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?

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deekay2021 | @deekay2021 | Aug 3, 2021
In reply to @delba "My husband transplanted 7/1/18 and I don’t even know him anymore. It’s like someone else is..." + (show)
@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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I, too, am struggling with this. My husband was transplanted in May 2017 (so 4 years now) and he is a totally different person. It was very prominent the first year after transplant and then seemed to get a bit better; however, the last few months have been awful. He is nervous and anxious and also has some OCD that has appeared. We've been married 36 years but not sure I can go on like this. It makes me very sad.

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 4, 2021
In reply to @deekay2021 "I, too, am struggling with this. My husband was transplanted in May 2017 (so 4 years..." + (show)
@deekay2021

I, too, am struggling with this. My husband was transplanted in May 2017 (so 4 years now) and he is a totally different person. It was very prominent the first year after transplant and then seemed to get a bit better; however, the last few months have been awful. He is nervous and anxious and also has some OCD that has appeared. We've been married 36 years but not sure I can go on like this. It makes me very sad.

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@deekay2021 First, welcome to Mayo Clinic Connect. We are fellow patients/caregivers/family members who share our experiences, as you can see from reading the posts here.

Your dilemma sure seems to be familiar with what others have been through, doesn't it? My husband had a cadaver transplant kidney Oct 2016. He still gets bloodwork done every three months, but has had no medication change in several years.

While a transplant can be life-saving, it is also life-changing. Changes in personality, changes in lifestyle, changes in family dynamics. Letting the transplant team know about the changes you see, getting your husband to have a full physical [not always an easy task!], may help everyone understand the differences you see. Have you kept a journal of the changes, are they prominent certain times of the day, after specific activities, etc.? This could help narrow down the issues, for the medical team, and help you see patterns.

You mention you have been married for 36 years. Congratulations! A complete physical for your husband, to rule out other issues going on, would be a great start to figuring this all out. My husband had personality changes also, but we also had other factors going on, like his job, household changes, etc. It's really hard to pin it all on one particular thing when I saw all we were going through.

Please let me know how we can help you today, and if you have thoughts of how you will proceed. Will you do that for me?
Ginger

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 7, 2021
In reply to @deekay2021 "I, too, am struggling with this. My husband was transplanted in May 2017 (so 4 years..." + (show)
@deekay2021

I, too, am struggling with this. My husband was transplanted in May 2017 (so 4 years now) and he is a totally different person. It was very prominent the first year after transplant and then seemed to get a bit better; however, the last few months have been awful. He is nervous and anxious and also has some OCD that has appeared. We've been married 36 years but not sure I can go on like this. It makes me very sad.

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Deekay, I'd like to add my welcome. How are you doing today?

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tasher3433 | @tasher3433 | Sep 9, 2021
In reply to @hullegan "Hi Ginger thank you for your reply, concern and advice. I have spoken with him about..." + (show)
@hullegan

Hi Ginger thank you for your reply, concern and advice. I have spoken with him about his changes and memory impairment.
He says there’s nothing wrong with him that I am a ‘B’. And that since his transplant I’m “out to get him”. Omg!
His lab work is ideal. His does have pain from other conditions, arthritis and neuropathy. His diet is awful and he often drinks to excess. (But he has to drink in order to live with me, he says).
I spoke briefly to the social worker who is useless. She said , he’s such a nice man , just exercise patience. For 1-12 yrs I’ve asked the neph on different occasions to give him a dementia test. Yet she maintained that she noticed things about him
A couple yrs ago. But she’s done Nothing!!!!

As for divorce, he suggested that the marriage has no future.
In order to split I wouldn’t function well financially. His answer was ... then live in poverty cuz I f.. n hate you and I hope you never get a decent nights sleep. I sleep like a log and he resents it. He resents that I am well but I am diabetic also . His favourite word towards me is 4 letter.
He picks and criticizes me moans, acts irrationally , curses worse than a truck driver about everything and I mean everything. He displays signs of ocd.
He has always had a short fuse but not like this. I see this behaviour in his Mother, his son and his grandson.
His son has not spoken to him in 20 years. Won’t even let him know where he lives.
That’s a big red flag.
I’ve been with him 19 years. He’s never worked a day in that time. He is now 70. I finally quit working because of his illness... had to hand hold sit with him while he dialysed for 2 years and still try to work when I was 70. Now 71.
Why should I stay where I’m obviously not wanted. Needed somewhat? Probably!

My GP Dr has referred me to a woman’s shelter. She suggests I leave. She will give him geriatric test. His nephrologist doesn’t seem to care that his illness affects me. I asked her a question once and she put her hand up in the air and said, Sorry, Lisa , I cant answer you , you’re not my patient I must treat Tom. I asked him to get another Dr. He refused.
There is no care or attention paid to family members.

Financially he’ll be fine. He has a large inheritance coming soon. He always promised to share that because I worked all those years while he went fishing, shooting, baking pies & cookies. I’ll get squat.
The least I should have is my peace of mind and freedom.
I saw how he treaded his X wife in their divorce so making sure she got nothing.
I’m not expecting this to be different. She couldn’t fight.., I can snd will.
I’m too old to stay and too old to leave.
Sigh 😔!
It’s been good to vent here. Thanks.

