In Partnership with CSL Behring
Having a loved one go through any kind of chronic illness and/or life-changing health diagnosis can be incredibly challenging. There is no simple guidebook for when the unexpected happens, and handling change can be tough when treatment options become more experimental and possible outcomes become less predictable.
Preparing for Change
Going through a clinical trial can be a disorienting experience, not only for the recipient but for their entire support team. It can be difficult to be fully prepared for the changes that might affect the recipient’s treatments and daily ritual.
It is important to remember that clinical trials have safeguards in place to ensure that the participant’s rights are protected. What a participating recipient might need most from their caregiver isn’t necessarily medical treatment or advice– but rather emotional support. This includes:
- Acknowledging their fears and concerns.
- Validating their feelings.
- Listening with the intent of supporting rather than responding.
- Making sure the recipient knows they have someone to lean on emotionally when they are struggling with their physical health.
A Caregiver’s Self Care
As a caregiver, it can easily become overwhelming to listen to a loved one’s experiences without being able to provide direct solutions. The emotional toll that might result from participating in a clinical trial can affect the caregiver just as much as it affects the recipient. As a caregiver it is also important to avoid sacrificing personal health when caring for a loved one.
- Try setting boundaries that allow the caregiver to have personal time for self-care.
- Enlist external resources to allow the caregiver to decompress regularly, such as utilizing other friends and family.
- Allow time for a caregiver to process emotions and prepare for change at their own pace.
Recipients and caregivers need support, especially in situations filled with so many unknowns, such as in the case of clinical trials. Making sure that you are taking care of yourself is crucial to being supportive care partner.
Delegating Care to the Community
While all focus and attention seem to be consumed by medical events, it can be easy for the recipient to lose sight of the day-to-day things that still need to get done. This is something that can be delegated to members outside of their support tier. A recipient may not be comfortable asking their community for help when they need it, so offering suggestions can aid in their ability to reach out for extra care. Additional support can include:
- Sending a quick text at the grocery store to see if the recipient needs anything.
- Having a neighbor mow the recipient’s lawn after completing their own.
- Dropping off gift cards for gas for food or freezer meals for when the recipient needs a quick and easy dinner.
- Inviting the recipient’s kids over for a playdate to get them out of the house.
These are only a couple examples of easy things that can provide immense support for someone going through a health challenge. Never underestimate the value of simply checking in- a small gesture of support can go a long way.
Using Resources and Doing Research
Depending on the trial setting, some hospitals have caregiver support groups, which can also be a valuable resource. If you’re unsure of what support is available to you, it can be helpful to:
- Ask the nurse, coordinator or social worker on your medical team.
- Reach out to other transplant recipients in your area.
- Participate in transplant recipient forums, Facebook groups, etc.
In clinical trial settings where so much is still undetermined, it can be frustrating to try and understand everything or get adequate answers. Your loved one may not have the time or emotional capacity to educate you, nor is it their job to do so. This is a great opportunity to do your own research. You can:
- Speak to the medical team involved
- Read any information provided by the medical team.
- Read online forums and materials related to the specific transplant type.
- Ask questions.
Knowing as much as possible about what is expected, the goals of the trial, and potential side effects can be helpful in assisting and advocating for your loved one. It can be easy to get overwhelmed as a care partner but remember this: it takes a village to get through major changes in healthcare and what your loved one needs most is a strong support system. Just being a supportive presence can help make even the toughest time a little bit easier. Obtaining information on the clinical trial and how to be the best caregiver for a recipient is a step in the right direction.
