Rob's Dementia Journey with FTD

  We got our MRI appt for my LO! This Wednesday evening, so that was quick! We needed that done so he could see the Cognitive Neurologist, who is only in the memory clinic office one week a month. So, if we missed this one in September , we would have to wait another month. We had a good day yesterday, I printed out the paperwork for Advanced Directives, and we went thru that, and it brought up MAiD, and he decided that was something he wanted if it was available in the future. Then he decided to start clearing out the garage. It is a work in progress, but in the past, it's been hard because he wouldn't let go of anything, and I felt overwhelmed every time I went in there by all the stuff. But now he doesn't remember that some of it belongs to him, he was sure it was all my son's - so it was a lot easier to get rid of stuff. Some is going to the dump, and some we are putting up on a local free site.

  I understand it's up to me to be on top of everything now, but it is so frustrating! Rob got some paperwork from the Ministry about his driver's license, I read it over and you only needed to submit the forms if the doctor has cleared him to return to driving. He was convinced that it meant he could get his license back right now. But what he didn't tell me is that he also got a form from his insurance about his short-term disability that the doctor had to fill out. So, he finally tells me a week later about the form, I fill it out and rush it over to the doctor's office on Thursday, only to find they are closed till Monday - and the form has to be returned to the insurance company on Monday. Then, as we are going to bed last night, I checked the house phone for messages, which I guess reminded him to check his messages on his cell phone. He had a saved message (which means he already listened to it) from 8:24 AM that morning from the booking dept for his MRI - but it

  Argh! We have been waiting to hear about getting an MRI appt, only to call today and be told they never even received the requisition form from the dr! I have contacted the doctor to re-submit, and I finally have an extension letter to fax to Rob's work insurance for short-term disability. Rob was hoping to go back to work by the end of August, then the end of Sept, now (if it even happens) it probably won't be till the end of October. He wants me to drive him somewhere nearly every day, which I don't mind. But I am finding he is getting road rage while in the car, and I have to work to keep him distracted or change his focus. Yesterday he was screaming out the passenger window, swearing like crazy because we were stuck in traffic due to construction. I was so-o embarrassed! My brain is so-o tired from all of this and also keeping up with my own job (I work from home). I am not sleeping, sometimes it is 6:30 AM before I fall asleep.

  I think Rob is starting to accept his diagnosis. We both got a jury summons in the mail today, and he pointed out that it said if he had a mental condition that could prevent him from being a juror. Is that true? I don't even know

Rob went for his SPECT scan today. They injected him with radio-active dye, so they could see where it goes in his brain. It was a week of ... when is my appt? What time? Do I have to go? I guess I have to get this done to get my license back? When is my appt? What time? What do I have to do to prepare? (nothing). I guess I need to drink lots of water before I go? (no) When is my appt? What time? Over and over... We got the bloodwork done, though he didn't see why he had to do it, "can I do it later?" and "I guess I have to get this done to get my license back? " So, I am relieved these two things are over. Next is the MRI, but we don't have an appt yet. Then hopefully get in to see the Cognitive Neurologist the 3rd week of Sept. He is so hopeful that they will give him back his license and he can go back to work.

  2nd memory clinic visit yesterday - Rob was really hoping they were going to allow him to drive after this appointment. I found him studying up on the Ministry of Transport website shortly before we left, he was thinking they were going to be asking him questions about that. Unfortunately, they are contacting the Ministry with a discretionary hold on his driver's license. The doctor has extended him not being able to drive until at least the end of September. Which means he still cannot go back to work. They hope he can get in to see the cognitive neurologist by then. He has to go for an MRI and a SPECT scan (checks blood flow to different areas of the brain) - and a ton of bloodwork. They said their biggest concern is his age. That he was so young to be having this issue (only 62 years old). He passed the memory test again, but a couple of things stood out - his executive function and something else, I wish I had them write it down (it was spatial acuity) - but it was for decisi

  It's been two weeks since the doctor required Rob to stop driving for a month until they could do further testing. Which also meant he could not work. He is still early stages, and so far, has taken it really well. But then yesterday he was furious with me! I have driven him anywhere he wanted to go. He lost the nose piece on his glasses on Sunday, so I took him to glasses store to get it fixed, but it was already closed. I said I would take him on Monday, but lately I have been getting only 2-3 hours sleep, and by Monday afternoon, I had a blinding headache, I could barely see. He asked if I would take him to the glasses store, I told him about my headache, but that if I felt better after taking some Tylenol - I would take him. I ended up falling asleep, something I never do during the day, and slept past the store closing. I apologized when I woke up and said I would take him the next day. Well, he got up the next day furious at me. When I asked him what was wrong, he said, &q

  The other day we went to Rob's doctor to discuss his decision regarding his prostate cancer diagnosis. Rob has chosen not to go ahead with treatment. I told him I would support whatever choice he made. However, the doctor seems to be pressuring him into the surgery, finally agreeing to do more bloodwork in October to see how it's progressing, but that he would not let him wait too long for the surgery. This doctor is not yet aware of Rob's cognitive decline diagnosis, and I didn't feel it was my place to tell, at least until we complete the further testing. Rob is resistant to telling anyone. Also, we had the Alzheimer's Society lady here yesterday to meet and speak with Rob. It went fairly well, but every time she said the word "Dementia", I cringed. I don't think Rob has accepted that diagnosis - he sees a difference between that and cognitive decline. When she started to talk to him about his appointment at the memory clinic next week, he had no m

Today we are working on a sensory garden for the dogs. Rob has always loved gardening, so I thought this would be an easy project for him. I hope I can explain this clearly - I am trying to explain where I want him to put the plant in his hand, so he drops that plant, and grabs another plant and puts it somewhere else. So, I try again, trying to slow down, and go step by step, pointing to the first plant - he grabs a different plant and before I can point to where I want it, he is putting it somewhere else. Now he is getting upset and frustrated that I am not clear and trying to confuse him. It's not that it has to be perfect, but he wants me to give him directions in how I want things, then doesn't listen to anything I say. And no, he won't let me do it. We did manage to finish, and I think it turned out great in the end, but it is wearing me out, and its only day 6 of the month they made him take off work for further assessment