Trouble in Paradise

[Tracy500]

My spouse has always been this was kind of bi-polar I think. And now as his speech goes he says no to and then yes when i repeat. I feel he thinks I'm nuts as we cannot understand him. Sometimes he just says forget it. Now I've been sick the past week, and the last 2 days really bad. So I've been doing minimal with him. Today we did straight tune feeds, even thou I know he wanted food food.mbut he isn't supp to have anything by mouth at all. I said I, sorry, but you need the formula, and I. So sick I don't want you to get sick. I've been to the MD 2to was in last week. No strep, even had a chest X-ray today which was normal. I feel like I have pneumonia. (I have a bad immune system) and get pneumonia every other year almost always, but usually in winter. Good luck to you. How long has ur pals been diagnosed with ALS? We just came on 2 years.

 

[Narrowminded]

After reading all of the responses and back and forth, I do believe that Brian is exibiting some cognitive impairment. Whether it's due to the progression of the ALS or was something that started prior as in FTD, that's a bit harder to determine, esp since he's been on this path for so long. Trying to think back is difficult since he was such a driven man. Over the past year or so, I've also done a lot of reading on narcissism. He has definitely shown those tendencies over the years. I would not say full blown. However, he did not show those early in our marriage. Now were those tendencies created or exacerbated by his "power" position or was it the start of FTD? I don't think that is something that I will ever know. I never saw it as something like that. Would I have told you he changed back then? yes I would, however I would have attributed it to the job change.

I spoke with my other nurse today and told her what happened yesterday and asked her to let me know how he was today. She did agree with the cognitive issues like asking him something, going through a bunch of things and then coming back to the first thing. This is something she has noticed and she has only been with us since Nov. That is a real change over the past 6 months or so. We both also agree that some times you ask him a yes or no question and you have to ask it more than once to get an answer. Again that is a change.

Anyway, she asked him today if he was trying to drive the other nurse away and he said he would not be sad if she left. Then she asked him again and he would not answer her but got his devilish grin that I like to call "cheshire cat" grin.

So all that tells me is yes he is having cognitive changes, but his attitude yesterday was just him being a jerk. I will keep an eye on it the rest of the week and over the weekend, but he will be reprimanded prior to the Tues nurse coming. I would not put up with that kind of behavior from a 3 year old and I won't put up with it from a 53 year old. He will give respect as long as it is in his mental capacity to do so and as of now and the answer he gave today's nurse tells me he still has the capacity to be respectful.

Off to start our bedtime routine. Thanks again everyone, just being able to put these thoughts on paper and get some feedback is huge.

sue

 

[Narrowminded]

Hi Tracy,

I was typing my above while you posted. DH was dx offically in July of 07. He started showing symptoms the winter of 04-05. He was trashed and vented and also got his PEG in Aug of 2010. So we have been at this almost 12 years, 9 if you go from offical dx.

I'm happy to hear you gave your PALS straight tube feeds today. If you can continue, he may start feeling a bit better as he may just be hungry and the tube feeds might get him the nutrition he may be missing from the struggle of eating. They definitely helped Brian when he finally quit eating. He also gained back about 20 lbs that he desperately needed.

Sue

 

[Barbie]

Hi Sue,

My husband would do exactly what your husband is doing. I think and so do our kids that his personality started changing a couple of years before his diagnosis in 2007. He was mostly different with me--and as the years went by it got worse and worse. he was still sweet and loving, but would just go off some days and everyone else would be wrong/stupid/idiots/lazy/etc and he was never the problem. the last 6 months of his life were particularly difficult. I always thought he had mild FTD and it seemed to get worse toward the end.

I don't really know your situation as I have not been following the forum so all I can say is hang in there...<3

 

[Narrowminded]

Time for an update. Little by little over the past couple of days I've been trying to deal with this situation and see what kind of response I would get from him. I told him Thursday night that I expected him to tell me what happened on Friday. Well, day went past and he did not. I reminded him this morning.

