Dementia and presence of mind in public. Is it normal?

My mother really is the sweetest woman, but 7 years ago when my Dad passed away (she was incredibly dependent) she shut her brain off and has lived with me since. As time has progressed it has gotten harder and harder because of the dementia. She can't bathe herself properly anymore so I have to help with that, she can't actually wipe her seat anymore when she goes to the bathroom so I have to go with her and do that, etc. As it goes on and the list gets longer and longer of things I have to do for her I get more and more tired. It feels like the walls are closing in on me. My Husband and I literally go to work and take care of Mom. We have no life anymore. I read what you guys write and I think, thank GOD someone else understands how I feel. I've just come back from a week of vacation with my Mom and I feel like I didn't have any vacation at all.

God bless you all and I'm praying for you if you will pray for me!

Look up the word "confabulation"... in healthcare we use this term for patients with dementia but with somewhat of an awareness that they have it or that things are slipping. They are able to muster up enough resources to give socially appropriate responses such "How are you today" or "fine weather we're having", usually many of these kinds of statements are enough to help them get by as appearing to have their act together. Then their reality is they cannot sustain this for a long period of time and then they are "found out". Especially when pointing it out, it is met with resentment and anger. Certainly the people they are most comfortable around are the ones that become the subject of that anger.

I have learned alot today reading these responses. I can relate to most here. I do not have the skills yet to take care of my Mom they way she deserves. I guarantee, as of this moment, I am committed to get all of the help and knowledge I need to make her life better and mine. It starts now. I will not let her down nor will I allow myself to let myself down.

Thank you all for the rsponses..I will check back in. Bless our parents as they are so helpless and lost too.

My mom died of dementia related complications in 2011. We actually lost her...the mother I knew...probably a year before that. Thank God, she never got hateful or acting odd with anyone in the family or otherwise, in public or not. Besides her behavior alone with my father, she acted the same with me and family as she did with friends and strangers, at home and in public. However, she went through a whining stage and would do it only with my father when alone with him at home.

This led to him slapping her (his words) when "she wouldn't shut up". My father didn't/couldn't deal well with the extra responsibilities he had to take-on (which she had done for years), or the extra care she needed, or the changes that came with the disease and her. He could never comprehend the disease, referring to the situation as..."she's just being stubborn."

If others here have a similar situation where one parent is caring for another with dementia or Alzheimer's, be aware that caregivers, young or old, can be driven to anger, resentment, neglect and quite possibly abuse. It's understandable. This ugly disease can bring out the ugly in even the most patient and docile and loving person providing care or attention...behind closed doors...

lillylilly, the first time I heard of "show-timing" by dementia patients was in a caregivers' support group. I found it very helpful to realize that this behavior is so common there is a name for it. It wasn't just something I was imagining or that my husband was inventing. It is how the brain works under certain cirsumstances.

Sandfox, the demands they make on us are exhausting, aren't they? It is possible that your mother is seeking attention by her behavior, and I guess that in itself can be part of some kinds of dementia. It is also possible that the nearly unbelievable fluctuations in abilities are part of the dementia. It can really help our understanding (and coping skills!) to know what kind of dementia our loved one has, and what is "normal" for that. As I understand it, in Alzheimer's the patient losses larger and larger blocks of memories over time. For a while they may be living in their own 40s, then their 30s, etc. When they are in their childhood in their minds, then "childish" behavior like attention-getting behavior can be common. Lewy Body Dementia does not have this gradual and predictable going backwards in time, but it has pretty amazing fluctuations in cognitive abilities. Some days my husband can use the remote, and some days he simply cannot. This has got nothing to do with wanting attention in his case -- his brain functioning is just that variable. Poor dear can't help it, and he'd desperately like to be independent in using the tv. The bathroom rush jobs are very real and very sad for everyone concerned. The brain simply can't process the signal from the bowels or kidneys in a timely manner. I try to take this in stride and when I need to help clean up after the rush wasn't fast enough I try to be reassuring and let my husband know this is not his fault or any big disaster. (MInd you, what I am saying may not exactly match what I am feeling, but my calm acceptable is good for both of us.)

