What to Expect as a Transplant Caregiver

Jan 21, 2020 | Kristin Eggebraaten | @keggebraaten | Comments (56)

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.2020-01-21 Caregiver Blog

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

@actsoflight, as @gingerw says, you're asking great questions. The caregiver role is a significant one, not only in the duties, but also the dedication and its importance to the recovery process. @danab's right that recovery differs from patient to patient, their health status prior to transplant, etc. It is also different depending on the organ that was transplanted.

I'm hoping @linda59 @fatherscaregiver and @lupedelarosa12 will join this discussion. They each cared for a family member during and post heart transplant. @bcrandall and @djcrandall may also have valuable experience to add as they cared for a family member who had a heart-lung transplant.

ActsofFlight, you might also be interested in this related discussion:
– Transplant Caregiver Advice: Got Tips to Share? https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/

And these blog posts:
– Top Takeaways from "Transplant 101: Preparing for Your Journey" https://connect.mayoclinic.org/page/transplant/newsfeed-post/icymi-key-takeaways-from-transplant-101-preparing-for-your-journey/

Would you be able to relocate for 6 months or more to dedicate to caregiving? I really like Dana's advice about considering your emotional health and planning not only for the commitment but what you may need to sustain physically and emotionally during the extended period of caring away from home.

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Good morning to all. I'm still not clear about several points concerning the caregiver. The first question being, hoow soon before the patient goes in for the transplant should the caregiver plan on moving in to be with the patient? I know that question depends on several factors and that's why I'd like to know what the rule of thumb is across the spectrum. Not every patient has someone living nearby or in their home (spouse or grown child or neighbor).

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@actsoflight

Good morning to all. I'm still not clear about several points concerning the caregiver. The first question being, hoow soon before the patient goes in for the transplant should the caregiver plan on moving in to be with the patient? I know that question depends on several factors and that's why I'd like to know what the rule of thumb is across the spectrum. Not every patient has someone living nearby or in their home (spouse or grown child or neighbor).

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@actsoflight You're right, there is no rule of thumb. From my experience, how well do you know the patient? You want to be familiar with their "normal", as after surgery things will be so different. Do you know the neighborhood where he lives, enough to be able to navigate to a hospital/pharmacy/store/etc without input from him? Knowing the area before you need to know the area will relieve stress on you. He will need to stay close to the transplant center for a time after the surgery; again, how well do you know that area? [for my husband, I had an actual paper map with different services highlighted, and two different routes to the transplant center highlighted]

As @danab mentioned, the call for a transplant surgery may come at any time.
Ginger

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The more I learn the more I realize that he really needs someone that lives in his area or near it. He's in Southern Mississippi and I'm in NYC (Manhattan). The people he knows are married and have families so I can't see them being the answer. He's got a spare bedroom so I'm thinking that perhaps a retired aide who would trade free board for being his caregiver? But then again, he really might not like the idea of having a stranger be with him in his home for weeks or months on end. It's a dilemma that he's going to have to address soon. I feel badly that I can't help any more than finding this Forum and picking up knowledge that I can pass along to him. I even sent him the link to this forum in hopes that he'd join. He's got VERY LITTLE patience and the slightest difficulty will cause him tremendous frustration. That's another issue that will probably increase should he have a transplant.
Again, thank you for your candor and information Ginger.

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@actsoflight

The more I learn the more I realize that he really needs someone that lives in his area or near it. He's in Southern Mississippi and I'm in NYC (Manhattan). The people he knows are married and have families so I can't see them being the answer. He's got a spare bedroom so I'm thinking that perhaps a retired aide who would trade free board for being his caregiver? But then again, he really might not like the idea of having a stranger be with him in his home for weeks or months on end. It's a dilemma that he's going to have to address soon. I feel badly that I can't help any more than finding this Forum and picking up knowledge that I can pass along to him. I even sent him the link to this forum in hopes that he'd join. He's got VERY LITTLE patience and the slightest difficulty will cause him tremendous frustration. That's another issue that will probably increase should he have a transplant.
Again, thank you for your candor and information Ginger.

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@actsoflight I temper what my next words are, with sympathy for you in the situation you find yourself in, and your friend in his situation. He needs to also be his own advocate. Have him talk to the social worker at the transplant center, and lay out his situation in clear language. It is commendable for you to ask all the questions while searching for answers before jumping in to this, and I am really impressed! There are many "what ifs" right now, aren't there, that you both would like to see concrete answers to, when there may not be anything solid to hold on to.

Before my husband and I married in 2018, I was alone for many years, and had to rely on the good graces of friends if I needed any help. I lived alone and handled almost everything on my own. It was a great sense of "feeling beholden" to someone if they gave me a ride to an appointment, or assisted me somehow. I hated that feeling. If there will be an aide or caregiver with him, he must, by necessity, "get over it", to be successful.

