DH Diagnosed with Young Alzheimer’s

JennyV

Hello! I am new here. My husband was just recently diagnosed with Young Onset Alzheimer’s. He is only 55 (as am I). He was misdiagnosed for the last 4 years with Pseudo Denentia (meaning he was having memory issues to do this severe depression that came on suddenly). I had to have DH hospitalized for the depression 4 times and down the mental health rabbit hole we went. I kept pushing the Dr.’s for more tests…MRI’s, Neuropsych Evals., etc and they kept saying the same thing. It’s Pseudo- Denentia. We ended up going to Mass General where they made the Young Onset Alzheimer’s diagnosis after his PET Scan & Lumbar Puncture. 😢 💔

As of now he is still in the early stage & is able to drive but can no longer work. I am looking for a community group where he can engage with others in his situation & age bracket. Kind of like a buddy system due to memory issues where he could still help with volunteering, and stay social. Is there anything like this out there?

FTDCaregiver1

Welcome JennyV - Though I can't assist on a finding local community group you mention, I want to commend you on fighting to get a proper diagnosis. All too often, EO FTD is misdiagnosed or simply neglected within the health care system. On average it takes upwards of 2 years to get a diagnosis from onset. I fell into the same situation as you did, finally a good neuropsych helped and with a PET, we finally knew. On getting her connected more socially, perhaps when she was in stage 4/5, I did visit our local non-profit store and hoped they'd take her on as a volunteer for a few hours couple of times a week with the other ladies, but it was a no-go. I did visit our local senior center (we too were in our 50s) and as long as I was with her, she could attend. Mostly we'd enjoy a lunch, sometimes flower class or whatever the folks were doing. Though folks wer much older than us, we made it work. Though she's no longer able to get out, early on, I tried to take advantage of what my local community had in place and work within that. Thinking back now, getting out with DW to connect her, at least, brought some awareness to my local town that EO dementia exists, and we are here and alive and want to stay connected with others and welcome any support they can offer. Wishing you the best of luck and we are all here for you, moving forward.

HollyBerry

Hello and welcome, though I'm sorry you're living with this. My partner volunteered at Habitat ReStore for several years before Alzheimers became noticeable (that could be debatable, but anyway). The current volunteer coordinator has been very gracious and says they've had others in her situation and they'll find things for her to do for as long as they can. I spoke with RSVP this week and they just said no, they don't have the right kinds of activities available. You may need to really work your personal contacts to find something. I wonder if you approach it from "my husband has had severe depression and would like to do some volunteering now that he's able" rather than bringing the AD diagnosis up first? it's not misleading, it's just bringing up a different part of his story first. Try the ADRC - ours is wonderful - and United Way. If he has an existing interest, he'll feel more confident volunteering with something related to that and it might go better than learning something new or finding a volunteer position that's just filling time. Second Harvest often needs people to fill boxes but it's so boring that nobody wants to come back (in our community). Everyone thinks of the Humane Society, but what about the smaller independent rescue groups that may not have a formal volunteer program but might need someone to come clean litter boxes or wash floors or that sort of thing?

JennyV

https://alzconnected.org/discussion/comment/223253#Comment_223253

FTDCaregiver1,

Thank you so very much for you response and suggestions. I will look into them. I am also planning to contact ADRC and Center for Living and Working as well as Agency on Aging and Elder Services. Sorry, I am not familiar with all of the acronyms yet. LOL. I have had a firehose of information unloaded at me in the last few months. Soo many things to think about and take care of. I truly am so sorry for the struggles you have been through with your DW and this terrible disease. I am trying to keep my DH as social as possible and do as much together while we still have this time. Everyday it feels like another piece of him has left. 😢 It's hard to accept this diagnosis at such a young age and even harder to watch it. Sending my heart felt wishes to you and your family. I appreciate your support. ❤️

JennyV

https://alzconnected.org/discussion/comment/223309#Comment_223309

HollyBerry,

Thank you so very much for all of the wonderful suggestions. I will definitely look into them. I am also planning to contact ADRC and Center for Living and Working as well as Agency on Aging and Elder Services. There are soo many things to think about and take care of. You make a good point about approaching if from "my husband has had severe depression and would like to do some volunteering now that he is able" as opposed to bringing the AD Diagnosis into the mix. I will definitely keep that in mind. I truly am so sorry for the struggles you have been through with your partner and this terrible disease. I am trying to keep my DH as social as possible and do as much together while we still have this time. Everyday it feels like another piece of him has left. 😢 It's hard to accept this diagnosis at such a young age and even harder to watch it. I really appreciate your support. I am so glad to have found a community of people who truly understand all of the struggles with this disease. Sending my heart felt wishes to you and your family. ❤️