Joyce, it is sometimes hard to distinguish between dementia behavior and just more of same from lifelong habits. In a way ( a LIMITED way), having the difficult behaviors come out at home can be lucky. One caregiver in my local group had a husband who was as nice as pie at home alone with her. But he had aggression and other unacceptable behaviors in his day program and had to be withdrawn. She's glad he's pleasant with her but not particularly glad she has to be with him around the clock!

quakerite, I, too, thank the gods for eyes that roll!

Waverun, I am so glad you have an appointment with Adult Psychiatric for her today and I sincerely hope that helps you both. Might I also suggest getting some counselling for yourself? As you recognize, you have experienced painful losses. And there is no recognized way to mourn. No one is sending flowers, there was no little notice in the paper, friends aren't dropping in to hug you and offer a hot dish or a bowl of Jell-o with fruit cocktail. And yet your number one support system is dead. How very very hard dementia is on the family! I know that you REALLY do not want to pinch your mother or take your frustrations out on her in any way. You deserve some counselling to help you manage these very challenging situations. And please stop back and let us know how the appoint went.

Quagmire, you are definitely correct that a difference between public and private behavior is not limited to dementia, and narcissistic personality disorder is notorious for it. But in the early stages a dementia patient can control behavior in short bursts, usually reserved for public display. They can, with great effort, pull their act together for a visitor or a doctor, etc. This is not narcissistic on their part, and it is how they'd like to be all the time, but cannot sustain it. I feel really and truly sorry for family members of someone with narcissistic personality disorder who also develops dementia. OMG!

vhope00, dementia gets my vote for the worst disease also! I am so glad you are now able to enjoy the moments when your Real Mom is present. Many caregivers say that is what keeps them going.

greatat61, I can relate to your mom, both in her embarrassment over inappropriate behavior and in her being a nervous wreck trying to take care of him. I hope that now that she doesn't have to do the hands-on caregiving and that he is in a place where he behavior is understood she is able to relax a little and enjoy any moments when her Real Husband is present.

Next week our daughter and I are taking my husband on a week-long cruise. I know that he will be show-timing like crazy and will be on his best behavior. I also don't expect he can sustain that for a whole week. I am printing up some business card sized notices that say "Thanks for you patience. My husband has Lewy Body Dementia" (with a set for daughter, too.) If there are instances where his lack of inhibition might offend or hurt someone this small explanantion might help smooth it over. I have not tried this yet, but another caregiver in my group used the idea on a trip. She only handed out a couple of cards but was glad she had them. I really believe that most people are very kind when they realize we caregivers are coping with something that can't be helped. I'll report back if we need to use the cards!

Waverun: you said one true thing and one not true thing. The not true thing is that your mother is dead. As you are finding out, what you give her, you get back 100-fold. She is your mother and you can't just love her when she's nice. You need to get educated about this disease and take appropriate steps. If you are at the point of physically abusing your mother (pinching her), then this is a red zone case and you need to take steps now. Hopefully the folks you met with today can help you (and her). There are all kinds of books and support groups and internet groups (like this one) to lean on. You're stressed because you don't have the skills yet. (Most of us start with The 36-Hour Day, and also Pathways for Caregivers by Gail Sheehey).
The true thing you said? This is the hardest thing you've ever had to do. Hard, but not impossible.

Waverun-I'm sorry you're going through this but it sounds like you're living with my mother. I have only had her here for 5 weeks, but my sanity has been tested almost daily. It seems she conviently forgets what she puts me through. Quagmire says narcissistic and I agree. My mother is not the person I knew for the past 74 years. Even her body movements have changed. And she's sneaky, and she steals, and she's short tempered. I'm so confused. All of the things I did as a kid that were unexceptable are now her new babits. Going outside and leaving the door open, leaving lights on in rooms, not flushing the toilet, leaving messes on the counter, etc. I can't be myself around her at all. She doesn't like what I watch on tv or listen to on the radio. I was watching Funniest Home Videos trying to cheer myself up, and all throught the show all I heard was "That's not funny that's not funny". I go in the bathroom so I can cry and she yells for me. I took her to my regular MD and she acted normal and passed the mental questions and I could have screamed foul ball! So I feel defeated. She realizes there is a problem and sometimes asks me not to put her away. I have to promise her I wont. I just don't know what to do.

