The role of a Caregiver during the Transplant Process. Presented by Rochelle Blum, LCSW-C Kidney Transplant Social Worker Johns Hopkins Hospital April 14, 2018

A caregiver is someone who provides care and support throughout the transplant process. Caregivers are a critical part of the healthcare team. The role of a caregiver is can change depending on the type of illness, how sick their loved one is and where they are in the transplant process.

Caring about someone with a chronic illness. Relationships can change – taking on new tasks such as being the sole breadwinner in the family, mowing the lawn, overseeing finances. Being your loved one’s ‘cheerleader’ – it’s important to provide emotional support but this can also be draining at times and sometimes you may need your own personal cheerleader. Learning how to let things go – it’s ok not to make the beds every day. Prioritize the big things and let the small things go. Making ‘me’ time – take time out of your day to go for a walk, rest, meditate, talk to someone such as a friend or family member, clergy or co worker or attend a support group (called to care at Johns Hopkins Bayview 410-550- 8018).

Common Feelings Overwhelmed (not only are caregivers providing support to their loved one, they may also be trying to help other family matters cope). Afraid or Anxious Frustrated Angry (Why me?) Guilty (I’m glad it’s not me, am I a bad person for thinking that?) Resentful (I didn’t sign up for this) A sense of loss or grief (mourning the relationship that used to be or dealing with the uncertainty of hopes and dreams for the future) Often the focus is on the transplant patient and caregiver’s needs go by the way side.

Preparing for the Transplant Gather information (talk to the transplant team, primary medical providers and possibly other transplant recipients and caregivers who have been through this process). National Kidney Foundation 1-855-653-2273, nkfcares@kidney.org, TRIO Making Financial Preparations – investigating potential out of pocket costs after transplant such as medications, appointments and labs. If relocating to be closer to a transplant center look into costs of lodging, travel. Talk to your employer about paid time off, FMLA, etc. Prepare a care plan – be prepared to take time off from work to care for your loved one and to provide transportation to appointments. Involve others who can help and make child care arrangements if needed. Emotional support- Waiting for a transplant can be a roller coaster ride. Establish your own support system (you may have used to only confiding in the person you are caring for, find other outlets for support as well such as friends, family, church.)

Caregiver Role after Transplant Keep a central system for recording information (write things down, keep a schedule for medications, appointments and labs). It’s helpful to sit in on initial appointments after the transplant to ask questions and offer feedback to the transplant team. Take steps to prevent infections by keeping sick friends and relatives away, practicing handwashing, taking responsibility for cleaning up after pets. Identify someone you trust to pass alone important updates to friends and relatives as this can become exhausting for the caregiver or consider sending a mass email or utilizing social media (consider using a tool such as www.caringbridge.org).

Caregiver role after transplant con’t Delegate tasks to others – people often do want to help but don’t know how. Giving them specific tasks is useful, for example asking someone to bring over a meal or mow the lawn. (Try one of these tools to set up a system, www.lotsahelpinghands.com or www.sharthecare.org). Understand that the road to recovery can be ever changing – be prepared for delays or unexpected setbacks that can occur which may result in the need to for your loved one to get an unplanned lab, appointment or even hospitalization. Keep in mind that bumps in the road, even episodes of rejection do not necessarily mean that the transplant will fail. Be patient with your loved one and yourself. Both of you are going through major adjustments after transplant. Some of the medications given after transplant can cause irritability, depression and anxiety. It can be hard not to take it personally but these side effects usually do pass. Make sure you are relaying any concerns to the transplant team.

Roles will continue to change after transplant You may be accustomed to doing certain tasks within the household or for your loved one both before and after transplant however this can change as your loved one starts to gain independence and better health. Communicate with your loved one about their changing needs and allow them to pick up more responsibility as they are able too.

Caregivers Need Support Too. Our Healthcare System is mainly focused on patients. The role of the caregiver can be demanding both physically and emotionally leaving them vulnerable to illness. Often caregivers feel that it’s wrong to ask for help. It’s important to implement the idea of ‘teamwork’ and share the responsibility to prevent burnout. Caring.com offers online support.