Now as back ground when DH asks for something, when he was speaking and now on the computer, it's always been, move this, change that. Very succinct. only 2 words if he can get away with it. No explainations, no please, thank you, could you, would you etc. With that background,

This morning he types, I said" "I am leaning to the right, can you please lean me to the left" then I got twenty questions and got irritated"" I told him, I highly doubt you wrote all of that out as you never ask for something that way. I told him I understand his frustration, but there is frustration on our end too when you don't explain yourself. I told him we have been together 36 years, married for 31 of them and you never asked for anything that way. Remember who you are talking to. He says it's been going on for months. That is something that I believe to a point, because of the way he asks for things. Then I said, you know this is not the first nurse that has left the room in tears. There is a common demoninator here. So then he fell back on his usual "so it's all Brian's fault". This time I said, "maybe it is"

I told him its very hard to figure out what he needs when we ask him "is that better" and all you do is stare into space. Then we have to ask a second or third time. Of course he denied doing that. I told him that our friend that visits every Saturday, an older gent like 87 I think, has witnessed it and told others about it when mentioning what I have to deal with.

So he starts typing out his first comment to his gentleman who should be here to visit shortly. "I was told you witnessed.. " I said do you think Bill will deny that? Go a head and ask him, I have no problem with that. I'm not sure if he will or not.

All that said, I don't think its FTD, unless I don't understand the behavioral aspect of it, because he could totally recall the situation and tell me what happened. And try to make it sound totally innocent on his part. Determination - being a jerk to be a jerk.

The only caveat would be if that is truly what FTD would be like if just the behavioral aspect and that is what started happening like 15 years ago when I thought it was because of his position at work.

Thanks all for listening. Just another one of the joys of this rotten disease.

Sue

 

[affected]

Sue, I'm not saying I do or do not think this is FTD at play - I leave that to you as you are there.

FTD rarely involves memory issues. If it is pure behavioural variant there is no memory loss.

My Chris could remember every detail of every thing that happened. With his paranoia, this meant that he heaped more and more into the paranoia because he could recall all details. I realised this very early and realised this meant I had to be very careful with getting into arguments with him because he would warp any logic I offered and would heap that onto his paranoia about me.

He would also never back down, never apologise (very different to the man he as previously). Trying to have a discussion like you just described would have been pointless and detrimental with my Chris. Firstly he was unable to see anything from anyone else's perspective as he had lost his empathy. Secondly his paranoia would have him on the defensive immediately. Thirdly if the conversation got too detailed he would have trouble with cognition (rather than memory) and become enraged.

Then he would never forget that I 'did that to him' (the conversation).

What I have found is that cases of diagnosed FTD that are very severe may have memory impairment very similar to AD, but they are also very childlike and their cognitive decline is also severe.

In his last months he would seem to have memory issues but it wasn't. He reached a point where his cognition was so poor in following anything complex that he did not grasp details. He would demand to know every detail of all that was going on in advance for example. But he couldn't grasp the details and so would accuse later that he had not been told. At first I thought it was memory, but I realised that if he couldn't take the detail in, of course he couldn't remember it later.

 

[Narrowminded]

Tillie you are a wealth of knowledge. I went to your page and read everything you have there on FTD. I also sent it to my son and a friend to read. My son got back to me and he says it does sound like his dad, but noted that it went back to when he was in HS. My son graduated HS in 05, which would work with the timeline of when I also noted some changes as HS would have been 02-05. I'm waiting to hear back from my friend. She also was a caregiver for Brian.

I also plan on showing my nurses this week and get their opinions. At the very least it helps in adding perspective to this situation.

Thank you for all the time and research you and done and how you took the time to write it all out for others. Thank you.

sue

 

[DreamsEnd]

Very interesting thread here. It made me think back. As I've said before, we had been full-time RVers for about 10 months before my Jesse got his DX. It was exhausting selling, donating household goods and getting our 5th wheel set up so the little things that would confuse me about my pals as we were transitioning to that lifestyle later made sense to me.

Except in the last couple of months his personality was always sweet and full of humor but for about two years prior, maybe three, I noticed intermittent lapses in judgement. He was ALWAYS very safety conscious but I would see an occasional lapse. As I said it was intermittent, but later his best friend told me he had noticed that as well.
FTD? I don't know, but this is a neurological disease so it makes sense to me that we might see this type of issue more frequently that reported. I remember a visit to the VA doc and the nurse asked him if he was having any memory issues. He said no, I said yes. He did trust my judgement until near the end as I said so at that time it wasn't an issue.

