ALS, FTD, & Delusions/paranoia

[Elkhorn3]

I don't know if this is the right place to post, or useful to anyone else, but I just found this article from 2009 that really explains the sudden paranoia and fear my husband has started to have. It explains that FTD can be a precursor to onset of ALS symptoms--and when that happens, the path of the disease is identifiably different than other ALS progressions. Since this article clearly mirrors what's happening for us right now, I found it really helpful.

Didn't think ALS could get much crueler, but it just did.

Neurobehavioral Features in Frontotemporal Dementia With Amyotrophic Lateral Sclerosis

Objective To compare the clinical features at presentation in patients with frontotemporal dementia (FTD) who develop amyotrophic lateral sclerosis (ALS) with those of patients with behavioral variant FTD (bvFTD) who do not develop ALS.Design Archival data analysis on 61 deceased...

jamanetwork.com

 

[affected]

I'm so sorry - my husband also had bvFTD and it was beyond cruel. You can't really explain the impact of it to anyone else as it is insidious and incredibly personal how it erodes the personality of the person you loved and knew so intimately.

The paranoia was particularly distressing for me, because I knew that my Chris lived in his own deluded hell for the last year of his life. What he went through with the delusions and paranoia must have been beyond horrific from his side. Let alone how it was to be the one it was directed at.

You can also go to my profile and find a link to a small website I created where I have some quite detailed information on real world descriptions of how FTD works and caring for someone with this. Sorry I'm not allowed to directly link to it in a post but it shouldn't be hard to navigate to if you wanted to read further.

 

[Nuts]

I'm so very sorry. Of all the cruelties, the attack on the brain is, in my opinion, the worst. As painful as the news is, it's good that you realize what's going on and why. Please keep telling yourself that it's not him, it's the disease. I found that accepting what was happening and focusing on how to deal with the situation kept me going. People call it strength--I call it no choice. Please do visit Tillie's website as well as continuing to read here; she and the people here saved me. I do not know how I would have gotten through our five year journey without the knowledge and compassion I found here. I'm struggling about whether or not to share this with you right now, but here goes. My husband's mind went at the end, and after weeks of raging dementia he had a short moment of lucidity--just long enough to tell me to take him off the ventilator and not leave him like that. I will be forever grateful for that final (under 30 seconds) conversation. Hugs to you, and thank you for sharing what you found with others.

 

[Elkhorn3]

Thanks for all this info - all helpful! Could I ask you both: How did you deal with caring for him when you didn't really need full-time nursing care, but couldn't really leave him alone? I have a full-time job 30 minutes away from home. My husband gets agitated and has problems when I'm not home, but there isn't enough family available to cover the whole time I need to be gone. He doesn't need anything but good company. He can keep himself busy. I just don't want him to be alone too many hours of the day in case he falls, leaves a burner on, gets paranoid, etc. I'm piecing it together now, but wondering how others handle it.

 

[affected]

I had to scale back the work I did away from home and as he progressed, in the end there had to always be someone here. We had some serious injuries from falls because he totally refused to attempt to be safe. I was here when these happened and had to deal with the first aid and ambulance rides.