My Mom has that ability to "turn on a switch" when she is around friends. How can I encourage her to flip that switch on around us?

Look up "showtiming" which is the ability of a dementia patient to put their best face forward for visitors and doctor visits. Also look up "sundowning" for the nasty behaviors you experience in the evenings.
Then look up "caregiver burnout", because it is coming at you if you are attempting to take care of all these people without time for yourself.

Pam-thank you for sharing your insightful remarks. I will look up "showtiming" as that certainly fits, and I'm familiar with the symptoms of sundowning. I didn't mean to imply that I'm taking care of my MIL and her cousin as well-they fall within my husband's realm as they are both handicapped and are living in our "real" home. My husband truly is one of those very special souls who believes family takes care of family. My family and I moved in to my mom's house so I could be her primary caregiver. This was not the first "solution" that we have tried. At first, mom had a wonderful caregiver come to her home during the day when I was at work, but mom didn't trust her or even like her. She made a list of everything that was "missing" and treated her horribly. We then tried a different caregiver, and again a wonderful person mom didn't want in her house. The second day, mom ran to the neighbors terrified and told them she was being locked out of her house by the caregiver. Next, mom tried an assisted living complex (although she didn't want to) which is one of the nicer ones in the area as well as close by. Unfortunately, mom's paranoia resulted in that not working out-she wouldn't leave her room for meals or activities unless I was there etc. After a week, the staff asked us to tour the memory unit. It was so dismal and depressing that I couldn't place mom there, particularly since she is still very much aware of her surroundings. We then checked out 2 other memory units that were better, in regards to lighting and cheerful environments, but comparing mom to the other residents who were out in the commons area, she isn't ready for that step and would likely go down fast going in "too soon". We then decided to care for her ourselves in her home. I really thought she be more happy about living in her home, continuing to see friends/family, having her needs met, but she sadly moves from sadness to fretting to feeling apprehensive. I really hate this disease, and it's something that will soon take hold of many baby boomers and by the numbers.

You're so right to suggest that caregiver burnout is coming at some point sense I have little time for much else besides mom. I don't think I'll be able to handle mom's dementia long term. I am amazed and humbled by so many on here with the way they handle so many tough issues, so lovingly and calmly; unfortunately this ability seems beyond my nature as I pray for strength daily.

Urinary incontinence is certainly challenging. Mom can't tell when her bladder is full and is unable to go to the restroom on her own. It seems to be either related to the grey matter around the periaqueductal region in her brain not working or some type of spinal nerve damage (I tend to research about this beast late at late). A timed schedule is usually a disaster resulting in total urinary retention, so she usually goes in her Depends during the day and night, on occasion taking off the Depends at night and wetting the bed. She sees her geriatric neurologist (who specializes in memory disorders) this coming Friday, and I'm hoping he'll have suggestions for some of these issues. The med to tighten her bladder and relax the opening was completely ineffective (prescribed by her GYN after urodynamic testing). I'll have to watch how I word my questions about it to the doc, since mom does not like to talk about her incontinence.

Thanks so much for responding. Sorry I've come back with a lengthy reply. I read your posts frequently, and really appreciate you taking the time to help others. This board has been so helpful.

Where do i find information on Showtiming?

{Q} How can I encourage her to flip that switch on around us{EQ}
Lets face it the switch is broken.
Right now it works when people visit. Enjoy the change while you can. As Alz progresses listen carefully as confabulation infestates

chuf111 - Have you ever read a blog and thought perhaps you got up in the middle of the night and wrote it yourself? that's how I felt about yours, : ). We experienced nearly the same situation with my husband who was diagnosed in his mid 40's with dementia after lung cancer, brain cancer and several strokes. Eventually I had to be firm with Bob since living at home became dangerous for all of us (that's a story in itself). When we finally found the right place for Bob we built his "man cave" with all his favorite things, including a life size poster of his favorite Buffalo Bill football player. Everything was for and about "him". He didn't come out of his room at first either, but I would visit at meal time and join him in the dining room till he made friends. There was nothing easy about any plan that we made. I tried it all and ran myself ragged trying find the perfect situation, one that I could live with guilt-free. Although I don't think a caregiver ever stops feeling guilty about the decisions we make. In any case, I know the frustration you are expressing. Be careful, the burn out is real and can be dangerous for you. I'd like to send you a copy of Personal Positioning for the Caregiver. It won't solve the problem, but it offers suggestions on how to overcome burn out and includes enough humor that it may lift your spirits if only for a short time. Let me know if you want me to send you a copy - my gift. Hang in there!

