Genetics - terrifying

So I'm not sure if I can make this short, but I'll try. I'm really not even sure what my point for writing it is, other then the more connections/information I can find at this time the better.  The gist of it is my dad was hard growing up with.  He was mean and crabby, and as we/he got older he would become irrationally angry and just horrible to be around.  He'd obsess about crazy stuff, would blame the world for his problems and just couldn't let things go.  It seemed like he would scream about something all day long.  He was also a hard worker, extremely intelligent, ran his own business, was very good with money and investing (one of the things he obsessed over).  He was horrible to my mom, and in the end cheated on her and wrote about it in his notes (he documented everything, in a hoarding OCD kind of way).  He got worse as he got older.  My mom finally divorced him after 35 years of marriage, about 7 years ago.
 
We haven't been close since, well we never really were.  He didn't really seem to want to be involved with us or my kids.  But we tried to do the typical holidays with him.  At this point he was no longer mean.  Just odd.  I thought maybe it was just depression at losing my mom and not having his retirement work out the way he had planned.  He became harder and harder to get ahold of, and frankly it was easier to just stop doing some of the holiday things.  It was a lot of work, and he really didn't seem to want to be there anyway.
 
Fast forward to this past August.  I realized we hadn't heard from him in over a year, hadn't gotten any birthday cards in the mail, and his home phone line appeared to be disconnected.  I decided to just show up there one day.  I found him in a hoarders nightmare.  No electricity, filthy house that smelled worse than anything I've ever smelled.  His hygiene was pretty bad too.  He was huddled at his table doing crossword puzzles.  Surrounded by tons of them and his notes.  His mail from years, was just piled all over the place.  I realized he seemed kind of clueless about things.  In the past I would have been too afraid to question things.  After all, he was a genius, and very private.  If he was having a problem he wouldn't have let anyone in on it.  But now, as I tentatively started bagging up all his mail in boxes and bags and putting it in my car in front of him, he was letting me.  Just continued on with his crosswords puzzles.  I took him shopping for food.  His fridge was filled with moldy rotting food.  I had no idea how long he had been without electricity.  Didn't seem to phase him, just said he recently paid the bill so it should be back on soon.
 
I spent the past 6 months unraveling this mess.  Going through years worth of mail, sorting through his business mail and delinquent taxes, and unpaid bills and liens and cancelling every single magazine subscription and dvd and book club I could find.  Any junk mail that came, he signed up for and sent money to.  The more he sent, the more he received.  I found that his $250,000 in investements (his half from the divorce 5 years earlier), his savings accounts, his life insurance policies - all of it was gone.  He now has tons and tons of credit card debt and collections agencies coming after him.  He started associating with bad people who took advantage of him, and he had no idea.  He thinks they are his friends.  I see he has written countless checks to them.  Some of them they even wrote to themselves and forged his signature on.  He is the complete opposite person.  He would not have trusted anyone in the past.  He never would have associated with people like them.  He was so bright and sharp, and this was just so bizarre.  
 
We finally got our diagnosis in December.  Frontotemporal Dementia (FTD).  It basically affects your judgment and personality first.  It doesn't impact memory until later on.  It was confirmed by visible degeneration in his right frontal lobe.  This form of dementia starts earlier - 40's, 50's 60's (he's only 64).  The more I'm reading, the more I'm seeing his crazy, mean, irrational side was also due to this, that was the start of it, probably in his 40's.  We had no clue.  Just thought he was evil at times.  Now look how his life ended up.  He has nothing.  I'm in the process of getting him into a VA nursing home, since he served in Viet Nam, that's the only thing he can afford.  We're lucky he has this connection.
 
When the disease progresses he will no longer be able to walk, talk, use the bathroom, etc, until it kills him.  I now handle all his finances and have his mail forwarded to my house.  I have gotten durable and medical POA for him.  It's been a full time job trying to unravel and sort through this and keep up with his medical care and finances - trying to figure out how to save his house before it's foreclosed (it's paid for but he owes the taxes), how to unravel and close his business, I've been filing all his business and payroll taxes slowly, but he can't pay them.  It's making my head spin.  Not to mention I'm trying to keep up with my own clients, the kids school stuff and I've also been looking for a job - which I start on Friday...and my own therapy for my own anxiety.  I feel like I'm not the multi-tasker I once was.
 
