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

showtimerskid, communicate with the doctors before the visits and let them know what Dad's behavior is like at home. Give a few specific examples. Most doctors are aware of the concept of showtiming.

My father is a major manipulator, control freak, narcissist 90 year old. He puts on such a well rehearsed act in front of relatives and doctors. I am sure he needs antidepressants. Any advice on how to mellow him out from his nasty negative raging behavior that he uses at home..... when he is "sterling" in front of medical folks.?

i have just discovered this web site... i dont feel so alone anymore. mother in law is 95. lived with us for 15 years, and im so tired of others acting like it is no big deal...she does act fine when others are around...and that makes me look like the crazy one when i tell them the things she does. and will say the meanest things to me ...i can tell they dont believe me...btw i cry daily and scream into a pillow

I just recently experienced seeing my mother go into a rage while my grandson was with me. Then I knew see was losing her ability to use some control. I don't believe she would have done it with only him there, but it was all directed at me and he was out of sight, just around the corner. I tried reminding her he was there and she just got worse.
She has a narcissistic personality so it's hard for me to say I miss her sweet side or be able to say it's just not like her. It's gotten worse since my dear step father passed away so she gas no one else to dump all her mean, negative comments onto. Her reasoning is definitely no good so I'm making sure I have Power of Attorney and Health care POA in order to use if and when needed.
She also talks nonstop so my brothers and I are learning to call her when we know we will need to go in 20 mins. I know that's why old friends don't call her as much or ask her to join them for meals. It's really sad, but she's her own worse enemy. It's a relief knowing someone understands how painful and difficult this is, but sad that there are so many others like you going through it.

I hate it when I tell someone that my husband has ALZ and they say, "Oh, well, we're all getting forgetful." That's true, but ALZ is different, even when in the early stages.

Oh am I so grateful for this! I've tried to tell my husband that his father "turns it on" for "the public" and for his brothers but I don' think he believed me! Now I even have a name for it! My brothers-in-law think I exaggerate his behavior because when they talk to or see him, "he's fine". At least now I know it's not just me!!

geori i cant tell the difference between what i would write and what you wrote. same exact situation and feelings. i have just started the process of letting go and transitioning my mom to other care. everyone has been telling me it wouldn't work long term and that it would kill me and was in fact killing me but i had made promises, thought i could find a way to improve her life and health. Until there is a cure or real treatment for the disease i know now that it just isn't possible at some point for one person or even three to take care of a person with this type of dementia. it ruins everyone's health and does not in the end provide a better life but a more diminished one for everyone involved. My regrets are huge but i can see some progress in accepting it and letting go of the remorse. I am entitled to survive. I have lost my job, my friends, my family relationships and my health over this. its time to see if i can regain any of it before i am in the same place as my mom. if i can have five minutes of peace before i die i think i deserve it. And so do you.

I had the experience of a "doctor" (thankfully, not my aunt's doctor) tell me that it was too bad we couldn't euthenize the elderly after they had outlived their usefulness. And more than one person has assured me that my aunt is "gone, she's not the aunt you once had." Really? That sure looks like her over there, watching Dancing with the Stars and eating ice cream. Luckily, my aunt's doctor is a geriatrics specialist not just with a lot of knowledge and compassion, but who is also willing to learn. When I told him recently about the benefits of coconut oil to folks with dementia, he was intrigued, especially because he could see for himself the change it had made in her. You have to be proactive and dig for information. As you have found. Read all you can, get on all the websites you can, and just do the best you can.

emmyjo, you are so right! Before my husband was diagnosed with Lewy Body Dementia and had the simple label of dementia, his primary care doc wrote an order for a walker and basically said goodbye and good luck. So many doctors treat dementia patients as "throw aways" even though not many of them would actually say it. On our own we found a specialist and that made a world of difference! It turns out there are many treatments for the symptoms of LBD (no cure) and a doctor who knows what he is doing and is willing to patiently monitor one drug at a time can greatly enhance quality of life for the patient and his loved ones.

Don't let your loved one with dementia be "thrown away" by a medical practioner who doesn't want to be bothered with the challenge!

