Personality Change of Kidney Transplant Patient

Posted by cseymour @cseymour, May 13, 2018

I am at a loss. My sweet husband, who is normally very kind and gentle, has become cynical, rude and just downright hard to be around. He has ESRD, been on dialysis, and received a transplant in September 2017. He has a complex case and is facing possible loss of transplant. I realize he has been through so much and I want to keep being a supportive caregiver. However, there is a limit to what one can take. Any suggestions or strategies on dealing with someone who appears to be mad at the world?

Hi cseymour, I can relate to feeling like I was st my witts end with my husbands personality change. He fought cancer until 2015, then was told he was terminal and since then his personality began to change. Now, as the cancer is spreading he is becoming more angry at the world in general and at me. So much so, he lives with his brother now. My husbands is 61, his brother 71. I tried one on one counseling for his moods and anger, joint counseling too. Anti depressants. Cancer group support. Organised and supported outside interest. He stopped those 5 months ago. I felt so bad for him, his unhappiness, feeling cheated on life etc but when he started in on me, it scared me. And I can’t live in fear. Or be mentally and emotionally abused. He use to show remorse. Then he stopped that. He’s suffered a lot physically and has been on pain meds for a long long time. And I think that changes the person. Sometimes. He’s even mad at God. Try to take the best care of yourself that you can. I highly suggest talking to a carer counsellor. I let it go on way too long. I’m trying to get on my feet, looking for work, moving to lower cost rental. It’s been a shocking upheaval and by the grace of a God of my understanding, I haven’t fallen completely apart or become ill myself. Take care, talk to professionals, get support, find respite somehow, somewhere . Seek options. Stay healthy. All the best.

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@cseymour,
I want to extend my sincere welcome to Connect. I don't usually participate in the caregiver discussion group, but the title of your post caught my eye. I am a liver/kidney recipient. I m sorry to hear about your husband's current complications. I can imagine how difficult this is for you, his wife an caregiver.

I think that you are right in saying that there is a limit to what you can take. I have read where many post transplant patients go thru various emotional and mental health issues that can be related to the many medications that they need to take. Youe husband seems to be under a double whammy because of the additional fear of losing the organ.
I want to invite you look at or post your question in the Transplant Discussion Group. Someone there might have experienced similar situation either as a recipient or as caregiver. https://connect.mayoclinic.org/group/transplants/e you discussed any of this with his transplant

Have you discussed any of this with his transplant team? There should be a counselor who can be available for you as the caregiver.
I hope and pray that this is a temporary situation.
I am here if there is anything that you want to ask of me.
Rosemary

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Hello @cseymour Nice to e-meet you here at Mayo Connect. I am Scott and although I am sorry for the situation that brought you here, I am glad you found Connect. It is a great community with broad shoulders, good listening folks, and a strong appreciation for sharing!

I was my wife’s caregiver for 14 years and I can understand your feelings during this tough time.

While I recognize each patient’s, and therefore each caregiver’s, situation is unique, I found it good therapy to share. I have no magic suggestions for getting through this phase of caregiving, but in my case the one thing that helped me was my mantra of my wife’s attitude was being directed by her chronic situation and not by her. She was simply a new and very different person while under the grasp of disease. I also kept an old pullow in our living room, which I frequently cried into and/or punched with all my might to relieve a tad bit of the stress I felt.

It’s a tough journey you are each on. Unfortunately the paths are incredibly different and unique in their focus.

I send you courage, strength, and peace.

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My husband transplanted 7/1/18 and I don’t even know him anymore. It’s like someone else is living in his body. I’m thinking it’s the anti rejection drugs. He’s on a high dose.

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@delba

My husband transplanted 7/1/18 and I don’t even know him anymore. It’s like someone else is living in his body. I’m thinking it’s the anti rejection drugs. He’s on a high dose.

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@delba Welcome to Mayo Connect. Going through something life-changing like a transplant affects the patient plus the entire family. Talk to the transplant team and/or medical center social worker about the changes you've seen, get their opinion on it all. Sometimes a patient realizes a new boundary that pre-transplant had precluded them from, or perhaps they feel special treatment is to be expected because of the surgery. My husband was transplanted 1 Oct 2016.
Ginger

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Hello, my husband has been through several transplants and I can also confirm that his personality has changed severely. I have been taking care of him for many years, sacrificing a LOT, went through a lot of trauma and seeing horrible things and after all of that, I am now living with a cold, selfish, self-centered, manipulative calculating monster who only thinks about himself because he believes that he is entitled to everything just because he is sick. It almost feels like a reversed discrimination, a sick person hating a healthy one just because we are healthy and they are not. I am very disappointed that this is the result of the many years of stress and superior care that he received from me. I used to judge people who left their loved ones when they got sick, well, after my bitter experience – not anymore!

