Rob's Dementia Journey with FTD

  He wanted to go to his work's union meeting to see his friends, so I took him and dropped him off at the union hall at noon. This is the first time I have left him anywhere since his diagnosis in June. He said his friend, Tim, would bring him home, so I texted Tim to check that it was OK. Tim said he was there until 5:30 PM, so that might be too long for Rob. No problem, that's why I checked with him. I said I will just come pick him up in a while. I texted Rob at 1:47 to ask if he was ready to be picked up, and no response. 3:13, and still no response. I am sure he is just busy gabbing away with his friends and I will be leaving in a few minutes to go find him. At 4 PM still no response, so I thought I better go find him! Fortunately, he was still at the union hall, enjoying chatting with his work buddies. So, I guess it's time to put the Life360 app on our phones to keep track of Rob!

  He found his sunglasses! He has been obsessing about them ever since he lost them a couple weeks ago. Every day we had to go over all the places he had been - before and after he lost them. He couldn't hold the day he lost them in his mind - so any day or place was up for grabs. He even admitted to the doctor that he had lost his glasses, which was the first time he admitted to them he had a problem. Turns out when he went with a friend to the dump to get rid of some stuff, he took off his sunglasses, put them away in their case and tucked them down in a storage area under the seat of his friend's truck. If his friend hadn't cleaned out his truck today, he never would have found them!

 Rob:  Where's the relish?? Did you forget to buy some? Me: Yes, I bought a bottle, is it not in the fridge? Rob: No, I looked and it's not! Me: Not in the pantry? Rob: No, it's not there! Me: Well, I am sure I bought one. Soon the whole family is hunting everywhere for the relish. So strange, where could it have gone?? Well, I found the relish. It was on the counter, right next to his hotdogs - where HE put it, right before sending us all hunting for the relish!

  So, doctor #3 has now told my husband he will not pass a functional driving test. (He lost his license July 25th) We went to our family doctor yesterday, and Rob brought up about getting his license back at least 5 times. Finally, the doctor said, "you need to give up on the idea of getting your license back." It doesn't help that his family and friends keep encouraging him to take the test to see if he can pass. It's frustrating that his family and friends keep talking to him getting his license back That's not going to happen, makes me feel like I'm the only one that understands what's going on. The worst is he believes them and thinks this is going to get better. But once he was diagnosed with dementia, if he were to get into an accident, even if it wasn't his fault, he would be blamed, and we could lose everything. Or he could kill someone, because he confused the gas for the brake. Makes me feel so alone in this...

  So we went to the cognitive neurologist today for the results for the MRI and SPECT scan It is either Alzheimer's or frontal temporal dementia - three parts of his brain have atrophied, and do not have good blood flow. Test to confirm Alzheimer's is $1500 US (we are in Canada), so we won't be doing that, but the doctor is leaning heavily towards frontal temporal dementia anyhow. Rob wants to take the functional driving test to get his driver's license back ($850) so he can go back to work (he drives for a living), but both doctors said he would not pass. He is having trouble maintaining focus and understanding instructions. He has lost his spatial acuity, he decided to set up a ladder the other day to wash the windows outside, and no matter how many times we told him the ladder was crooked, he would adjust it wrong, and could not see what we were seeing.

  What do I do?? He is outside, up on a ladder cleaning windows! Josh, my son, tried to get him to at least set the ladder properly, but Rob has moved it several times and still doesn't see that it's crooked. Rob tried to climb up it while it was still crooked, and Josh told him it would be too awkward, with the bucket in one hand and the sponge in the other, so Rob said angrily, that he would just drop everything! He doesn't want any help, won't let us do it - he is driven to do this himself. So, I am sitting inside, watching him, with the phone ready if I have to call an ambulance if he falls....

  Trying to feel less stressed about Rob not telling me about the paperwork he received that had to be submitted by Aug 29th, the doctor being away till Sept 6th when I finally found out about the paperwork and got it filled out - to having his insurance cancelling his short-term disability due to lack of paperwork, and his job expecting him back on Aug 29th and wondering why he didn't show up. About his driver's license being suspended which means he cannot work, since he drives for a living. He forgot he had an appointment with his family doctor, never mentioned it to me, and so he missed it. It's all straightened out finally, short-term disability has been renewed - and even more paperwork I need to fill out and submit - so not feeling less stressed yet. Oh, and he finally told his family about his dementia diagnosis and prostate cancer diagnosis, and now his family wants me to drive him 3 hours away so they can see him. His dad is fighting colon cancer and mom is reco...

  I've been wondering if this is the dementia, or just that my husband is weird!? Turns out yes, it is a dementia symptom. It is a sign that his brain is scrambled. Whenever I would tell him something, he will repeat back something different. i.e., I told him I had a client coming at noon, he replies, "Oh, you mean 11:30?" i.e. I mention an accident I heard on the radio that happened at Simcoe & Bloor, he replies "Oh, you mean Ritson and King?" i.e., I ask him to put a grocery item away in the cupboard next to the stove, he replies "Oh, you mean in the pantry?" Oh yes, and he explains things back to me that I just told him... as if he just thought of it. There are days it wears me out just to talk to him...

  All the tests are done - SPECT scan, MRI, and a ton of bloodwork - now we finally have an appt with the cognitive neurologist on Sept 15th. Rob is expecting them to let him drive again, so he can go back to work. I am not so sure that will happen... Considering everything, he has been pretty good about it all (there have been a few bad moments), but I worry how he will react if they say, no more driving? I bounce back and forth from feeling like I have a handle on this to feeling totally overwhelmed. Oh, and when I mentioned at the memory clinic about feeling frustrated with him not remembering to tell me about important forms needing to be fill out, appts that need to be booked - they said, well it's his responsibility! Umm... isn't that why he is there, because of his memory issues???