Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65

Thank you! Unfortunately, in the world we live in, teachers are highly underpaid and insurance is abysmal. He has private insurance which is going to cost us a fortune. I honestly am so incredibly overwhelmed that I cannot begin to comprehend the upheaval.

Hi. This is my first time contributing / commenting on this ….
My husband is soon to be 59. Our slow motion roller coaster started in late summer of 2020. I haven’t read a great deal of the posts on here—but early onset definitely caught my attention. In the very beginning there was such a huge amount of hope and prayer for a diagnosis that wasn’t any form of dementia. There is still a trickling amount of hope for there to be a miraculous medical breakthrough that will help. So many details of what our path has been to this point. We do not have any children. I was a high school guidance counselor. My husband is/ was a mechanical engineer. My chin stays above the water most days knowing the many blessings we have. I have know my husband for just over 40 years and been married for almost 33 of those! Lots of life shared. I would like to share all the details of where we have been thru this last 5+ years—but that is a lot!! My husband did do 18 mos of Leqembi. No idea if it helped.

I am glad there is a post on here for early onset. For so long, I didn’t want to read about others’ sadness. I just want to deal with my own. Plus—I see my husband as content and comfortable and in the words of my PCP, “pleasantly confused.” So there is a degree of difficult hearing of another’s hardship who may be further along with the disease than where we currently are. We still have laughter and smiles (I still cry and mourn—!!).

To the lady who posted that is a teacher with three young children—have you filled out any paperwork for receiving disability? It has been a few years—but that is available and the process is involved but doable!

So much more to share….
LKH

@brn2tch
My husband’s first neurologist (March of 2022) didn’t mention dementia. The second neurologist (August 2022) said she felt he had FTD at our very first appt with her. And she ordered a NeuroPsychEval (Jan. 2023) and still felt the diagnosis was FTD. She wanted to do a lumbar puncture and PET scan. She actually scared me and I wanted another opinion. The third neurologist (June 2023) was not very kind (he chuckled at me asking questions about mold—my husband’s work environment led me to this question), but he did offer us a referral to another neurologist (at a university) that we accepted. The fourth neurologist (August 2023–at the university) after his testing diagnosed my husband with Early Onset Alzheimer’s.
I wish I had the right words to offer you—I don’t think I do—but if calling someone who has been in a similar situation would be helpful, I would be more than happy to talk with you. I understand feeling alone. I feel like at some point all caregivers feel alone. I was a high school counselor before retiring to be a full time caregiver. I had just enough years in to retire with turning 55. I may not have answers —but I understand the value of being able to shed and share emotions.

@lhph93
Good morning! I would love to connect…. There is another lady on here who responded, and that’s what I need right now…. Real connections.
Thank you! I don’t know how to do that on this forum.

@brn2tch
Good morning—I am hopeful that my experiences thus far can be helpful to you. I recall early on not even knowing the questions I may have needed to ask. It (the whole of everything happening!) all just comes at you so abruptly. And …it’s happening…without time to process what is happening.
I don’t know how to do that either….
Maybe someone will read this and advise on how to connect with an individual without posting personal contact information on this forum?

Hello,
in the very first line of a post there is an address (in the middle) beginning with "@"
If you click on that address a window opens that offers "private message".
This appears to be a way to send private messages - haven't tried it myself though!

@dagmar25 thank you!

@milomiles
Just a caution. I was recommended this book and bought it early in our Alzheimer's journey ( my husband started having noticeable symptoms at 57) I did not finish it because it was too grim. I imagine that if I read it now, I would just find it wonderfully practical, but as the title indicates, it paints the really tough-to-look-at full blown picture of the burdens of caregiving, and that was not what I needed at the time.

Having shared that caveat about a great recommendation, I will share two other books that I recommend often for early stage caregivers/partners: Contented Dementia, by Oliver James. and Counting on Kindness: The dilemmas of dependency. Both are great at helping you be "patient" centric. The first is great on simple principles that get you more successfully (and less stressfully) through the emotional minefield. The second one unlocks things we do not realize about the difficulties of being someone who needs help and how to avoid the misunderstandings and pain that can arise in that situation.