FTD young onset

SheaRx

My 55 year old husband was diagnosed with Alzheimer's 11/2023. We have will be married 31 years this April with 3 children and 7 grandchildren. Previous we had were separated for 2 years due to him checking out of life with everyone. We got back together last March 2023 for one last try. His behaviors were more bizarre, and I had stopped and look at him clinically and not as a wife. I observed countless symptoms of early onset Alzheimer's. His sister was diagnosed 5 years ago at 49. Her decline has been rapid (unable to work or drive). He was reluctant to any testing because he felt this could not be happening to him and everyone around him was just exaggerating his deficits. I started him on the fast track of getting him treatment and support. He had to have 2 MRI's and 2 neuro/cognitive workups for him to be diagnosed with frontal lobe dementia. Looking back my husband started with his symptoms decades ago but we just accepted as him being quirky, dealing with PTSD from the war and effects of long-term drinking. He retired from law enforcement 6 years and now works for a local aviation company. The MD stated he can still work and drive for now. The plan is to evaluate him regularly if/when symptoms progress. We still have a battery of tests and specialist to see this month. I am now trying to coordinate his VA doctors, neurologists, psychiatrist and PCP health care professional to be on the same accord when treating him. I also do not want him to be overly medicated. I know that we are blessed for the diagnosis and the positive feedback we have gotten this early in our journey. I have read that it takes years to be diagnosed. I have worked in the medical field for 20+ years, raised children with rare syndromes/disease and special needs, and seen some pretty tuff stuff on the job and life. But this is a reality where no one knows where the pitfalls are or when they will occur. I was angry with my husband for so long for checking out on us. Now I feel guilty and ashamed. I would have picked up on these symptoms with any patient but could not see it in my own husband. Now I must learn how to separate his illness from him. It is a struggle and choice i must make every day. I choose to close and lock doors behind him, turn off lights, turn off the stove, repeat things constantly, track his whereabout thru an app. He is stubborn and constantly make jokes out of his deficits and tell me to stop overreacting and that people make mistakes. He eats excessively, laughs at his inappropriate behavior, has absence of empathy and apathy in everything and everyone, repeats and forgets things constantly, word finding in conversations. I feel like i am in quicksand 2 months in. I know the first step to getting somewhere is to decide you are not going to stay where you are. We have been stuck in this twilight zone not realizing that FTD was taking over our lives. I feel behind and everyday trying to catch up.

Jeanne C.

So much of this resonates with me. The behaviors are so like my husband. The guilt: been there - bought the tshirt.

You said: We have been stuck in this twilight zone not realizing that FTD was taking over our lives. I feel behind and everyday trying to catch up.

Yes! That! I spend so much time thinking about, learning about, and dealing with FTD, that I feel like there's nothing else sometimes. And I never feel like I can relax bc I'm so behind and have a million things to do. And that thought can completely paralyze me and then nothing else will get done. I'm trying to get better about cutting myself slack and just making a shortlist so I can feel that I accomplished something.

CStrope

Most days I feel like surviving each day is an accomplishment!!!

FTDCaregiver1

SheaRX - Having read your post, so much connects with me as well but overall, you're incredibly insightful, and so relatively early on since your husband's diagnosis last November, think your medical training and experience has served you well. Don't feel guilty about not being aware when this disease crept in. This is a horrible disease, its steals surreptitiously into the bodies of its victims and into the lives of families and spouses without so much as a whisper and without compassion or regard. You do have the power to mitigate the effects this disease has on your husband, you and your family, don't feed it through feelings in guilt/doubt. You are not at fault; your husband is not at fault. It took me some time to pick myself up, dust off and push on, but I can say, from what I've read, you're doing far better than I was when I was at your stage. Godspeed and much love!