MIL showtimes for an entire weekend (or realitves are lying) They swear there is nothing wrong with her ( cause they spend at least two days + alone with her their reasoning is is "How can it be a showtiming for that long? She can't be that bad right?") When they leave she's a mess...Diarrea or severe constipation (9 days last time) her blood sugar levels are all over the place...and sometimes she just stares till I nudge her to bring her back.... it takes sometimes 2 weeks to get her back on routine and reponsive. I have had to make arrangements to sleep over with her when the diarrea was so bad I didn't want to leave her alone. The family doesn't believe me. I want her to have full time care or at least more care....she can afford it...they won't let me spend the money and she doesn't want stranges in the house. So I guess it's when something really bad happens is when she'll get the care she needs...It's ridiculous...Meanwhile I don't sleep at night.

Before my Dad's dementia got really bad, I would take him and my Mom shopping and out to eat and to the Doctor. He always pointed out overweight or very tall people. He was very loud, flirted with all the waitress, and would stop to talk to anybody anywhere but especially people with babies, little kids, and other women. He was funny but it was embarrasing. One time when Mom had to go to the Doctor and my Grandson came with, he got riled up and starting saying "yahoo" louldly and many times. My Grandson and I just cracked up laughing when it happened and whenever we talk about. Thank goodness my Mom was in with the Doctor because she would have been reall upset. Guess you'd have to have been there to know how funny it really was. Before he went to AZL unit, his dementia he was so hard and difficult to take care of at home. My Mom was a nervous wreck trying to take care of him, watch him, and do normal house and yard work.

Waverun, I think we all have been through a similar situation. I think the worst feeling was of the pure hatred I felt towards my mom early in her diagnosis or just before we confirmed she had dementia. I fell into a depression after that, I suppose that's when the grieving for my old mom started. Since those dark months, the right meds, commiserating with other caregivers, I have started to totally enjoy those hours or days when my real mom is back with me. But then I cry again because I know the roller coaster we are all on. This disease is the worst I believe. Hold on tight to your friends or family or websites like this one...they will keep you from becoming too lost.

Waverun- the public/private dichotomy sounds more like narcissistic personality disorder. My mother is exactly the same. Gracious in public, miserable to me at home. The other issue is the dementia, which is not controllable by public/private situations. The dementia pops up like people have said here, a low percentage of the time and seems to be fueled by frustration- it can happen in public or private.

Yesterday my Mom stsrted her hatefulness around 2ish. By 8:30, I had lost my patienece. I said some mean things back to her. She wished me dead, spit in my face and had me crying for hours. I locked myself in my room to try and defuse her, that did not work. She would just pound on teh door until I opened it. I have an appointment today with Adult Psyciatric in hope of getting her on the proper meds to tame her. I really do Love my Mom. This morning when she got up, I was sitting on the couch with my heds on my forehead looking at the carpet. She asked me what was wrong, Do oyu have aheadache honey? Can i get you some asprin? She put her hands on my face, looked at me and said, Honey dont cry, I love you. You willl get a job ( I was laid off a few weeks back). She was my loving Mom again. I have felt so guilty all night for my treatment back at her. I do not know how to control it. I reached my limit yesterday. I even pinched her to try and shut her mouth up.

This is teh hardest thing I have ever had to do. I feel my sanity slipping away. I never knew I could ever hate my Mom just for a few moments. But lyesterday, I did. Ths disease is so damn ugly and sad. My number 1 support system has been my Mom. My Mom is already dead. The person in her now is a stranger to me. I wish, and prey, for the strength to help my Mom live the rest of her life with dignity and love .....I miss my Mom so much....

Lost is California....

