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Very interesting thread. I'd be curious how much health care goes to illegal immigrants in those border states. And then how healthcare is for the rest of the population for diseases such as ALS. I want everybody to have healthcare. Nobody should be left out in the cold so to speak with illnesses such as ALS. However, I am still curious about this stuff.
 
Me neither! It is so frustrating to be trying to deal with everything and not even being able to have him understand or empathize with what I am having to do. I have seen enough now to know that it will not improve. Even though I know that he is not making a choice to be this way, I get so frustrated that it makes everything harder to deal with. I know that I must just come to terms with the situation, but I am only a human being and tend to follow my heart not my brain. At my age, it is a little late to change now. Thank you for sharing with me. It helps to know that someone else understands how I feel.
Janis
 
Katie, one question. Do you think the dementia increased the rate of the progression of the ALS? My husband seems to have progressed fairly rapidly over the last 3 months.
Janis
 
Janis... what I've read is that progression DOES seem to be faster when there is an ALS/FTD combination. I've not read anything that indicates solid answers as to why. One speculation, which I believe is truly part of the issue, is that compliance level is much lower. Eating is the easiest example: because there is a lack of cause & effect understanding, the person will continue to put food in their mouth even while choking. This is why we really never considered a PEG. Glen already needed all of his food pureed, and yet I woke one night to hear him choking... he'd rooted around in the fridge and found an apple of all things! Thought we'd gotten rid of all those but.... We had baby gates across all the stairs because he would insist on going up and down them even though it would invariably cause a fall. A trach was never even considered an option because there's no way he could have handled the emotions. It also frequently delays diagnosis and so again.. progression seems faster. Wish I could be more positive for you!
 
Thanks, Katie. It isn't positive that I am looking for. It is the truth so that I am better prepared to face what is coming. My husband isn't following the recommendations from his neuro. She suggested that he get all his nutrition from peg and he continues to eat like always. Part of it is because of the routine involved and part is that he doesn't think he is choking that much. He doesn't consider coughing while eating or after eating as choking. He won't try wearing the bi-pap at night because he thinks he still tosses and turns during the night even though I have to position him in bed now. The PEG is the only procedure that we have done and hopefully will do. He has said that he doesn't want a trach or to be vented, but I'm afraid that may change when the choking becomes more severe. If I can be nosy, how long did your husband live after his physical symptoms appeared? How severe was the dementia toward the end?
I appreciate your answers so much.
Janis
 
Glen lived 1 year and 2 weeks after diagnosis... Probably 2 -3 years after my son and I started noticing physical symptoms. His dementia was actually quite severe. He had both visual and audio hallucinations, odd behavioral obsessions, ZERO social filters. When the psychiatrist first started him on the anti-psychotic Seroquel he was taking one tablet a day. By the time of his death he was on five a day with me having permission from the doc to give him up to two more if we were going into a stressful situation or something "set him off." Honestly his physical symptoms were somewhat helpful.. with the use of baby locks and gates we were able to make the house somewhat safer for him, though he did manage to climb over the baby gate to go upstairs or get past the front door lock to go looking for the young lady he obssessed was being assaulted

About the same time that he was diagnosed, he fell off his bike. He bruised some ribs but swore to us he hadn't hit his head. It was several months later that our son found Glen's bike helmet.. with a huge crack, and a chunk the size of a quarter missing from the shell. I will always believe that this accident accellerated the progression of the dementia.
 
Wow Katie. i hope it doesnt affend you if i comment on the dosage of Seroquel that Glen was taking- WOW.
I know he needed it, im not disputing that. I used to take it and had to get off of it because ONE pill made me zonk out for hours. and he took 5 a day? Bless you for dealing with all that.
 
I am on Seroquel now and take 3/day. I take them at night though. It's been amazing for me! I can totally see how that would help Glen and others with severe FTD. Not sure if severe is an appropriate word here.
 
No offense taken Liz.. file again under "it is what it is" To give you and idea: One day we found him at the bottom of the stairs (the gate worked that time) just gazing up the stairway. Couldn't resist: "What are you lookin' at babe?" "There's a beautiful creature up there...." Ooookay. Later in the day we realized the dvd cover for Avatar was on the kitchen table, so we're pretty sure there was a giant blue cat person upstairs.
 