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Oh @paradis, I’m sorry to hear about your situation; it sounds like you are going through "caregiver burnout.” I can confidently tell you that you are not alone in feeling like this. Just remember this: all that you are feeling, good or bad, about being a caregiver, is not only allowed, but valid and important.

I want to introduce you to fellow Connect members @susan2018 @jodeej @godsgiver @IndianaScott @dazlin @chocolate5lover as they can may be able to offer support as you learn how to cope with the trauma you mention. In fact, I’d like to quote what @IndianaScott shared in another discussion: “…there is no way one person can do what you are trying to do. As I often say — the only place you find superheroes is in the comics and not in caregiving!”

You can meet some of the members I’ve tagged, and many more in these conversations on Connect.
– Help for dealing with personality disorder in family member https://connect.mayoclinic.org/discussion/help-for-dealing-with-personality-disorder-in-family-member/
– Weary https://connect.mayoclinic.org/discussion/weary/

@hopeful33250 and @windwalker have also mentioned joining support groups like NAMI (National Alliance on Mental Illness), https://www.nami.org/#
Have you considered talking to a counselor or therapist, @paradis? I think taking care of yourself, self-care is as important as caring for others…after all, it is believed that even Buddha said, “After enlightenment, the laundry.”

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@paradis

Hello, my husband has been through several transplants and I can also confirm that his personality has changed severely. I have been taking care of him for many years, sacrificing a LOT, went through a lot of trauma and seeing horrible things and after all of that, I am now living with a cold, selfish, self-centered, manipulative calculating monster who only thinks about himself because he believes that he is entitled to everything just because he is sick. It almost feels like a reversed discrimination, a sick person hating a healthy one just because we are healthy and they are not. I am very disappointed that this is the result of the many years of stress and superior care that he received from me. I used to judge people who left their loved ones when they got sick, well, after my bitter experience – not anymore!

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Hello @paradis

I am so sorry to hear about your difficult caregiving experience. I sense you are running on empty at this point of caregiving. It is important to take care of yourself. If you have ever traveled on an airline, the flight attendants always instruct that when the oxygen masks drops down you put on yours on first and then help others with their masks. This is so true for you now.

I would, like Kanaaz, said to get some support for yourself through a counselor, pastor or the NAMI group. NAMI offers support groups for the families of those who are suffering from family situations like yours. They offer great support.

I'm also wondering what kind of support you have in caring for your husband. Do you have family members nearby who can pitch in and give you a 1/2 day off now and then? Are there respite centers in your community that can offer a place for your husband to go and give you a break? It is so important to take care of yourself and it is also important that your husband sees that you are taking care of yourself as well.

Has your husband tried to get professional help for his personality disorder?

I also encourage you to get some professional help for yourself. A counselor, therapist, pastor, just someone you can talk to who can help support you at this time.

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@paradis

Hello, my husband has been through several transplants and I can also confirm that his personality has changed severely. I have been taking care of him for many years, sacrificing a LOT, went through a lot of trauma and seeing horrible things and after all of that, I am now living with a cold, selfish, self-centered, manipulative calculating monster who only thinks about himself because he believes that he is entitled to everything just because he is sick. It almost feels like a reversed discrimination, a sick person hating a healthy one just because we are healthy and they are not. I am very disappointed that this is the result of the many years of stress and superior care that he received from me. I used to judge people who left their loved ones when they got sick, well, after my bitter experience – not anymore!