Hi guys, I have found the most awsome book in my library. It is called 36 Hour Day. It deals with all the problems we talk about. If I didn't know better, I swear I think I wrote it. This books lets you what is coming and how to deal with each problem as it occurs. Get this book all you caregivers. Wonderful

Just want to share that my mom did the same thing. She was like that with her handsome smart tall doctors! Which made me a little crazy because she should show up for an appointment and flirt with them rather than tell them her symptoms. One day she even told me NOT to speak to them so she could flirt. She was so together when she was with certain people, but then when she was home alone with me, or even in the car on the way, she would deteriorate. When I asked her what was happening, she would say... I know, I don't know why I can't do X with you, but I can in the doctor's office.

Just wanted to share. We were very thankful for the good times and tried to put her in as many of those situations as possible. For example her exercise class at the library made her happy that way. Up until the end, it was great for us to know where she could "pull it together", because we knew that would be a bright spot.

Sadly with all of our parents, I hate to say this, but one day they will be leaving us. In my case, as it seems in your case, we tried to make it the best transition possible. It was a lot of work, but well worth it for the good memories in the many years that followed their passing. Wishing you all the best in this challenging but rewarding Care Giving life.

I appreciate the suggestion to look up 'showtiming' as well. I have witnessed a mid-sentence 180° turnaround. From the nasty to the nice, in front of the person she only wanted to see the nice. It is funny now.

Maybe you could ask the friends to come by to take her for walks? She might cooperate with them and you'd get a break.

Chuff, every caregiver has different challenges, so please don't negatively compare yourself to what you may think is perfection in what others do.

No one can know your whole life. What you've described sounds nearly overwhelming and you are doing a terrific job. As Pam said, you must watch for burnout. You can still take care of your mom when you have help, even if that help comes in the forum of assisted living or a memory unity.

True, other than being on call for emergencies (which, in itself, can be stressful) you will not be providing 24 hour care. That doesn't mean that you can't spend as much time with her as you can (or want to).

Caregivers shouldn't judge one another and most offer support and advice. We caregivers do the best that we can with what we have. You have multiple people to concern yourself with, even though your husband seems like a dream when it comes to his family.
Do what you realistically can, but don't allow your own health to do down. That won't help your husband, your mom or anyone else. Most of all lose the guilt if/when you must make other arrangements for your mom.
Take care,
Carol

Just sharing but my MIL was great at Showtiming as well! One suggestion, when you have a doctor's appointment and need to show the doctor some of her problems and help him see her changes, write a note with her current symptoms, as well as a list of things she should remember if she had no cognitive issues. Good examples would be, what she ate for dinner the night before or for breakfast, places she went the previous week or people who she visited with. You will be amazed at her answers! They sound so convincing, that anyone listening would think she was normal. Recognizing it for what it is does help you deal with it a bit easier. As far as her frustration with you or her caregivers, it does subside with time as she has accepts the fact she needs help and YOU are there to help her. If she has a friend close by that does not have dementia, you might want to enlist their aid in taking her for walks. Or stopping by a day or two to play cards and just socialize. This will also help in getting them to take showers, change their clothes. etc. so you don't sound like a harping mother.... You could even offer the friend a bit of compensation without her knowledge. Or barter some assistance to them on your part. This is the time you have to think outside the box for some creative distractions for her.

In the past

What a horrid heart wrenching disease altzheimers is! Standing back and watching this disease ravage a loved one is not for the weak. Yet it slowly weakens the care giver as much as they resist it. Our Mother is 87 and has slowly progressed to sitting in a wheelchair eight hours a day staring out a window. We all have tried to do things to stimulate activities in her life, but like the others have said, she refuses to do anything. She used to assist us in getting in and out of her wheelchair, but now, she can't seem to be able to stand or move her legs. She is like moving dead weight. She also has no control over her bladder and has to be changed several times a day. She also is now experiencing nocturnal bowel movements and the mess in the morning is horrendous, as she will loosen her depends before someone can attend to her. We used to be able to communicate to her, but now it seems she ignores us and will become combative when anyone tries to do anything for her. Trying to bathe or wash her hair is gearing up for war. She hates having her clothes removed and being exposed to the cold. We've tried pretty much everything. Recently, we have had to make the decision that Mom needs to be in a 24 hour care facility. Her doctors have also agreed that it's time. It's heartwrenching for all of us, but we aren't getting any younger either. We are also having health issues that minimize the type of care we can give to assist Mom. The guilt can and is overwhelming if you allow yourself to give into the thought that you are deserting them,. In most cases, this is not what's happening at all. When this happens, it's that you love them to the place, you want the best for them. Which at that time is providing them a place where they have the best professional care possible. Mom has deteriorated to the point mentally, that she only wants one person around her, and that one person assisting her when she is capable of understanding. That person, is my oldest brother, who I believe she thinks is our Father who passed away five years ago. Prior to his passing, he did everything for our Mother, who spent her day sitting in a recliner in their home. Things are not going to be easy, things will look very dismal, but from somewhere deep inside each and every caregiver comes the strength to keep going, and meeting the needs of our loved ones. It's a tough journey, and the caregiver has to remember to keep an eye on the fuel gage of their body, and stop for a refill as many times as they possibly can. Thus meaning go for an hour message, or get a pedicure, or out for a lunch with a friend. Believe me, your loved one can do without you for a couple of hours, while being watched over by someone else. Last but not least, learn how to slow down let go and let God guide you In your decisions. For some Thats just your instilled natural nurturing instincts, but either way, you will be able to provide what's needed. Hang in there!

