Rob's Dementia Journey with FTD

 Yesterday was Rob's assessment for the Adult Day Program for Early-Onset Dementia. Both he and I have been looking forward to this - me to get a break from his constant talking to me, and him to have someone new to talk to. There is a TTC bus driver in the group, in his 50s, so Rob is looking forward to chatting with him, as a fellow bus driver who lost his license and his job as a result. Rob did so well, chatting with the two women who were assessing him. Even they remarked at how with it, and articulate he was. Made me feel like they will think I am lying, and that there is nothing wrong with him. I did have to quietly shake my head a few times, when he told them something that was not true. I mentioned that when he rode the bus, he made it sound like he did it all the time, but it was only twice, and the 2nd time, I had to come get him because he could not remember how to get home from there. But he got into the program, they thought he would be a great fit. He starts next Thu...

  I emailed my support worker at the Alzheimer Society about my week with Rob and his behavior, and she sent me this. I found it helpful, and thought I would share it...

Watching Quantum Leap tv show  Him: how old is she?  Me: (looking it up on IMDB) the actress was born in 1982 so 40 yrs old  Him: 1892?  Me: no, oh you mean what year did he time travel to? 1989  Him: then why did you say 1892?  Me: I didn't, you asked how old she was and I said she was born in 1982  Him: no I didn't, I asked the year they were in.  Me: .....

  We had fun yesterday! We have a passive income of renting out our backyard to dog owners for a safe place for their dogs to play off-leash. Rob wanted to work out front on the yard, and we have a 5 ft solid wooden fence blocking the backyard from the front, so I figured it was OK while a guest was here. I reminded him before he went out, that he had to come in the front door, not thru the back gate, while the quests were here. I took our dogs out for a walk, while they were here, and stopped to remind my husband to come in the front door. I reminded him again when we came back from our walk. So of course, he came in thru the back gate, opened up the back door, and the guest's dog came racing into the house, running everywhere!! My dogs are chasing her (thankfully all of them were just little dogs, not reactive) and I am sure the dog was a bit panicked! I tried talking softly to the dog, directing her back to the back door, closing gates (thank goodness for my dog gates) behind us...

Rob's last day of work  was July 25th - just 3 months ago. Now I find he is getting antsy and wants to go out without me. I have offered to drive him, but lately he wants to go on his own. Now I found out why... he has snuck off to the casino twice. He told me he wanted to ride the bus and chat with his work buddies. But I have the Life360 app on his phone and can see where he went. In the 20+ years I have known him, he probably has gone to the casino half a dozen times. Now he has gone twice in one week. I have checked his bank account and he took out $70 so far. But it worries me. If he really needs to go, I am willing to drive him there, and sit next to him (I do not gamble and never will), but I do not trust him to go alone. I cannot prevent him from leaving the house at this point. He is probably stage 3-4? He has Frontotempomoral dementia, so poor executive function, and decision making.

  We were doing so well about his not being allowed to drive. He agreed to sell his car, and cleaned it out on his own. He talked about getting a bus pass, and walking more places. I talked about how accepting he had become in group, and others were jealous. I felt like I had done a good job helping him work thru this. It probably started because we found the car will not pass a safety test, will never pass due to extreme rust in the undercarriage, even though the rest is in great condition. Now I don't know what to do with it? I know I can call the wrecker's and have them tow it away, but we were counting on that extra money. We went to the grocery store yesterday, and I didn't park perfect. He got furious with me, apparently I am a terrible driver. He would barely speak to me the rest of the day and didn't want to finish the grocery shopping. He was done! Thank goodness his solution was to stay outside for the rest of the day, working on his garden to avoid me.

We spent yesterday cleaning out the packed shed, him getting angry and storming away - " because he has to do everything and now, he has to put it ALL back" ...  as I am sorting, washing things to give away or sell, taking pics, putting up posts to free sites and Kijiji, answering replies, setting aside things for the dump, etc. Plus, I am dog sitting two dogs, besides our own. We got McDonalds for dinner (he complained about how they will mess up our order - he is always anticipating trouble lately), I didn't even bother worrying about our Canadian Thanksgiving this year. But I am thankful that we now have a nice clean shed, that job is done, the dogs all slept last night (even if I didn't)

 

  I went to an Alzheimer's Society workshop yesterday (First Steps for Care Partners) in a nearby city. First, I got lost, Google Maps had me going all over the place, so I ended up going too far west, then too far east, then too far north! When I was finally saying to myself, "I give up, I'm going home", I came across the street I was looking for. But I ended up 20 minutes late! As I suspected, everyone else there was dealing with an elderly family member, most for a parent, a few for elderly husbands. I felt out of place. All this on top of not sleeping the night before... Anyhow, by the time I arrived at the workshop, I found myself weepy and had a hard time listening...

  How do you do this when you don't know?? I am trying to help him make good financial decisions, but I feel lost. I figured we had to let his work know he wasn't coming back. He is two years from retirement age, and number one in seniority. So, we went in and asked about next steps. I asked if he should retire and they said no, to stay on his long-term benefits. Later his union rep called me, furious!! Did he retire? No, I said, we just asked about it. "Well, the company says he has retired and now he loses all of his severance pay, and his Long-Term benefits!!?" I have never been in a union; I don't know anything about this! All I knew was when I lost a job, I would get nothing. His union rep said he would get this fixed, I told him we never signed anything, just talked about what if's. But I feel terrible, that it's all my fault, but I didn't know, and Rob never said anything about it to me.

  It's the logic that gets me! I have been wanting him to clean out the car so we can sell it. So today he has finally agreed to do it. He asked me to move the car to the front of the house, so he can plug in the vacuum to clean it. Which is not a big deal, but we don't use the front door much, we turned the insulated front porch into a computer room. So, we have to move a computer chair, unplug some computer items so he can plug in the vacuum, move the dog bed, open two doors, remove the baby gate (for the dogs), etc. When there is perfectly good outdoor plug right next to where the car was parked. But this is easier he says...