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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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@silverwoman Thank you for a well though reply and valuable information. I believe that even tho it wasn't a heart you made some excellent points.
@actsoflight you may want to read the post from silverwoman she has some great thoughts also for your friend.
Blessings
Dana
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4 ReactionsDear Silverwoman, You're truly a Goldwoman. You've been more than generous with your time and the invaluable information you've imparted here. I've passed this along to the individual I've in culling information for. Unfortunately, he doesn't respond in a way that indicates that he's "in the game" and ready to pull his weight. I think that from all I've read here from so many extraordinary people, that it's essential for the potential transplant recipient that they are part of the ENTIRE process. As it turns out, as bad as his heart condition is, he's not even on a waiting list. Until I hear back from him and he tells me that he's ready to jump into this, I'm not going to waste anyone else's time. I even gave him the link to this forum as he asked me to and as far as I know he hasn't joined.
Once again, thank you for your generosity of spirit and information you've imparted. This is an amazing forum.
To each and every individual here on "Connect" I wish you Good Health, Peace, Joy, and a prosperous New Year. XOXO <3
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4 ReactionsI feel so sad for your friend. He is going to miss an amazing journey if he doesn't get his head in the right place.
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1 ReactionHe's 65 and he's always been this way all of his life. People have had to walk away because of how destructive he's been to himself and others. I saved him a while back and there was zero gratitude of any kind. There's a sense of entitlement that I've never seen in anyone else in my entire life. That said, unless he has a miraculous epiphany, I won't do anything more.
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1 Reaction@actsoflight Your individual may indeed be reading the posts. You do not have to sign up to be a member, to read. You sign up if you want to post.
As you have read, and surmised, it is a definite "team thing". Not only the transplant team of specialists, but the patient [recipient] themselves, and the caregiver team. All work together, and need to. In evaluation for a transplant of any kind, the transplant team does a thorough evaluation, not only physical, but mental, also. They want to know the patient is ready to do what is required.
On a similar note, I had a very good friend who turned to me for help, in a mental crisis. I was able to find his "Achille's heel" and convince him suicide was not an option. Severe disappointment that he never acknowledged my efforts.
Please stay in touch with us. There are caring people here, and if you peruse the other discussion groups, you may find a great supportive group for you.
Ginger
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3 ReactionsUnfortunately, I know him like I know the back of my hand. He wants to be spoon fed. Speaking of which, he's morbidly obese and has yet to deal drinking issue. Unless he actually reaches out and tells me he's prepared to do what needs to be done in a timely manner, I'm not going to enable his irresponsible behavior.
Yes, I will stay in touch with all of you. Kisses and best wishes
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2 Reactions*deal with his drinking issue
@actsoflight, I don't believe he would qualify for a heart transplant if he couldn't prove that he is willing and capable of living a healthy lifestyle. It seems almost as the decision for both of you has already been made. You sound like a good friend to have reached out and researched for him and for you, as a potential caregiver. Best wishes!
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3 ReactionsHe's had several heart procedures done. One group that happens to be out of state, for what ever reason, waved his weight issue because if he didn't do the procedure I'd most likely have a major stroke. He withheld his drinking issue from them as well. He's been with the same cardiologist for at least 20 years and, except for being compliant about taking his meds, his weight and drinking continue to be issues.
I live in NYC and he lives down in the Gulf of Mississippi way too far away to be one of his caregivers.
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2 Reactions* he'd most likely would have had a major stroke.