The story of Bob

CStrope

Our story is similar, yet different, like all aspects of dementia. DH was a high school biology/anatomy/env. science teacher for over 25 years. In the spring of 2015 he came home and suddenly announced he was retiring at the end of the school year (he was 60). Following retirement, he was a sub teacher 3 days a week. We started noticing a lot of napping/anger issues, some memory issues, and word finding issues. He has always been a bit absent minded, so we attributed the increase in his normal activities to the retirement and change in his routine. As the months (and years) went on, these changes continued to get worse. By 2018, we were arguing constantly and he had become a total jerk. Everything I said was met with a defensive nature and nothing was fun anymore. When I'd try to talk to him about his change in demeaner, etc., he always came back with retirement as his excuse. I begged him to go to marriage counseling and he told me he'd rather divorce me. In the summer of 2018 he had his first appointment with a new PC doc. She noticed some interesting things during his appointment and did a MOCA on him. He scored a 20. She recommended he get an MRI, but when he came home and told me about the appointment, he put a spin on it and I did not know about the MOCA or her reasoning for suggesting an MRI. So, no MRI was given, and he refused to go back to that doctor. (she was a quack....why would he go back to her!) But in 01/2019, he had to go back to get some prescriptions refilled, and she again gave him a MOCA and he scored a 20. Once again, he downplayed everything she talked with him about, and I was naive and didn't understand what a MOCA was or what it meant. A year plus later, in summer of 2020, he went to a local GP to get his prescriptions refilled since he was refusing to returning to "the quack". Local doctor referred him for a second opinion on his meds, which was really a follow up for a geriatric cognitive assessment. The reason for the follow up was not explained to either of us, so we thought it was just routine. After doing a battery of cognitive tests, once again an MRI was recommended. Not understanding why this was being suggested, DH once again refused it and I went along with his wishes. By this time arguing was a daily and common thing, so I just went along with whatever he said to try and keep the peace. About this time, I started noticing he seldom used nouns. Sentences were all "I did that thing for the stuff", or "let's go to the place and do that". When I would ask him what he would talk about, arguing ensured. Then I started noticing his short term memory becoming horrible. He couldn't order in a drive through because he couldn't remember what I was telling him to order! He brushed that off continually, saying he wasn't listening to me, it was always MY fault. Since we were now in COVID life, I was working from home and he was no longer working at school. We were around each other 24/7 and things became more noticeable. In October, there were some strange situations and he couldn't answer very simple questions I asked. I then insisted on an MRI, which led to more cognitive testing and a PET. He scored a 17, and the doc diagnosed him with Alzheimer's. 6 months later after our follow up appointment, the doc wrote in his after visit notes that he felt it was not ALZ, but rather FTD. This was never discussed with us, so I reached out to the doctor and asked him about it. He told me to take him off of the Memantine and Aricept and see if I noticed a difference! I was not comfortable doing that. After the follow up a year later, the after visit notes stated that the dr. was convinced this was FTD. Once again this was never discussed with us and he continued to prescribe the medications that would not help, and even increased the dosage. We switched doctors. So we are 3 years past actual diagnosis, but definitely much further into it than that. His MRI showed most of the atrophy on the left side of his brain. He rambles a lot, but most of what he says is either jumble or has no context surrounding it. I know work from home full time and am his full time caretaker. I feel sad, isolated, and cheated out of all of the things I thought I'd be doing at this time of my life. I am 8 years younger than him, so I have a lot of living yet to do! I wish I had a checklist for how this was going to go and how long things would last, but that's not how this works. He still goes to the bathroom himself, but he urinates in random places periodically when he gets up in the night. We had about 6 months where he was extremely combative physically, but thankfully that has now passed. He cannot follow even a simple command, as it seems he has no idea what the words mean that I am saying, and has no cognitive ability to process a request.

So that's the story of us.

Jeanne C.

Wow. I wonder how many of us would know that our LOs have FTD if it weren't for covid. It feels like all that quality time together really showcased the behaviors.

I'm sorry you're on this journey. I'm sorry we're all on this journey.

It sounds like our husbands are progressing similarly. My husband has little short-term memory and can't follow instructions. The language thing is hit or miss, but the rambling goes all day long. I think/hope we're past the agression stage. He still gets agitated and anxious late in the day, but once his 3pm dose of risperidone kicks in, it's manageable.

Thank you for sharing your story.

GG06

Thanks so much for giving us such a detailed progression of events. I can relate to so much of it. I am nine years younger than my husband. I have those feelings of isolation and wondering how long I will be living like this too.