Katie- I find that to be incredibly cute. But if I had to deal with that all of the time, id probably be singing a different tune.
 
Unless your mother has been medically deemed 'incompetent" they can NOT keep her in a nursing home against her will. Find a legal aide attorney. It's a well-known fact that ALS doesn't usually cause any mental issues, so it shouldn't be all that terribly difficult to prove she is of a sound mind.

Is she able to communicate at all? With eyes? Fingers on words/letters? Anything?

I'm going to be very sure that my daughter has a medical proxy for me should I ever get to that point. I don't want to be at the mercy of anyone else!

Contact the ALSA organization in your state for help.

I don't think my mom has any dementia or any loss of mental function at all. She does seem depressed, but who wouldn't be in her situation? As long as my has been able to communicate with me, whether it was facebook, text messages, writing, she's always been able to answer any questions I had about anything. I know she's of sound mind, and I know I can get her out that nursing home. I promised her last night that I wouldn't give up on her. She can barely write anymore, so I really hope we can get her eye gaze communicator working as soon as possible. We don't have a table mount for it, and they're about $1,000 online. I checked the ALS loan closet and they don't have any in Cincinnati or Columbus Ohio. My next stop is to check the MDA loaner closet. If they don't have one I don't know what we'll do. I can't stand seeing her there helpless not even able to say hello to me. All she can do is cry. At least if she were home with us I would know she was happy.
 
My husband's dementia is really showing most in executive functioning and in emotional empathy. He seems to lack any understanding of the effects his emotional flatness has on the rest of us, especially me. I think I might could use some Seroquel. Maybe that would help me deal better with the problems.
Janis
 
I hear ya Janis. There is a dent about the size of a quarter in my living room wall. I got so frustrated and aggravated on night that I chucked the large plastic glass from my iced tea (it was empty!) across the room. My son thinks I should just put a frame around it and leave it there... a testament to me throwing things at walls, not people! Before we had the dementia diagnosis, I was so close to leaving him that I'd moved out of our room and downstairs. No reaction. I remember being right up in his face yelling that I was going... no reaction. Nothing. I may as well have said "It's Tuesday." It's hard to explain the frustration of that to someone that hasn't been there... I have been and I DO know what you're feeling! Luckily I had something in the back of my head saying "there is something else going on here...." so I kept fighting for answers from his doctors... and finding out there was a reason behind the behavior was hugely helpful.

One question for you... does your husband still handle any of your finances. That can become a major issue... I know Glen maxed out all of our credit cards.. I still am not exactly sure on WHAT. I now have my finances back on track but that was kind of scary! Just something to keep your eye on.
 
Thanks, Katie, he did have control until a few weeks ago. You are right, I found out a couple of months ago that he had done much the same except that the cards aren't maxed, just heavily used and underpaid. It will take me a long time to get them back under control. I also had the feeling that something wasn't right with him, but until I read about FTD on this forum, I had no idea what might be going on. I talked to the neurologist last week when he had his appt. She agrees and says that it is obvious that he has already checked out. Even knowing this, helps only a little when trying to deal with him. We were having a discussion a couple of nights ago about how I wanted to be able to dress up and go out. His suggestion was that I do that and have men buy me drinks. This from a man who was always so jealous that he got upset if someone looked at me. I was furious that he would even think that I was the type of person who would do that. I threw something too. Not at him, but at the wall behind him. Just made another mess for me to have to clean up. He on the other hand, didn't see anything wrong with what he had said.
The FTD has ruined our relationship. I am no longer the loving wife, but just a caregiver whom he is afraid will leave him. I wish things were different. I do everything that needs to be done, but just not with the love that I would have used. It is so sad for me and for him. I am no longer the person that I have always thought I was. I don't think I will ever be again. Sorry for the ranting rave, but it is nice to know someone else understands. My best friend tends to think the things he does are funny.
Thanks for listening!
Janis
 
Dear Jmwife, a few yeras ago, I had to hjave an MRI of thje bresat (new provedure, very costly), and in wakls a prisomer gerting his MRI free. I hjace thouhgt about maybe writimg sone bad chjecks, going to the loval jail amd get my medical caer paid for. And hey, for me it would be a cavation: roof over my head, bed, 3 meals a day, amd no housework! If yuo dom't hear from me for a while yuo kmow where IO went (JK). They hjave computer access too!
Kimberly
 
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