Caregiver/spouse of kidney recipient with personality change

Hello @lulujj777 I am Scott and it is nice to e-meet you here on the Mayo Connect Caregivers group. I am sorry it is under such trying circumstances, but I am pleased you found us!

I was my wife's caregiver for 14+ years during her war with brain cancer. Not a transplant, I understand, but many of the concerns you raised in your post sounded very familiar to me. It reminded me also of the time someone said to me 'caregiving ain't for wimps', which is certainly true.

My wife had many personality changes, was emotionally explosive at times, and often got angry with me, or blamed me, at one time or another for just about everything under the sun. Many of which were untrue. This was very challenging for me since before her illness, and during our 41 years of marriage, that was not my wife's style at all. But it happened and I was the one who had to cope with it.

Unfortunately, I have no magic suggestions or fixes and your social worker may have told you these couple of things I particularly remember so I apologize if I am repeating. First my wife's neuro-oncologist told me the reason a patient lashes out at their caregiver is often because they are so scared all the time of living with chronic illness that they feel the only person they can be honest with is the person they love the most. They can be unguarded, be safe, say what they feel, etc. and know the person will still love them. Sounds strange, but also made sense to me. He also said I needed to remember my wife wakes up everyday with her illness, aches, pains, and fears right in her face and this can make any day seem daunting, just waking up. Finally he said to remember it was the disease talking and not my 'pre-disease' wife. That the disease is in control of her life and so she often went against my attempts to help, suggestions of her medical team, and others as her effort to exert some control in a life out of control for her.

It didn't make life perfect for me, but it did ease some of the burden of how I reacted to her outbursts, etc.

I often say 'there are no superheroes in caregiving. Superman and Wonder Woman only exist in the comics. So all a caregiver can do is their best at the time.

Does your husband have times of calm and less anger?

Strength, courage, and peace

Hello @IndianaScott & @jesfactsmon

Thank you for sharing your stories & suggestions. It does help knowing I'm not alone in this.

Being a caregiver certainly is not for whimps. I'm not feeling like I'm much of a caregiver though as he will not let me help him most of the time. But then occasionally he will blow up & accuse me of not helping him. Its great that he has actually been able to physically do more, but some of the decisions he has been making are not in his best interest & some could be life-threatening. I just don't know what to do to when he refuses my advice. As I'm typing now, I realize I should probably keep informing his social worker and continue praying for him & our marriage.

@IndianaScott to answer your question, yes he does have times when he is calm. He also has times when he gets very emotional. However the times of anger, being short & rude are much more frequent.

@jesfactsmon he was treated a few times with very high doses of steroids recently and he takes a small dose every day. He is also on a couple of blood pressure meds that could be contributing to the personality change according to the research I've done. Thank you for suggesting I look up his other meds.

I appreciate the support!

@lulujj777
Well, if his personality is drastically different now than before the steroids, I'd definitely suspect the steroids. Just google "steroids causing mood changes" (which I'm sure you have) and you see the articles. Prednisone especially, which is the one I got, can cause major personality issues. I'm no expert, but if and when he is no longer receiving steroids his mood symptoms will hopefully subside. It is scary what some drugs (and steroids are definitely drugs) can do to the brain. Bill, the man I described in my other post, was exactly like your husband.

I am so sorry you are having to go through this. I do believe you need to have a friendly ear from someone to listen to you as you deal with this. Do you have someone you can talk to, a good friend or relative who understands and can give you some solace and comfort? Even if abuse is coming to you through artificial means (such as steroids) it still affects you the same, it feels BAD, it hurts. I imagine what you are experiencing is the hardest thing to cope with as a caregiver. I feel for you and hope your husband comes back from this soon, for your sake as well as his. All my best to you, Hank

Just reading the post. YES, it is the steroids. I didn’t fully understand until my husband came off and then went back on. He would start yelling at me in the aisle of a grocery store. Go off at a waiter in the restaurant. I realized it wasn’t him it was the steroid.mi remember the first telling the doctor, I didn’t understand what was going on but I thought I would divorce until I realized he didn’t know it was happening. I showed a video to him when he was weaned the first time and he cried. He apologized that he was putting me through this.it is the steroids!!!!!!

@miriam57 thank you for sharing this. I have also at times wondered how the marriage could last through this. Finding this group has really helped in my understanding of the issue. It is still a daily struggle right now dealing with this. And without my faith in the Lord, I would have no hope.

I like the idea of finding a video to share once he is off them. I'll be researching that.

Anyone have any input on how long it takes the steroids to get out of the system once weaned off?

@lulujj777 You asked how long steroids stay in the system. I don’t really know but I’d sure like to. Will have to investigate. Have things gotten any better at home? Do you get any quiet time for you? Steroids are miraculous, but terrible, I think. I get 2 more steroid infusions this week. Great Christmas present! Please take care and let us know how you’re doing. Becky

@lulujj777 i looked up how long steroids stay in the body. The effects are usually gone in about 2-8 weeks. You said that his doctors are aware of his behavior—are they not concerned?

@lulujj777, I wanted to check in to see how you and your husband are doing.

Sarah, I can only begin to imagine the emotional rollercoaster you've been on for the past 10+ years and that it has resulted in you and your husband separating. I also want to invite fellow members @cseymour @mnina @delba @paradis @destmg96 @hullegan @cindyt63 @momoftwoboys to this post.

Sarah, do you also have children? How long ago did you separate?

My sweet husband's personality changed after he received his kidney. He plays video games all day long and won't help me with anything. He spends extremes amount of money. He is just rude, mean, doesn't interact with me, doesn't want sex. I thought it was depression but its not. I am disabled and he will tell me he is not doing anything for me so I need to figure out a way I can do things for my self. He was never like this he use to be happy to help me hug me all the time. I feel we are leaning toward divorce cause I don't know this man anymore. Even my family and friends say he has changed. He has a son and he was his world and now he does nothing with him. Is it his medication or is this what happens?