We had something like this with my Mom when she had Alzheimer's: she wasn't ever mean or nasty with family, but often silent, non-responsive and passive. When anybody else came in her room she turned on the charm and became "the hostess with the mostest." All her life Mom had a lot of social anxiety or shyness, which she coped with by developing really good social skills, including being witty, funny, gracious and charming. Non-family folks, especially help or medical staff who didn't know her well would be "charmed" and not spot the dementia until she offered everyone the 15th or 16th napkin. In a sense, it was a compliment to us as it meant she felt totally comfortable with us and didn't launch into her automatic defense, coping or covering up skills. But, we knew she wasn't intending to slight us. Mom was one of the kindest people any or us ever knew, even if it was hard for her to show it as her demential increased.

It was frustrating at first with my mom, because she did rally up and seemed more normal during visits with friends and family and especially over the phone.

It was hard for people to see the what had been obvious to those of us that have lived around her.

Even though she is in the later stages...stage 6 ish as far as her mental capacity goes, although she is still physically capable, when she first was in the Nursing Home, because she was so good at it, the nursing staff questioned why she was there.

The heads of staff however had pushed her a bit and could see what was happening, and within a month the rest of the staff having worked with her for a while finally saw it too.

With my mom though she has Alzheimer's and a Frontal Lobe Dementia so she show's differently then someone with either or and it can be confusing. They had to do training with the staff on how to deal with her because she wasn't acting like they expected her too.

As far as Dr's go...she did well at covering up ...except that the Neurologist would keep her in the room to ask me what was really going on...it was uncomfortable at first, but now I see the reason why.

When I spoke of the things that were concerning and such, she showed more of her true colors, and this really showed the Dr what he already knew, but could witness during our appointments.

It's hard sometimes...people don't believe you when you tell them what's really going on.

I've read so many stories over the past year of people being blamed for miss diagnosing or lieing about how their loved one is acting, because the loved one can put on the show for days sometimes if they are for a visit.

Given time however, if the family member decides the person will stay for a while (because the caregiver is obviously lieing about the situation), they soon find out the truth.

Dementia is such a horrid disease.

Mom has been in a home coming up 3 months now, and is doing well.

I get out to see her a couple of times a month, as she is about 1/2 hr away on the other side of the City, but in one of the best homes in the State (we were very lucky).

At any rate...as we all say...take care of yourself, know that this behavior is normal from your mom, and you are doing a great job!!

(((Hugs)))

Dear Chuff111, Many descriptions of your mother remind me of my mother a year ago. She is now in a memory facility--a decision our family voted on but I was against. My mother was very attached to me and we tried many different agencies to get full care in her own home, where she wanted to stay. I believe it might be easier to get your mother to accept care now that you are living with her. My mother kicked all the caregivers out because I was not living with her. I introduced one caregiver as a friend of mine and she did accept her and really liked her, but unfortunately that caregiver was not equipped to do nursing. The facility has been very hard on her and I am still against it. My relationship with her changed from not heeding my advice to wanting my advice. You will see a natural transformation in time. It is so difficult for them to give up independence no matter how much they are suffering from dementia. She feels stronger and more confident with her friends because it gives her a sense of independence. I think you did the right thing to have her close by you and I wish you the best of luck!

Oh jeez. I need to look up showtiming. I experience the same things with my mom. She puts on this great face around friends and at the doctors, acting all in control, and then around me, she can't do the simplest of things it seems.

Welcome to the wonderful world of show timing. Mom has been able to pull it off for awhile but lately she has had to reach out to a friend who has not seen her in awhile because mom is frantic to show she still has her wits about her. This friend has resurfaced and has not seen mom in a few years. If this friend doesn't see the real deal after a few visits, than the friend too is demented. Lol!

I too will have to look up "Showtiming", as this describes my Mom to a tee! Just this morning we got in a big argument over her coming doctors visit. I told her, I was going to discuss some of her problems with him. She shouted at me, that "if you tell him anything, I will walk out of his office!". So when she sees him, all will seem perfectly normal and he will once again tell me, " your mother seems to be on the ball". When in fact, she only is that way when she is in his office!

