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