Update: Possibly FTD?

Belle

There hasn't been much to report since my DH was released from the hospital last Fall after needing surgery for a severe cellulitis infection due to being immune compromised and refusing to shower. In November he had his fourth round of multi-hour neuropsychic testing (we are on year 8 of trying to figure out what is wrong ). The neuropshych is leaning towards an FTD diagnosis and also diagnosed him with ADHD and ordered him to continue psychiatric care. Also, I slipped the doctor a document of behaviors/issues I had observed and that went into the report and she noted it was what I reported that lead her towards thinking it could be FTD. He thinks he's doing great, of course.

In the report she stated that he is now considered a danger to himself and others. Specifically she mentioned his hygiene issues endangering his heath, my reporting that he left a space heater on in the garage for days, the need to remind him to eat meals, etc. She did say his memory was basically OK (he does have lapses) but reading up on FTD it seems that memory isn't an issue until stage 6 so that makes sense to me. I guess we'll go forward with the PET scan and see what that shows.

Any other FTD spouses here? How are you coping? Did you have to place your spouse in MC? If you did place them what issues caused you to do that?

Biggles

Hello Belle this disease is the worst it fools so many people including the medical field, you don’t need anyone else to tell you that there is something wrong. Coping depends where your DH is but it turns into a 24 hour caring routine in the finish. I found the best thing was to talk on this site about all your concerns, highs and lows. The experience and advice you receive here is just the best. I have had to grow into my 24/7 caring roll of my DH, kicking and screaming with a lot of tears, it’s a lot of work haven’t tried MC and again at this stage don’t want to. I have built a world around my DH at the moment it’s working, we are surviving.Good luck, keep posting.

SDianeL

there is a search feature on this forum that may help. It’s at the top of the page. Type in FTD and it will find all the posts related. Hope this helps.

GothicGremlin

Hi @Belle

I'm sorry you're having to deal with all of this. I'm not a spouse, but my sister was diagnosed with Alzheimer's and FTD. She passed away about 10 months ago.

Peggy's memory was pretty good until she got to the beginning of stage 7 - she always knew who I was. It wasn't until maybe the last month of her life that she didn't recognize my partner, or her best friend. She had other behaviors that were problematic, similar to what you've described, and then in stage 6 she had hallucinations and delusions.

All things considered, she was diagnosed fairly quickly - less than 6 months! She saw a neurologist, and from there she had an MRI and a PET scan, and it was those two tests that led to her diagnosis.

Also, there's an FTD group on this site you can join, although it's a little quiet right now.

Iris L.

Please read the Safety section on alz.org. Leaving a space heater unattended is a fire hazard. His memory does not sound okay to me.

Iris

FTDCaregiver1

https://alzconnected.org/discussion/71649/update-possibly-ftd

Hello Belle, sorry for your situation, must be frustrating. My DW had EO FTD, recently passed yesterday morning at home in her sleep. Was a blessing as we battled this for 8 years. She suffered from extreme anxiety the entire time. Like your situation she underwent neuropsychiatric testing, MRI and CAT but inconclusive though both the psych and neurologist suggest dementia, wasn’t until we did a PET that a diagnosis was discovered through brain imaging, frontal temporal degeneration. As to memory care, tried this…4 MCs, total of 6 months out of the 8 years, she was kicked out repeatedly due to excessive anxiety, specifically hyperkenetic and loud yelling, (moved constantly, moving objects, shadowing, loud talking and yelling). After several stays in mental facilities, trying so many medications, none seemingly to work, some she had bad reactions such as paradoxical-benzodiazepines and Parkinsonism’s reaction to pregabelin and most recently Rexulti resulting in a short hospital stay. I brought her home to care for her for the last year and a half until her passing yesterday. Worked hard with our local PACE program to arrange in home day care, and other supports, medications, diapers, pads…etc. still rough but she passed away in my care at home peacefully thought the loud behavior excessive movement continued right up until the end. I hope and pray your journey passes quickly and you receive the help and support you need. God speed.

ronda b

Sorry for your loss. But glad she isn't suffering anymore.

Belle

@FTDCaregiver1 I am sorry for your loss. Thank you for taking a moment to respond to my post.

@ Iris I agree 100% that his memory is not good and for the life of me I can't understand how he did well on that part of the testing. Now I double check everything multiple times a day to make sure nothing dangerous was left on or doors left open, etc.

Everyone else… will continue to read and post. I am not good at sharing what is going on and I try to handle everything myself. It's starting to take a toll on my health. DH is resistant to my help and it's wearing me out. At some point I won't be able to take care of him at home any longer. Is it wrong to just wish for peace for both of us?

jehjeh

https://alzconnected.org/discussion/comment/233140#Comment_233140

Not wrong at all.