ALS/MND Support Group Forums

ALS/MND Support Group Forums (
-   Current Caregivers (CALS) (
-   -   Trouble in Paradise (

Narrowminded 06-28-2016 07:57 PM

Trouble in Paradise
ok, semi-rant coming:

So today I came home to find yet another nurse in tears. This gal is one tough cookie too so I was really surprised. I'm starting to think maybe DH is starting with some FTD. Either that or he's just being pissy to be pissy.

For 6 years we have had one way of communicating how to position him in bed when he feels like he's leaning to the right. It has always been to "roll his hips, then roll his shoulders" Today he decides to change the terminology to turn him to the left. The nurse was trying to clarify exactly what he meant. He got really frustrated and told her to quit asking questions. DD came home, so she asked her if she could figure out what it was he needed.

DD tried to figure it out, even asked him at one point if he wanted his hips rolled and he was like no. So finally she said, well you'll have to wait for mom cause I'm not getting it.

I get home, I could tell the nurse was frustrated. I walked over to him and he still had his message on his computer. I rolled his hips and shoulders and bang he was good.

I asked the nurse to come out to the kitchen, because in the morning she told me he'd been kinda rough the past two Tues (she only works for us on Tues). To let me know if there was anything special she needed to report as to not tip DH off. Well, she walked into the kitchen in tears. And told me the above.

Nothing she did today was right. On top of the fact she has an abcessed tooth and is on antibiotics.

So tonight I asked him if he was feeling ok? He asked why, I said because the nurse said you were kind of cranky and that happens when you get sick. He told me she was nuts. I told him, our DD also said that and he said she was crazy too.

Which led to this conversation that basically had him skirting the issue and making excuses. Finally, after the second time of asking him to please clarify turning to the left he described as above. We have a white board for communication between myself and nurses and I told him I was writing that on his board so we would all have it straight.

Just like the other day, he told me to be aware he's had a lot of goo in his eyes in the morning. I found that strange, as I'm the first one to wipe his face/eyes in the morning and I always check and then ask him if he is good. Like I'm some new person doing this for him.

Just needed to vent to those who would get it. Thanks for listening.


Atsugi 06-28-2016 08:12 PM

Re: Trouble in Paradise
Vent anytime. You've got a real challenge on your hands. Hope DD is able to cope without feeling like it's her fault.

Narrowminded 06-28-2016 08:27 PM

Re: Trouble in Paradise
Mike - DD is fine. She's more like him than me, so she just lets it roll right off her back. It's the nurse I'm more concerned about.


affected 06-28-2016 08:32 PM

Re: Trouble in Paradise
That's tough!

It reminded me of how Chris became in the last couple of months (I don't mean a time frame for you, Chris was rapid progression and gone 11 months after diagnosis).

He began to really have trouble with language with his FTD. Mostly he had shown behavioural variant, but it moved into language.


This is important - he probably really does think you are all crazy because you can't understand him.

So my Chris would start saying no for yes, or nod yes while saying no.
He would even say no when I would ask if he wanted a particular thing, I would cycle through everything I could imagine he wanted then finally try the first thing I'd said again and he would say yes.

If I tried to tell him that he was mixing these things up he would become very angry and swear blind I was the one having trouble with simple things.

I can't say this is what is happening, but it really reminded me of how things got when his language went. He also began to have problems spelling which was really tough as we were using a communication chart with alphabet on it ...

DreamsEnd 06-28-2016 09:01 PM

Re: Trouble in Paradise
Oh my. My pals had a lot of eye goop in later stages. A hospice nurse taught me to use baby shampoo on a cotton ball to wash his eyes.

Vent away. You ar amazing!


Narrowminded 06-28-2016 09:32 PM

Re: Trouble in Paradise
Tillie, thank you for that information. Brian has never been a good speller and has chosen in the past before dx to make me feel like I was the confused one as he was never wrong. However, reading your description sounds a lot like what he's doing now, saying no then you get back to that first thing then it's yes. I will definitely keep an eye on this. I guess part of why I wrote my rant, not sure if it was old self showing through or more.

Sherry, you're info is good to know as well. This seemed to start more when we started the Robinul to help control mucous, but it could be just a coincidence. Thank you.


affected 06-29-2016 01:29 AM

Re: Trouble in Paradise
On baby shampoo in the eyes.

I went to get set up for reading glasses a few years ago.

I've had this little lump on an eyelid for about 15 years. Sometimes it would be a bit irritated but I really hadn't thought much about it. It had been there since I had one big allergic reaction to an eye antibiotic.

Well the optometrist said to me you have a xxx (whatever the medical term was for this little lump). He said - this sounds strange but if you start washing that eye with baby shampoo, it may take a couple of months, but it will get rid of it. He said baby shampoo is the same ph as the eye, which is why it doesn't hurt babies eyes.