My sincere apologies if this sounds harsh; it's really not meant to be. Your friend is very lucky to have someone who cares enough like you do, to look at all the angles in advance.
Ginger

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Dear Ginger: You don't sound harsh at all. You're a realist like myself. He's always lax when it comes to organizing and acting in a timely manner. This time I've decided that he's got to be captain of this extremely important life or death journey. He's 64 and needs to be responsible. I sent him this link 2x and I've yet to hear back from him about it.
As always, thank you. <3

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@actsoflight

Dear Ginger: You don't sound harsh at all. You're a realist like myself. He's always lax when it comes to organizing and acting in a timely manner. This time I've decided that he's got to be captain of this extremely important life or death journey. He's 64 and needs to be responsible. I sent him this link 2x and I've yet to hear back from him about it.
As always, thank you. <3

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Correction: He's 65 years old

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@colleenyoung

@actsoflight, as @gingerw says, you're asking great questions. The caregiver role is a significant one, not only in the duties, but also the dedication and its importance to the recovery process. @danab's right that recovery differs from patient to patient, their health status prior to transplant, etc. It is also different depending on the organ that was transplanted.

I'm hoping @linda59 @fatherscaregiver and @lupedelarosa12 will join this discussion. They each cared for a family member during and post heart transplant. @bcrandall and @djcrandall may also have valuable experience to add as they cared for a family member who had a heart-lung transplant.

ActsofFlight, you might also be interested in this related discussion:
– Transplant Caregiver Advice: Got Tips to Share? https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/

And these blog posts:
– Top Takeaways from "Transplant 101: Preparing for Your Journey" https://connect.mayoclinic.org/page/transplant/newsfeed-post/icymi-key-takeaways-from-transplant-101-preparing-for-your-journey/

Would you be able to relocate for 6 months or more to dedicate to caregiving? I really like Dana's advice about considering your emotional health and planning not only for the commitment but what you may need to sustain physically and emotionally during the extended period of caring away from home.

Jump to this post

@actsoflight, I am my dad's primary care giver. I only lived about 5 miles from him when we received his transplant. We had help from close friends and family initially. If I remember correctly my dad was in the hospital for about a week after his transplant. My aunt (lives out of town) came to stay with my dad for the first two weeks after discharge. She was able to go the hospital with me to review all the discharge, post op care with me. Close friends (also live out of town) stayed the following two weeks. My sister (lives out of town) stayed for the fifth week. During this period I was at my dad's house daily, taking care of meds, groceries, cleaning, doctors appointments, etc. My son (20 years old at the time) moved in with my dad after my sister left. This provided that somebody would be with him almost all of the time. My son eventually moved out after two years and my dad lived by himself for two years. My dad was older when he received his transplant and his care has been extensive. He was just diagnosed with Parkinson's however the symptoms started to appear not long after transplant. This significantly delayed his recovering and took several years and doctors to finally diagnose. His transplant was/is a success, unfortunately other problems, illness can occur. My husband, son and I have adjusted our lives significantly to care for him over the past four years. I saw him pretty much everyday and definitely spoke to him daily. This summer we had to move him to an assisted living facility. His Parkinson's continues to progress and his falls were becoming too frequent.
Everybody recovers differently. For my dad there was never really a full recovery but that is because of additional health problems that were not anticipated. Is there are additional friends and family that can help, take a week or two each? It is difficult to say your friend will only need you 6-8 weeks, 6 months or possibly longer.

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Good morning to all:
Question: If I understood correctly, the patient must live no further away than 4 hours from the hospital doing the transplant? When should the caregiver arrive? And, is the caregiver expected to stay during the entire time the patient is in the hospital as well as when the patient is discharged 2 weeks later living in a nearby hotel?

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I'm assuming that the patient can expect to be away from their home at least 4 weeks (recovering in hospital 2 weeks and then in a nearby holding place for 2 weeks)?????

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@actsoflight my dad's caregiver did not need to be there until his release from the hospital to receive instructions etc. I would encourage you to be in touch with the transplant team/coordinator prior to his release. There are a lot of care instructions, medications, etc that you and he will need to learn for his release. I would also encourage your friend to give authorization for them to talk to you (you will need this!) Will anybody be with your friend as they take him for surgery and for when he wakes up? This is a major life changing event and I would think he will want somebody there to comfort him.

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Am I correct in believing that the patient has to stay nearby the hospital for 2 weeks after being discharged from the hospital? As a side note, the patient's home is 4 hours away from the hospital he would be potentially using.

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