These responses are very helpful. My mom was recently diagnosed with Lewy-body dementia. The problem has been that i have been seeking an answer and understanding of what was happening with her for two years! Her doctors all told me repeatedly that there was nothing wrong! That she was perfectly normal! That i was overreacting!That i needed to relax! Really. Doctors need to to start listening to the family and stop dismissing them as ignorant simpletons who have no knowledge and no vested interested in the patient -what, as the doctor does? I have been dealing with the most vile hatred, violent outbursts, severe emotional tantrums: refusal, to eat, talk, move ( as above in "quakerite") or participate except when she is in the company of strangers or friends. I and my family have been seriously physically injured, and emotionally damaged by her behaviors. We have been unable to access the appropriate care for her that surly would have improved her life due to the failure of the medical community to listen and respond appropriately. I am putting out a call to everyone: please do not accept this ignorance and lax attitude from the medical community any longer. I was told today by a doctor at the hospital who was evaluating her for stomach pain that basically she is a throw away because of the dementia. This attitude is not helpful to anyone at all and should not be tolerated. I am so over being brushed off. Don't let it happen to you or your loved ones. Stay and demand answers. You are not crazy! ... and this mini mental exam that they do to prove to you that they are fine does nothing at all!!! it isn't the evaluative protocol.
This is a very tough disease to manage. Take care of yourselves.
emmy

alz.org is an excellent source to be educate yourself and lovedones who are caring for your mother. I have used them on several ocassions when I have dealt with several issues.

Bekwalk, I agree with many of the responses. Suggestion: would her doctor refer her for an "elder evaluation" run by one of the nearby hospitals. That's what they call it in our area (Cincinnati OH) and it was quite helpful. In our case, it affirmed what we were seeing with my sister and gave specific ways we could help her.

Bekwalk, I agree with Waverun, that if the her doctor has not set-up an appointment for your mom to be tested for Alzheimer's or Dementia with a Psychiatrist then you may need to find a new doctor for her. Have you call Social Service or your Aging Agency in your area? maybe they can help you before making any decision.
As for the person with AD from what I understood they can only be on their best behavior for a limited time for it tends to wear them out n that may be why the person goes back sometimes to the naughty side. The person really don't know they r really behaving that way for part of the brain is not working.
I suggest to go to www.alz.org and educated, educate and educate for that is what I have been doing as well in order to undestand. You may also be able to get the book called, "The 36-Hour Day" by Peter Rabin for free if they have any extra ones at your local alzheimer's association. I hope this help for ya'll I am learning as well.

You may need to get another doctor. I have not had any issues with my Mom's doctor. None at all. The Doctor has been very understanding and pro active with my Mom's care. Maybe her Dr is clueless Dimentia behaviors. Like your Mom, My Mom also says things that appears she is aware.

I would try and get her into see a new doctor. That is crap that the Dr will not help. Has the Dr even sent her for testing? Sent het to Psyciatric? Set her up for teh memory Clinic? There are steps the Dr should be doing without difficult.

ok, here we go. I understand about the show timing now and my mother is quite good at it. We had two appointments today. The first one she was well behaved. On the way to the second she showed her ugly side and was out of control. Even in the waiting room at the second appointment she mumbled terrible comments. They called her name and- BOOM- back to normal. Her Dr said she believes me but until she catches her demented I cant get an apointment with a nueroligist. UGH. She even mumbled "I'm not crazy" under her breath so she understands what's going on. I don't want to put her in a home,which is what she thinks, I just want a diagnosis and some meds and some support.

jeannegibbs, Thanks for your info. I agree 100% dad needs a new doctor. The reason my sister and I haven't made this change yet is because he likes this doctor and will visit him without arguement. When we have addressed the possibility of changing docs dad gets very upset. I guess we feel that him getting some care is better than him getting no care at all. His current doc seems to do OK with regard to dad's other health problems...high blood pressure, diabetes etc. We are afraid that if we changed docs that dad would refuse to go. Maybe we should look for a geriatric doc that specializes in dementia but also let dad visit his regular doc once in a while??? Maybe after a while we could transition to the geriatric doc for all his issues and cut our ties with his current doc? I need to talk to my sister about this. We have to make a change. I just don't see any other way. Thanks again!