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You surely don’t deserve this. A not uncommon thread in caregiving burnout seems to be the frustration that comes from “doing” for someone else, and instead of grateful recognition the caregiver gets more responsibility dumped on them. Why me? How much can I take? I have to believe most caregivers face this, it’s just that not all of them are willing to be as honest as you have been here. Feel free to head over to the Caregivers Group. You can let your hair down there

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@delba, @paradis, I am a transplant recipient. I find myself more easily distracted and anxious since my transplant. I am especially edgy if my med levels are too high. I have learned to call my transplant coordinator about it, and she will order labs so they can check levels and make adjustments. That happened frequently in my early post transplant times. And as time progressed away from the transplant surgery, my body has found a stable level that is easier for me. I have talked to recipients who speak of having to make physical adjustments, but I don't remember hearing about mental changes to this degree.
I found an article in the Transplant Pages titled: Post-Transplant Mental Health & Well-being: Q&A with Shelia Jowsey-Gregoire, M.D. In it she says, "One thing we watch for is any changes to sleep or mood as a result of new immunosuppressive therapy. If there are any negative side effects, we work to address those right away." Has your husband contacted his nurse coordinator? As his caregiver, have you considered doing that?
https://connect.mayoclinic.org/page/transplant/newsfeed/post-transplant-mental-health-well-being-qa-with-shelia-jowsey-gregoire-m-d/
I am happy that you are sharing within the Caregivers Group. I know what a stressful and difficult time you have experienced in the past, and it is unfortunate that you are having to deal with this now.

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Dear all, thanks a lot for your kind words. I can assure you that after 10+ years of caregiving and handling almost everything myself, I already went through the whole internet to read about every possible aspect of the transplant journey. At times I also did participate at various caregiver support forums, etc. however realistically, this won't help you. Because, this reality is here every day, every hour and every second of your life. It won't go away. It just gets worse when over time your husband's personality changes drastically and you are supposed to still take care of an ungrateful person who has no problem yelling at you, putting you down, etc. Yes I talked to church, doctors, friends, God, you name it, but no, it won't help you because first of all, he would have to be willing to go to a psychologist or psychiatrist and he just refuses to do so! He believes that he is totally normal which he clearly is not. I could write a book about this and one day I probably will but I would like to warn everyone to think twice before committing to something like this. I do not expect any special gratitude, I did everything because I truly believed that it was a right thing to do but now I think that I sacrificed my life and my health to something that most likely wasn't worth it. This illness brought down not only him but also me and it is very questionable what is right and what is wrong. I am sure that most patients do understand how much efforts, energy, emotions, etc. is invested by their caregivers to help them in their unfortunate situation however in my specific case, this was an awful experience and if things don't get better I will probably be forced to file for a divorce. Which is against my heart but at some point, I have to protect myself and my child too. I wish you all the best, no worries, I'm fine and will be fine, I just wanted to let people know that these things don't always turn well for caregivers.

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@paradis

Dear all, thanks a lot for your kind words. I can assure you that after 10+ years of caregiving and handling almost everything myself, I already went through the whole internet to read about every possible aspect of the transplant journey. At times I also did participate at various caregiver support forums, etc. however realistically, this won't help you. Because, this reality is here every day, every hour and every second of your life. It won't go away. It just gets worse when over time your husband's personality changes drastically and you are supposed to still take care of an ungrateful person who has no problem yelling at you, putting you down, etc. Yes I talked to church, doctors, friends, God, you name it, but no, it won't help you because first of all, he would have to be willing to go to a psychologist or psychiatrist and he just refuses to do so! He believes that he is totally normal which he clearly is not. I could write a book about this and one day I probably will but I would like to warn everyone to think twice before committing to something like this. I do not expect any special gratitude, I did everything because I truly believed that it was a right thing to do but now I think that I sacrificed my life and my health to something that most likely wasn't worth it. This illness brought down not only him but also me and it is very questionable what is right and what is wrong. I am sure that most patients do understand how much efforts, energy, emotions, etc. is invested by their caregivers to help them in their unfortunate situation however in my specific case, this was an awful experience and if things don't get better I will probably be forced to file for a divorce. Which is against my heart but at some point, I have to protect myself and my child too. I wish you all the best, no worries, I'm fine and will be fine, I just wanted to let people know that these things don't always turn well for caregivers.

