Thanks Janis. For some reason I have set Dianna off.. I really don't know why. She seems to misread my posts or misunderstand them. I honestly think she is just stretched so thin that she needs someone to lash out at and I seem to have been chosen. Now she's leaving me private messages as well. Oh well. I have tried to explain to her that I have been a caregiver for both Alzheimer's and FTD, but she chose to miss that part. Need to do my best to just ignore her. But still... felt good to have someone stand up for me... I appreciate it very much!
Dana, I am sorry for your loss! I lost my mom to cancer eleven years ago tomorrow. It is tough! I am hanging in there. The hardest thing is the empty house and not being able to sleep. I keep thinking I am going to let sleep deprivation take over and sleep all day, but that hasn't happened yet. My son & his family have been great about checking in with me. They call twice a day just to make sure I'm okay. Hope that you have a good family support system too. If you need to talk, I'm here too.
The scariest thing is the disconnect between activities and the ALS. That's what ultimately killed Glen. If he was choking he would keep putting food in his mouth. He would take more in at a time than he could safely handle as his tongue muscles weakened. And though we thought we had thrown out or hidden or locked up anything that wasn't safe.. he somehow found an apple and choked on it. Three days later he developed aspiration pneumonia, and was gone within 48 hours.
Just keep reminding yourself it's the illness, and that there is NO way you can protect him from everything or prevent all the weird/dangerous things he does. And don't beat yourself up. You'll have down times and you'll be angry and frustrated... and it's all reasonable and OK!
I wish I could give you something more hopeful. Kevin (my son) and I learned that inhibition and empathy are very important evolutionary characteristics.. and when they are gone from an FTD patient, it's frustrating, sad and infuriating. It is so hard to explain the anger to someone who hasn't been there. But if you're talking to those of us who HAVE been there... no explanation is really even neccessary.
A couple of things really helped... make sure he's getting enough medication. It helps with the agitation and nastiness. Glen was on a combo of celexa and seroquel. It took a while to get the right balance.. for Glen it was less Celexa (anti-depressent) and more Seroquel (anti-psychotic).
Hi Janis. My post was too long... gotta split it in three....
So sorry it's taken me so long to answer your note.. I've given a lot of thought to my answer. Everything you described sounded so familiar. Trust me I understand wanting to slap that stupid grin off his face. I got angry enough to try it once... he just kept grinning and staring. So don't bother. There were times when it truly seemed like the more angry I got the more Glen grinned.. and even chuckled. I asked him flat out "Do you ENJOY getting me this angry?!?!?" The answer: Yes.. it's funny.