TMI, Don't explain, and keep it simple! Advice from someone with MCI.

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Last week I met with a man I met online 5 years ago, shortly after he was diagnosed with the beginnings of Lewy Body Dementia (which my husband also had), as Mild Cognitive Impairment (MCI). He lives on the other side of the country, but I've met with him and his wife several times when he has been nearby for medical consultation.

It has been a rocky road for him and his wife. A current conflict we talked about was that if she does something and he doesn't like it or it is disturbing to him, etc. he'll tell her to stop and then she wants to explain what she was trying to do. I suppose she feels defensive, or wants to assure him she was trying to act in his best interests. But he doesn't want to hear the explanations. He takes for granted that she is trying to do the right thing. She doesn't need to defend herself. She just needs to stop -- no explanations or apologies needed.

He talked about how overwhelming it feels to him to be getting too much data coming at him, too much stimulation. He needs it shut down and simplified.

I thought that a very interesting observation. Does it ring bells with anyone? Does your loved one with dementia ever get more agitated when you are simply trying to explain why something happened? How do you handle that?

(BTW, I was late in meeting with this couple. As I parked the car I thought of all the reasons for the delay. Some of them might have made mildly amusing small talk. I decided not to explain -- I didn't drive an hour and a half to discuss such trivia. I'd apologize and then get on with what we were together for. Holy Cow! I'm sure glad I made that decision after hearing him on the subject of too much information!)

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You must be incredibly helpful in providing guidance to this couple - having been down the road they're currently on. I have to admit I feel for the wife - and of course the husband. I've read a bit about Lewy Bodies Dementia - and while all dementia is a horrible disease, LBD seems particularly awful. But back to the wife - as you said, she's likely doing the explaining in a attempt to reassure or even reason - with the best intentions. Even if it's being defensive, I imagine she's scared - frighten of making a mistake, frightened of the future. While there is a ton of information available these days on how to handle dementia, as we know, every situation has its own unique-ness. As a parent of a child with sevear autism, I've no doubt made 1,000 mistakes along the way. Unfornately, lifes challenges don't come with instruction booklets so we muddle through doing the best we can.
Great observations
Jeanne, i think you've provided us with such valuable information here. I'm curious, was his wife able to "hear" this and take it in, do you think?

I think for many of us, explaining what we're doing as we're doing it is part of how we teach our children about the world. As our parents decline and become more childlike, that impulse kicks in. Hmmmm, great food for thought!
Babalou, I'm not really sure. I'm sure he has told her this before. I emphasized that this is all due to damage in his brain, and not his choice. He had just gone through 3+ days of testing at Mayo Clinic, and there is ample evidence of the organic nature of the impairments.

I think it can be especially hard when the impaired person is close to "normal" in many ways. This man has actually improved in some areas, such as verbal skill, since I met him. He tells that he has totally lost math skills. He can still do household projects, though what he used to be able to do in 2 days now takes 2 weeks or more. He is declining, but slowly, and he remains highly functioning.

A core characteristic of LBD is fluctuating cognitive levels. I know that when Coy had several good days in a row I tended to expect that level of functioning. I imagine that when someone appears normal in so many ways it is especially hard for the caregiver to accept the fundamental impairment.
When I noticed my late Dad was starting to have sundowning and he was calling me to say he missed the bus and would stay at the hotel, I noticed if I was trying to help him realize he hadn't been at work, and the hotel was the senior living facility that Dad got even more confused.

Eventually I started to learn to hand out less information. "Sorry you missed the bus" and "yes, stay at the hotel" made Dad feel much better. These sundowning episodes usually happened if Dad had been taking a long nap, probably dreaming about his career, and thinking what he had dream was real.

I know for myself, information overload can be exhausting for myself :P
Yes jeannegibbs, I get the nasties from hubby when I try to explain almost anything. And if the TV is on, which is most of the time, it has to go to mute or he cannot follow the conversation at all. We wanted to grow old together; we had no idea what we were dreaming about.
Awwww, Pam
Great. I have been diagnosed with MCI and get cross with MYSELF at my thinking inabilities but my wife thinks I am cross with her and an argument will begin. In the following forced silence I feel so alone I consider suicide. (I know I won't, but that's how low I get!)
I can no longer watch a series on TV as I cannot remember previous episodes or the characters. I loved reading but have the same problem in being unable to remember what I had read before!
Your early comments about the carer's feelings are very helpful (if I remember them!) as my wife feels she has to defend herself. She then gets angry when I interrupt her, but, as you wrote, it's just too much information that I can't handle!
At family or friends gatherings I often find myself alone as I feel embarrassed that I may have repeated myself many times and cannot remember their names or any previous conversations or meetings.
At least I know, in my quiet moments, that this is happening - I just wish I could stop it!
Regards to all. Kit
Oh Kit, how very hard for you! Perhaps seeing that this TMI reaction is common in MCI will help you be able to articulate it to your wife.

I can also understand the fear of saying the wrong thing when you are among people you "should" know but can't quite place. My husband once asked me if I was his first wife or his second wife (!) And I can see how that makes you feel alone and even worse. Dang! My husband, Coy, was very open about his diagnosis. All of our friends and family knew about his impairments and he could count on them to make allowances. Still, it must be very lonely to be isolated by your lack of memories. My heart goes out to you, and to your wife.

Another thing that helped us is recognizing that we were angry/disgusted/dismayed/etc at the disease, not at each other. You say that you get cross with yourself and then your wife thinks you are cross with her. If you both could agree that it is the disease you are cross with, that might help. Talk about this sometime when you are calm and relaxed and having a good day!

Are there any local support groups for caregivers of persons with MCI? Your wife might find it reassuring that other caregivers struggle with similar issues. And are there any support groups that you could attend? Knowing that you are not alone doesn't change things but sometimes it makes it easier to accept.

Keep in touch here, if that seems helpful to you.

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