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SueC1957 Asked September 2016

Mom's oriented one minute and confused the next. Now I'm confused.

Mom is 93, has stage 5-6 Alzheimer's dementia and lives in a memory care facility. I thought I had a clue as to the level of confusion dementia patients have as they progress through the stages. I assumed the confusion would be constant/continual. I guess I'm wrong.

We visited her last Saturday. I asked if she knew my name. Her reply, "Yes, you are Susan C..... (my name). And what relation to you am I? "You're my daughter". Both questions were answered quickly with the correct information. Barely 20 minutes later, she gets an old Christmas card out of her purse with my name on it. She tells me that "this person, Susan C...... is a horrible person that I knew in SF (where I was born) who forced me into "this place" (memory facility) and has always been mean to me and had stolen everything from me. I hate her." I played along, asking questions and telling her that if I ever saw her, I'd make the situation right. That seemed to pacify her and the discussion ended.


My confusion is; In Stage 6, how can she be lucid one minute and confused the next? What is happening in the brain to work one moment and not function the next. I felt so "spaced out" leaving there, as if I'd been in two dementions at the same time. It's unnerving. Has anyone else experienced this?

EXPERT Carol Bradley Bursack, CDSGF Sep 2016
I've taken the moments of clarity with joy and kept them in my heart. No one can predict them and they really can't be explained (that I know of). Enjoy those times and hold them close.
Take care,
Carol

jeannegibbs Sep 2016
Your assumption that confusion would be constant/continual was logical, but not accurate. Fluctuations are common in dementia.

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momdoesntknowme Sep 2016
My Mom is better in the morning, although she never knows I am her daughter. As the day progresses she gets worse, i.e. sun downing.

I am always amazed when my brother calls from Florida, Mom is almost herself. Mom's switch in emotions reminds me of when we were kids, we did something wrong, Mom was upset, screaming or was administering corporal punishment :), then the phone would ring. She would pick up the receiver and act like the sweetest person, like nothing was going on in the house. When Mom was chasing me around the house to swat me, I was praying the phone would ring. : P. One day, using my cell phone, I called the house, handed the home receiver to Mom and went out of the room...she knew who I was!

I often wondered how she could switch from one emotion to the next in a split second. She knows me on the phone but not standing in front of me.

Dementia is like a box of chocolates. . .

moecam Sep 2016
One way I get mom to respond is that I bring her something which starts visits on a good footing - mostly I go to Tim Horton's & get a mocha coffee or an iced lemonade with either a cookie or doughnut - she loves the treat & usually asked where I got etc - this leads to a conversation about all sorts of things & helps her focus when she's having her drink

Grandma1954 Sep 2016
There are "better" times of day for some. My husband is more aware in the morning than in the late afternoon.
so if possible schedule visits when she is at her best.

It might help if you think of the memories as a piece of paper that is rolled up some memories will touch another and the two will mesh and become one.

I also would not "quiz" her..don't ask her if she knows your name or who you are.
You can greet her ans say "Hi Mom it's Susan, Bob and I thought we would stop and visit for a while. We brought you some of your favorite cookies, you taught me to bake these when I was a little girl."
This way she might not feel stressed and anxious at trying to remember names and other details.
When she goes into the "horrible" person that put there there just say ...well I think it is wonderful that they are taking such great care of you. I love it that you are safe and I love it when I know where you are and that you are doing so well" Give her a kiss and a hug...
Then go onto another topic and she will soon forget the "horrible" person.

ferris1 Sep 2016
If you knew exactly what stage your mother was in, how would that help you? Each brain is unique responding to the ravages of this disease at different rates. Instead of trying to figure out why she does what she does, just love her for the time she has left with whatever she is thinking, or not thinking...

dejavuagain Sep 2016
I think the way you handled "the many faces of Susan C" was excellent. Caring for or visiting a person with dementia often involves role playing on your part. It's as if the other is in a stage play and you are one of the actors. Sometimes you get to play the hero, sometimes you are cast as the villain and at times you are just an anonymous extra. There is usually not much you can do to change the script, and even if you succeed it's only temporary. The next time it will be rewritten all over again. It's called Improv and I guess the only way to deal with it is to go with the flow....

DoreenC Sep 2016
I understand; I have experienced much of the same thing. Someone explained it to me this way. Dementia is like a broken record - many pieces of the mind are fragmented. But there are times when the record is smooth and the person seems fine and themselves. But then will return to the fragmented mind. So sad.

My mom is in memory care. Twice when I visited I didn't think she knew who I was. Last visit - she seemed to know me and asked if I was staying for dinner and spending the night - like how things were when I would visit her at home.

I know its heartbreaking.

Gigi11 Sep 2016
Based on experiences with my own mother -- 98 with vascular dementia -- I think sometimes it's a matter of focus. She always has had a tendency to retreat into her own mind and the first hurdle in communicating is to gently shift her attention to the outside world. Sometimes that works and sometimes not.

Yes, caregiving can be a thankless occupation. Perhaps you can't feel grateful that your mother still is alive and available as an object of affection (whether appreciated/reciprocated or not). But at least you can give thanks for the opportunity to be of service to another person since that's basically the job.

Blessings to you and the entire family during these challenging times.

Cathberry Sep 2016
First of all, I don't know if "thankless job" is tongue-in-cheek but if it is how you really feel, then I am so sorry. As a fellow nurse, I am sure we have done more than our fair share of "thankless jobs". It seems that you have spend some time thinking about, and researching your mother's condition so perhaps it is not so thankless after all!

I know that it is tempting to ask a person with dementia if they remember a person or an event. I found myself asking my husband what he had done during the day and, of course, he didn't remember. He has dementia. I would never think of asking him if he knows who I am. Not because I don't want to embarrass or frustrate him but because I don't want to know if he remembers, or not, the woman who has been married to him for the past 20+ years. For me, that would be the beginning of the end.

The hardest thing for me to accept is that the symptoms of dementia come and go. One minute my husband is asking me about our dogs and the next he is telling me about the jet planes he had been inspecting that morning. Given my personality, and my nursing background, I just want to "fix things". This is one thing that, no matter how hard I try, I cannot fix.

Perhaps it would be more productive to say "Hi Mum, It's Jane. Uncle John has come with me for a visit." That way she may be able to understand that you are her daughter and John is her brother.

There are no easy answers to this type of dilemma. When I run out of things to say, I just hold his hand--then I go home and cry--not only for what has been lost but also for what might have been or, more to the point in my mind, what should have been.

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