1. < Caregivers

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?

Interested in more discussions like this? Go to the Caregivers Support Group.

paradis | @paradis | Feb 23, 2019

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.

REPLY
5 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 23, 2019
In reply to @paradis "Dear all, thanks a lot for your kind words. I can assure you that after 10+..." + (show)
@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.

Jump to this post

@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

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 24, 2019
In reply to @paradis "Dear all, thanks a lot for your kind words. I can assure you that after 10+..." + (show)
@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.

Jump to this post

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?

REPLY
1 reply
paradis | @paradis | Feb 24, 2019
In reply to @hopeful33250 "Hello @paradis I am glad to hear that you have sought out resources to help you..." + (show)
@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?

Jump to this post

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.

REPLY
1 reply
susan2018 | @susan2018 | Feb 24, 2019

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.

REPLY
destmg96 | @destmg96 | Mar 13, 2019

My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required by the VA to stay in NY for 3 months to be near our VA transplant facility and I immediately noticed how angry, controlling, and indignant he became. It doesn’t help that he was already dealing with PTSD, which the docs attribute everything to. I don’t agree. I’m not the war. The kids aren’t the war. We are the ones he target most often. I genuinely believe that he gained more than a kidney and actually inherited personality traits from the donor. I believe in transferring energy/spirits and I think he got more than we bargained for. He was much more active and energetic before transplant..even while on dialysis for many years. He also seems entitled to ALL of my time and attention which is totally unfair. He’s 60..I’m 45....and my role has become caregiver instead of wife. Our intimate life ended 5 years ago, along with me enjoying all my interests and hobbies. He’s extremely jealous of the children now. He won’t pay bills anymore. He’s just generally unhappy. While we bear the brunt of it in the home, he lashes out at everyone he comes in contact with. I don’t know what to do as I am really afraid of what he may do and how I may react. He’s lost a considerable amount of weight going from 180 to 127 since transplant. He LOOKS ill and I think his self esteem and ego have been damaged because of it. I’ve been a good wife and even better caregiver..navigating transplant protocol along with the tangled web we call the VA. I’m just at my wits end, really contemplating filing a restraining order. I was relieved yet saddened to see the many people experiencing similar situations. I just wish they’d told us about this possible adverse reaction before transplant. Live on dialysis happy and loving or get a new kidney and become miserable, unhappy and mad at the world! I just don’t understand why no one hears me no matter how hard I scream HELP!!

Peace and Blessings to you all!!

REPLY
3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 14, 2019
In reply to @destmg96 "My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required..." + (show)
@destmg96

My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required by the VA to stay in NY for 3 months to be near our VA transplant facility and I immediately noticed how angry, controlling, and indignant he became. It doesn’t help that he was already dealing with PTSD, which the docs attribute everything to. I don’t agree. I’m not the war. The kids aren’t the war. We are the ones he target most often. I genuinely believe that he gained more than a kidney and actually inherited personality traits from the donor. I believe in transferring energy/spirits and I think he got more than we bargained for. He was much more active and energetic before transplant..even while on dialysis for many years. He also seems entitled to ALL of my time and attention which is totally unfair. He’s 60..I’m 45....and my role has become caregiver instead of wife. Our intimate life ended 5 years ago, along with me enjoying all my interests and hobbies. He’s extremely jealous of the children now. He won’t pay bills anymore. He’s just generally unhappy. While we bear the brunt of it in the home, he lashes out at everyone he comes in contact with. I don’t know what to do as I am really afraid of what he may do and how I may react. He’s lost a considerable amount of weight going from 180 to 127 since transplant. He LOOKS ill and I think his self esteem and ego have been damaged because of it. I’ve been a good wife and even better caregiver..navigating transplant protocol along with the tangled web we call the VA. I’m just at my wits end, really contemplating filing a restraining order. I was relieved yet saddened to see the many people experiencing similar situations. I just wish they’d told us about this possible adverse reaction before transplant. Live on dialysis happy and loving or get a new kidney and become miserable, unhappy and mad at the world! I just don’t understand why no one hears me no matter how hard I scream HELP!!

Peace and Blessings to you all!!

Jump to this post

@destmg96, I want to say Welcome to Mayo Clinic Connect. I am happy that you have posted your experience with caring for your husband. By way of introduction, I am a transplant recipient, and I have noticed minor changes in my reaction to situations, and my emotions are more sensitive than before. I don't know if that is a post transplant reaction due to side effects of the stress that I experienced during my failing health prior to my transplant, or to medications, or even a contrast to how poorly I felt before.
I don't understand why your husband feels this way.
I am concerned for what you have said about your call for HELP and no one hears you. Do you have someone,-friend, minister, social worker who you can go to for support and to talk about your needs?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 14, 2019
In reply to @destmg96 "My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required..." + (show)
@destmg96

