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!