Rob's Dementia Journey with FTD

  I think Rob was having a bad week when he was acting out. He is back to his old self now, no more outbursts. When we talked to the cognitive neurologist, she told us to watch out for ALS symptoms. So that is why I was reporting his muscle cramping, slurring words, and difficulty with saliva and swallowing. The saliva symptoms have progressed. He has been slurring his words more frequently lately and started slurping back his saliva often. We had fried chicken the other night for dinner, and I looked up to discover water was pouring off of Rob's chicken.  My son noticed that Rob's hands were wet.  I was so confused, wondering where this water was coming from?? Turns out it was saliva, there were two streams of it coming off the chicken at his mouth, his hands were soaked, and he didn't see anything wrong with that.  He was confused when I asked him about it, as if he didn't know what I was talking about.  I feel like this is suddenly happening so fast, and it scares me

Tip #4: Keep a “To Go” kit ready and easy to grab Your To Go kit should include two main groups of things. Photo courtesy of Pexels. One group will include paperwork, such as: Advance health-care directives such as a Living Will and copies of the medical order forms Common medical orders forms such as the DNR (Do-Not-Resuscitate) and POLST (Physician Orders for Life Sustaining Treatment) A medication list A copy of your medical power of attorney form It’s never a bad idea to have a copy of their ID card and insurance card as well The other main group of things to put inside of your To Go bag are items that will make the ER visit less boring for you and for your person — things that might make you both more comfortable. For you, items like a phone charger, book, snacks and water — maybe a small travel blanket or neck pillow. Also pack a pen or pencil and pad of paper to take notes and document important things. For your person, take something that makes them comfortable or reminds t

A funny, not funny moment. When we came back from the meeting on Wednesday, Rob asked me why his pants were so tight? I said, let me check the size - he was wearing my son's jeans! My son wears size 29, when Rob was working, he wore size 34. I knew he had lost weight, but it's scary to think that he could even put on these jeans, but even do them up, and they were not all that tight on him, just snugger than he was used to.