I got married a couple of weeks ago. My mother who is in her end stages of dementia. She was well behaved. Unfortunately we can't control their behaviors. Be patient. Sometimes walking away briefly will help the
situation. It helps me.

TammyGo, I know that this might not be within the realm of what you can control, but it is time for a new doctor, in my opinion. A doctor who has no concept of "showtiming" has no business treating a person with dementia.

My husband sees a dementia specialist. Obviously everyone in that clinic knows what is going on. I fill out a survey of Hubby's behaviors and abilities before each visit with this doctor. Hubby's PCP is a wonder geriatrician who treats my mother as well. I attend all appointments with both my mother and my husband and the doctor always catches my eye or asks me directly if I see things the same way they do. And, bless her, she manages to do that without making it sound like she doesn't believe them.

You are trying your utmost to do what is best for your dad. You don't need a doctor who is working against you!

Wow..I am so glad I found this website. I actually feel less frustrated as I read others expierences. We are all in a nightmare and trying to do the right thing for our loved one. This is so damn challenging and exhausting to all of us caretakers. There is a reson we are being so tested. This tests every pices of ones character. My Mom gas always told me. " What does not kill you, will make you stronger"

Bless all of us caretakers.

Yes my dad does this too. I didn't know exactly what to call it but "showtime" sums it up pretty well. He is perfectly nice and mannerly and polite to his docs or anyone else but the minute we get him back in the car the show stops and he reverts back to his "new normal" which is very bossy and uncooperative. In the past year or so my dad has had two ER visits. Both of these visits resulted in new medicines being added to his daily regiment. He sat as the ER doc explained how to take his meds and nodded agreement that he understood everything. As soon as he got back home he refused the new meds. He tells us he is a "big, strong man" and the he "doesn't need anyone to tell him how to care for himself." When we have tried to explain this behavior to his doc he just looks at us like we are crazy and making stuff up. Even though we have explained this personality change to him numerous times, the doctor is completely clueless to dad's real demeanor at home. This is so frustrating sometimes. My sister and I feel dad needs to be on medication to help him with anger and anxiety but nobody will listen to us because he is able to "showtime" so sucessfully for short periods of time. It does take a lot of energy for him to put on this show. After any errand or doctor visit he always wants to go straight home. We can tell the whole experience wears him out. It also seems like his ability to maintain his "show" is getting shorter and shorter. While I would hate for anyone to see dad at his worst, I kind of do wish his doctor could get a glimpse of what we truly deal with when we get dad back home and out of the spotlight. Maybe then he would understand.

My mother was living independently until June of last year. We moved to a 2 bedroom/2 bathroom apartment with a pool and gym downstairs. I felt that the pool and gym would be great for her, since she loves them both. I got her HHAs for 9 hours a day. She wasn't very happy with someone around her for that long, but I had to work. She would cry and call me constantly when I was working. I got fired for this. Yes, we should not be living together,defintely not,and yes I shouldn't be taking this abuse. I do call the Alz hotline often and they tell me what to do (such as take her out for a walk, stay calm, don't give in to her and argue back. I have the HHA who is coming in early tomorrow to stay with her until I get back from my interviews. I am in touch with an ALF in Florida who will try to get her assessment done where we live now, so not to make too many trips down there. I promised my mother "never a nursing home, never." I've written about this before. One psychiatrist told me that I must try to take my promise back and eventually that is where she will end up. If the ALF does not accept her, I am not sure what will happen. She has told me she will die if she goes to a NH. She was with my brother for two months and he threatened to send her to one. I jumped on the plane and took my mom back, got her own apartment,and everything was good, sort of. She's been through a lot of hell in the past three years with my family. I can't mention it all. Something will happen before July 1st. Hopefully, an assisted living. She can't afford a Memory center, so out of question. I have people working with me online to help me find a place. I really believe it is the enviornment, not doing things outside, not going to movies, eating out like she was doing in the past. She's so angry, and feels as though she's in jail. I pray to G that the ALF accepts her. I will move close by when I can, since there is no other family. It's just so hard. People warned me. Let me tell you how many times I was told to place her in a nursing home. She's my mother, has a horrific disease, can be dangerous, but it passes. I leave and go to the lobby or walk my dogs if it's early enough. By the time I come back, she is in a really good mood. The rage has ended. I think sometimes it's my unhappiness not having a life, having no job because of her, not having time to take care of my own health, and having the worst brother and sister anyone can have that makes things worse. We will survive, all of us. I just don't want those scratches. I don't take the insults personally, because I know it's the disease. I feel so sad that I made my own bed and can't sleep in it now. It was a big mistake to think I was strong enough to live with her. Just the worst mistake of my life. But, she's always been my best friend. I am afraid to place her in the hospital for medication adjustment. I am an RN who has seen and taken care of many geriatric patients who families have deserted them. I have also seen some brutal things go on in these places. It's not in my heart to send her to one. I want her short life to be a happy one and I'm not making it happy. I'm doing more harm then good, by not going out with her to a restaraunt, to a movie. I'm just so exhausted from everything. She won't kill me, I won't ever harm her. I worry about my little lovely pooches, but she loves them. I have heard some awful stories about dementia and how outbursts can lead to death. That is why I have a lot of support from the psychiatrist. I don't believe in drugs, I think it makes people worse sometimes, but her outbursts were too much to handle. I believe that the environment change will be good for her, they work with her, get her settled, she'll make friends, they don't push, she'll be happier in her last years of her life going to activities, having great meals every day. That's what makes my mother happy. Not sitting aroung an apartment all day long.

