Tips for the Transplant Caregiver

A caregiver plays a vital role in the journey of a transplant patient assisting in the complex array of appointments, medications, and help with daily living. Most transplant centers require the presence of a caregiver throughout the entire process from pre-transplant preparations to post-transplant care. Transplant centers provide helpful tips, education materials and appointments with social workers so caregivers know what to expect.

Our discussion group members consist of patients, donors, caregivers and loved ones. They frequently discuss the role of caregivers and the unexpected events that can happen during a patient’s course through transplant.

Here is a list of the top 5 surprises that caregivers didn’t expect to face, and some helpful tips to be ready for the unexpected.

Not enough time in the day.

In a perfect world, we would have time to care for our loved one, work outside the home, care for our children, clean, do the shopping, exercise, and cook healthy meals. Every doctor and transplant team member will tell caregivers to remember to care for themselves so they can be there for others. But how can you fit it all in? The honest answer – sometimes you won’t.

The best advice – let it go. Don’t deep clean the house every week. Do it every other week. Grocery shop online while you are waiting for appointments with your loved one and pick it up on the way home. Maybe it’s time to try one of those healthy meal delivery services so you don’t have to cook a couple nights a week. You could have the pharmacy deliver medications if that’s an option in your area.

Most importantly, don’t be afraid to ask for help. This is very hard for some of us, but it’s often necessary when you are trying to do more than is physically possible. People are willing to help, but sometimes they need to be asked and given a specific task. Don’t be afraid to reach out to other family and friends to see if they have any spare time or resources to assist you or the patient. Watch this video to learn more about how to care for yourself and ask for help when you need it.

Know the worst-case scenario – even if you never have to experience it.

Transplant is successful most of the time, and patients go on to recover and live a great life. But sometimes the unexpected arises. There are ups and downs to recovery from major surgery. Not everyone gets better overnight and not every patient fits the mold that the doctors hope they will fit. People change, diseases relapse, the unexpected happens, and we need to be prepared.

After familiarizing yourself with the benefits of a transplant and the typical recovery process, ask your transplant team about the possibility of poor outcome and what that might look like. Sometimes our loved ones aren’t happy with their transplant. How will this affect you if the person you are caring for is negative and isn’t happy with their choice to have a transplant? Sometimes patients go through a sad period – they can’t do what they thought they could and are recovering slowly, or they are sad that someone had to die to give them their new chance at life.

All of these are rare circumstances, but they are possible, and you should be prepared for a less than optimal outcome after transplant. Knowing what could come is the first step in learning what to do to help.

Don’t assume the patient needs you 24/7.

We have all experienced someone who tries to help too much. Remember the last time you just wanted to be alone? Patients who are doing well after transplant may not want you around every minute. Have honest conversations with your recipient so you understand how much help they desire from you. Don’t assume they need you all day every day, because you might be doing more work and causing more stress than you or the patient needs.

When you are healthy and active, it can be frustrating when the recipient is not.

Especially in situations when the caregiver is also the spouse, it can be frustrating for both people when there is a difference in activity level. The caregiver wants to go for a run, but the recipient struggles to take a short walk.  Don’t give up on your plans. This situation can be helped by the bullet above – don’t assume the patient needs you 24/7. Most of the time, you could go for your run and take a short walk with the patient when you return. Or find an activity that both of you can do together. Most of the time physicians want transplant recipients to be active when they can, so this plan can benefit you both.

Consult your transplant center for help ANY TIME.

Transplant teams have nurses and social workers who want to assist you with caregiving challenges. Don’t let the job of caring for a loved one become a burden, because they don’t fit the mold of a model patient. Contact your patient’s care team for assistance, advice, or to share changes in the patient’s recovery. Significant changes in personality, ambition, or abilities might be related to their medication or their organ transplant and should be discussed with their care team. At the transplant center, we also care deeply about the caregivers. We want our patients to do well, and we want their friends and family to be able to assist them without transplant being a heavy burden on their lives. Reach out and get help when you need it.

If you haven’t already, be sure to take a look at the discussions from our online transplant discussion group and participate if you wish. You won’t regret it and may even be able to help others understand transplant and recovery better.

If you are a caregiver, were you given enough of the “real” information about what to expect?

HELPFUL LINKS

• Learn more about our discussion group at Mayo Clinic Connect
• Explore Mayo’s Transplant Center.
• Request an appointment.