Has anyone explained to spouse exactly what they have ?

It usually isn’t helpful as 1. They don’t know or believe nor can they believe anything is wrong 2. With short term memory loss they cannot remember the conversation or context

But they remember how the conversation makes them feel.

Charley, im curious as to why you want to tell her. Are you hoping that she'll understand? Because she won't, and you probably need to get your head around that. Acceptance of her limitations will help you a lot in terms of learning how to cope with her illness-both now and as it worsens.

My 56 year old wife was just diagnosed with early onset 2 days ago. These past few months we hugged and cried as she stated 'I don't know what is happening to me'. Now she knows and is going through this grieving process as we tell both sides of the family. She at times cries and says 'why me'. At this time she is fully aware of the situation. All I can do is hold her, love her, and support her as my heart breaks. When her sister calls her she ends up crying every time as her sister makes it about herself not understanding the do's & don'ts. If it causes her pain it is off limits. I know I will have to have the discussion of power of attorney & end of life desires as it won't soon be an option to talk about.

@Pietas61 I'm so sorry about your wife. Early onset has its own set of issues, none of them easy.

Two books that really helped me a lot in the beginning were:

Somebody I Used to Know: A Memoir, by Wendy Mitchell. Peggy lost the ability to read very early on, and so I read this book to her. She was very early at that point, so it was good for her to hear. The book isn't depressing at all, very conversational, describing how she came to be diagnosed, and things she does to compensate for her losses due to Alzheimer's. It demystified a lot of things for me, and opened the door for me and Peggy to have some good conversations. I highly recommend it.

When I first started reading the book to Peggy, she said "this is exactly how it feels - somebody I used to know." That was an eye-opener. I would never have known that her feeling of being "someone she used to know" was a thing, so the book really helped me to stand in her shoes and understand some of her feelings.

The other helpful book I found is Understanding the Dementia Experience by Jennifer Ghent-Fuller. It was actually an online pamphlet when I first found it. So much good information there.

@charley0419

You've brought up the topic of your wife not discussing her diagnosis before. Since she was in a clinical trial and is actively avoiding the neurologist, I assume the diagnosis was shared with her at some point. Yes?

I have to ask what your motivation is in telling her? What do you hope she will do with that information? Are you hoping it'll finally "stick" and she'll be more compliant around your caregiving? Are you using it to remind her why she is no longer allowed to participate in certain IADLs like driving or spending money? If she's angry, are you hoping she'll understand your motivations come from a good place and be appreciative?

Often PWD retain the emotions associated with an event (like being told they have a fatal illness) but can't actually recall what it was that upset them. It's possible you share this information, and it leaves her feeling a hurt or anger she doesn't have the cognition to process. Early on in dementia, empathy and higher order reasoning skills are impaired. She might not have the bandwidth to truly understand the implications of her memory loss nor be able to see how it impacts you or your relationship as a couple.

My situation is different than most here. Dad had mixed dementia- an alcohol-related WKS and Alzheimer's which was mild/moderate at the time of his diagnosis. The former does respond to treatment and maintaining an abstinent lifestyle, so we did try to get his compliance around not drinking to potentially arrest the progression of the WKS. Alas, he was unable to appreciate his predicament and policing his consumption became a triggering behavior that put us all at risk. TBH, telling him only made him angrier which made his care that much harder. While he "knew" his diagnosis he neither believed it nor appreciated the gravity of his current impairment and gravity of the eventual outcome. In his mind he had the memory issues that are a normal part of the aging process. We gave up. it served no purpose but to make him miserable and our lives difficult.

HB

I use the same method as BPS mentioned in his comments.

When Mom comments on her confusion or her memory issues, I reply that a lot of people in their 80s have some memory issues. She knows she has a ‘memory doctor’( an NP at the memory clinic), and that she takes medication to help her memory (Donepezil). She doesn’t know she has dementia. Both her PCP and the NP have mentioned the word in front of her, and she never reacts. She just doesn’t process it at all.

I was at the neuropsych when he gave my step-dad the results of his testing. Several pages of notes and resulting diagnosis of dementia. Step-dad only reads at a 3-5th grade level, so the pages were just blah, blab, blah to him. He didn’t react to the diagnosis. Refuses to go to a neurologist even though his PCP tries to encourage him as it would help his balance issues. He doesn’t realize he has any cognitive issues ( his issues seem behavioral rather than memory related ). In fact, he wanted to show the neuropsych notes to the AL activity director as if it was something to be proud of. Those notes magically disappeared from his cabinet to my house.

So I would sugarcoat it if I were you. ‘Lots of people your age don’t drive as their muscle reflexes are slow’. Lots of people your age ….

Minnesota, you will get more responses if you will begin a new post..

Minn…. You can start a new discussion by hitting the plus sign in the yellow circle. You should be able to copy your original question to it.

If you can’t get your loved one to a doctor, you might have to wait for a crisis to happen that would get your loved one in front of a doctor due to an emergency. This happens quite often