Rob's Dementia Journey with FTD

 Rob has mentioned that he is having trouble sleeping.  I haven't noticed this, he seems to be asleep whenever I wake up in the night, and I wake up often.  And he goes to bed about 11-11:30 PM, and he sleeps till about 10-10:30 AM. But he says he often lies awake at night, staring at the ceiling. So last night we started him on Melatonin, 5mg, to see if that helps.

He is angry with me. I am sick today, slept till noon after being awake all night, and feeling wretched. But he needed to go shopping, so I took him. He wanted to go to the Canadian Tire store for new wipers for my truck, as well as groceries.    So I pulled into Canadian Tire first, and he asked why. I said, "I thought you wanted to go here first?" OK whatever, he doesn't care, he says. But I walk in, and the store is packed with Christmas shoppers and the checkout lines are crazy! I feel like I am going to pass out, so I head for the exit, I can't deal with this! He says we don't have to go thru those lines, so I turn back, willing to try his way. But now he is furious and goes storming out! Ok, on to the grocery store. So, he is grumping all through the grocery store, keeping out of my line of vision, so I have to keep turning and look for him. It wore me out even more, and it was a relief to get out of the store. But as soon as we got home, he walked out, sayi

I should have known that something was wrong years ago, when I told him I had skin cancer, and he said nothing. I had to make him hold me. When I fell down the stairs and broke my leg in 3 places years ago, he didn't come to the hospital because "I was dead anyhow". But since he has had to stop working due to FTD and losing his license, I have seen moments of empathy. Putting his hand on my shoulder when I cried one day. Asking if I slept well. Just moments, but still...

We checked the online hospital wait times app, and it said there was only a 1 hour wait, so we decided to go in because his rash was spreading and getting redder. When we got there, there were not very many people there, only 3 before us for triage, and the waiting room looked fairly empty. But it was 4 hours from when we got thru triage till when we got called back to see a doctor! Rob kept wanting me to go home and come back when he was done. But last time I took him in, they would not let me come in with him due to Covid rules, and he didn't give them all the information. There was no way I was leaving him to deal with this alone. When the triage nurse, and the doctor asked about his prostate cancer, he told them he was NC - took me a minute to figure out what he meant. He is at stage 1C. The triage nurse immediately said the rash was shingles when she saw it, but when the doctor saw it, she immediately said it was infected. So, they did blood tests for infection and heart att

 When Rob was at his day program, another member talked about using a ladder and his wife's concern that he would fall, and that she should do it. His reply was "what would he do if something happened to her??" Rob told me that gave him pause, and a lot to think about. Who would take care of him, if not me??

Rob has been sick since Saturday with possibly Covid. He had a high fever of 39.7 C (103.5 F), he was talking word salad, unable to get out what he was trying to say. We were able to bring it down with Tylenol and fluids. But he has no memory of parts of that day. Chills, aches, fatigue. His hand tremor is much worse. When I asked him to take his temperature, he tried to do it with the case still on the thermometer and had no idea he was doing it wrong. Another time, he would barely put the tip in his mouth. He seems better, fever still spiking to 38.9 C (102 F), but fluids and Tylenol is helping. He has developed a nasty rash on his leg like the last time he had Covid - looks like his leg is covered in blood. Anyhow, he was showering yesterday, and I heard a thud. Ran up to find him on the shower floor. He was awake by then, so not out long. But when I looked at his feet, they were bright purple! I wrenched my bad shoulder (I have severe arthritis in my back and shoulders) getting him

We have been working on a number of projects together, where I have been planning, purchasing supplies, measuring, drawing lines for him to cut, and spots for him to drill. It has gone pretty well, though frustrating at times. Yesterday he decided on a project of his own. He bought this window well cover some time ago, and I told him it was too small. He insisted it was the right side, but left it for months. Yesterday, without telling me, he decided to fix the window well cover. He said he built a frame so it would rest on the window well. I am not sure if you can see from the picture? He cut it too short, so it doesn't rest on the sides. There is nothing supporting it next to the wall. He laid another piece of wood on top at the front to keep it from falling into the window well. He screwed in screws thru the plastic with no washers, so it popping off. He can't see what's wrong, but I told him he did a great job anyhow!

