New Here (sort of)

Carolyn4255

Hi...my name is Carolyn, and I had posted on another group here (caregiver group), and a member kindly replied that it would be a good idea for me to join the FTD group as well. My 70-year-old DH had a 12-minute-long major seizure (first ever) back in mid-November, was diagnosed with AZ while recovering in the hospital. Four months later (about a week ago), his diagnosis was changed to FTD. Of course, as so many of we spouses have experienced, I knew something was wrong beginning about 4-5 years ago. Vague symptoms at first, but then some very serious apathy (which I chalked up as depression). He lost interest in his children, grandchildren (I am his second wife), hobbies, eating, etc. At that point there were no obvious cognition or memory issues. He just seemed to have lost his spark. This occurred shortly after he retired, so I assumed it was spurred by such a major change in his life.

Before the seizure, he was basically independent (still driving, still cooking, showered on his own, etc.). But now he no longer drives, no longer cooks, and no longer showers on his own. I am now a bonafied full-time caregiver. And I am hopelessly ill-equipped and unprepared to deal with this.

I have so many questions. But for now I just wanted to introduce myself. This forum is amazing. So many kind people, and so much valuable information.🙂

CStrope

@Carolyn4255 I'm interested to hear more about the seizure. What was it, what caused it, etc.

My husband's symptoms started shortly after retirement at 60, and just like you everyone (including him) thought all the changes in his life were causing the problems. He too was originally given an ALZ diagnosis, which was then changed to PPA-FTD Semantic variant.

I hope we're able to give you some advice and support through your journey.

Carolyn4255

I don't believe I was ever told what type of seizure he had (or if I was, I don't remember). I was told seizures can occur in any type of dementia...although they typically occur in the more advanced stages. My husband is on medication and hasn't had another seizure as of yet (it's been four months) but there's no way of knowing if he'll have more or not. The one he had was life-threatening due to the long duration and the fact that it had to be stopped in the E.R. with medication. Had I not been home when it happened, he probably would have died. The seizure risk just adds more anxiety for me as I worry every time I leave him alone that he'll have another.

I'm curious about his symptoms? The long list of FTD variants and the different symptoms that can occur seem to be all over the board. Is your husband still at home? Or in a care facility?

Jeanne C.

Hi again @Carolyn4255 - I have to admit I'm not a natural caregiver. It's funny. My entire family is in healthcare, but I have an MBA and have been working in global business-to-business marketing for many years. I didn't see myself doing this. Ever. I have been surprised by what I am able to do. That being said, don't beat yourself up if you feel ill-equipped. To quote Monty Python, "nobody expects the Spanish Inquisition." No shame. You will figure out what you can manage yourself and what you need help with. One of the best pieces of advice I received (right after "see a certified elder law attorney") is "ask for and accept help."

CStrope

https://alzconnected.org/discussion/comment/201054#Comment_201054

His symptoms at first were very easy for him to hide, missing words, inability to repeat something back, using a lot of "this" or "that" instead of the name of the item. Then he became very defensive about everything, So when he'd say something and we'd question him because it didn't make sense, he would turn it around, blame us, and an argument would ensue. We finally got him diagnosed when he needed help with something and couldn't call any of us because he didn't know our phone numbers. He was quite far along by this point, scoring a 17 on the MMSE.

I work full time, and my employer has been wonderful about letting me work from home, but it has gotten to the point where neither my work or my caretaking of Bob is getting the attention it needs or deserves. I am planning on placing him in a MC facility May 1st.

Currently he has no ability to carry out even the smallest of tasks, because he has no understanding of what anything means. I can't ask him to sit down, because he doesn't know what sit means, or I can't ask him to take his shoes off because he doesn't have any idea what I'm saying to him. He's physically good, but starting to lose weight. He has extreme anxiety and can easily go an entire day without ever sitting down, just constant motion.

Looking back, I know now that symptoms were very evident 6 years ago, he was officially diagnosed 3 1/2 years ago. I'm sure if I had perfect memory I could identify things from 7 or 8 years ago that were signs of the start of things.