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A caregiver can be many things. For transplant patients, the caregiver can be the difference between a successful transplant and a failed organ. Most transplant centers require patients to have a caregiver at all times throughout the process both pre- and post-transplant. Most centers also provide helpful tips and even printed education materials so caregivers know what to expect.
Our discussion group members consist of patients, donors, caregivers or loved ones. Recently, they talked about the role of caregivers and some of the things that they didn’t expect to happen when they took on that role.
Here is a list of 5 things that didn’t always go according to the pre-printed plan of what to expect.
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 you to remember to care for yourself so you can be there for others. But how can you fit it all in? The honest answer – sometimes you won’t.
You have to try to be ok with letting stuff go. Don’t clean the house every week like you used to, 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. 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.
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 not everything goes our way 100% of the time. 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 learning what great things can come from a transplant and how recovery should go (and probably will) ask your transplant team about the worst case scenario. Sometimes our loved ones aren’t happy with their outcome. How will this affect you if the person you are caring for is negative and wish they never would have gotten this new organ? Sometimes patients go through depression – 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 all the time. Have honest conversations with your recipient so you understand how much help they want 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. If you as a caregiver want to go for a run, but the recipient isn’t able to even take a long walk, both of you can be frustrated. 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 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. Some of the 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 burden on their lives. Reach out and get help when you need it.
Finally, we want to thank the patients and caregivers. Without feedback from our discussion group, our patients and their families, we wouldn’t be able to provide the education and help our patients need. Thank you especially to our discussion group. We don’t know if they know it, but they help many more people than they realized each day. If you haven’t already, be sure to take a look at the discussions and participate if you can. 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.
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Throughout the time we have walked beside my sister and her family as she awaits a liver transplant, the focus has been on successfully reachIng the transplant. The myriad of emotions during this stage has been a rollercoaster. Until we read this overview and some of the caregiver posts, we hadn’t even thought of - much less begin mental preparations for - what follows post-transplant. It feels like part #? of the transplant grief and loss process with hoped for acceptance to recovery. Our thanks for the shared information on this topic.
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9 Reactions@aine Each situation is different. I think for my husband, post-transplant was easy. He stayed home for a couple of weeks but my recovery was very quick so I was doing pretty much everything, always be conscious of protecting the incision, very soon. As soon as I got the "go ahead" I was back at my health club using the gym and pool.
I hope your sister recovers post-transplant as well and as quickly as I did.
JK
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6 ReactionsMany thanks for your quick and encouraging reply. aj
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3 Reactions@aine, Your sister and her family are fortunate to have you walking beside them. I hope that she is doing well at this point in her care.
When you are ready for more transplant information, this is where you can find the Mayo Connect Discussion Groups where members are sharing their own experiences and helpful tips. - https://connect.mayoclinic.org/group/transplants/
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4 ReactionsThank you, Rosemary, for your guidance. I have not used social media sites due to privacy concerns. In this situation, it seems I need and want the type of support provided. In the process, I hope I will be able to offer such to others. aj
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6 Reactions@aine, Thinking of you. From experience I know that you are in the midst of a seemingly endless journey with many twists and turns. For me and my husband, we learned to take it one day at a time. And we looked for a bright spot, a blessing every day. Sometimes it was a ray of warm sunshine, or a smile from a stranger, or a day free of appointments. 🤍 You are not alone.
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8 ReactionsI was just asked by a friend who needs a heart transplant, to be his caretaker should he be a recipient of a heart. I live in a different state than this candidate. Could someone please tell me what I need to consider in terms of length of my commitment and what to expect my duties and responsibilities would be? I don't want to commit to something this critical unless I'm certain that I can fulfill what my responsibilities would be.
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3 Reactions@actsoflight Hi and welcome to connect. I myself am a heart Transplant Recipient. My caregiver was my wife and my daughter as a backup. I live with my wife and my daughter is not far. So I would first consider that you would need to be either living with the Recipient for at least a few months. Or be very close. For me there was a lot of things I could not do myself mainly concerning transportation. But also was not able to perform basic duties like lifting more than 10 lbs for about 6 weeks. Then slowly thru exercise was able to get back to normal self care. Driving to the many appointments during the first few months was also required. They let me resume driving at 6 weeks also but not long distance. Fatigue is also a problem at first so anything that takes time to accomplish will get better over time. We live in a 2 story house and even climbing the stairs I couldn't do at first so i stayed in a spare bedroom on the first floor.
One other thing is there is a requirement of biopsies starting bi weekly and slowly extend out to monthly over about a 6 month period and last almost a year but getting further apart as the year progresses and he will need a driver for all of those.
Now this is based on a non rejection basis. If a mild rejection happens the biopsies can be more frequently. The biopsy is the only sure way to verify the heart is not rejecting. They also want the caregiver to come to most every apt I would say for the first 6 months but maybe even longer. I'm now 3 years out and I usually don't need my wife along now so some off this based on covid may be different. But depending on how far away you are may be a factor even for a year. At a year I also had procedures requiring a driver, and even a couple of times during the year up to now. This past year as an example I needed my wife or someone to be my driver after a procedure a couple of times. The full time part was probably only necessary for the first 6 months and then monthly up to the first year mark. I hope that helps
Blessings
Dana
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7 Reactions@actsoflight Welcome to Mayo Connect! We are a caring group of patients, family members, and caregivers who offer support and share our experiences with others along their own journey.
Here is a discussion on Mayo Connect where transplant patients tell their stories: https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/ This is located within the "groups" tab for Mayo Connect, under "Transplants" discussion. Within that same group is another discussion you might find informative https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
I ask @danab to help you understand what may be involved, as he had a heart transplant a few years ago. I was one of my husband's caretakers when he received a kidney. Making sure he took his medications, didn't overdo it physically, driving him to appointments, cooking, and being a positive influence. were involved. I also attended all post transplant appointments, being a "second set of ears", taking notes and asking questions. For me, it was 3 months of post-transplant care to be considered.
We look forward to hearing from you, and answer questions you have. I would suggest you ask questions within this last discussion, to have a bigger audience. How far up on the transplant list is your friend?
Ginger
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4 ReactionsThank you so very much Dana. I sent this on to the person who is in need of this transplant. I live in NYC and he in Mississippi. It would appear that being his care giver wouldn't be a wise choice. There's no way I could be away for all those months. I was also reading about the fact that one never knows when that call "we've got a match" could happen. He's got a little dog that has to be considered that can't be left alone. So one would really have to be ready and able to get to his home.
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4 Reactions