FTD Stories

GG06

As I’m sure you can appreciate, there is so much more to this story then I am going to share. I don’t have enough time to type it all, and you don’t have the time to read it! I’m going to do my best to give you a comprehensive, abbreviated overview of our story. I hope you will share yours too.

My husband started complaining of difficulties speaking and getting his words out, in 2017. He was 59. His doctor referred him to an ENT who told my husband he had a spastic esophagus and recommended Botox treatments which my husband declined. I, and others, noticed his frequent speech hesitation and fragmented sentences. It was difficult to follow conversations with him.

I started noticing behavior and personality changes at the end of 2019. My husband has always leaned towards the negative side of things, but he became angrier, increasingly paranoid, and much more self-absorbed. I attributed this shift to the pandemic and his mandatory age 60 retirement from a firm he absolutely loved. My husband is the epitome of a workaholic. A CPA is his identity and self-worth.

Because of his “need” to work, my husband took a job as a staff accountant. In his 18-month tenure, he was written up by HR twice for the way he spoke to his boss and a client. He was put on an action plan. This is a man who was a partner at a big four CPA firm for 20 years.

During this time my husband became even more anxious and depressed. His hygiene deteriorated. My former extroverted and gregarious husband who always tried to make everyone he was with feel important, had morphed into a narcissistic and smelly man who people tried to avoid.

In August 2021 I suggested we go to our favorite restaurant. Pre-pandemic, going out to dinner had always been one of our favorite things to do. DH agreed to go but was far from enthusiastic. On the drive, I tried to make conversation, but he was not interested. This was such a departure from the man I married. When we got to the restaurant, I expected DH to order the meal he always did, but to my surprise he didn’t. When I questioned him about it, he told me he didn’t remember. I thought he was just being a jerk. During the entire meal he did not look or speak to me. I was so angry and hurt. When we got home, I told him I was not happy and did not want to continue our marriage the way it was.

The next morning when I woke up DH was gone. I called him a couple of times and got his voicemail. He finally called and said I wouldn’t have to worry about him anymore because he was driving someplace to kill himself. Thankfully that didn’t happen. Once he got home, he agreed to go to a therapist who diagnosed him with anxiety and depression and prescribed Zoloft.

DH’s anxiety and depression improved with the medication, but something was still off. Family and friends commented. DH has a strong family history of dementia. Alzheimer’s is what his siblings call it, but when pressed, they never really knew the exact type. My husband’s symptoms and behaviors didn’t line up with those typically seen in Alzheimer's.

On February 16, 2023, when I heard the news of Bruce Willis’ FTD diagnosis, and learned what exactly it is, I knew that’s what Paul had. After months of waiting for appointments and diagnostics, a neuropsych evaluation, dementia specialist, and MRI confirmed probable FTD.

DH scored a 16/30 on his Montreal Cognitive test in August. His next visit is December 6th.  I’m anxious to see how he does on his next screening.  

I hope you’ll share your stories. We have so much to learn from one another. 

Jeanne C.

Here's our story:

We were in the middle of a move.

By the "end" of the pandemic, two things were going on. First, it had become very clear that our apartment was too small. Second, my husband was starting to act like a jerk - becoming angry, belligerent, and obnoxious. I have to admit I chalked both up to being home and together so much.

Over the summer of 2022, we were actively house hunting. He would get fixated on the oddest things about the houses we were seeing and would become argumentative at times with our realtor. It was strange to watch because he had always been pleasant and outgoing - Ralph never met a stranger. Suddenly I was acting as a buffer, trying to keep things on an even keel. I also saw that he didn't seem to be able to follow GPS instructions as we explored all these unfamiliar neighborhoods. But when I tried to help he would become irate, once even slamming on the brakes in the middle of the road (thankfully an empty one) to yell at me.

We found a house. Now things were becoming more complicated. Packing was a nightmare. He didn't want to part with anything. He would even argue with me about getting rid of my personal items. And he would pack maybe one or two items over the course of hours and become hyperfixated on stupid things (like carefully bubble wrapping a nasty old conch shell, then unpacking and repacking it for an entire afternoon). And he couldn't keep the move timeline straight. All the dates were on the fridge calendar but he made me write out a list, too. He repeatedly reviewed the list with me, not being able to keep it in his head. Then my former CPA and adjunct professor husband couldn't grasp the details of the mortgage. I wish I could have canceled the move at this point, but obviously we were under contract and that ship had sailed. Finally, we got to settlement where he became angry about nothing and stormed out. I had to calm him down and get things wrapped up. I was mortified, embarrassed, and more than a little scared.

Then the worst day of our lives happened. I don't say that lightly. Seven years prior, Ralph had a myocardial infarction and coded in the ambulance. This day was worse.

