Has anyone explained to spouse exactly what they have ?

charley0419

Would you advise explaining to them what’s going on.

JeriLynn66

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.

LJCHR

I agree with above. It will not benefit them - but telling them could upset them.

M1

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.

Howaboutnow

I would not. Even early on, my DH and I would leave his neurologist appt and he’d feel depressed. “I screwed that up”…and be bummed for a day or so, but not knowing exactly what the issue was.

For me, In the beginning, i so badly wanted to “be in this together”, to carry the weight of it together. I’m sorry to say, my DH even at early diagnosis did not have the capacity to comprehend and maintain awareness of what the diagnosis meant. I found it a no-win to try to communicate the truth.

Pietas61

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.

GothicGremlin

My situation is a little more like @Pietas61 . My sister was diagnosed with early onset in 2018 at age 59. At that time she knew very well what was going on. There were a lot of tears and trying to understand the "how did this happen to me?" question. If that's where you are @charley0419 , maybe explaining it would be helpful.

I would say that Peggy and I discussed her Alzheimer's a lot in the beginning, all the way through to about mid-stage 5. We used that time to get her legal ducks in a row. At around mid-stage 5, she wasn't quite sure what was wrong with her anymore, and I began steering conversations away the topic. Like others have said, it just wasn't helpful anymore. She was no longer able to process that kind of information, and even if she could, she'd just forget the entire conversation anyway. If this is more where you are, I'm with the others, I wouldn't try to explain it to her.

Now, at late stage 6-early stage 7, when Peggy says to me "sometimes there are things I can't do anymore", I just respond "me too." And then I redirect and move on.

GothicGremlin

@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.

Denise1847

Hi Charley,

Unless the person is constantly asking and distressed by their condition, I wouldn't tell them. It only distresses them and alot of times they don't believe it. Ask yourself, what is the purpose of my telling them? Will it make the situation better? What is the compassionate thing to do? Does it help or harm the situation?

These questions will bring you clarity as to what actions you should take.

harshedbuzz

@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

Pietas61

https://alzconnected.org/discussion/comment/189587#Comment_189587

Thank -You I will look into both of these books.

charley0419

https://alzconnected.org/discussion/comment/189621#Comment_189621

Too be honest I guess it’s for me. I want her to know why she’s mad at me at times. She says I yell sometimes at her , treat her like a baby and she’s right! I guess it’s frustrating, can’t believe strong women like my wife has now looked to me for many of her answers. This group BEST thing to happen to me all of you are great and I guess we are a special family.

BPS

I really would like to have a long discussion with my wife about what is happening to her, (or really about anything, but those days are gone). I know it would not be helpful and would upset her, so I don't. When an issue comes up, I just tell her that her memory is not as good as it was but that is OK because there is a lot of things I can't do as well as I did when we were younger and that seems to help for a while. I never use the words Alzheimer's or dementia when I am talking to her. That may be because it is easier for me then for her I don't know, but it works for now.

Quilting brings calm

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 ….

ghphotog

I don't ever remind her or tell her. In the early days her daughter wanted her to get tested but she didn't want to. I have to try and be discreet when I tell the doctors about her dementia progression as she will get very upset and go into hysterics. She doesn't know she has it even though now she's somewhere in stage 6 I believe.

If they don't know what's going then I think it's best to let sleeping dogs lie in my opinion.

Minnesotamiss

How can you get a diagnosis if the person refuses to get tested? My DH will not go to the Dr.

Denise1847

https://alzconnected.org/discussion/comment/189630#Comment_189630

Hi Charley, I get it. You want her to know that it isn't you and why you get upset. She will not be able to process it and is likely to get agitated and defensive. PWD have all kinds of cognitive challenges. They cannot change and we need to adapt. Please read "the 36 hour day" and check out Teepa Snow on YouTube. It will bring you to a better understanding of what is happening with her. I am so sorry Charley and our journey is wrought with challenges, but you have come to the best place. People here are like a family, supporting each other is slo many ways. Please keep in touch and continue to post.

JeriLynn66

https://alzconnected.org/discussion/comment/189659#Comment_189659

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

Denise1847

https://alzconnected.org/discussion/comment/189659#Comment_189659

Hi Minnesotamiss,

If your DH has a primary care doctor, reach out to him/her and explain the situation. Our PC ordered an MRI and did a mini mental test, which showed the dementia/Alz. The MC can prescribe the necessary meds and maybe talk him into going to a specialist. May I suggest you post your question as a "New Discussion" so that people will see your topic and respond. There are alot of wise people on this site and will be able to give you more suggestions.

Quilting brings calm

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