Suggestions please

WeepingWillow

My DH was diagnosed a few months ago with younger onset and we're both struggling with how to process it and move forward. Even though we've been pushing for the diagnosis for several years it's still turned our world upside down. We're in our 40's with kids and I'm just not sure how to navigate or handle everything or where to even start. Does anyone have any suggestions of things that may have helped them?

Biggles

oh my I am feeling for you both. It’s hard enough navigating when like us you are in your 70’s my DH was 77 yesterday and we have been navigating this for about 8 years. One observant step at a time loads of love and patience. Thinking of you.

JoseyWales

Weeping Willow - my heart breaks for you. This disease is awful, and a special kind of awful when you're younger with kids home.
My DH was FINALLY told he had dementia at age 51. We'd been chasing a diagnosis for years. Our son was in elementary school when we first knew something was wrong. So I know where you're coming from.
First, go to a lawyer and get power of attorneys for both of you. Take him off yours.
Talk to an elder care lawyer - without your DH - to discuss how to navigate this financially in your state. It's not too early to start taking care of it.
Is he still working? I was able to get DH on disability fairly quickly. I used a lawyer who charged 50% of back pay disability. Since he was approved before that 5 -6 month wait was up, we owed nothing. That was one of the best moves I made, getting a lawyer to help with the disability application. I know you can do it without a lawyer but considering we owed nothing and were approved the first time, it made me happy.
The one thing I didn't do that I regret now is how much I tried to protect DS from everything that was going on. I wish I'd shared more with him and explained more about how the dementia was changing his dad. DS is now 24, and we've had some pretty good discussions about it, and he has shared how he was so confused at the time and didn't want to ask. I'd still protect him from the worst of it, but I do wish I'd let him share more. I tried to get him into some counseling at the time, but he didn't want to go and overall handled everything great. I did share his dad's diagnosis with the school.

SDianeL

what Joseywales said. Also get the book “The 36 Hour Day” which helped me after my husbands diagnosis. Also there are Tam Cummings videos online you can watch online. Learn all you can and make a plan. Take one day at a time. So sorry about the diagnosis. It’s a terrifying and heartbreaking disease.

beachbum

I am so sorry you are here. How old are your kids and do you work? My DH diagnosed EO about 10 months ago at 57 but started noticing changes about 7 yrs ago. He worked for a little bit longer while waiting on neuropsych evaluation. As soon as we received those results I had him go on sick leave which turned permanent and quit driving. I then applied for SSDI for him. I called and asked for in person meeting to fill out application, had all our doctors names and numbers. Honestly it went fairly easy for a government process. I will say the office was down the street and the health evaluation dept was familiar with our doctors. He was approved but still had the 5 month wait, first check should be in February. The driving is an issue, he did not fight me on it ( I said liability to great if anything happened) , but everything will fall on you. Chauffeuring kids, groceries, appointments, literally everything and it is exhausting. I did sign up for Walmart plus ( not promoting anything in particular) it was most effective and cheapest option in my area to have things delivered to the house. Know that you are not alone, there are many of us raising or were raising children and dealing with this disease. I was completely open with my children, in the beginning that something is not right and then when diagnoses official. It takes a bit to process that this is real.

WeepingWillow

Thank you all very much. I just feel so overwhelmed. We're fortunate to both still be working but every day I wake up with this horrible anxiety that today's going to be the day I get a call that something's happened at his work or something. Our oldest kids know but our youngest does not and we're struggling with what to tell her. A huge part of all of it is the fact that since he is still working he does not want anyone to know if his diagnosis. It was a struggle to even get him to agree to tell my family. He is doing the biweekly infusions but only the person who approved his FMLA at work knows what they are for. Because he's so concerned about work finding out he's reluctant to seek out the resources around us but hopefully we still have time. How did you tell your school aged child if you don't mind me asking

Crushed

My wife was older but still young onset. Put together what you need for SS disability process as soon as possible.

beachbum

My kids knew something was wrong because he had showed symptoms for some time. I have always been very open with them and am not one to sugarcoat things ( just my personality). I am medical and deal with trauma everyday. I told them that I see people die everyday that do not know it is coming. We now know your dad’s diagnosis and know his time is limited . We know the end result so let’s make the most of the time we have. Lots of big hugs, wiping tears, and helping them make as many memories as possible. My DH also kept it quiet from work as we were going through testing, but it is a small office and when I talked to them they knew something was off. I explained I needed the official diagnosis for him to give notice but that I foresaw them needing to replace him in the future. He did drive at his work and worked alone a lot which was an added concern. It is still very hard on my youngest, although he is in college now, but wants to be included on every detail. My kids were jr high/high school when this started, I’m guessing yours might be younger. There is no good answer,it sucks because they are going to lose their dad. I do know mine didn’t want me to hide anything from them. Feel free to message me if I can help or you want to vent

CampCarol

Welcome and so sorry you have to be here. You should also check out the “New Caregiver” group link, (click ‘groups’ on the right side of your screen); there’s a lot of good information there for those who are new.