I started writing a journal when I figured out something was wrong – but stopped when life got busy. Right now I am so frustrated I feel like I am living Groundhog Day. So, I decided to start writing again. Here is quick recap of our journey to now…..
Like most of us, looking back, there was writing on the walls…we just didn’t know what to look for, or why it was happening.
This has probably been going on since 2011. He had a great job that he loved, but kept pushing the CEO to retire and name him CEO, so one day he got a phone call saying that it was time to leave….next, he did a consulting gig for 18 months that really went no where, not sure if it was him or the company. A start up was his next stop and almost immediately he started saying things like “CEO exaggerated, software and hardware don’t work, etc…”, “I am not putting my reputation in the industry on the line”, “they are talking about selling company and not including me”….
So when the company closed in December 2013 he just sat down in his recliner, wearing flannel pajama pants, in front of the tv, and stopped shaving. I let him have 2014 to sulk, mope, etc. but he was hardly touching his computer, never wanting to go anywhere, and showers became a problem. (My husband was an internet security specialist who lived for computer, gadgets, etc..always having the newest, biggest, best)
In March 2015 my daughter, in her 2nd year of a PhD program in clinical psychology, called me and was extremely upset. “I am sitting in class and the topic is – Depression vs Dementia, I know what is wrong with dad.” With the help of his endocrinologist, who he respected, he agreed to an MRI. Which showed, according to the report, some irregularities. But, considering my husband was a type II diabetic with poor control, 250+ lbs, and did not exercise, they said within normal.
His biggest complaint was exhaustion. So we had a complete cardiac workup including a angiogram at UCSF (his father passed at 59 from a major cardiac event) and he was 57, and a sleep study. Went to a neurologist (he never looked at the MRI, just read the report) totally prepared- I had written down his current daily schedule – tv and eating, what was different from before – he no longer used a computer and, I took my son to the appointment so it was not a “he said/ she said”, who treated him for depression, which of course he didn’t have. This was over the summer of 2015.
I was so frustrated I wanted to scream. I knew a psychiatrist and asked her for a referral to someone in my area who could possibly help. I called and left a message. She called back a few hours later. After a quick summary, including that he had stopped using a computer, she asked what he did before – computers, she asked me to google Bruce Miller at UCSF. Your husband has FTD. Wow, that was easy….
But as we all know, now the hard part, getting into the UCSF program. In September I contacted the cardiologist at UCSF and he put in the internal referral paperwork. They contacted me in mid-October 2015 and gave me an appointment for February 2016. I reminded the scheduler that we were just across the bay and that she should contact me if there is a cancellation. Friday, November 13th I received the call at 10 am and we were at UCSF by noon. She looked at the MRI, listened to me and said, “FTD.”
2016 was a crazy year…I sold a vacation home, an airplane, extra cars, planned a wedding, he had his license revoked, remodeled a condo and moved, then sold my house. All by myself. I didn’t tell him we were moving until a week before, didn’t want the confrontation.
So now, a year later, he is still sitting in his recliner wearing shorts and a polo shirt, watching tv and not much else. He sleeps from 11 pm – 11:30 am and then naps in his chair on and off all afternoon, sometimes going back to bed from 4 pm – 7 pm. He rarely leaves the house or even his room (I put the same furniture, tv and art from old family room to ease the transition).
It has been two weeks since he took a shower, he stinks, his room stinks, the bedroom stinks….(I always get in the shower with him, scrub him with a loofah and wash his hair so I know he gets clean)
I ask him to shower (I am 5’3″ 135 lbs and he is 6′ 300+ lbs) and he says “no” if I keep asking he has in the past become confrontational (before this all started he could be a bully- never physical) so here were are……
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The Elephant with FTD 