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 believe his diagnosis. Looking back my husband started with his symptoms decades ago but we just accepted as him being quirky, dealing with PTSD for the war and effects of 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. He is being evaluated every 2 months and more regularly if/when symptoms progress. 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. 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, 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 everyday that I choose to do. 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 and show him dignity and love when he cannot do the same. Just feeling lost and overwhelmed.

M1

welcome to the forum, you have come to a good place for support and advice. If you haven't already done it, make sure that legal matters are taken care of--you need power of attorney for healthcare and finances, and a certified elder law attorney can also help you regarding having him apply for short-term and long-term disability (remember, you don't want him fired for cause as he will lose any retirement benefits), SSDI, and Medicaid if needed in the future. You can find certified elder law attorneys listed by location at nelf.org.

Jeanne C.

I was angry with my husband for so long for checking out on us. Now I feel guilty and ashamed.

I had similar feelings. My husband was diagnosed FTDbv a year ago. The earlier symptoms were all behavioral. I wasn't thinking that my 64 yo husband had dementia; I was thinking "my husband's a jerk." I've struggled with guilt over not seeing it and for being so very angry with him. Now that I know, it's oddly better. Of course I would give anything for him not to have this. And absolutely, this is the hardest thing we've dealt with. But understanding what's happening makes it easier to make that choice to be there for him. It's going to be hard (you know that). Take care of yourself and your family. The people on this forum will be here for you.