So I got some, and it took a lot longer, but I would forget to do it every day, but I no longer have a little lump on my eyelid. So the stuff is magic!

affected 06-29-2016 01:33 AM

Re: Trouble in Paradise
Narrow, Chris's kids said to me, oh dad's never been that good at spelling.

But actually he had been spelling fine for quite a while, and he wasn't trying to spell difficult words, it was really just care needs and basic conversation.

I watched that spelling get bad on quite simple words.

I think that regardless, it helps you all to realise that it could be part of the disease and not to take it to heart. They truly don't realise the cognition is declining, and even if they do suspect it's so frustrating they try to blame everyone else.

Chris would say that people just couldn't be bothered trying to understand him speak. His speech was incredibly poor, but he was sure it sounded ok ...

I learned to take his insults with a grain of salt, not point out that he was messing up, and just try to communicate. Not easy, but far easier than letting him get me all worked up!

Narrowminded 06-29-2016 06:55 AM

Re: Trouble in Paradise
Tillie, let me give you a little more background because I'm beginning to think that maybe the FTD started a long time ago but never progressed. Or it is just his personality.

Back 19 years ago, we purchased the company DH worked for. It's a metal fabricating business. 16 total of us, so a small business. Prior to him owning it, he was running it and when he started running it his personality started changing. Things really started going down hill after we owned it. I always compared it to "power corrupts and absolute power corrupts absolutely". Only He knew the best way to do anything and he wasn't open to listening to anyone else. He micromanaged so badly we almost lost a very great gal. No one could do anything w/o talking to him first. Way back then he spelt phonicly, it was the joke in the office kind of. So his spelling truly has been awful and it was more simple words. He could spell anodizing, but get something like streach (stretch) wrong. Mostly wrong vowels etc.

He was so miserable and so focused on the business that it really took a toll on our relationship. We were to the point of merely living in the same house for the most part. It took us 2.5 years to get a dx because getting him to a Dr was like pulling teeth, he didn't have time for that. Fortunately he progressed slowly and just limped for that time.

Anyway, fast forward to him landing in bed unable to move. Getting the pillows and his body aligned just so - a dance many of us know, is always a struggle with him. Like the switch he uses for his Accent (Tobii). He won't let me use velcro to mount it to his hand so it doesn't move. Well we have this goose neck gizmo attached to the bed which means no fine adjustments. (He can still raise 1 thumb like thumbs up and what he uses to operate the switch). So we get his hand positioned to yes that's comfortable, then we have to get the switch to his thumb. His hand is on his belly, so eventually over time it tends to slide a bit with breathing and such. He wants that switch between his knuckle and thumb nail. Well, it's not perfect and w/o fine adjustability you've got to deal with close. Well, close isn't good enough.

Yesterday it was him changing terminology on how he wanted moved and we were the idiots. He told me last night that I was the one who started the whole rolling business. Total denial of that is what he named it. So, maybe it's FTD, maybe it's him being a jerk. However, that being said, yes we will do this, that and the next thing and come back round to the first thing and that's it. He too could not understand when his voice started being garbled. I'd tell him that I know to him he sounded fine and knew what he was saying but unfortunately we were not hearing it that way. He told me I needed to get my hearing tested. Then we were reading lips, now his lips don't form letters, so I had to show him with a mirror. I know it's incredibly frustrating to him and I'd be frustrated too. However, I can't afford to lose my nurses because he can't be a bit more patient.

Just some additional info.


Nikki J 06-29-2016 07:10 AM

Re: Trouble in Paradise
Was the 19 years ago behavior a change from before do you think? I understand it was a change in circumstances so may be hard to tell

My mom had dementia with frontal lobe involvement prior to ALS. It was noticeable diagnosed a number of years prior to the ALS but I know now there were some signs before then- things we did not recognize and things we did not know but have been told by her friends.

I would estimate 5 plus years of unrecognized behavior change, 5 of diagnosed dementia and 5 years of ALS/ dementia.

The changes were insidious and there were some hurt feelings and a lot of puzzled moments before we knew what was happening.

Narrowminded 06-29-2016 01:30 PM

Re: Trouble in Paradise
Nikki I'll have to spend a good deal of time thnking about this. We purchased the business in 97, he was dx in 2007, started with his first symptoms winter of 04-05. I say it that way because before he started limping he was getting horrible charley horses in his legs after being on the ice with our son's hockey team. He was limping for sure by March of 05. I'd say the really bad attitude started I think sometime 02 or 03 maybe. I'd always believed, which he thought I was crazy, that stress had a major role in him getting ALS. Mostly because he was strung so tightly in the time before it started. I think his attitude started to mellow a little after dx, but not the micro mangement part.

