist you – whether that be a social worker, psychologist or respite service.

Activities

Even though the person you are caring for may feel unwell or fatigued, it is important to get out of the house every now and then for some kind of activity.

If the person you care for has undergone a stem cell transplant, for example, and is advised to avoid populated areas, in-home activities such as a movie night, jigsaw puzzle or a video game are also good ways to occupy the time.

For those who are able, simple activities that don’t require a lot of energy – such as going to the movies, birdwatching or going to a sporting event – can be a good break. Repeating the same routine can not only get monotonous for the person you are caring for, but it’s good for you as a carer to get out as well.

Transport

For carers who are juggling work and caring, or for those who have limited access to transportation, getting to and from appointments and treatment can be a cause of stress. There are a number of services that can provide some support with transportation.

Leukaemia Foundation

We offer subsidised or free (where available) transport services to transport disadvantaged patients and their carers to reach their treatment facilities and appointments. You can contact us directly on 1800 620 420 or via email at info@leukaemia.org.au. For the latest updates to the transport we can offer during the COVID-19 pandemic, please visit our Transport Services page.

Not-for-profit services

As well as the Leukaemia Foundation, there are many other not-for-profit organisations who may be able to assist with your transport needs including the Red Cross (for patients over 65).

Hospital transport

Some hospitals across Australia offer their own transport services for patients and their carers. Ask about these services with a social worker or your hospital’s administration as the requirements and availability of the service are of the discretion of each hospital.

Commonwealth Home Support Program (CHSP)

Each state has their own CHSP – many of whom have either transferred or are in the process of transferring services to the NDIS. CHSPs offer a volunteer driver service that will be able to pick you and the person you are caring for up from home and drive you to your appointments. There are restrictions regarding condition and age of the patient, so make sure to have a look at their patient requirements.

Public Transport

Many people living with a blood cancer qualify for a concession or health care card which will either provide public transport at no cost, or discounted. Carers may also qualify for the Companion Card which allows carers to use public transport for free if accompanying the person they are caring for. Be mindful that immuno-compromised cancer patients are not advised to use public transport, so make sure to ask your doctor before travelling.