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 happeni...

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.

I've given Rob an assignment. I hope that he can manage this before it's too late. Lately he has gone back to practicing his guitar, taking it with him when he goes to his day program. So, he was listening to the chords on a video of the song we danced to the first day we met. ( Keeper of the Stars ) and I realized what a wonderful memory it would be if I had a video of him playing that song. So, I told him if he would practice our song, when he feels confident, I will videotape him playing, as a keepsake. Then I had another thought. His family is very musical, his sister plays in public at many professional settings. So I was thinking, if I could play this video at his funeral, and his sister could play along, their last time together. Sorry, kind of morbid, but we all know it's coming. Of course, I will be a ball of tears, already listening to this song makes me tear up.

  I've been up all night in pain and throwing up, and he took my basin away when I finally fell asleep on the couch! I was cleaning the basin out each time so that's not his excuse. So, I woke up so nauseous, discovered it was gone and called out to him. He was just in the next room, but no response. My throat is sore and raspy, but I keep calling. Finally, after about the 10th time, he answers me, and I ask him to bring back my basin. No idea what I am talking about. Argh, I am so nauseous, my throat is so sore, but I try to explain what I need. I pat the couch next to me, explaining the basin I had right here, that you took away. Blank look... Oh, he says finally, you want a cloth. No, the basin! Before I throw up all over the couch! It's hard enough being sick and having to take care of yourself, and the dogs. He is supposed to only be in early stages

  We were at the dr for tests today. Just testing his heart to make sure he is ok to take the meds Rob was talking suicide on Sunday, so I contacted the memory clinic, they got him in right away and talked him into taking some meds. I was surprised they could get him in so quickly. I was also surprised that he admitted to the dr how low he was feeling. The dr was so firm with him. He told Rob this med may make the difference between being able to stay at home until his death, or spending most of the rest of his life in LTC facility. Normally Rob won't take any meds, but he has agreed. We have gotten so much support from the memory clinic and the Alz. Society, but I still feel so lost and overwhelmed

  Rob got up early this morning, about 6 am, when he usually sleeps till 11 am. I thought he was on the computer. But when I came down hours later with the dogs, he was simply sitting on the couch, in the dark, contemplating if anyone would miss him if he was gone. I told him about all the people who love him, who would miss him, and that it would break my heart. That I would be alone for the rest of my life. I reminded him of how much he helps me, that he can still do all the heavy lifting, and getting down on his knees to do the things I cannot. I know he is feeling so lost and useless without his job, no longer seeing his friends every day. His family was all here before Christmas, and we went out to dinner. His best friend was here before Christmas. But he feels abandoned and lonely, though he will not go out to visit anyone. He has done so well up to this point, but now I am worried. I decided not to beat around the bush, and told him that if he committed suicide, I would not...