← Return to Caregiver/spouse of kidney recipient with personality change

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@IndianaScott

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

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Replies to "Hello @lulujj777 I am Scott and it is nice to e-meet you here on the Mayo..."

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!