Spouse of traumatic brain injury ( TBI )

[lovelylaura38]

Anyone else struggle with a spouse who says and does things that go against LDS values but know they can't control it?

[Guest]

My sister's spouse suffered from a TBI and it completely changed his personality. I know it's an incredibly painful struggle to be in your position. I'm sorry.

[BadWolf]

One of my uncles & a good friend both suffered "frontal brain slosh" (from falls: my uncle while mountain climbing, my friend roofing) in the TBI sphere. My uncle made a complete recovery (after YEARS of retraining his brain), my good friend dropped out of therapy & conditioning after less than a year. We finally had to report him to CPS (child protective services) because his brain injury was causing him to do horrific things to his family. His wife had managed to hang on as the voice of reason for about 6 months. Then she started participating. (Which is pretty classic defense mechanism when someone you love is behaving abominably. The "bar" keeps getting moved.

For my once dear friend...

- He mixed up objects (as he walked would cradle the duffle bag lovingly, but be swinging the baby... Fortunately the baby only had a dislocated leg, he could have killed her).

- Once an authoritative parent, his idea of discipline be ame nothing short of full on abuse. He would hold his toddler to the ceiling, screwing at her, until she'd pee her pants.

My uncle was much the same, in the beginning, but he both had 5x of therapy for several hours every week, and had total trust in my aunt. He also kept his sense of humor "Id be the last to know! So if you say icecream for breakfast, kids, then its icecream for breakfast!" With a big wink towards our parents (these were things he DIDN'T get right for a long time. He had to run all of his ideas past someone (should I mow the pool to get rid of the pond scum? Habenero sauce for fries for the kids? Drinks are kept under the sink? Is this gentle? Do we cut out food with scissors? Do we use Brillo pads to bathe the kids? 1000, 10,000 things we just take for granted he had to entirely relearn. Its been 20 years and he still occasionally checks before doing things. Safe sounds dangerous in his head, and dangerous sounds safe).

My friend, otoh, went deep into paranoia & resentment.

I don't know if their divergent paths (trust v paranoia) were injury based or not.

I do know that the strongest indicator of recovery (from classes in school) is an intensive retraining/rewiring of the brain during thousands of hours of neurological therapy... And that most people find it "kill me now" boring, insulting, frustrating.

What are your spouse's challenges?

[Irishcolleen]

My dad had 2 major strokes in his early 40's. It changed him so much. He doesn't seem to be able to control what comes out of his mouth. He is angry most of the time. I feel sorry for my mom. It is so stressful for her. We can help with practical things, but we can't make Dad act appropriately. If anyone knows how to accomplish that, I'll surely take their advice!

[NeuroTypical]

Bishops are usually good folks to counsel with on such matters. Here's a story from one, who occasionally posts on another message board:

About year ago we had a brother in our ward who started bearing his testimony every month. It was odd, because it was about the benefits of calcium in our diets, but nothing doctrinal. It went on for a couple of months and I started wondering. I called his wife in to talk to her about her husband. She disclosed that her husband had recently been diagnosed with Frontal Temporal Dementia (FTD). She was scared. She had been afraid to tell anyone. She was embarrassed for herself and for him. He was slowly losing his mind. Literally. She was horrified at what her future was going to be. I counseled with her over the next couple of months as his condition remained pretty constant. Together, we laughed at some of the things he would say, cried at the things he was beginning to forget. And prayed that he would always remember he was loved by God.

I started getting a few well meaning phone calls, anonymous notes and people in my office saying I should do something about Bill and his testimony. "Children were beginning to laugh." "He ruins the Spirit of the meeting each month." "You have to do something."

I probably smirked. Smirked to keep from crying at the agony this sister was going through alone. She hadn't even told his family but was trying to isolate him from everyone. And I likely said, "I am aware of the situation."

Finally one Testimony Meeting last November he stood and began his testimony on the benefits of calcium. I watched as some in the congregation rolled their eyes and a few people pointed and poked their neighbors. But then Bill did something else. He began to spout off a string of profanities. I quickly stood up and escorted him back to his wife who was crying in the back. I said "Sister Bill, it is time to tell people." She agreed. I motioned for the Relief Society President to come sit by Sister Bill. Then I went back to the pulpit where there was still a bit of a din going on in the room. I stood at the pulpit and told the congregation of the struggles that Bill and his wife had been going through the last nine months. How she was embarrassed for him and worried about the future and how she was going to handle things. I explained that today was a day of healing for sister Bill but that Brother Bill would never be healed as there is no cure, no reversal, just slow steady decline. I said that he would slowly forget his past, slowly forget his family, slowly forget his wife. Eventually he would forget how to speak, forget how to take care of himself, forget how to eat. Eventually he would forget how to breathe. I then ended the meeting with my testimony of service, of devotion to your spouse in all times and all places, and devotion to a loving Heavenly Father who knows us and knows of our struggles.

Yeah, sometimes as leaders we know things. Things that are told to us in confidence. Things that are so personal and so private that we smirk when well meaning people tell us what we need to do about certain situations that they have only partial information on.

Try to forgive us for that.

[applepansy]

My mother's first stroke was in 1970 during the delivery of my baby sister. My mother became more emotionally abusive towards me, yet more caring towards the younger kids.

Its hard to deal with TBI. Its equally hard to predict from one person to the next as everyone is different.

Whatever you do make sure any children around him are SAFE!

EDIT: Along the lines of everyone being different.... My grandmother's first major stroke didn't happen until she was in her 80s. After she learned to talk, walk, read and write the biggest noticeable difference was she was MORE like herself. She was ambidextrous and the stroke took out the entire left hemisphere of her brain. It was a privilege to have her live with us for awhile.