This is a well-documented aspect of dementia. My aunt is 95 & 99% of the time she is sweet and funny -- but there is that 1%! The other day, in fact, we were going up the wide, cement steps into the yard when she suddenly decided that her legs didn't work. (They had worked fine at day care). She began to sag & throw herself backwards, which is frustrating because she did this to me once and I ended up with a concussion. So I kept pushing her forward, encouraging her to push open the gate, while she's screaming that her legs don't work. I managed to get her in the yard and onto a chair -- where she immediately began to complain that it was too hot, there was too much sun. But wouldn't take the last 3 steps into the house. I ran in, got her sun hat, ran back in, called a CNA friend who happens to live nearby and who happened to be home. Let us thank God for small favors! Angela came over right away and, as soon as my aunt saw her, she stood up, put her arm through Angela's, and walked easily into the house. As they entered, she said to me over her should, "Why you don't get her something to drink?" Thank God too for eyes that roll. My new motto, which I highly encourage caregivers to repeat 1million times a day: Blessed are the flexible, for they shall not get bent out of shape.

My Mom exhibits this showtiming behavior also. I think it is exhausting for her and that is probably why she is constantly feeling that she wants to be left alone. She lets loose verbally when I call her (which is the only way we can communicate as I live cross country from her).

She is pushed to her emotional limit when the caregivers, nurses or doctors want to examine her. She won't let them touch her. They have on at least on one occasion given her an anti-anxiety medication prior to a Doctor visit and it didn't help relieve her anxiety.

It is sad to listen to, but when I discuss her behavior with the staff, they tell me Mom is always pleasant and funny and they enjoy her. Thank God for that. I don't mind if she blows off steam to me, if it makes life easier to deal with. Now that I think about this, she has always been that way. Way nicer in public than behind closed doors. Mom has had dementia for several years but has always managed to keep it together. Good luck.

From my personal, frustrating experience I'd say yes. My Mother is perfectly lucid and sharp when in public, but her back home, and it's back to "I can't hear" (she can perfectly when in public), answers with an inappropriate answer totally unrelated to the question, can't change the TV channels (when she knows how) because she wants attention, will a find a reason that you never have time to take care of yourself if you try to accommodate the "I want, I want, I want", has a "rush-job" to get into the bathroom while you are in the middle of a 16 minute shower session (I have moved all my necessary stuff to the basement bathroom), etc.

Jeanne, how did you learn about this? I see some of this with my mother but didn't know it was an actual behavior. I have noticed when others are not around she will go on very nasty tirades about people. She was being very "on" when the therapists doing her evaluation to release her to return home from rehab were with her. She is very "on" when she visits the doctor. She is less "on" around her home care nurse so this is probably a good thing, or the nurse sees through the manipulation.

Public and private behavior being different is very common in dementia. At least in the early stages they may be able to put forth great effort and appear normal for limited periods of time. This is called "showtiming" and it can even fool doctors, especially if they have not been informed by caregivers what is really going on in private. The effort to "showtime" can take a lot out of them, and they may be wiped out or excessively crabby after getting through it. The ability to do this diminished so it can't be done for as long, or as often, until eventually showtime can't be done at all.

Showtime is not a bad thing. I think it is great if they can hold it together long enough to attend a grandchild's graduation, or to have a pleasant conversation with a visitor.

But showtiming can be very frustrating for caregivers. First, if the loved one can be that nice to the visitor, why can't she be that nice to me? Sorry, no can do. The "normal looking" behavior is an exception. The dementia behavior is now the norm. We can't expect exceptions to go on all day everyday. That truly is beyond their control.

And also, it is hard on the caregiver's credibility. Early in my husband's dementia my sisters would visit for brief periods and go away thinking, "Well, he is not so bad. I'm surprised Jeanne is having such a hard time dealing with this." Argh! Caregivers need validation, too, and to have outsiders think we are exaggerating or just plain wimpy is not pleasant!

My suggestion is to enjoy each episode of showtiming as it occurs. Since there is nothing you can do to change this, bask in her niceness in public. Just realize the on-and-off "normal" behavior is the exception and it has nothing to do with whom she loves best or who deserves her best behavior.

It's normal for my MIL. Everyone thinks she is so nice and sweet. But she also unleashes on my sister-in-law when she gets her alone. That was her personality all her life, so dementia doesn't have a lot to do with it in her situation. I'm not sure, but early on in dementia, I suppose they can control it a little. Even my mother-in-law will now say inappropriate things out in public. She's had this for about 7 years and it's getting worse, so it makes sense that her impulsiveness and lack of judgement are going to start showing.