Some general information for family/carers can be found on the Keeping Me Well website here. We have also put together some information that might be more specific to family of those undergoing BMT or CAR-T.
It can be really difficult when a loved one has to undergo BMT and CAR-T therapies for many understandable reasons. Leading up to treatment family, carers and friends are usually involved in appointments, and in particular with CAR-T therapies where a designated carer has an important role in supporting the monitoring for side effects post discharge. They need to be well informed about the treatment and understand what is required. This can feel like a big responsibility for family, carers and loved ones and they may find it difficult to find time for and care for themselves. They can experience similar feelings as the patient and find that they feel anxious, low in mood, angry and struggle with uncertainty and loss of a sense of control over their lives.
Sometimes family members and carers may feel helpless in terms of what they are able to do to support their loved one, particularly leading up to and during treatment. Patients might be focused on getting through their treatment and feel they have something to ‘do’, whereas family can find it difficult to know how best to support their loved one. Family and carers can find the isolation aspect of treatment difficult, being unable to visit the hospital when their loved one is undergoing a demanding treatment. It can be hard to feel disconnected from them. Healthcare staff will do their best to keep you updated if your loved one is finding it difficult to communicate on the phone or feels too unwell.
Once patients are discharged home, how families and carers adjust can depend on various factors. The following will all influence how everyone copes with the adjustment:
Some families and carers say they can find the change in roles in the relationships difficult, for example changing from husband or wife to carer. Family and carers can feel very responsible for their loved one’s care and put the needs of the loved one before their own. Whilst this is likely to be necessary during the pre-treatment and acute treatment phase, if this extends beyond this for a long period of time it can lead to carer distress and burnout. Caregivers can experience a sense of loss and grief for their previous relationship, lifestyle and future. There can also be a sense of frustration towards the partner. Family and carers can also experience levels of distress that make it difficult to cope and function, and if this is the case it is important to seek appropriate support.
On a more positive note, some patients may experience the treatment as a time at which to affirm their relationship with their family and actually find it brings them closer together.