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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?

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Your assumption that confusion would be constant/continual was logical, but not accurate. Fluctuations are common in dementia.
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Thankless, Yes, this type of thing happened all the time with my Mom. It seemed like it would come out of left field with no warning and leave me feeling upset and confused afterward.She had been so strong, intelligent and logical and all of a sudden this was happening. I just went along with it and calmed her down but it was hard to see as I never knew when it would just come out of the blue.
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As the previous writer said, it is a common feature of all kinds of dementia to have fluctuating levels of orientation. It is very disconcerting for family members to not know what stage they will be in when they arrive. As we age our bodies begin to slow down gradually, including the neurones in the brain. Your mother's level of confusion will gradually increase and become more constant. This disease is heartbreaking and my thoughts are with you. Joining a support group in your area can be educational and supportive.
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my mom usually speaks gibberish.... then the other day she looked at me intently and said "where's your boyfriend? " Wut?!
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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. . .
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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...
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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.
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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.
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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
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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....
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Thanklessjob, when my Dad first started doing sundowning, it scared me as I just couldn't wrap my brain around what was happening. Here was this highly intelligent man lost in his mind, and he knew he was becoming confused.

It took me awhile to learn to "play along" whenever he was in sundowning mode. I watched his caregiver respond to him and learned a lot from her as she knew the drill. The playing along did help with my stress. Dad never got into the mean spirited phase as he passed [98] before that happened.

With my Dad I was able to bring him into the here and now by asking him about the weather [his hobby]. Strange how the mind works, as Dad would give me up to the minute accurate weather reports for all around the nation.... where a few minutes ago he would say he was at a meeting at work [he retired 30 years ago] but he missed the bus [that would have been back in the 1940's] so he is going to stay here at the hotel [the Memory Center].
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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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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.
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Good advise from Grandma1954. My mom is 93 and we never know what to expect, good days and bad days for her memory. Also read up on delirium. Dementia patients experience it quite often. Drastic changes in mood and memory. It is a challenge to know what is right, how to respond, what to say and do. We can only love them and try to be patient and accept that they absolutely are not responsible for what they say or think. The brain is damaged and you just have to try to keep it positive. Prayers for us all....
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Thanks to all for your insightful answers. Sibling5, I will read up on delirium, thanks for that suggestion.

Just for clarification; I know what stage of dementia my mom is in (it's in my first sentence-Stage 5-6). I also know why she is like this-Alzheimer's. I AM loving her by visiting her, being patient with her continual questions, taking her on outings, shopping for supplies, bringing flowers, etc. What I didn't understand was the sudden changes from confusion to orientation and back to confusion.

Thanks Morcam, she has responded well to peanut butter cookies, her favorite. 😋

I asked my mother who I was so I could "play along". I want to be whoever she wants at that particular visit. No sense upsetting her.

