Early onset Alzheimers

ChrisR68

Good Morning,

My DH was diagnosed with EOA 8 months ago. He is 54 I am 58. He was working as a lineman until 2024, he was working 70+ hrs a week, I am an ER nurse I work 24 hours nights. I have assumed the role of everything, which is ok but frustrating at times! Esp when he asks what can I do? in the beginning i would give him tasks until, I realized either he forgot or now I have to explain everything and it'll take even longer. It has been hard but I have finally learned to take a deep breath and except this new journey ahead. I went on PFMLA for 13 weeks that ended and now I am on intermittent FMLA for myself so I can take days off for appointments etc. I know from reading everyone's posts I need to get him on Long term Disability through state, we live in Mass and he is a Marine Vet, so any suggestions on where to start would be helpful! Also I haven't seen any posts about anti-amyloid infusions, is anyone experiencing this? My DH started Lecanamab IV infusions in January they are every two weeks, with MRI's in between to check for microbleeds. I also have him doing cognitive behavioral therapy twice a week, but we just changed to once a week ( he was getting aggravated) the therapists are wonderful and very helpful, I sit through them too so I can learn some new ideas or strategies, eg phone use , calendars, games, writing skills, book reading. I am fortunate that I have a mother who, God bless her is 77 and still does Zumba and comes to my house every weekend to take care of my dogs and help clean around house organize or sometimes just sit in pool. Despite family and friend support, no one truly knows what you are going through until they are in your situation! I have a once a month in person support group. I am finding this online chat very helpful and overwhelming, I read a few posts about going away, I wish I could but I took him to Mexico in January before infusions started it was frustrating he got confused more esp in airport. We have a camper and try to go there but same thing he is out of his element and its not relaxing. Maybe I could try a road trip he does drive but only short distances, I do all of the driving, even when he try's to be a back seat driver I just brush it off I want to say then YOU DRIVE! but I bite my tongue lol

I am thankful for this online chat group :)

AlekoW

I'm relatively new here too. Sounds like you're well on the path, a good thing. My DW was Dx'd in February. Contining waiting for treatment after roughly 6 months. Glad your fella's on infusions—our goal as well. FDA just approved a Lecanamab subcutaneous home injection. We're going to ask once we finally get to UCLA's Easton Center. We're wondering if that's the same need for MRIs (brain bleed). Interested in known how things go with infusions.

Goin' places… I'm her driver ("Drivin' Ms. Amiee"). My spinal injury/partial recovery means we already weren't driving far without stops every 2 hours to stretch and close m'eyes a bit. We made it to BC back in 2019 that way… I'm not looking forward to later stages where traveling is problematic. Interesting to me to hear about MX & airport issues. We're in SoCal so that's just down the road a piece. I know from friends in Guanajuato there are states it's best not to drive through. Still, we enjoyed drives across the continent in the past—with Offspring lots of stops, LOL. Things not being relaxing via camper, I'd imagine would present challenges.

I guess I'm blabbin' as a long way of sayin': I hear you. All that's definitely "a thing." And sendin' ya encouragement from the Pacific Coast to the East Coast. 😎

Michele P

https://alzconnected.org/discussion/76581/early-onset-alzheimers

https://alzconnected.org/discussion/76581/early-onset-alzheimers

Welcome. I am sorry for your husband’s diagnosis. I would ask your attorney for an SSDI attorney he or she would recommend to file SSDI for your husband. I have been through this process and found that going through this with an attorney’s assistance was invaluable. You pay no money up front. They take a fee when he is awarded SSDI that comes off your settlement. If you have not had legal documents put in place with an Elder Law attorney, do it now.
Call your husband’s VA and ask to set up an appointment with a Veteran Service Officer. The VSO will help you get medical care for your husband. The VA will have a social worker assigned to him. The social worker will meet with you and discuss everything that is available for your husband’s care through the VA. Take notes in a notebook of all meetings you have with any doctors, or support team members at the VA or outside the VA. You will be bombarded with a lot of information that can be overwhelming at first. You want to set these meetings up asap to start getting care for your husband. My husband is rated 100 percent disabled- total and permanent. The VA covers in home care with ALL medical supplies needed for his care, transportation to and from appointments, adult day care at VA approved facilities, VA nursing home care, home and vehicle renovations as needed, physical therapy, occupational therapy, speech therapy and more. Make sure that a geriatric psychiatrist is on his care team for medication. As far as driving, he should not be driving. If he gets into an accident, his insurance company won’t cover it with his diagnosis, and you can get sued for everything you own. Others here will help you with more information. If you have not read The 36 Hour Day, it will help you prepare for what’s coming next. Come back here for help and support. We have your six.