Edited May 3, 2013 by applepansy

[lovelylaura38]

Well my husband had a major car accident and pretty much has no frontal lobes which controls the impulsiveness, poor judgement, memory. We go to counseling, but it only works for a bit until he forgets or reverts back. He looks normal, acts normal in public etc...but He has racked up over 50,000 in credit card charges on the internet which is tough because he is unemployed and we have a 1 year old, violent outbursts and hurtful comments, increased sexual libido which has led to porn and other things. It is rough because he is an adult and can open credit cards without my knowledge. I am afraid to go to the bishop because some in the past just have looked at the sin and not the fact that because of his injury he won't be judged entirely for those things. It is just hard because I grew up knowing those things are wrong and even though he cannot control much of it it still hurts. We have been through the temple and so I believe in forever and that his limitations now will not be an issue later on. Many people are so quick to jump to divorce, but there are reasons why we were brought together and a reason why I stay. My father suffered from a brain tumor for 12 years when I was 12 and he died when I was 23. My father died 1 year before my husband's car accident. My husband and I did not meet until 10 years later, yet when he saw a picture of my dad in a photo album when we were dating he said I know that man ( picture was pre brain tumor) and it was when I was in a coma for three months he was there. The spirit was so strong I knew it was true and so did my Mom. Was I being prepared through my dad's brain injury to be the eternal companion to someone with a TBI ? That is what makes it hard, I love him dearly, but some days it is too much. He is a husband some days and a child the next, or even within minutes. I pray and pray and the answer is the same which is confusing, the answer is You have done enough and done all you can and taken him so far, BUT remember these are earthly trials and it will not always be like this. My dad is a constant presence when I am weak, discouraged and just break down. I guess it is hard because you try to explain to people who haven't dealt with it but all you want is some comfort. I don't want him to be judged either by my friends or family. My mother is amazing and our biggest advocate. He has made poor choices in the past before we met that still are haunting us. So there it is. I don't fear for our safety but I also don't want our daughter to grow up seeing how cruel some of his comments and outbursts are. Children don't always understand that Daddy didn't mean what he said, but we haven't gotten there yet because she is only 1. So there it is. Any advice?

[applepansy]

Well my husband had a major car accident and pretty much has no frontal lobes which controls the impulsiveness, poor judgement, memory. We go to counseling, but it only works for a bit until he forgets or reverts back. He looks normal, acts normal in public etc...but He has racked up over 50,000 in credit card charges on the internet which is tough because he is unemployed and we have a 1 year old, violent outbursts and hurtful comments, increased sexual libido which has led to porn and other things. It is rough because he is an adult and can open credit cards without my knowledge. I am afraid to go to the bishop because some in the past just have looked at the sin and not the fact that because of his injury he won't be judged entirely for those things. It is just hard because I grew up knowing those things are wrong and even though he cannot control much of it it still hurts. We have been through the temple and so I believe in forever and that his limitations now will not be an issue later on. Many people are so quick to jump to divorce, but there are reasons why we were brought together and a reason why I stay. My father suffered from a brain tumor for 12 years when I was 12 and he died when I was 23. My father died 1 year before my husband's car accident. My husband and I did not meet until 10 years later, yet when he saw a picture of my dad in a photo album when we were dating he said I know that man ( picture was pre brain tumor) and it was when I was in a coma for three months he was there. The spirit was so strong I knew it was true and so did my Mom. Was I being prepared through my dad's brain injury to be the eternal companion to someone with a TBI ? That is what makes it hard, I love him dearly, but some days it is too much. He is a husband some days and a child the next, or even within minutes. I pray and pray and the answer is the same which is confusing, the answer is You have done enough and done all you can and taken him so far, BUT remember these are earthly trials and it will not always be like this. My dad is a constant presence when I am weak, discouraged and just break down. I guess it is hard because you try to explain to people who haven't dealt with it but all you want is some comfort. I don't want him to be judged either by my friends or family. My mother is amazing and our biggest advocate. He has made poor choices in the past before we met that still are haunting us. So there it is. I don't fear for our safety but I also don't want our daughter to grow up seeing how cruel some of his comments and outbursts are. Children don't always understand that Daddy didn't mean what he said, but we haven't gotten there yet because she is only 1. So there it is. Any advice?

See bolded. I'm a bit confused by the timeline here.

If you're going to stay with him you need to protect your family financially and in other ways. He may be able to open up credit and run up bills but you don't have to be connected to his bad financial choices. Keep the family finances separate from your husband's. Do not put your husband's name on the accounts or the house, car, etc. Insist your credit score be separate. If your husband has to declare bankruptcy eventually its all his, not yours. I know this can happen because my sister's brother-in-law has had to keep family finances separate from his wife's because she is a compulsive shopper. She had to declare bankruptcy but because the house and other things were in his name only her bankruptcy only involved her. She's in trouble again without the bankruptcy net to catch her. I'm not sure what will happen now, but I do know her credit is so bad nobody will open another credit card for her.

I would also make sure the Bishop understands the medical issues. Give him a chance. If he finds out about the things your husband is doing and doesn't have the medical background, he won't be able to help you in appropriate ways.

I wish you all the best in your journey. This is a tough one.

[lovelylaura38]

Timeline was my dad died when I was 23, I didn't meet my husband until I was 32. My father died 1 year before my "future" husband's car accident. So my husband had contact with my father while he was in his coma, 10 years before we even met.