I am terribly moved to think that my screen name conjures up images of needing praise and glory for what I do. Nothing could be further from the truth! Nursing and caregiving ARE thankless jobs. It's the nature of the care. That in NO way implies that I am sorry that I have chosen nursing as a profession or that I'm sorry to be my mother's c/g. I have been hit, kicked, spit on, grabbed, screamed at, had feces smeared on me, etc. by both my confused patients and mother, as I'm sure other nurses have. It comes with the territory and, at times, is part of the job. As you'll notice, I'm still doing both, because that's who I am. I couldn't think of doing anything else and will celebrate my 38th year as a nurse in January. I get great satisfaction from helping people. I don't HAVE to be thanked by anybody. But this is a job that, at times, is 100+% from the nurse (daughter) and 0% from the patient (parent). When that parent has not had a close relationship with you, it can make caregiving even more challenging. But I do it because I care for my mother, it's the right thing to do and it needs to be done. I can't help that she really didn't care for me throughout my life but I'm doing the best I can for her now. I am so bothered by the reference that having "Thankless job" as a screen name implies that it's just a chore for me, that I am changing my name. I will now be SueC1957, so there will be no confusion about my care and concern for my mother.
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Azhiemer. Patients have their good moments & their bad moments.there are no two alike !It is what is on thier mind at the time.For instance with my sister she knows my brother on the phone -but when he came home to visit she did not know him as her brother.When he went back to where he is from & we phoned him
My sister asked him when he was coming to visit.She had not remembered him visiting her at all.There are days she knows my husband but can not remember his name.Other days she forgets my name.? Days & weeks are the same to an
Alzheimer patient ..It is harder on the care giver then on the person with dementia
I have my sister in a nursing home where I know that she is being taken care of.
She loves music , & bingo ( bingo is a hardship these days- but the activity aid helps her to find the number that is called .
I could never take care of my sister- she would be arguementive & tell me I am bossy.My sister is only 72 & has had Alzhiemers for 4 yrs.You can be young or old
And have Alzhiemers .
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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
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Thanklessjob: Yes, that's right...this is going to happen with your mother. Her brain is no longer functioning. You are most definitely wrong in thinking there was a constant.
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Like you, I initially thought that dementia was a steady decline from diagnosis to the eventual complete loss of every memory. This is NOT the case. My mother took no medication, and so I was able to observe her progress through the disease for five years as it occurs naturally. (She passed on the 14th.) I found a series of lectures on YouTube by Tanis J. Fermanm PhD. Mom was originally given a diagnosis of Alz, but as time went by, I could see that what she really had was Lewy Bodies Dementia - or one of the other 46 types of dementia.
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SueC.....yes, I think a lot of us have gone through this and there is no explanation. My mom who passed away in Aug. had her good days and bad days up until she passed. Even though she was on hospice and didn't speak except for disjointed words she still knew me (at least I believed it). I would leave and feel good one day and awful the next. I don't know if we ARE able to understand it. Our brains don't work like theirs. The best advice I can give you is to try and get yourself prepared before you even go in to see her and that way you won't be so confused by it. Just know that it might be normal or it might be weird. I've gone through this with my mom, my sister and my mother in law. Each of them were so different but the same.....it would still get to me every time it was bad. Hospice and others would tell me to enjoy the time I had left with each and I still don't know how you do that when you see them struggling so. I'm now watching my 94 year old dad failing. His mind is still fairly good, no dementia, but health failing. I've been caregiving for so long that it's hard to "really" enjoy the time with him but I'm honored that I can be there for him and have really gotten close to him after years of being so close to my mom (not that he wasn't a great father or I wasn't close to him but my mom, sister and I were so close). Anyway, don't get down on yourself or try to understand everything. Just do the best you can. That's all you can do. Good luck and God Bless.
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My mom is 70 and has dementia. I have had the same experience myself. One minute everything is fine and the next she asks me how Sue (yep that's me) is doing and am I making sure she is getting to school (i'm 49 now). Some days are harder then others. I just knida go with whatever she is saying and go with it. Until May of this year she was indepent and taking care of her self. Now she is in a rehab, waiting for the Madicare Waiver to kick in she we can find her a nice assisted living place. Good luck! :)
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SueC.....Gosh, I never even thought of your name meaning that you didn't care about your mom. Sometimes it can be a thankless job (and some days I would just plain not want to do it) but by no means does it mean it's not a very important one.....probably one of the most important ones we could have. Sorry if something said made you change your name. As I had said before my mom just passed Aug. 27th and it was tough for 7 years but I was so glad I could be the one to take on that role. My sister couldn't and also passed away a few years ago and now I'm taking care of my 94 year old dad. It's really hard but I will keep on keeping on. God bless
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Hi pargirl. never changed my name. that was my first post. I was just commenting on the ok 1 minute not the next post. my mom knows who I am when I go see her, but for some reason (probably her dementia) she still see's "her little girl" in her brain. it's hard sometimes when she goes off on "her little girl Sue" trips. I mean i'm right in front of her and she still asks how Sue is doing and am I making sure she's ok and going to school. I try to just go with it and tell her that "sue" is fine and yes I am taking care of her and school is fine.
A lot of times everything is good, but the 3 a.m. calls about Sue & Corey (my son) were there and left without saying goodbye are hard to deal with sometimes especially when i'm sound asleep when she calls.
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Hey Sue (Doodlinmama),
Pargirl was referring to me. Someone on this thread insinuated that it was very sad that I felt that way about my mother. I certainly did NOT mean that, just that caregiving can be a thankless job (along with nursing, which I've done for 37 years). Doesn't mean I wanting or needing praise. It's just an expression. It got me so upset that I changed my screen name to Sue1957 (my nickname and birth year). Can't be confused with anything now.
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I so get that. It's frustrating, maddening, sad, etc. I was with my dad today for over 2 hours going over papers that he had received while my husband and I had gone out of town (which we hardly ever get to). He had stock piled mail for me to look at and explain. I got him the Jitterbug phone because he wanted it (my mom had just passed recently so I thought it would cheer him up). Well, while I was gone I got several phone calls a day from it. Some he would just hang up because he didn't think I had answered (very hard of hearing) or he was trying to get it to work. When I got home the calls on home phone were just as many. No telling how many minutes he has used. So before I left today he asked all the same questions I had written out for him before I left. Don't get me wrong....I hope at 94 I am determined as he is to learn this thing but probably won't be because I will be worn out from taking care of others and answering the same questions over and over.
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