We were wrapping things up at our old apartment. I was called into a conference call for work, so I stayed at my sister's house while Ralph went to let the cleaner in. A half hour later I got an Amex notification on my phone for a large purchase at Home Depot so I called Ralph to see where he was. When he answered I heard yelling in the background. Then he told me that he was outside. I stepped out onto the porch. No Ralph but I did see two police cars fly by with sirens on. Then I heard the sirens through the phone. My brother in law and I followed the police to find Ralph in a standoff on a front lawn a few blocks away.

He had gone into a stranger's house thinking it was my sister's and terrified the woman living there by demanding to see me and freaking out when he couldn't find me. Now he had four officers (one with a gun out) trying to arrest him. I explained who I was to an officer and they let me try to talk him down but that just made him angrier. Realizing that Ralph was having a crisis and not attempting a break in, they called an ambulance. He still wouldn't calm down so they had to restrain him. Ralph fought them - all of them. They finally had to wrestle him to the ground in a chokehold.

The hospital ran some tests and kept him for a couple of nights before they discharged him with a recommendation to follow up with a neurologist. It would be more than three months of hell and another hospitalization before we got a diagnosis and he started on meds.

So that's the FTD story of Ralph and Jeanne. Obviously so many other things have happened along the way, but that awful day was when I realized our lives were going to be different.

easy23

My DH started having memory problems in 2018. At my request he told his psychiatrist that I noticed a problem and the Dr. blew him off (or so he told me). In November 2018 my DH took his bike for a ride in the rain, while I was not at home. He skidded in the street and hit his head. He was taken to the ER with a traumatic brain injury. When he came home he didn't know who I was so I sent him back to the ER where he was diagnosed with dementia. The CT and MRI showed frontal lobe damage - encephalolamacia. This was in addition to the TBI from the bike accident.

Upon further investigation by me, I found that DH had started drinking again after being sober for 20 years. His decline was rapid. I wound up placing him in memory care in 2020 for 5 weeks. I took him out after strict Covid restrictions were put in place; besides he showed much improvement from being sober.

DH has been sober since then but his dementia has progressed. He has had delusions and hallucinations since the bike accident. He has called the police on me twice, saying I'm an intruder. I had him taken to the ER for a workup but they said they can't do anything for dementia. Bring him back if I want to place him in long term care.

I live everyday with a man who thinks I'm his mother, his aunt, a former girlfriend, a former co-worker. He is disoriented to time and place. He has no idea where he is or where he lives. He eats ice cream and other sweets all day. I have tried not buying them, but then that creates agitation. His geriatric psychiatrist has him on risperidone, remeron and memantine (which I think he is going to stop). The psychiatrist said he is living in his own world. I do the best I can to enter his world to keep him calm so he can stay home as long as possible.

Jeanne C.

@easy23 thank you for sharing your story. It must have been so hard going through that.

CStrope

I guess there's one good thing in my hubby having absolutely no idea how to use a phone! He can't call the police on me. Ice cream and any type of sweets are a big issue in our house too. I have rubber bands on the knobs of the kitchen cupboards that I need to keep him out of.

GothicGremlin

Here's Peggy's story -- apologies for those who have heard this before.

I had noticed a few stray things prior to 2018, but thought nothing of them. They were things like misplacing her driver's license. In that case we had gone wine tasting, and she put her driver's license in with her CDs in the car. I guess they looked like things that should be filed together?

The bigger things came around the 2017 holidays. Peggy and my cousin used to make the spaghetti sauce together (my family is Italian and we have home made spaghetti sauce for Christmas). In 2017 my cousin called to tell me that the sauce tasted off and they ended up redoing it. I guess Peggy didn't use the correct spices - which was weird. Then Peggy asked me if I'd make the meatballs. That also got my attention. Her meatballs are way better than mine so I was somewhat taken aback. I asked her why she wanted me to make them and she gave me some vague, unsatisfying answer.

Then the big one. In Feb. 2018 she came to San Francisco to visit me and my husband. This was right before we moved. We'd lived there for 20+ years, and she'd been to our apartment a million times. This time though, she parked way over by the ballpark- no where near us. I was baffled, and again Peggy gave me a vague answer as to why she parked there. Then when it came time for her to go, she couldn't remember where she'd parked her car. It took us 5 hours to find it. She became convinced it was going to get towed and she said "oh well, I guess it's gone and I'll have to get another car." I'm thinking "what???" You can't find your car so you decide to buy another one?? It's not like she has vast amounts of money, so again I was taken aback. I asked her a lot of questions about how it was parked and she said it was parked "linearly." Turns out her car was parallel parked, but she had forgotten the word "parallel" and substituted "linear."

A few days later I convinced her to see a neurologist. I think she was kind of relieved.

She was diagnosed with FTD (PPA) and early onset Alzheimer's in Aug. 2018.