Here are two important truths in your post, georgi:
This disease is worse than any disease known to man.

Something has to give.

This is painful to Mother, too. She can't help it. You love her. But the bottom line is that no one has to tolerate abuse. You are being abused and something has to give. I know that adjusting her medications is one attempt at making something give. But it is not sufficient. Something else seriously has to give.

Forgive me if you've told us this before. I participate in a lot of threads and my memory isn't as keen as it once was. (Is dementia contageous?) Why are you and your mother living together? What alternatives have you explored?

Wow, Georgie, what a nightmare. Hardly know where to start. Has she been to a gerontologist who specializes in dementia? Is there an Alzheimer's & Dementia Association nearby? Can you talk to someone in the State dept of health? You need help fast. This isn't going to go away and you can't lock yourself away from it. You're going to need medical and legal advice. And, you're right, it's a terrible disease. But you can't let it take her AND you. Try reaching out to some organization and let us all know what happens and what you decide to do. Praying for you. (Margie)

Waverun and all,
My mother awakens in a sweet mood and then turns into a monster. Insults me, calls me ugly, skinny, tells me she wants me dead of a terrible disease. Sometimes it goes on all day long. I, too am lost. I close my bedroom door and keep my two little dogs in with me when she has these outbursts. She bangs and bangs, slams her mini walker into the door, I sit on the floor with my feet against the door, praying she goes away, perhaps forever. She turns the bathroom light off while I'm taking a bath (the switch is outside the door). I had to buy a lamp to keep in the bathroom. She, too, was my best friend, my only support system. The only difference is my mother doesn't care when I place my hands on my head, all she cares about is herself and the so called "person I am suppose, here to strictly take care of her." Ouside the apartment, she's still crazy. When we take a cab somewhere she calms down. She has been a horror show to every doctor we've seen. She's OK with her PCP, but that was over a month ago. She hits the woman that does her hair and uses foul language. Says terrible things to the hha and then apologizes when we tell her what she's done. I spoke to her psychiatrist today and he said to increase the resperdol to 2 (0.25mg) three times a day. The HHA just left and my darling mother just scratched my hand badly. I really think this pill is making her worse sometimes and I told him that. I have two job interviews tomorrow. Nice, scratches on my arms and hands. Something has to give. I really don't want her around anymore. She's too bitter and hateful. Of course there are those moments of, "Oh honey, you look so tired, why don't you rest for a while." Thank goodness she is now in her bedroom lying down. The psychiatrist told me that this causes her pain too, that is why it's best to try to calm her down. I pray to god that my little dogs and I survive this never ending nightmare. She said this to me last night, "I don't know what's wrong with me, I am just not right." This disease is worse then then any disease known to man.

