The very short story: My wife (L) and I are in our early 50s with a teenage son. L has a dx of both TBI and vbFTD.
Longer version: A few years ago my wife was in a bicycle accident which resulted in a TBI. Thankfully the other cyclist was fine. L had veared in front of the other cyclist because she got tired.
Due to problems at work and at home I went with my wife to see her psychiatrist. Prior to the accident I was planning on accompanying her anyway due to symptoms which I felt were not being treated (she had suffered from anxiety/depression for many years and 6 months earlier changed psychiatrists due to severe sleep problems that her previous doctor couldn't solve). This lead to neuropsych testing which led to the end of driving and stovetop cooking for her.
She then started cognitive therapy and we hired a job coach. After a few months the speech therapist expressed her concern to me that L was continuing to do worse. So off to more specialists. Fortunately we ended up seeing a memory care specialist who strongly suspected bvFTD (he couldn't even finish his exam due to a violent outburst by L). He hesistated because the TBI and because the PET scan was clean and he expected to see major atrophy. Later a FTD specialist was willing to put the FTD dx on paper.
Meanwhile L started short term disability due to problems doing her job. 3 months later we had the FTD dx and she went on long term disability and we applied for SSDI (no problems there). L was at home alone during the days and able to take very long walks (over 1 mile). We also took care of DPOA and were working on new wills and MPOA.
As I took over housekeeping duties I noticed problems that L was having for a long time. In particular I noticed that she wasn't following instructions when cooking, she would just dump everything together and put it in the microwave. Even if instructions said to cook parts separately. She also insisted on defrosting everything and I noticed almost all prepared food had in it instructions "do not defrost, cook frozen."
But the fun never stops. After a few months L's behavior terrified our son and he called 911. Nothing came from that but a week later he called 911 again because she attacked me (I wasn't in any danger but it was very scary for him). Nothing like having police officers crawling over the house. L wanted some iced tea (she had a bottle of gatorade with her) and tried pushing her way to the kitchen to get a glass and tea. The police blocked her way (since they were interviewing me in the kitchen) and she slapped an officer. On went the cuffs. The police wanted to take her to the hospital but she didn't want to go there (if given the choice between jail and psych ward which would you choose) and social services wouldn't approve her going to the hospital because she had a neurological condition.
So began months of lawyer bills (one for her, one for me), court dates, and delays. $5,000+ later they struck a deal for 2 years probation if she got a caregiver. Thankfully no incidents in the following 2 years so her criminal record has been expurged.
So over the past few years we have seen a huge loss of energy, moved from caregiver a few hours a week to most of the time I am at work. FTD progression seems slow, symptoms come and go, we might be seeing some recovery from the FTD. Medications have made a huge difference and need occasional adjustment. She is less capable at some things and speech difficulties are increasing, definitely showing signs of semantic dementia. Also seeing small motion problems which has contributed to some falls. But seems happy most of the time and can stay at home. We may be seeing an increase in aggitation, anxiety and aggression.
Rough ride Paul. I don't understand, once a person has a medical history of brain injury or dementia, why there would even be thoughts of prosecution for something like slapping an officer.
it is like we were posting on another thread, they CANT break the law period, or you will have the problems like paulc to go to court pay fines and prove dementia. and even then you can see they didnt drop the case but gave probation! and if she were to break that probation period gosh only knows they could do more serious threats due to non compliance. SICK or not! its why we preach so often to try to stay one step ahead on medications to counteract the ever changing personalities and actions.
but to the point, paulc your story is dramatic like many of ours. and very sad. sounds like you are on top of all the issues and doing a fabulous job. thanks for sharing.
Paul, this is so sad. You and your wife are so young to be going through all this. The bicycle accident struck a chord with me. I have an avid bicycle riding grandson. I have a constant fear of him being hit by a car. This very thing happened this week to a young mother here. She was hit by a drunk driver. You're doing a good job under very difficult circumstances.
The police officer in charge wanted to take her to the psych ward. L wouldn't cooperate and her striking of the officer was a felony. Her assault of me was a misdemeanor but the laws are extremely strict on spousal abuse and arrest is mandatory. I didn't mention that the office and the magistrate both risked their jobs by letter her come home with me that night, since there was a mandatory 3-day separation period that they worked around. If you live in a place with strong spousal abuse laws officers have very little leeway. The laws were written to combat the problem when battered women would drop charges against their husbands or boyfriends, and get battered again (or killed). No law is perfect.
The probation officer was very nice and we didn't have to see him after 6 months. I think she we much easier to deal with than his average customer.
We learned that we could prevent her episodes by behaving ourselves and not doing things that agitate her. And the result let me say to we that we were required by law to hire a caregiver, something that she greatly resisted, but now couldn't do without.
I have noticed and appreciated your comments to me. And thought, "I don't know much about him..."
I first posted here late in 2011 and promptly had a meltdown. In retrospect, I think I was very affected by "talking" here and went emotionally awry. Regardless, I was so welcomed (back) and so encouraged to stay.
So, knowing what this support has meant to me I try to notice and welcome those who are newly posting. I missed your initial post until just finding it now.
H and I are in our early 50's also. No children; his dx is epilepsy along with many ad related versions- most repeated is FTD- dx was 6 years ago.
paul welcome to this nightmare! this place is really a lifesaver for me. I am not an open sharing person but sometimes here it just comes out. Everyone here listens...they may not all approve or agree at how things are done but they do understand and realize that everyone is different and each person has different limits. My dh and I are both in our late fifties and sometimes I grovel in my own sorry stew but when I read about how other people have dealt with things I realize I am not alone. You are not alone.
I was fortunate that I attended my first face-to-face support group meeting shortly after the police incident. The first person to speak that night was someone going through a nightmare created by her stepchildren, I did my spiel, and then the 3rd person started with that she could top either of us. I've been quite active at ftpsupportgroup for 3 years and reading messages for almost as long.
Sometimes I think we need to rally together and convince the powers that be that it impossible for one to break the law if one does not comprehend the law anymore. What do you friends think? Welcome, Paulc, to our dysfunctional family. And that was a joke.
That is covered by the law, the basic insanity plea. My lawyer said it is very dangerous to use. If you don't understand the law and are considered to be a danger to yourself or others you can be locked away indefinitely at a state institution. If Social Services doesn't accept the case as a medical matter then there isn't much the law can do.