Now, the reason for my terror.  FTD can be environmental or it is genetic.  If it's genetic, I have a 50% chance of getting this.  Basically if you have the gene, you get FTD - it's the dominant gene.  It's kind of like Huntington's Disease.  If I have it, then my kids have a 50% chance of getting this horrifying disease.  I don't know if my dad carries the gene, or if he could have gotten it from being in Viet Nam.  I will say his family was very odd and very secretive about things.  I don't have a good family history from them.  There is a story of an uncle that behaved similarly, spent their life savings, got divorced, died young.  My dad also has a brother diagnosed with dementia, but they don't think it's FTD. Seems to have more memory issues than behavior issues.  The whole family has issues with alcohol, including my dad - which is much worse now with the FTD because it's one of his "obsessions".  My uncle's family believes his dementia was brought on by heavy drinking.  I don't think that can be the case with FTD though.  And the fact that there is another case of dementia in the family, even though it may not be FTD, is enough to make me think my dad's is genetic.
 
I'm trying to sort out how much of this I want to know.  Whether I have my dad tested for the gene, myself, my siblings...it would be a huge relief to find out his isn't genetic, or that I don't have the gene.  But it's a big risk to get tested and find out the opposite.  I feel like my head is less sharp than it used to be.  Like I'm in the middle of a thousand things and can't keep it straight.  I feel like I have trouble remembering words or adding up numbers and I feel dizzy.  I had the dizzy feelings last year too and was diagnosed with chronic fatigue syndrome brought on by my anxiety.  But now it's in the back of my head, what if it's not CFS, but the start of something they would not have thought to look for?
 
I know this is so rare, so it's a long shot.  But does anyone have any experience with this?  Know anyone with FTD?  Know anything about genetics that can offer any insight?

 

Wow, how scary!  My grandmother on one side and a great aunt on the other side both had dementia.  I don't think it was the same thing, but it's a scary thing to think about.  Honestly, my grandmother sounds a lot like your dad, though.  She always was awful (though she'd have occasional moments where she'd break down and apologize for being so nasty) and I'm incredibly proud of my dad for what a wonderful human being he is, inspite of terrible parents.  
 
Are there any known treatments?  I can certainly understand that it would be scary to know that you had the gene.  But I think I'd want to know, and want my family to know, so that they could maybe be more understanding and forgiving if I got to be difficult to live with.  Maybe you can find a support group for family members with it?  

 

Oh my gosh, Denise. Oh wow. No, I don't have any experience, I'm sorry. My heart hurts so bad for you.

I just don't know what I would do. I just want to give you the biggest hug right now. I don't know how you've managed all of that! You're so strong! Such an amazing daughter. Truly.

 

I don't have any experience with this specific disease, but wow, that is scary.  My mom has a distant cousin who died of Lou Gehrig's, as did her mother, but they didn't know what it was at that time and didn't figure out what it was until my mom's cousin died in her late 40's.  Now that they know, her kids and grandkids are understandably very worried.  I would say, if you can get tested for what your dad has, do it.  If you find out you don't have it, it's a huge relief.  If you find out it is genetic and you do have it, maybe there are things you can do now to slow the progression, or to prepare for it so that what has happened to your dad doesn't have to happen again.  And of course, there are always new treatments being developed that you might be able to have that your dad didn't have
 
As a counselor, I CAN tell you that high levels of stress like you are under can cause all the issues you are experiencing - dizziness, anxiety, fatigue, not feeling like you are thinking clearly.  You are under tons of stress, and I would guess probably not sleeping well either, so those symptoms could very well be just what you are dealing with.  I am glad to hear you are getting counseling.  You may want to consider medication for anxiety and stress level as well.  Talk to your counselor and doctor about that, and take care of yourself.

 

I am so sorry that you are dealing with this. It would be really scary to have a genetic certainty in your future. I think its great that you are in counseling working through all of this and hopefully you can resolve your feelings on whether you get tested.
 
My best friend's dad died of Alzheimer's, and there is some kind of genetic link. Her and her brothers had to decide whether to get tested or not. Her brother did and found he had the gene. He is focusing on making sure he has everything planned out, retiring early, and doing all the things he wants to do in life. My friend decided she didn't want to know, and is still trying to make the most out of her life because she might have it but she doesn't want to know for sure because she'll worry about it all the time. I believe it's a matter of how much uncertainty you can handle.
 
So many good vibes your way; this sounds like a really tough time for you.

 

I do not have experience with this particular type of dementia but  I have to echo what eagleswings has said about all the stress you are under probably causing the symptoms you are experiencing right now.  I am glad you are seeing a counselor yourself.  Your father is lucky to have you and that you checked on him when you did.
As for the genetic component, I agree with Jen, I guess it depends on how much uncertainty you can handle.  If it were me, I would probably want to know.  Having the gene doesn't necessarily mean it will happen to you but knowing that you have the gene could definitely be placed in your medical records so that your doctors are aware, so if you start reporting symptoms FTD will be on their radar.
:hug: to you.