Why thank you so much. I have no idea what type of dementia my mnl has for all we were told is that she had AD and that was two yrs ago. I know that my mnl don't have all the symptoms from the Alz.org but it did give me some helpful resources n so did the Area Aging Agency too nof course on here. My eyes r getting blurry due to the med for acid reflux. doc got me taking a whole pill at night n I always take a half one before each meals. (levsin sl). The dr said I won;'t be reading anything while sleeping so he makes sense n half tabs don't do it as much. Plus I take Achiphex as well. gotta go n thanks.

Excellent suggestion, lildeb. Calling the local chapter of ALZ Org is a great starting point. They've been around longest, they are in the most locations, and they have valuable resources and services for any one dealing with dementia.

Many aspects of dementia behavior, such as delusions or show-timing or sundowning, are not limited to a single kind of dementia.

Alzheimer's is the most widely known form of progressive dementia, but it accounts for only about 60% of all cases. That means that nearly half of the dementia caregivers on this site are dealing with some other kind of dementia. That doesn't mean we can't learn anything from the ALZ organization. I just mention this because if you find information about Alzheimers that just doesn't fit your loved one, don't be surprised or dismayed. Your loved one may have a different type of dementia. Take what fits and works for you.

And I agree with you, lildeb. Education is the single most valuable tool in caring for someone with any kind of dementia.

Been there with the 'show timing' several times with the mnl. ah!!! The best thing some of y'all can do is educate, educated and educated yourself as much as possible. go to the www.alz.org and type in your zip code for your local chapter to talk to them n explain you r new at this n need all the information you can get that could help you understand Alzheimers. A book called, the 36-Hour Day by Peter Rabin is a very great book. I call it my second bible n don't know what I would have done if someone on this site had not mention it. Plus, there are a lot of people who can help give advice and you can Vent..... Life is not perfect so try to breathe n go with the flow. put on some head phones n listen to music if repeated quwstion r driving u nuts. Get a white eraser board n write down stuff so when they repeat, u can just point n of course u will have to see if they can read it for a few of them don't have a very good education. Try not to take it personally n breathe.

Lovestinks, you've got some additional issues here and I think other members could give you useful input. I suggest the you start a new thread of your own so that peole with insight on the "they won't let me spend the money" issues might weigh in.

Some information to include: Who has POA? Who are these relatives that won't let the money be spent?

A weekend is a long time to "show-time" and if it is happening, it is no wonder that it takes her a long time to get back to "normal" for her. I wonder if it is partly show-timing and partly wishful thinking on the relative's part. The longer they can deny the problems, the more justified they can feel about not spending the money. By the way, are these folks by any chance expecting to inherit from MIL?

bekwalk, I am so sorry that you are dealing with these common behaviors of dementia. This disease is extremely hard on family members and caregivers! Narcissistic personality disorder is a well-defined mental illness. It has its onset in adolesence or young adulthood and remains fairly constant. The fact that your mother is newly displaying these symptoms in her 70s indicates that you are not dealing with narcissistic personality disorder (in my lay opinion). Mother may indeed be very self-centered, as a three-year-old is, as part of her dementia.

Do you know what kind of dementia Mother most likely has? Have you had discussions with her doctor? I think you'll feel much more comfortable in your caregiving role as you learn what to expect and ways to minimize her impact on your well-being. I won't promise you that you'll never lock yourself in the bathroom and cry again, but the caregiving role can get better, even though your mother will not.

Best wishes to you, bekwalk,!

Ah yes, they can sure "rise to the occasion"! "Showtiming" is even a better name for it. My mom could do it too, now she even flirts with the doctors; thank God they understand. She has had her thyroid meds tweaked several times lately, because it seems to build up after a while. The higher dose really causes her to be terrified, anxious, unable to sleep & lose weight. Sure hope it balances out real soon, pretty rough on us caregivers...AND sadly on her. Poor lady, she's a 91 year old widow who surely didn't think this awful disease would ever happen to her; and now she doesn't know it has (blessing in disguise).

To Waverun: get as much help as you can, take breaks, pray a lot and TRY to get enough sleep. Hope some meds help her calm down some, but sooner or later, you (alone) won't be able to give her what she needs. We can't "fix" them as much as we try. I struggle with trying to be in "her world", but it's easier on us both when I do! :-)