Old 10-15-2017, 04:14 PM #211 (permalink)
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Default Re: Overwhelmed

Sooner I'm so sorry. All of this disease just s*cks! I've questioned FTD with Brian at times, but so far it hasn't increased or evolved so I'm thinking not at this point. You are in my thoughts, a very tough road to travel.

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Old 10-18-2017, 09:40 PM #212 (permalink)
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Default Re: Overwhelmed

The home inspection was done today. It didn't turn up anything horrible so I am still hoping the sale is going to go through.

I started my picture project this afternoon. It's going to take a long time... I am scanning all of our old pictures into the computer.

The weather was great today. I kinda wish I would have just spent the afternoon sitting on the porch.

So far I haven't had any more problems with my internet since they replaced my modem so fingers crossed that the modem was the problem.

I would have to say, today was a pretty good day!
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Old 10-18-2017, 09:42 PM #213 (permalink)
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Sooner sounds like a win in my book

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Old 10-19-2017, 10:15 AM #214 (permalink)
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Default Re: Overwhelmed

Sooner, congrats on the inspection. I hope the sale goes through quickly.

FTDóit is the thing that has always frightened me the most. So far no signs, but I worry every time he does or says something weird. I think you are rightóthe diesease has him doing things he would not have done. Try to keep that in mind and not be hurt.

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Old 10-19-2017, 02:11 PM #215 (permalink)
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Default Re: Overwhelmed

Here's to those good days!

Next time spend half the afternoon scanning photos and half sitting outside sorting the next days scanning?

Nuts please do remember FTD normally comes on before or around the same time as ALS. It is different to cognitive changes. I don't see cases of PALS suddenly developing FTD in the last months of life (not that I'm saying Matt is in his last months!). What I mean is that a PALS that is years into the disease is not very likely to develop FTD. It could happen, they could also develop cancer or heart disease or anything.

Around 50% PALS are expected to have cognitive issues and these normally develop as ALS progresses.
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Old 10-19-2017, 10:44 PM #216 (permalink)
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Well yesterday was a good day, today not so much...

I scanned pics most of the day and then Cliff's friend messaged me and told me Cliff sent a disturbing message to her and her sister. It was about torturing women. She is concerned that he could possibly send something like this to someone who doesn't know what is going on and he could tarnish his reputation. I have been concerned about this as well. Especially since he has messaged several women asking for pics.

I don't know what to do? I don't want to take his only means of communicating with the outside world away from him. I am afraid he would become very depressed if he can't talk with friends and family. But I hate the thought of him tarnishing his name. He is such a wonderful man and FTD is making our lives almost unbearable at the moment.

I saw a message today that he and a friend are deleting some messages so I won't see them... She even made mention that she thought she had gotten caught again by me??? WTH is she thinking? I can't believe she would be involved in inappropriate conversations with Cliff. She clearly knows what she is doing is wrong. She also said another time, "I hope I don't get in trouble for this." I even messaged her last week and told her Cliff has FTD and sent her a link to what it was.

Honestly, I am not sure I have the energy for the mental stress FTD causes.

Cliff says he doesn't know why he is doing the things he is doing but that he will stop. How can you stop something when you don't know why you are doing it?
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Old 10-19-2017, 11:04 PM #217 (permalink)
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Default Re: Overwhelmed

Soonerwife, how hard this must be. I am so very sorry. Have you talked to his doctors? Is he on anything for anxiety? I remember when I thought Steve was displaying signs. He started anxiety needs over a year ago and his mood and temperament changed. The friends why that's just uncalled for. What they should be slung is supporting you both and not feeding off his texts by responding or by telling him that they feel he should talk to you. I am so very sorry. Sending a hug your way.
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Old 10-20-2017, 07:33 AM #218 (permalink)
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Default Re: Overwhelmed

Sooner, what a difficult situation to face. Wow.

If he has FTD, I donít think you can reason with him. You wonít change whatís happening either. DId I read at one time that FTD causes increased and inappropriate sexual behavior? Itís not him. He canít help himself. So how to protect his reputation?

Can you set up his comoputer so that his emails donít really exit his computer until to allow it? Iím sure there is a way. Then you could screen them. Unfortunately, that wonít stop him from finding webmail sources and sending from there.

Is it possible to confront the friend that is so afraid of being caught? Use her. Can you bring yourself to allow him to channel this new element of ALS through her so that he does not send inapprpropriate things to other people? Clearly she can handle whatís going on. I can only try to imagine how difficult this would be, but could she become your trusted agent and try to corral him so that he doesnít approach other people? I know itís a long shot, but if someone else can handle some part of this many headed monster, and if you could find peace with that, it might be worth considering. The very thought of this might be too repugnant, but if you look at this as a symptom of the disease instead of betrayal by the man you love, it might be less unbearable.

Tillie, I should have said that I used to worry about FTD. I no longer doóbut it remains a nightmare. The cognitive changes are bad enough, but FTD must be the worst.

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Old 10-20-2017, 08:18 AM #219 (permalink)
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Default Re: Overwhelmed

Sooner - first HUGE hugs. I was thinking along Becky's lines, if you could shut off wifi until you pre-read email messages, that could help. If hes texting, then I'm afraid you'll have to take his phone away.

The friend idea is good other than it may encourage the behavior, if that's even possible with FTD and still may not limit who he sends to.