The cycling back to the first question was VERY familiar to me, again in the last 6 months. I'm not sure that even he knew what was making him uncomfortable sometimes. He just was. For the last couple of months if he wasn't sleeping, it would be every 5-10 minutes that he wanted/needed something changed. Lift my legs, move my arms, raise my head, lower my head, etc. exhausting and frustrating. It's beyond me to imagine what it was like for my poor sweetheart.

Sue, sounds like you have put lots and lots of thought into your husbands behavior. I'm so sorry it's been so tough and so long for you.

Hugs to all,
Sherry

 

[DreamsEnd]

PS Tracy, I hope you're feeling better. I had what it sounds like you have about 6 months after Jesse passed. I was sick (and scared of being so sick) for weeks.

Good for you for doing just the minimum as you can. How difficult it must be to be sick AND a carer.

Sherry

 

[affected]

Narrow, not suggesting you would, but I just felt a need to say that if you start talking with the other staff etc be really careful that your hubby doesn't feel like you are all ganging up on him. If there is FTD and paranoia and lack of empathy are in play, believe me it's very easy for them to feel that way, without it being true!

 

[Narrowminded]

Thank you Sherry. I hope this thread is helpful to others as time goes by. If it answered one of your questions or even gave you something to think about, that is good.

Tille - I have not spoken of any of this to my husband. I have had my son and nurse read this info to see if they also saw what I felt that I did. My daughter read it and she said it sounded like a friends grandmother, who is currently going under testing for ALS and had previously been DX with what they thought was Alzheimers but have re-thought, than her dad.

As mentioned I wanted their thoughts, as sometimes being the closest person doesn't always give the correct prespective. And I wanted them to have a chance to change their perspective if he acts up with them. He knows nothing of my thoughts. We won't be ganging up on him, maybe we will be more understanding.

The nurse today that read it has cared for other ALS patients and already was recognizing some cognitive issues. This is the one that he has been so mean to, even though she hasn't changed what she does for him. Today he wasnt mean, he just would not talk to her and refused to let her suction him but once. I walk in the door and he asks for the cough assist and to be suctioned. She hates when he does that to me. However, this isn't new. A nurse would walk out and he'd ask for the urinal after she has just asked before she left.

Sue

 

[affected]

Absolutely I know you won't be ganging up on him

I just know how powerful the paranoia was with Chris, and I had to be so careful or anything innocent was seen as something else.

For example - attempts to talk about safety walking (he had such serious injuries in falls) would fall on paranoid ears and be turned around to accusations that I wanted to sit him in a corner and make his legs rot off.

So that was all my concern for you, that paranoia is very hard to not be hurt by!

Chris also did those same things. He would have a carer here for several hours and I would be working in my office. The carer would ask about every need he may have in her last 15 minutes, attempting to leave with him settled. We all knew that this should mean when the carer left I should still be able to work for some time uninterrupted as all his morning care was done.

He would say he was fine, needed nothing and even smile at them.

Literally as that front door closed he would be grunting for my attention - need the toilet, need his nose wiped, want to move to inside or outside, want a coffee. Usually at least 15 - 30 minutes of things he needed done immediately.

There was no point to me trying to discuss the behaviour - rage and paranoia. These accusations usually revolved around how he just 'knew' I didn't even want to do any of his care. sigh

If I didn't have a mortgage I would have so readily stopped working completely to devote to his care. We can only do what we can, as all CALS know!

 

[Narrowminded]

Tillie - one small tiny advantage is he doesn't seem paranoid that I can see. While he didn't readily take to a cane years ago, after a nasty tumble that I thought would have broken his neck (no injuries), he quickly moved to the walker on his own and then to the wheelchair. The first fight for him was the hardest. Occasionally he would accuse me of something, but generally that hasn't been the case. I praise God for that much. It's small, but significant. I will admit though that I don't ask him about going off the vent because those kinds of questions usually illicit behavior that would be consistant with him thinking that I want to get rid of him. He would get quiet. Haven't asked that exact question but others that have to do with getting more nursing get that response.

sue