 

 
Actually, with FTD, I do believe if you have the gene you will get FTD.  The only question would be when 

 

Thanks for all your support.  I know I have to give it a little time before I make a decision.  See if after the shock wears off a little if I can go back to living with it in the back of my mind or if it will continue to stay in the forefront.  I also need to get some financial things in order no matter what.  I finally just prepared a will for us. We have life insurance, but I want to look into disability and long term care insurance.  If I find out before doing this, I may not qualify with a preexisting condition.  I don't know if I will ever come to peace with finding out for sure though, knowing right now there is no medications that will help and nothing you can do to slow it down.  I think I'd be better off always wondering and having that sliver of hope that maybe my dad's isn't the genetic type, than finding out for sure and always worrying if my scattered thoughts or that days headache is the beginning of stage 1.  Of course finding out he or I don't have the gene would be huge.  But it's such a risk.  I will see what my other siblings are going to do, since that will probably play into my decision.  I hope I will have a clearer feeling of what I want to do after more time passes.  I'm thinking about contacting a university that has been researching FTD and see what kind of studies are out there, see if they'd be interested in discussing my dad's case.  I'm currently seeing a therapist for my emetophobia and not about this.  But that treatment isn't helping and I just discovered this genetic aspect, so I will probably be bringing this up next time.

 

I am so sorry you are dealing with all of this.  I cannot imagine the stress.   I have a dear friend whose mom had FTD.  She passed away a few years ago. They had no idea like you that personalities changes and other signs were due to a devastating disease.  I do remember he was so thankful they got her into a nursing home and he really wished they had done so earlier it really took a lot of stress of him and his sisters.  He and his sisters spoke with a genetic counselor which they all found helpful.  If you have not already done so I would suggest speaking with a genetic counselor.  He did not have testing done however he does make sure he has everything in order.  It weighs heavily on his mind since he is fast approaching the age his mom likely started showing symptoms. 
 
Again I am so sorry you are having to deal with this.  It was an extremely difficult time for my friend. 

 

Denise, I am so very sorry for all you are going through.  I contacted my immunologist in hopes that he would be able to help.  All he was able to share was the following: 
I don't know much about the genetics of FTD but environment likely plays a large role in its development.  The more inflammation in the brain, the less perfusion you get.  And the less perfusion you get, the more likely you are to have dementia. 

 

Thanks so much for taking the time to ask.  I really appreciate it. 

 

Thanks so much for sharing this.  Does your friend know for sure that his mom's disease was genetic-based?  Are there any other family members who have gotten it?  I have to stop reading about it.  The more I'm reading is all about the genetics, that I'm finding it hard to believe there really are environmental causes of something so horrible.  I have been considering talking with a genetic counselor.  I'm not ready to yet, but I think I will need to in the future.

 

Denise, I am so sorry you are going through this situation. You are a good daughter. Be strong, You don't have to decide right away what to do about testing.

 

So it just keeps getting better.  We're so close to getting my dad into the VA nursing home.  Once that happens it will be a little bit of a relief, and then I can move on handling more of the financial things.  So Friday I got a call that my dad was arrested and in jail.  He was out wandering again, looking for cigarettes and they found him going through someone's car looking for cigarettes and spare change.  He's still in jail because I just don't know what to do with him right now.  I can't take him home with me, I can't stay with him at his house and I'm afraid if he's alone he'll do it again, or worse.  His safety is at risk.  His court date is 2/13.  I'm also afraid if the VA home finds out about this, it will jeopardize him getting in there.  And he has no where else to go.  If he already is in the home at the time of his court date, he'll be almost 2 hours away.  I'm not really clear on what I need to do, and since this happened on a Friday early evening, I wasn't able to make any calls.  I think in order to get a public defender we need to go through a process to prove he can't afford an attorney.  I don't know if that delays things more.  I also have to get his medical records from the VA for his defense, I assume, and dealing with them in a timely manner is near impossible.  I have access to his medical records online, and of course nothing is populated in the system.  In the meantime I keep calling the police department to check in to see how my dad's doing.  As if he's a patient in a hospital.  I feel so bad that he's still there.  My family thinks we should keep him there until his court date for his safety. The jail is a small city jail and they aren't equipped to do that, which might mean the court date would be moved up.  Which would be good, other than the fact I'm not sure what I need to do to get his defense handled.  Sometimes I feel like the universe is working against me. The situation was bad enough as it was.

 

I am sorry you're going through even more. I would be surprised if your dad didn't get into the va over it. If anything it speaks to the need for him to be in constant care, in a dementia facility. Is there any services you can access like a social worker to help you navigate this?

 

I agree with Jen, it seems like this will just support his need for care. And social workers can be such a help!

I'm so sorry, Denise.