The struggle with acceptance and clarity about dementia's effects on our lives

My DH is still independent however the changes are obvious on a daily basis. DH has always been a workaholic and not good at expressing any type of emotion other than sarcasm. I am 53 and DH is 60. He has not accepted what is happening and does not want me to tell anyone what is going on. Of course this is not something we can go through alone. The main thing people say is yeah I forget things too that’s normal. Or they spend a short time with him and think he seems just fine. What they don’t realize is he has no idea what their name is or any real memories of how they know each other. He is very good at show timing and avoiding topics he doesn’t remember or if it gets confusing he stops talking and just listens. Our youngest son lives out of state and doesn’t notice anything when we visit for a week at a time. I did tell him on our most recent trip that his dad doesn’t remember our daughter in law or our 2 grandkids names. And the game he plays with our granddaughter that has animals on it that his dad has no idea what any of the animals are called it is basically a matching game. Other people can’t see what we see on a daily basis. This journey is as they say the long goodbye because we are losing our LO and the future we thought we had a little at a time. A fear of the unknown and what will be left for the survivor at the end. We begin the journey silently grieving and letting go as soon as we hear we are dealing with a neurodegenerative dementia.

I am so impressed with how articulate and thoughtful you all are, and I resonate with so many things that have been said. One of the things I realized with great sadness is that I went from having a partner to having a dependent. Over the years DW and I evolved into patterns of who does what and "how we do things." DW can only do some simple things now, and she doesn't remember how we do things. Example: Our town has curbside single stream recycling. (Everything in one bin.) DW can't keep straight the difference between trash and paper that is not trash.

Only someone who has experienced caretaking for a PWD can really know what we know. We were away for the summer a couple of years ago. When we got home, our across-the-street neighbor asked me, quietly, if DW was okay. I asked what she meant. She said DW seemed a little off. I had noticed changes over the summer, but the neighbor picked up on it right away. It turns out that her father had Alzheimer's, so she's very tuned in to the changes. Needless to say, she is very understanding as well as being a good sounding board.

DW didn't want me to tell anyone about her Alzheimer's diagnosis. For that matter, she refused to believe it herself, saying the people who administered the tests are a bunch of quacks. The irony is that, while she couldn't see the behaviors in herself, other people could see them. Usually the other people are afraid to ask if something is wrong, but they can tell something is a little off. In occasional moments of clarity, after I've explained for the umpteenth time that, yes, we're married, we bought and moved into this house together, she will say, "What's the matter with my brain?"

I understand the denial blaming the person doing the test did something wrong. When DH can’t name the animals in the tests he says it’s because he never studied animals or really got into knowing anything about them so that’s why he doesn’t know them. He has an excuse for a lot of things and guess what…none of it is his fault or caused by this disease

“One of the hardest things I can think of offhand is that we slept in the same bed for 50+ years together, snuggled and connected in every way. We haven’t been together in the same bed for over two years.

"Friends/acquaintances who say, ‘Oh, she seems really good."........ goood grief

Grief is truly an experience and not a process with steps and stages!

No need to be ashamed. Shark guy had a similar thread recently. No one's business but your own IMHO

@AlzWife2023 , I am with you 100% with just accepting my DH as he is any given day, loving him, and staying close. Stage 7 is moving fast. The decline in just the last 2 months is shocking and sobering. And terribly sad.

As for your post, I don't know if I read that one, but I am not able to reply to most things I read here most days, just given how much my DH's condition is requiring now. I am sorry to learn that by not commenting after viewing it might be interpreted as criticism or something else negative by the OP. That is not the case. It is only a function of my having hands full more than ever with his high maintenance needs. No judgement at all.

And your longing for a real relationship again - we get it. I also miss my beloved and sometimes really, really wish there was at least a special someone I could confide in and trust with all the ups and downs of this dementia journey that I am trying to survive-- like my DH and I always did. But that feeling is quickly suppressed by the urgent demands of this Alz daily grind. And my heart that is otherwise on "pause". That is not healthy long term I think, and definitely encourage and applaud anyone who is open to finding a new spark.

Storyteller,

I totally understand your thoughts. For me it was talking to my family about my DH diagnosis and asking them to get educated on it. Fortunately everyone is very open to the education. My DH is somewhere between stages4/5. He is still able to have meaningful conversations with me. We talk often about what is to come, and what he wants to have happen.

I found that self care is so very important. Talk to friends, family, co-workers. It really helps.