Finally have diagnosis: bvFTD

Suzy23

Hi all,

I have posted a few times through my journey so far. It took me over a year to convince my mom to take my dad for evaluation with his PCP, and even before that, there were a couple of years where I knew something was going wrong, I just didn't know what. His personality was changing a LOT in many different ways.

Thank goodness during that same time I convinced them to give me DPOA, health care proxy, update their wills, and get my name on their savings, IRA, and checking accounts. 

More recently I had a big fight with her over taking away the car keys, which she has done.

And then it took another 3-4 months to get him evaluated by the second neurologist, who is a dementia expert. This dr. sent notes today from his evaluation of my dad's PET scan saying that it is bvFTD as I have long suspected. And he has "significant visual and spatial impairment" and should not be left alone, be allowed to drive, or handle finances.

I know I am still really just at Base Camp One on this massive mountain climb. 

The sad thing is he kept going to all the dr appointments because he thought he would be rewarded with getting the driver's license back. And of course he can never drive again now.

He was telling me sweet things yesterday about how much he loves me and thinks about me.

I have the book 36 Hour Day, and I have found good resources at UPenn website on bvFTD. It's a little unusual in his case because it was late onset for him. He's 77. I also have access to the portal where we can communicate with the nurses.

He's now on Seroquel for sleep and I guess to help with obsessions and belligerent behavior.

I know FTD has a genetic link in about 30-40% of cases and am wondering if I should get genetic counseling myself. 

I wanted to thank everyone on here who is sharing advice. I have found it so helpful. 

Suzy23

I have been researching both agencies that can provide aides to help my dad at home, and also places where they might move near me where they offer independent living, assisted living, and memory care.

At this point, my mom thinks she "might" need an aide to come stay with him "one day" if she needs to go to the dentist herself etc., but thinks he is still far from needing this. Whereas I think she absolutely should start doing it now. He wakes up in the wee hours and every morning she finds that he has messed something up -- disconnected water pipes, messed up the thermostats, unplugged the computer, etc. 

And in terms of them both moving nearer to me, I might as well be suggesting they relocate to planet Mars. She can't even comprehend the possibility. 

So I guess I should also look at memory care places near them.  (Irony is his actual memory is pretty good).

By the time I get that all sorted out, she's likely to need assistance herself. She has a fair amount of arthritis and is starting to use a cane. She also has had a lot of anxiety all her life.

I live a 14-hour drive away from them and I have one brother who lives even farther from them in the opposite direction. He isn't as close to them.

They have very few friends nearby. Almost none. They do have a young man who comes in to help them on the property, and one neighbor who has offered to help. I have their phone numbers.

Suzy23

More notes from the neurologist:

The PET scan reveals significant reductions in brain cell metabolism, more prominent in the left hemisphere. This indicates that there is a primary degenerative process underlying many of the symptoms. Although there are subcortical ischemic vascular changes evident on the MRI, those would not be sufficient to account for the full symptom pattern.

   

The FDG-PET patterns suggest that Alzheimer pathology is most likely, but the behavior changes and MRI are more suggestive of Behavioral Variant Frontotemporal Dementia.(bvFTD)

M1

Hi Suzy, you've made so much progress, I'm glad for that. This is a tough road, your mom probably doesn't realize what's coming, and that may be merciful. Yes, you should move ahead with alternative living arrangements. Good luck.

feudman

Well, Suzy, I suppose it's good to finally know what you're dealing with, but I'm worried about your mom. bvFTD caregiving is almost always especially challenging & stressful. You have been doing a great job of  guiding her so far, but with you so far away, & her having very little help, this may get ahead of both of you before you have time to make arrangements.

It sounds as if you are already researching his dx. You can search the forums here using "FTD" as keyword. Northwestern University also has a lot of info on their website. www.theaftd.org is a great source, and they have an affiliated caregiver support forum (theres another on Facebook). "What if it's Not Alzheimers," ed. by G & L Radin, is the reference book; reads like a medical text, but chock full of info. I belong to a dedicated FTD support group and can put you in touch with the facilitator, we meet once a month, virtually due to the pandemic. One member's daughter works for the AFTD.

You are correct that your dad could be labeled "late onset," and I dont know if there have been enough cases to know how that affects progression, but it often moves pretty fast in "normal onset." I heard many distinctly different versions of FTD in group, yet all followed a common theme: abrupt and dramatic personality & behavioral changes, obsessive compulsive behaviors, impulsivity, loss of social filters, inappropriate actions in public, etc. And of course, their memory retention can cause problems spared in other dementia. It can be a wild ride.

