I spoke with Steve Vorseth, a Licensed Master Social Worker in the transplant center at Mayo Clinic’s campus in Phoenix, about a critical member of the transplant team: the caregiver. Here’s what Steve had to say about the vital role this person plays before and after transplant surgery. Thanks for sharing your knowledge with us, Steve!
Why do transplant recipients need a caregiver?
The majority of a transplant recipient’s recovery takes place on an outpatient basis, so the caregiver is there to be their helper in that process. The caregiver accompanies the transplant recipient to all of their appointments, monitors medication changes and vitals, serves as an advocate for the patient, and oversees their recovery to ensure adequate progress is being made. We want the patient to focus all of their energy on regaining strength and healing from surgery, so the caregiver takes on any responsibility that would distract the patient from those goals.
What can caregivers do to help prepare the patient before surgery?
The road to transplantation can be very emotional for the recipient, with a lot of mixed feelings along the way. The caregiver can help take some of the more practical matters off the patient’s plate, such as lodging, looking into insurance coverage and the cost of mediations that will be needed after the transplant. It’s helpful when the caregiver can attend appointments before surgery, too, to ask questions, take notes and be that extra set of eyes and ears for the patient. Finally, we require that the patient and/or caregiver line-up a back-up caregiver who can step in in the event of an emergency, or so the primary caregiver can get a much-deserved break after the transplant takes place.
What else can caregivers do to prevent caregiver burnout?
It’s really important that caregivers accept any help that’s offered to them— again I’d emphasize arranging a back-up caregiver that’s trained on the recipient’s status and medications, so that the caregiver can step away and recharge without worry. Also, caregivers should be prepared for the unexpected. There’s an emotional component to the process for the caregiver, too, and there may be feelings of anxiousness or even resentment along the way. So the caregiver needs to remember that they need care and support, too.
What should caregivers expect after the transplant?
Patients and caregivers often feel an immediate sense of relief and gratitude for the gift of a second chance. However, on top of that, the patient may experience pain after the surgery, medications may cause unexpected mood changes, and there can be intense worries about the organ being rejected. Some of what happens after transplant depends on what was going on leading up to the surgery, too. For example, if a patient’s diagnosis came suddenly and the patient had to go on dialysis, it may have affected the ability to work and support the family, which can be very difficult and cause stress in the family. These feelings are all normal, often temporary, and part of the process.
How do social workers provide support throughout the process?
As social workers, we’re here for the patient and the caregiver. We talk about how to work through any anxiety or stress that’s being felt, and focus on how to make the process easier for everyone involved. Quality of life is really our focus, and it’s important we restore that for the patient and the caregiver.
Are there nuances in the transplant process that caregivers of living donor recipients should be aware of?
Yes, the living donor experience is definitely a bit nuanced. If the donor is a family member, friend or acquaintance, there’s often a larger support network surrounding both the donor and the recipient, and feelings of camaraderie and cohesiveness throughout the process. This is really powerful and there’s a really special bond between the donor and recipient. However, during the immediate recovery, there may be a practical need for some separation. The donor and the recipient need to focus on their own health, and worrying about the other person’s recovery can be very stressful and have a negative impact on their own healing.
Any final words to caregivers reading this post?
Thank you! We are so grateful to the caregivers of our patients! We appreciate everything you do throughout this process.