First Post

suvi

I’ve been following along for months now and decided it’s time to jump in. My DH is 68 and was diagnosed with EOAD and logopenic progressive aphasia. His latest neurology visit in December had him in stage 5, but I think he’s probably been dipping into stage 6 for a few months now. We’ve been married 40 years and needless to say this is a devastating road to be on. I appreciate all the information and support here so much—people sharing their personal stories has been incredibly helpful to me. I struggle to know where to even begin sometimes. Thank you all!

trottingalong

I remember being where you are at the beginning. It can be overwhelming. Make sure you have power of attorney for both medical and financial. And during all that, you deal with the emotional upheaval you are going through. I have cried, screamed in my car, laughed, found patience I never knew I had and every other emotion you can imagine. Keep coming back here. It’s a great source of camaraderie with people who have been there or are going through what you are. It’s a safe place to say anything and not be judged. Take care of yourself too. That’s important.

tonyac2

It is indeed a devastating road we are on. I keep reminding myself, it’s not him, it’s the disease that I’m angry at. Instead of spending so much of our precious time being angry at the disease, I’m trying to find ways to make his life a little bit more enjoyable day by day. The calling out drives me crazy. Then I think of posts I’ve read where someone wishes they could hear their loved one’s voice just one more time. This disease is not just devastating for me, it’s devastating for him too. I think he misses himself as much as I do.

blacksparky

My DW also has EOAD. She is 55 and was diagnosed almost 3 years ago. This disease she has is tough on both the patient and the caregiver. I call it the Alzheimer’s roller coaster. You will have good days and bad days. There will be sad days that make you tear up and other days where you just have to laugh. Just the other night Pamella was in the kitchen and I was in living room. I ask her what she is doing and she says getting a bowl of ice cream. I say ok and then I hear a sound like a glass bowl scooting along the tile floor. I get up to check it out and find out that Pamella has made a big bowl of ice cream for Cooper our lab. By the time I see this the dog has devoured it. Looking forward to cleaning up the dogs barf later tonight 🤔😩😂

Jgirl57

Welcome suvi ! You begin by jumping into the forum. Proud of you . Read, vent, ask questions. It can be very isolating for the spouse , partner or primary caregiver . (((Hugs)))

Chammer

@blacksparky our lab just asked if she could move to your house! 😁

Timmyd

My DW is early onset and was diagnosed over 3 years ago. Tonight we went through the drive thru at a local Panda Express for dinner. Drive-thru's are still safe with DW, aren't they??? The drive thu is voice activated AI. My DW cannot keep quiet while I try to order. I am not sure what the AI heard, but we end up with a pu-pu platter assortment of Panda Express. Sometimes you just roll with it🙂

BPS

I think getting all the legal papers (POA and all) is not only important but gives a little peace of mind. It is also important to monitor email and web searches. Driving is also a big concern. My wife was diagnosed with early onset and she lost interest in those things but that is not the case for a lot of people. You are going to feel every emotion imaginable, anger, love, resentment, guilt, and so on. I think one thing that most of us caretakers have done is not taken care of ourselves. Something that someone here said was that this disease is going to take one life and if we are not careful it will take two. I think that is more due to the emotional demands then the physical demand a lot of times. I wish I could give you the positive side, but I have not found one. Enjoy your husband as much as possible while you can. One thing I wish I would have done better is to write down how things are progressing and my thoughts and feelings along the way. I think later I will wish I remembered when things happened and how I felt.

suvi

Thank you for the welcoming comments and advice. We did get our legal affairs in order and went through the driving struggle, recently selling DH’s car. I’m sure he still thinks he can drive, but he seems to have left that to me. I’m just beginning to look into outside help and that’s going to be hard for him. He’s sometimes frustrated trying to communicate, but otherwise has no awareness. Someone posted about dementia patients each being unique and in their own boats. I think about that in terms of each relationship, how caregivers and PWD are in different boats too and many can’t really share what’s happening for better or worse. Maybe my DH would have things he’d want to say. And then a couple weeks ago he seemed to have some sense of something wrong and was quite sad, and all I could manage to do was acknowledge and reassure him. We face so many choices. This post took a serious turn. I really just wanted to say thanks and that I appreciate the perspective, humor and honesty here. Very grateful.