 One or two of these things might mean nothing, it is the daily, on-going things that added up to a problem that we needed to get checked out. ----------------------------------- December 25, 2021 - Rob was convinced that the white powder he found next to the cutting board was poison. It was just powdered coffee creamer. ------------------- January 8th/22 - Rob accused my son, Josh, of taking his jeans form the laundry. The jeans were in the pile of laundry Rob had just folded. ---------------------------------- Rob tried to tell me his birthday was not February 21st.  That it was probably sometime in January. But he didn't know when, only his mother knew, and she wasn't telling. He said his birth certificate only shows the day it was registered, and that could be up to 6 months after his birth. ------------------ June 19th - Using the wrong words in a sentence: Screen for blanket Cover for roof Quebec for China Return for requisition form. (I haven't had time to write them

 Today he couldn't remember what to do with the eggshells, after he cracked the eggs into a bowl. Later, he had decided to vacuum our tiny office, with two computer set-ups, and little room to move.  He was swearing his head off about how everything was in his way around my desk. I have a wrap-around desk, with a chair, and two dog beds underneath.  I tried to offer to help move stuff out of his way, but no, he had to vacuum now, the stuff could not be moved first, and he went back to swearing and vacuuming.

Rob went for his first day today, and I am worried that he won't want to go back.  He went willingly this morning but was confused as to why the "meeting" was going to last so long.  I reminded him it was a day program and that he would have lots to do all day, have lunch there, and other people to talk to. When he arrived, he again called it a meeting.  So, we shall see... After the program... He seemed happy when I picked him up. It's so strange to see him talking loudly and full of life lately. Normally he tends to talk softly, and blend into the background. He has seemed so shy the whole time I have known him, and now he seems like the life of the party! He was concerned at how sedentary the group was, and that some had speech issues. He also said he couldn't see going as early as 9AM when the program started, that it was too long of a day. Anyhow, we shall see if he will go back next week.

I suggested to Rob last night that I make a big banner and put it up above the TV with his appointment, so I could point to it and say, "There's your sign".  I don't think he got my humor!  I am learning that I cannot share too much info till closer to the date, but up till now, he has been pretty good about it.  This is the worst he has been about repetitive questions. However, they gave him the appointment when we went to the assessment on Friday, so even if I hadn't reminded him, it may not have made a difference this time. We have a few good days, and I start to doubt myself again. He was so articulate at the assessment; I was afraid they would say he didn't need it.  Even they commented on how well he did.  And then he does something like this. Oh, did I mention that last time he went to the casino by himself, he had to call for me to pick him up, because he could not remember how to get home?  Thank goodness I got the Life360 app on his phone before this

Friday evening, October 28th: Me: so, you start your Day Program next Thursday, November 3rd at 11 AM.  We will have to leave early that day because the dogs go to the groomers the same day, also at 11 AM. Rob: OK Later that evening: Rob: when do I go to the Day Program? Me: next Thursday at 11 AM Rob: and the dogs go to the groomers on Wednesday? Me: no, they go on Thursday too, that's why we have to go early. Rob: So, I go on November 4th? Me: no, you go on Thursday, November 3rd at 11 AM Rob: So, I go on Wednesday? Me: No, Thursday Saturday, October 29th: Rob: When do the dogs go to the groomers? Me: They go on Thursday, the same time as when you go to your Day Program Rob: So, they go on Wednesday? Me: No, Thursday Rob: so that's November 4th? Me: No, Thursday November 3rd. Rob: what time do I go to the program? Me: 11 AM, same time as the dogs go to the groomers. Rob: so that's Wednesday? Me: No, Thursday Sunday, October 30th: Rob: so, the dogs go to the groomers tomor

 Rob has been playing his guitar today, really loud and strong - usually he plays so quietly. Then he asked if I remembered this chord, and I am not good at that at all.  So, he started to sing... and it was "Keeper of the Stars".  The very first song we danced to on the night we met. Immediately my eyes teared up, and I tried so hard to smile and put on a happy face for him.

 So many small things, it's hard to remember to jot them all down. I have noticed he is struggling with words more lately. Sometimes he substitutes words as if they were right, other times he just cannot remember the word he wants to say. I feel him getting more frustrated every day. When he took the bus to the casino the last time, I had to go pick him up at the Mall/Bus Terminal because he could not remember how to get home from there. This is the first time that he hasn't known his way home. Today I overhead him calling the DMV to find out the status of his driver's license, as if the status was going to change from "suspended for medical reasons". He kept asking the poor guy for any new info, telling him who his doctor was, where the doctor worked, tests he had to have in the future to keep his class B license. Apparently, it was on his record that his license was suspended due to cognitive impairment, so the guy tried to mention that, but Rob just kept talkin