My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required by the VA to stay in NY for 3 months to be near our VA transplant facility and I immediately noticed how angry, controlling, and indignant he became. It doesn’t help that he was already dealing with PTSD, which the docs attribute everything to. I don’t agree. I’m not the war. The kids aren’t the war. We are the ones he target most often. I genuinely believe that he gained more than a kidney and actually inherited personality traits from the donor. I believe in transferring energy/spirits and I think he got more than we bargained for. He was much more active and energetic before transplant..even while on dialysis for many years. He also seems entitled to ALL of my time and attention which is totally unfair. He’s 60..I’m 45....and my role has become caregiver instead of wife. Our intimate life ended 5 years ago, along with me enjoying all my interests and hobbies. He’s extremely jealous of the children now. He won’t pay bills anymore. He’s just generally unhappy. While we bear the brunt of it in the home, he lashes out at everyone he comes in contact with. I don’t know what to do as I am really afraid of what he may do and how I may react. He’s lost a considerable amount of weight going from 180 to 127 since transplant. He LOOKS ill and I think his self esteem and ego have been damaged because of it. I’ve been a good wife and even better caregiver..navigating transplant protocol along with the tangled web we call the VA. I’m just at my wits end, really contemplating filing a restraining order. I was relieved yet saddened to see the many people experiencing similar situations. I just wish they’d told us about this possible adverse reaction before transplant. Live on dialysis happy and loving or get a new kidney and become miserable, unhappy and mad at the world! I just don’t understand why no one hears me no matter how hard I scream HELP!!

Peace and Blessings to you all!!

Jump to this post

Hi @destmg96, I want to add my welcome as well. As you have read here, caregivers have noticed slight to dramatic changes in their partners after transplant. I also found this 2014 study
Psychopathological aspects of kidney transplantation: Efficacy of a multidisciplinary team https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274596/

The study states:
"Transplantation can result in a psychosomatic crisis that requires the patient to mobilize all bio-psycho-social resources during the process of adaptation to the new foreign organ which may result in an alteration in self-representation and identity, with possible psychopathologic repercussions. ... the emotional experiences and the psychological and psychopathological complications related to organ donation and transplantation should not be underestimated. ... Transplanted patient re-employment and social and family reintegration requires psychotherapeutic support to implement new coping strategies."

In plain language, what you are witnessing in your husband is real. And what affects him, affects you and your family. The study also stresses the importance of getting help. You and your husband should not be expected to handle this on your own.

Is your husband willing to get counselling and seek therapy?

Like @rosemarya, I'm concerned for YOU. You mentioned that no one hears you when you cry for help. Have you told your husband's Transplant Social Worker about the situation at home? A social worker can work with you to get help first for you. I think you're at your wit's end, worn out and should start with taking care of you first and how you can keep yourself safe.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 14, 2019
In reply to @destmg96 "My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required..." + (show)
@destmg96

My husband received a kidney April 2017, and his mood/personality changed almost immediately. We were required by the VA to stay in NY for 3 months to be near our VA transplant facility and I immediately noticed how angry, controlling, and indignant he became. It doesn’t help that he was already dealing with PTSD, which the docs attribute everything to. I don’t agree. I’m not the war. The kids aren’t the war. We are the ones he target most often. I genuinely believe that he gained more than a kidney and actually inherited personality traits from the donor. I believe in transferring energy/spirits and I think he got more than we bargained for. He was much more active and energetic before transplant..even while on dialysis for many years. He also seems entitled to ALL of my time and attention which is totally unfair. He’s 60..I’m 45....and my role has become caregiver instead of wife. Our intimate life ended 5 years ago, along with me enjoying all my interests and hobbies. He’s extremely jealous of the children now. He won’t pay bills anymore. He’s just generally unhappy. While we bear the brunt of it in the home, he lashes out at everyone he comes in contact with. I don’t know what to do as I am really afraid of what he may do and how I may react. He’s lost a considerable amount of weight going from 180 to 127 since transplant. He LOOKS ill and I think his self esteem and ego have been damaged because of it. I’ve been a good wife and even better caregiver..navigating transplant protocol along with the tangled web we call the VA. I’m just at my wits end, really contemplating filing a restraining order. I was relieved yet saddened to see the many people experiencing similar situations. I just wish they’d told us about this possible adverse reaction before transplant. Live on dialysis happy and loving or get a new kidney and become miserable, unhappy and mad at the world! I just don’t understand why no one hears me no matter how hard I scream HELP!!

Peace and Blessings to you all!!

Jump to this post

Hello @destmg96

I just read your post and feel concerned for you. The onset of a personality change is very difficult and can feel very dangerous when the change involves trying to control others or blaming others. This is the time you need to protect yourself and your children from continued emotional, verbal and/or physical abuse. These types of situations can have a long-lasting effect, especially on children.

I would encourage you to seek out a shelter that provides protection for domestic violence survivors until you can get a restraining order in place. If possible, you might consider bringing an attorney and law enforcement into this situation as well.

Please know that I care and want you to be safe!

REPLY
Canuck | @hullegan | May 14, 2019
In reply to @paradis "Dear all, thanks a lot for your kind words. I can assure you that after 10+..." + (show)
@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.

Jump to this post

Wow paradis you hit the nail on the head. I experience much the same , a self centred. Rude screaming verbally abusive man. Everything is my fault and I’m the stupidest
most ignorant person he’s ever known. His language directed at me is vile. He has hysterical vicious outbursts of anger over the smallest things.
I just can’t stand it. Don’t deserve being treated like this ... and will soon file for divorce. This situation has gradually become worse and I don’t see it getting better. One day his anger will be directed at me physically ... it’s been too close for comfort. I’m getting out, while I’m still alive. I am terrified of his outbursts. He totally loses it!
I don’t care what anyone thinks of me. Yes, I’m leaving the ship before it goes down.
( yes I’ve tried everything, the church, Dr counseling. Now it’s time for the lawyer). This is s second rotten marriage. I’m done !
Thank you for listening. Amen!!

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.