The tough part is that he chose to vent, so while as others have mentioned above, some of these things happened late in the disease state for their PALS. Given the vent, I don't think he has normal timeline based upon symptoms. Everyone's is different, but there seems to be some commonality between what comes when before the end.

Ok, his personality when he started running the business in the early 90's was definitely starting to change from prior to running the business and just being a normal employee. He ran it for an absentee owner, then when we bought it, things just started to intensify. When I think back to the early years of our marriage, he was a different man. He was always A-type personality, but then became a work-a-holic. I'd tell him, I don't need a fancy house or car or whatever, I just want your time, but he was driven. We never made a lot of money from the business, it's too small. We made a comfortable living, but never rich. I handled the money and budgeted everything and wasn't a big spender nor was he. He had cut grass as a teen and his mom would take his money, give him a little to play with and put the rest in the bank so we had a nice down payment for our first house. That was really our start.

Since starting on this forum and reading more about FTD, I've spent a lot of time thinking about all of this. Not quite sure though.


affected 06-29-2016 02:56 PM

Re: Trouble in Paradise
I could be wrong Sue but I think that it is most common for FTD to start before the ALS.

Cognitive decline in a smaller way that isn't truly what would be classed a dementia often happens later in ALS.

My Chris showed behavioural changes that I noticed about a year before his speech started slurring. Even though I always say he was rapid progression, he did have a few years of odd symptoms that were vague and fairly mild (compared to what came later).
It was like both his behavioural and physical symptoms were lower level and slowly progressing for those first years, then it was almost like a tipping point was reached and everything started to go very fast from that point on.

diagnosed2016 06-29-2016 03:50 PM

Re: Trouble in Paradise
I am starting to suspect FTD for my husband, so this is all very interesting to read- the past few years he has become more and more impatient and had several out of character blow ups. Is there any specific test? I too wonder if he has just become jerky and stressed out (esp lately with the stress of diagnosis)

affected 06-29-2016 06:05 PM

Re: Trouble in Paradise
They can test for FTD.

But it can be gruelling on the PALS.

If they have behavioural variant and displaying a lot of rage, paranoia and lack of empathy, the testing can be very hard as they may blame you.

Sometimes diagnosis is done by discussing behavioural patterns with the CALS and observation.

A big thing with FTD is it's [B]patterns of behaviour[/B].

A PALS who gets cranky and frustrated may not have FTD. It's about knowing what their personality was like, and seeing a complete change in personality.

Having said that however, there can still be degeneration in the frontal lobe that causes language or executive function impairments.

It's fairly complicated because there is no real treatment, and it is progressive.

Endep took the edge of my Chris's rages, but of course it was symptom management not a real treatment.

You have to weigh up how far you want to take formal testing I think.

I did not have Chris formally diagnosed with FTD. However our specialist now completely agrees he was classic FTD, but at the time I could not have sat in front of Chris and attempted to discuss his behavioural issues as he was already so paranoid towards me. He would often say - don't worry I'm not going to get dementia ...

FamilialALS? 06-29-2016 08:07 PM

Re: Trouble in Paradise
[quote=affected;386705]I could be wrong Sue but I think that it is most common for FTD to start before the ALS.

Cognitive decline in a smaller way that isn't truly what would be classed a dementia often happens later in ALS.

My Chris showed behavioural changes that I noticed about a year before his speech started slurring. Even though I always say he was rapid progression, he did have a few years of odd symptoms that were vague and fairly mild (compared to what came later).
It was like both his behavioural and physical symptoms were lower level and slowly progressing for those first years, then it was almost like a tipping point was reached and everything started to go very fast from that point on.[/quote]

Ditto all of that. The cognitive decline was prior to and more pronounced than ALS symptoms for my mom. In hindsight behavior changes preceded by about 5 years. She whittled down her social contacts to just us kids in about that time frame and shrunk her "world" down too. Driving hours to visit family stopped happening and her weekly routine became highly regimented with all errands, hair appts, manicure appts, shopping being within a 5 mile radius of her house.

Thankfully she did not have aggression, quite the opposite, she was more compliant and less defiant. She had bulbar onset and very much lacked awareness of how hard she was to understand and also had trouble with word finding.

Her ALS Neuro and I saw no benefit in formal testing to add another diagnosis. But the Neuro asking concrete questions to illustrate her deficit was enough for her to confirm it. Even though mom could "act" functional, she could not answer correctly which of her kids was oldest, who lived closest or farthest.

All times are GMT -5. The time now is 08:04 PM.

vBulletin by Jelsoft Enterprises Limited Copyright © 2000-2019
Copyright ALS Forums 2006-2017