My DW & I are now in the closing days of our journey. I didn't have it as bad as many, was able to find good in home care, & eventually a wonderful family care home, but even so, I grew very stressed & weary. bvFTD sufferers can become hard to place the longer you wait. It's always good to get in line at multiple places, because you can always say "no" when they call.

Best wishes to all of you, and "hang in there." 

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jfkoc

Suzy, here is another good resource;

https://www.theaftd.org

Suzy23

Thanks so much for these replies. I will get the book you mentioned, Feudman. 

And theaftd.org is also the resource mentioned by the medical group, so I have already reached out to the support group leader nearest to my mom on her behalf and also gave her that contact. 

I will keep trying on the other fronts about relocating. They have a big fenced property and two large dogs who roam around out there, so while this continuum of care place near me in theory accepts pets, my mom and dad no longer have the strength to walk them on leashes and this facility doesn’t offer any private fenced yards. So this would all mean my finding new homes for them too. In theory I could take them but one of theirs is quite aggressive toward other dogs and I already have a smaller dog. So I’m not thrilled with this plan.

I do have a question. The diagnosis was given on the phone to my mom only. They are leaving it up to her what if anything to tell my dad. I believe he could understand on some level, at least intellectually, what bvFTD or certainly dementia is. But I suspect he would only care about it in terms of how long will he live and what restrictions will this place on him — especially driving and being able to do the other things he wants to do.  So it could just in effect make him angry.  

I’m hoping my mom will reach out to this support group today or ASAP but in the meantime, any advice on telling him his dx? 

M1

Suzy my instinct would be not to tell him, but I would defer to the support group on this one. I doubt that it would accomplish anything. Wish there were a way for this to be easier. I'd talk to their local humane society about rehoming the dogs.

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LaurenB

To tell or not to tell is a tough decision.  My LO was in the critical care medical community.  One would think that they would know what dementia is, but they no longer have that capacity.  Telling my LO that she does have difficulty with their memory is the most gentle thing that I can do.  Maybe you could tell your dad that his brain is giving him a bit of trouble?

Monti00

hello suzy, i would say it’s not really necessary to make a genetic test. As far as i know, only about 10% of all FTD cases are genetic and they are inherited in a autosomal dominant pattern, what would mean, that many of you relatives had have https://www.theaftd.org/what-is-ftd/genetics-of-ftd/

Suzy23

Thanks so much for recommending theaftd.org which led me to a support group. 

Even the very first meeting I attended was hugely helpful. 

It is giving me courage and strength to know what to do and then do it. 

Best wishes to all and many thanks. 

storycrafter

I read your posts with interest. My husband has bvFTD, young onset, slow progression once he got on meds to manage things; includes 300mg Seroquel and antidpressant, half dose of aricept; he is in middle stages, generally quite able and high functioning. High anxiety and manic-depressive behavior are his biggest challenges. You've done an excellent job getting involved early with your father's POA, etc.

Thankfully, my dh knows he has this diagnosis, but he knew something wasn't right from the get-go. When finally diagnosed, the neuropsych doctor sat us down together and told us his diagnosis; very helpful because my dh listens to authority figures. In our case I greatly appreciated not having the responsibility of telling him myself, especially before I had a chance to research and self-educate on the disease. The doctor explained, and my husband could hear the tough news from him rather than from his wife.

Many doctors find it difficult to give such a diagnosis to a patient. It took seven years before a courageous doctor would label it for us and tell us what FTD was. I'm shocked and dismayed for your parents to hear your mom was told "over the phone!"

You know your parents best, to determine how to handle things in their situation. There are probably as many different ways as there are different people. It's great you have sought out a local dementia group for your own support. They have been the best help for me. Your parents are lucky to have your support and care. Best of luck to all....

Suzy23

Hi Storycrafter,

Thanks for your reply. 

As far as telling my dad his dx, my mom has done so and he finds it entirely uninteresting. He had no questions about it or comments on it. He remembers all the dr appts and tests but considers them a big waste of time other than getting “better sleeping pills” out of it. I guess this is his version of agnosognosia  

And he’s very capable of doing internet research. In fact one of his new obsessions is looking up the etymology of words. He always used to like word origins but now he spends hours a day at it. Such a strange condition. 

Sometimes he is very sweet and sentimental, other times nasty. Both are huge departures from his prior self. 

He also spends a lot of time watching YouTube videos and searching the internet for information about people on the TV news. 

These are all welcome obsessions compared to some of the previous ones, but none seem to last more than a few months so far.