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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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@actsoflight What feelings do you experience as you come to this realization that your friend may not be a viable candidate for heart procedures like a transplant? Sadness, anger, pity, frustration, some or all of these plus more? How will your friend respond to you when you tell him how you feel? You have reached out, spending a fair amount of time searching for information and you deserve kudos for that. Remember, even though your situation has not turned out favorably, those questions you have asked have helped others who are in a similar spot.
Ginger
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2 ReactionsI feel anger and resentment. I've gone to doctor's appointments with him and at least 2 of those times I've heard him successfully deceive the medical staff about issues that were very important for them to know.
His primary care cardiologist has his hands full with him on many levels. He's extremely impatient and 'plays' at being grateful. He's got lots of internal rage that is sometimes released, passively or aggressively, on those who don't deserved it. I've attempted to tell him to seek counseling as did one of his doctors. I went with him the one and only time he went. He never went back and wouldn't discuss the issue any further.
He's yet to thank me or show gratitude for any of my efforts. I even sent him 2 emails a asking him if he's participated in any way with Mayo Clinic's Connect. I haven't heard a word back. Knowing him as well as I do I believe he expects me to say I'll be his primary caregiver and go flying down there to handle everything for him.
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1 Reactionp.s. You asked, "How will your friend respond to you when you tell him how you feel?" He'd never allow me to express those feelings and if I did, he'd, interrupt me, erupt like a volcano, and then hang up on me in mid sentence.
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1 Reaction@actsoflight Be satisfied in your heart and mind that you have done what you can/are willing to do. There is an old saying about "not being able to change the stripes on a zebra" or something like that. Take peace in your heart and mind that you have extended yourself as far as you are comfortable doing. If you choose to stop at this point, feel secure you did as much as you did. Your friend may need a severe wake-up call to understand his role in all of this. We each have experienced people who believe they have no responsibility in their situation. Be strong for yourself. Feel free to reach out to me in a private message if you feel the need.
Ginger
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2 ReactionsThank you Ginger.
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1 ReactionQuite frankly, I don't know how his cardiologist who knows how impossible and in so many ways this patient is. This doctor's staff and colleagues have had bad encounters with him and try to avoid dealing with him. I've tried to temper him and sometimes it worked and but most of the time it didn't. It usually revolves around him not doing things in a timely manner and then blaming others for his mess up.
I understand that there are only 2000 hearts available a year and well over 3000 patients needing hearts.
Dana, I know this post is several years old, but I wanted to thank you because it is so helpful. I have a friend who is going on the heart transplant list at Mayo in Arizona as well. I live a few miles from there and would love to be his caregiver and help him but trying to figure out from a practical standpoint how to make it work.
Do you think it would be realistic to have a few different caregivers who alternate?
Thanks again and I'm so happy you got your heart transplant.
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4 ReactionsHi rare candy, Yes on the multiple care givers. I had 2 my wife and daughter. But the important part is that the caregiver is available for the initial Appointments. You'll have to check on if both have to be there since in my case the primary was my wife and she went to every appointment. She actually stayed at the Hospital many days and nights in my case. They had a fold out chair that made into a bed. So my experience my not be typical. I'm pretty familiar with the transplant Doctors.at Mayo Arizona and they love questions to make sure your fully aware. Now as for my secondary of my Daughter she did not attend the appointments at all but was on standby if needed. She did visit the Hospital a few times but wasn't at any of the initial ones.
So by your question I'm thinking your thinking to play like a tag team and have multiple people actively attending to the care and going to appointments. You'll have to ask your team on that one. I know once the transplant is complete I can see having different drivers to take him to the hospital if and when the new heart arrives. And maybe the primary joining the patient at the Hospital after the fact. With me like I said I was already in the Hospital so it wasn't a call in type event. Probably best to ask the team. My gut tells.me.tho it won't be a problem and may suggest a couple of appointments where all the caregivers attend just to get instructions and ask questions. Hope that helps. Please keep me in the loop. And ask any questions you like.
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4 ReactionsDana, thanks so much. Our situation is different as I’m not married to the person I’m going to be a caregiver for and I’m a single, working mom of a teenaged son. I actually used to work at Mayo! I can be the primary caregiver and plan to take leave from work to care for him and have him move in with us for as long as he needs but I am not sure that 24/7/365 is feasible or that a 12 week leave without pay is realistic. I can probably do at least 8, though! He does have some other reliable friends who are also willing to take part and my son and I have some good local support too.
I was feeling a little overwhelmed at first but once I learned that I can take an unpaid leave from work, the stress level went way down. I really do want to be there and I really want him to be able to get a heart.
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2 Reactionsrare candy, Well he's lucky to have you. It will be a bit busy at first, but it won't take to long and He'll be able to do many things without much help. Even just a few weeks after mine, my wife was able to leave and do things for herself. She always loved walking for a hour or 2 each day. So with your other helpers that he could call when needed maybe a schedule will allow you to return to work Im thinking by your 8 week timeframe or maybe even less. We left the Hospital about 2 weeks after transplant and spent 2 weeks in a hotel nearby. Then went home as the appointments slowed down a bit. I live in Florence about 70 miles from Mayo and if we had to be near the hospital multiple days would get a hotel room. But once home it was really the lifting restriction mostly. I could only lift 10 pounds for the first 6 weeks. So it was mainly things that required lifting and car rides because until off of pain killers which ended at 6 weeks also. so after that i could even drive myself. But my wife was at all my appointments most of the first year. so that will be the hard part Im suspecting. Is your work close by? if you needed maybe after the 6 week point how easy will it be to be available for appointments. The biggest event was the biopsies. being under anesthesia required a driver every time and up to the about 6 month point they are often. Life for me is so independent now it hard to remember how much help I needed and for how long.
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