Another thought would be going into his email account and sending a mass email to all of his contacts stating that Cliff is currently having some cognitive issues and that any emails from him that do not sound like him, are caused by his disease, please disregard such emails and do not repsond to them. That could head it off at the pass and avoid judgement from those who don't know the entire issue.

I am praying for you, this has to be so very, very hard. While I saw things I didn't like, at this point I'm not aware of any outgoing messages that are inappropriate.

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Old 10-20-2017, 09:33 AM #220 (permalink)
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Default Re: Overwhelmed

I am heartbroken even though I KNOW that this is FTD an not him... When you have been with someone for 22 years, you know them... He has always been incredibly strong, moral, trustworthy, kind, sensitive, and caring. At the beginning of ALS, I started writing down all the wonderful things about him.I have NEVER met anyone like him before in my life. He is so loved and respected by everyone.

This morning, I was thinking that I feel like I am raising a teenage boy again. Ugh! He can't explain anything about what is going on. That's why I have so little hope that it will stop. He keeps telling people he is confused when they question the messages they are receiving from him.

The majority of the messages that are going out are fb messenger. He is using an ipad that can only work on wifi so there is no way to not have the wifi turned on. If I remove the wifi from it, it won't work at all.

I haven't spoken with his female friend yet. I started to send her a message last night but it wasn't going to be pretty so I refrained. I sent her a link so she would know about the FTD because I know they talk everyday and wanted her to know what was going on. It is like she is encouraging the behavior. She told him to ask someone for pics. She said she is no better than all the others you have asked... why don't you? He responded that he was scared. I asked him who he was talking about and it was a trusted friend. The writer friend that is writing his eulogy and obituary!!! Why would she encourage this? I don't understand???

Almost every time I walk into where he is, he closes what he was looking at. Ugh, I hate this damn disease. He would have never HIDDEN things from me before. This is the man that I ALWAYS knew when he would walk through the door after work...

I told him I was going to be monitoring his ipad and if there was anymore inappropriate messages, he wouldn't be able to use it anymore. Can he even comprehend that? I honestly don't know how to handle any of this. To be honest, I don't even want to... ALS is BAD enough.

I feel a DEEP HATE for FTD and ALS. I am quickly learning why CALS have PTSD.
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Old 10-20-2017, 09:59 AM #221 (permalink)
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Default Re: Overwhelmed

So very sorry that this is happening to such a wonderful couple. I don't even know how I would react to your situation. Does he like playing games on his pad? I know it sounds like a stupid question. Steve was having a hard time figuring out what to do with his time so my son showed him an easy golf game. He's now obssessed with it. Steve doesn't show signs of FTD but does show changes in personality. I am just thinking if he could find a game to play that he really likes it may take his mind away for at least awhile.
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Old 10-20-2017, 03:49 PM #222 (permalink)
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Default Re: Overwhelmed

fb messenger and FTD just do not mix.

My Chris was careful as he knew I monitored occasionally and he deleted most of what he messaged with women.

I will say that when he went on Endep it really took the edge off the FTD, but then I suppose his hands went and using a switch was just so hard to learn with FTD that he stopped bothering with fb and just watched things on tv or listened to music.

Would Steve agree to any medications do you think?

My heart is so heavy for you. This is truly the cruellest thing a wife can go through - to watch the things that made the person wonderful erode away, while leaving behind a rotting shell.

It could be worth taking his iPad while he is asleep and sending a message to everyone he is talking to there, as awful as it sounds, but of course he will see the messages unless you can ensure they are read and then delete them.

I hated how I could end up looking a bit loony if I tried to circumvent stuff like this
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Old 10-20-2017, 04:12 PM #223 (permalink)
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Default Re: Overwhelmed

This is pretty drastic but if you blocked these people on FB could he figure out how to unblock them? If you care about how the blocked people feel you would have to explain. Would he then turn to email or texting?
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Old 10-20-2017, 05:06 PM #224 (permalink)
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Default Re: Overwhelmed

Sooner - more hugs coming your way. Since FB Messenger is now a seperate app, if you deleted it, would he know how to get it back? That way he could still look at FB, but not message.

As to the so called "friend" if she is encouraging this, she needs a very good talking to.

I'm so very, very sorry you are going through this right now.

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Old 10-20-2017, 09:23 PM #225 (permalink)
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Default Re: Overwhelmed

Oh trust me, I had a talk with 'the friend" today... I was nice about it, explained my concerns... she doesn't think anyone will think bad of Cliff because everyone knows him. I told her that I do believe he could tarnish his reputation because he is asking young girls to send him belly pics. I asked her to please stop encouraging him to ask women for pics. He said "oh, I just did that with that one girl because I knew he wouldn't do it..." She promised that she wouldn't do any of it anymore. I looked at their messages from today. He told her right off the bat, no more inappropriate conversations. At some point though, she said "I can't" but there wasn't any reason for her to say that so I am wondering if he asked her for something but then deleted the request?

We shall see how tomorrow goes.

I have been working on my picture project all day. It is nice to have something to take my mind off FTD...

It's also nice to see really old pics.

Tillie, what is Endep?

Deb, he has never been much of a game player. He likes to listen to music alot. He did quite a bit of that today.

I talked to my DD about maybe getting out for a while on Monday. She is up for sitting with her dad so I am thinking of planning something. I may even opt for lunch with my friend from work and then a massage.

I hate to say this but FTD has made me not worry as much about him being uncomfortable for a bit. I think this is not really fair of me since he can't help FTD, but?!

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