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Please, please take care of YOU. There comes a time when there is nothing left to give. But, you do still have your own life.
My heart is with you.

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ddyjrr | @ddyjrr | Sep 29, 2021
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.

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My daughter saw this post and asked if I had written it. This is the first place that I have found where the cold hard facts are presented. My husband had a liver transplant in 1998. Although he was (barely) able to continue working, his health problems were just beginning (heart attack, prostate cancer, diabetes, thyroid issues, gouty arthritis, infection, stroke, etc). If I dare complain, I am reminded that he has been through a lot. This is of course true but we have been along for the whole ride and it has pretty much destroyed our family. Six years ago he had a kidney transplant after the immunosuppressant drugs for the liver transplant destroyed his kidneys. Since then he has changed dramatically. He has gone from a glass half full person to someone for whom the glass no longer exists. Yes, he is on anti-depressants which he normally does not take. He's had therapy for years and refuses any more. I've wasted 4 years in therapy, both private and with NAMI (my group was useless). I've tried to talk to him one-on-one, tried to talk to him in therapy. If he doesn't want to engage, he will just refuse to speak. He won't test or treat his diabetes. I have to do it. I get all of his prescriptions, lay out all of his pills and he still will decide that the medication isn't important and won't take it. I manage everything in the house and coordinate his 14+ doctors. I have had to hide his car keys as his driving is atrocious. He too thinks that he is just fine. His activities are watching TV, reading, and interacting with his 20+ "dating" sites (no he doesn't go on dates but chats with purported women and I believe gets sent pictures). I have had to lock down my finances and separate myself from a joint credit card. I have spoken to a divorce lawyer because it is hard to be a caregiver and be so disrespected by your spouse at the same time. I have not been shy about how hurtful his behavior is to me. He promised to stop at one time and instead signed up for even more dating sites. He lies about it all the time. He refuses to believe that he is imperiling his own online security and finances. He has some kind of dementia as he often is convinced that he needs to go to work to solve some critical problem that only he has the expertise for, or that it is snowing in June, or that his brother left something outside for him, or that our son (deceased) has messed up his TV. He completely lacks empathy and gratitude. Never in this journey has he tried to thank the donor families, never mind the family who supports him. It's really hard to be totally honest about all of this because no sane person would put up with it. I would leave him if there was anyone else who would care for him and if our joint assets wouldn't get messed up because he would do nothing. I was both shocked and relieved to see the post about radical personality change after kidney transplant as that is exactly when the worst of his behavior began...just like a switch had been flipped. Thanks for letting me vent. It makes me feel better to know that I am not the only one.

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crose1 | @crose1 | Sep 19, 2022

Hi there,
My mother just received a kidney transplant last week and already I saw an immediate personality change in her. Immediately I feel like I dont know her. I look at her and the logical side says "that's mom" but a different side in me says "that is mom but it's not mom." I'm not sure if it's on a spiritual level or what but I feel the change. I'm having a hard time understanding it. This new kidney is a long awaited prayer but deep in my gut I feel uneasy about it.

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t101 | @t101 | Oct 25, 2023
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.

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I am going through the exact same thing right now. My husband had a kidney transplant very recently and I just don't know to make him happy. He is always very angry at me. I keep hoping it will get better, but it just doesn't. I give my everything and it just doesn't matter. He went into surgery my sweet loving happy funny guy, and came out someone I don't know. He is so angry. He yells at me for everything I try to do. He is not who i married anymore, and im scared that I will never see that wonderful person ever again. I want my husband back, I miss him. 😢

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2 replies
Scott R L | @scottrl | Oct 25, 2023
In reply to @t101 "I am going through the exact same thing right now. My husband had a kidney transplant..." + (show)
@t101

I am going through the exact same thing right now. My husband had a kidney transplant very recently and I just don't know to make him happy. He is always very angry at me. I keep hoping it will get better, but it just doesn't. I give my everything and it just doesn't matter. He went into surgery my sweet loving happy funny guy, and came out someone I don't know. He is so angry. He yells at me for everything I try to do. He is not who i married anymore, and im scared that I will never see that wonderful person ever again. I want my husband back, I miss him. 😢

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The only thing I can recommend is patience and prayer.

You don't say how long it's been since the operation, but anything like that is pretty traumatic. He may be going through a kind of psychic shock, possibly brought on by fear. He's maybe seen mortality for the first time.

It's monstrously unfair that he's venting on you, though. Nothing he's going through justifies abuse.

After my stroke, I had some pretty nasty mood swings. When I got unbearable, my wife would just leave the house for a while -- a couple of hours at least. (She always came back, though I wouldn't have blamed her if she didn't!)

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t101 | @t101 | Oct 25, 2023

It's been 3 weeks. I love him so very much. Thats what hurts the most.

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1 reply
Scott R L | @scottrl | Oct 25, 2023
In reply to @t101 "It's been 3 weeks. I love him so very much. Thats what hurts the most." + (show)
@t101

It's been 3 weeks. I love him so very much. Thats what hurts the most.

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I'm sure you do.

Have you made it clear to him how much he's hurting you? Does he know he's being so cruel?

And what exactly does he expect you to do for him? His recovery is up to him.

I pray that he will soon work through his personal grieving process and get back to his old self!

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