Once we were all in lockdown and I couldn't do any of my normal work/play activities, I started checking in with her friends to find out if anyone had seen any kind of symptoms. I had learned about mild cognitive impairment and didn't really see it with her, so I wondered what others had seen, if anything. They had. Her ex-boss told me that Peggy had shown signs as far back as late 2010, early 2011. She consulted her work journal to read off the incidents to me. Peggy's friend who used to cut her hair told me about the time it took her 1/2 hour to get out of a parking space by her house. Many, many more incidents like those. Her ex-boss and her friends told me that they thought the incidents were weird, but none of them ever thought she was showing signs of Alzheimer's because she was so young. In 2010 she would have been 51, which is pretty young. I wouldn't have seen any of those things because from 2010 to 2018 I didn't really see her that often because both of us had demanding jobs in different cities (although she took early retirement in 2016, thank goodness). I'd see her during holidays or if we went wine tasting.

And here we are now, five years later, and she's been in memory care for since Oct. 2021. 😕

GG06

Oh my gosh, wow. Thank you all for sharing your experiences with this hideous disease. Your stories would seem unbelievable to anyone who doesn't live in the FTD world. I am so thankful and lucky enough to get to hear @Jeanne C. 's stories online and in person.

@easy23 I echo Jeanne's comment. The stress of your situation had to be crushing. My husband is a bike rider too. Up until about six months ago he would ride in the dark. He told me it was safer then because there are fewer cars on the road. About 10 years ago one night I got a call from the park ranger. He said a couple had found my husband unconscious in the parking lot next to his bike and had taken him to shock trauma. From what my husband remembers, he hit a curb and fell off the bike hitting his head. His helmet cracked from the impact. Thankfully imaging didn't show any head trauma, but I wonder now if there was any.

@CStrope and @GothicGremlin Thank you so much for all you've shared on the forum. I have followed your posts/discussions since I joined. They have been incredibly helpful to me. I am so happy you've joined.

Jeanne C.

@CStrope The next time I have our handyman come I'm going to have him put slide locks up high on the pantry and walk in closet doors. First to limit the binge eating (pantry). Also to prevent him from thinking either is a bathroom (he gets lost in our house). I don't really fuss over what he eats - if the man wants a cupcake for breakfast, so be it. I want him to enjoy what he can. I just get concerned when he overdoes it and then feels off.

@GothicGremlin I see so many things in hindsight that should have been flags. In 2019, he wanted to put our fairly simple taxes on extension rather than doing them. I ended up taking over taxes then. Oh, did I mention he is a former CPA? At the time I was annoyed and thought it a little weird. Now I realize he was probably having a hard time with them.

GothicGremlin

@GG06 Thank you. I know how you feel - I've felt the same way about others. When I first got here I knew absolutely nothing about dementia. It doesn't run in our family, and I'd never encountered anyone with it. People here were (and are) so generous with their advice and words of support - I've learned so much, and I'm incredibly grateful.

Yikes @Jeanne C. That is so scary. I'm glad the police were sensible and were able to help Ralph.

And I certainly hear you about hindsight. There were so many signs, and yet.. Each of Peggy's friends experienced at least one incident with her, but because they didn't all know each other, none of us put all of the puzzle pieces together. If we had, would we have figured this out? And if so, how much earlier would we have seen it?

Something I think about often is if I outlive Peggy (which I'm aiming to do!), I'd like to put together some kind of education program about recognizing early symptoms of dementia. Maybe like a series of brown bag lunches at work. Few people think of early onset, but in Peggy's case, all of her friends, and Peggy herself, were all still working at the time.

@easy23 I'm so sorry. I know the walking on eggshells feeling of caring for someone who is that disoriented. Peggy still knows I'm her sister, but she doesn't know she's in memory care anymore, she has delusions and hallucinations, and her sweet tooth is endless. I just give her what she wants these days.

CStrope

Isn't it strange how the sweet tooth situation seems to be almost universal! I wonder what happens in the brain that causes that. I allow hubby to eat just about anything he wants, but 12 pop tarts for breakfast is a bit much!!!! Yes.......he has done that twice!

GothicGremlin

I saw pop tarts and immediately thought of pop tart blow torches.

Okay - here's your laugh for tonight -- I don't know where my s.o. found this (or how he found it, since it's from 1994), but it's a faux (and very short) "research" paper on Strawberry Pop-Tart Blow-Torches. It cites Dave Berry so now you know how seriously you should take it. 😄 The illustrations are great.

Enjoy!

GG06

@GothicGremlin the pop tart abstract was hilarious! Thanks so much for sharing it with us. And I think your idea of dementia recognition program is fantastic. It would help so many. When I read your post, I thought of Homeland Security being formed because of the lack of information sharing between agencies. Jeanne and I were talking about how we'd like to get involved in some way to help FTD caregivers.