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@paradis I hope you will consider looking into assistance for yourself, either via a mental heath professional or counselor, to help you navigate your way through all this. My heart goes out to you.
Ginger

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@paradis

Dear all, thanks a lot for your kind words. I can assure you that after 10+ years of caregiving and handling almost everything myself, I already went through the whole internet to read about every possible aspect of the transplant journey. At times I also did participate at various caregiver support forums, etc. however realistically, this won't help you. Because, this reality is here every day, every hour and every second of your life. It won't go away. It just gets worse when over time your husband's personality changes drastically and you are supposed to still take care of an ungrateful person who has no problem yelling at you, putting you down, etc. Yes I talked to church, doctors, friends, God, you name it, but no, it won't help you because first of all, he would have to be willing to go to a psychologist or psychiatrist and he just refuses to do so! He believes that he is totally normal which he clearly is not. I could write a book about this and one day I probably will but I would like to warn everyone to think twice before committing to something like this. I do not expect any special gratitude, I did everything because I truly believed that it was a right thing to do but now I think that I sacrificed my life and my health to something that most likely wasn't worth it. This illness brought down not only him but also me and it is very questionable what is right and what is wrong. I am sure that most patients do understand how much efforts, energy, emotions, etc. is invested by their caregivers to help them in their unfortunate situation however in my specific case, this was an awful experience and if things don't get better I will probably be forced to file for a divorce. Which is against my heart but at some point, I have to protect myself and my child too. I wish you all the best, no worries, I'm fine and will be fine, I just wanted to let people know that these things don't always turn well for caregivers.

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Hello @paradis

I am glad to hear that you have sought out resources to help you at this time. That is a very wise thing to do. It is also good to hear you say, "I have to protect myself and my child too." You are setting a good priority and that will perhaps speak to your husband's self-involvement at this time.

If you do decide to leave your husband, please remember to keep those resources of counseling, Connect and other supportive groups in place. You will need them as you move on.

I hope that Connect can support you in this decision-making process. In that light, I would like to invite @paus to this discussion. She might have some insights from her own experience to add. Will you continue to share with Connect as you move forward?

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@hopeful33250

Hello @paradis

I am glad to hear that you have sought out resources to help you at this time. That is a very wise thing to do. It is also good to hear you say, "I have to protect myself and my child too." You are setting a good priority and that will perhaps speak to your husband's self-involvement at this time.

If you do decide to leave your husband, please remember to keep those resources of counseling, Connect and other supportive groups in place. You will need them as you move on.

I hope that Connect can support you in this decision-making process. In that light, I would like to invite @paus to this discussion. She might have some insights from her own experience to add. Will you continue to share with Connect as you move forward?

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Hi Teresa,

Sure, I can get back to Connect after some time to share my further experience. I actually got here just because I was reading through different articles available online describing how various people changed after they got an organ transplanted from another person – and, many times, how they picked up certain habits, preferences, behaviors etc. from the donor. Which is, in my opinion, another taboo in this society, because of course, who wants to get an organ from, let's say, a nasty person? But, if you need an organ, you don't think twice. So, people often do not think about these things. But the cells do have a memory and patients and their relatives do notice these changes (thankfully, not always bad changes). As I said, this is a very wide topic but yes I do believe that this is possible since I learned certain things about our donor which explains a lot to me. If at least the society helped the caregivers more, that would be nice, but we don't get any real help from anywhere. Anyways, thanks for having me here and I really wish the best to everyone, I wish people were always healthy and nobody would have to suffer in any way.

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I don’t know anything about transplantation so can’t address your issues in this regard. I do have a friend who received lungs from a young man. She was fortunate later to become pregnant and have a premature but healthy baby. The funny thing was that when she first learned she was pregnant, she was told the baby was a boy. They were surprised when the ultrasound revealed it was a girl. Turns out the fact her donor was male affected that initial test. Your wishes for good health and protection from suffering are so heartfelt and understandable by all caregivers. You’ve been at it so long and I can only imagine how tired of it you must be, especially considering your circumstances. My role as caregiver came upon me suddenly. I have been helping my mother but she had been relatively independent until this winter when she suddenly needed a lot of help and I got a taste of what is probably coming my way. And then when my husband had heart bypass surgery, a two week hospitalization 4 months later with another serious issue, and this last week had a really bad “cold” and was sicker than he ever would have been in the past, I realized this big brawny man who has powered through everything in the past is suddenly vulnerable. And our lives are suddenly more uncertain. I know that sometimes the caregiver is the one who succumbs to the stress of the role, and the “patient” lives on. I hope you have an emotionally supportive person to confide in. For now, I am using this resource. I still have a hard time admitting this is sometimes overwhelming.

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