My mom is great around friends most of the time and with family she don't see often but with me can be nothing short of a witch. My birthday is tomorrow and since she always starts acting up on Friday and throughout the weekend and better Monday I told my kids to not do anything. Anything that takes the attention away from her she will only try and ruin it for everyone. She does put on the show when needed, and sundowning for sure but today felt the need to tell her sitter I was not to bright in school and couldn't spell cat. Of course the sitter not knowing what to say just looked at me. I said honey I have always been the youngest and the dumbest yet I ran her company for seventeen years and now a very large property in social services for fourteen plus. Sometimes I think the dementia just allows what they really think about you come out without the filter. I tell myself that or I would think of her as Joan Crawford and I would like to think better of her when she is gone. I agree 100% that caregivers should not judge one another. We are all in the same boat but on different waters. This should be for support, venting and advice not judgement.

I just love this forum. It has helped me so much when I get frustrated at what I think are small and petty things with my now, live-in Mother. I love my Mom. It was my decision to have her live with me, rather than go to an assisted living.. I don't mind it, but, without a doubt, there are moments of frustration. I have gained so much valuable information, and support, just by reading about other situations. So much insight. Thanks to all who submit valuable bits of information and support.

We are also in the ranks of the caregivers dealing with this issue. My mother in law will not do anything for us. She pulls the feeble card when we ask ask her to walk around the house with her walker or to just walk to her bedside commode. She's gotten to the point where she will use her Depends rather than get up and walk the few steps. If we coax her to go she won't do anything. If a nurse, OT or PT comes she performs for them. She'll sing songs, carry on conversations and seem like her normal self. When they leave she's back to weak and feeble and gets nasty if we call her on it. The OT is the only one who's gotten the brunt of her negativity and believes us because she sees she's not as weak as she claims she is and MIL gets angry. It's so frustrating because we'll describe this to others and they go in to her and she makes us look crazy because she's so alert and cooperative. Family also thinks we're making this stuff up. They don't get to go through the uncooperative days and sundowning and the nights where she lays in her bed calling out over and over and nothing will appease her. It seems like every time she has a good day or two it is followed by a week of bad ones. Trying to rationalize it doesn't work. Trying to prevent what's coming doesn't work. We just have to deal with each day as it comes and work with what we get. I'd never heard the term "showtiming" but it is so appropriate for this situation. I learn so much reading this forum :-)

The 36 Hour Day.... what a book. When husband first diagnosed, a co-worker gave it to me, her father had alzheimer. Was hard for me to read, I cried so much, took a while to get thru it. But a great book. When I mentioned it to doctor, or someone familiar with Alzheimer, they were so surprised I knew about it.

I will be certain to get this book. Thanks!!

With my mother, it's not so much a matter of who she is with---although she is grumpier and more critical with her offspring and sweet as pie with outsiders. It's when we try to get her to open up about anything that she perceives is threatening or arouses guilt that brings on the anger and/or amnesia. She made a monstrous mess of her finances, which one of my brothers discovered by a fluke. Although we were stuck handling the bankruptcy she would never reveal a single thing about what happened to half a million dollars, acting as if she had no idea what we were talking about. She has always been a control freak, even with my father when he was alive, and would allow no one to know about her personal business, much less to advise her. My brothers and I had to suppress the urge to say, "Fine, then YOU meet with the lawyer and take care of the whole procedure on your own!"

I waffle between love and a feeling of responsibility for Mom and the disgust and vexation I feel when I think of how all that money could not only have given her a comfortable old age with expert care, but also helped her grandchildren and great grandchildren who are struggling with problems such as unemployment, school loans, Lyme syndrome, kids needing orthodontia, etc. Refusing to entrust anything to me, but happy to accept my chauffeuring her around and doing the grunt work only adds insult to injury. Well, I have to rise above that, accept that her mental condition is likely only going to worsen, and love her as the mother who birthed me and gave her all when once upon a time she was in her right mind.

Not sure if this is applicable, but one of the "things" I noticed most with grams is the need to not "air her dirty laundry in public." She wants the attention, is upset when she does not get it, and is mean to me as if it is my fault. But when her friends are here or her sons, others in general, she is on her best behavior. Unless she is tired, then she refuses to speak to anyone and tells them she is going to sleep. I do not understand it myself. Wish she behaved as well with me. Only time she does is when she really needs me.

Not sure anyone has a definitive answer. Perhaps it is her way of getting the attention she feels she is lacking from her family?

My mother was also rather difficult to deal with when she was alive. There were issues about possessiveness toward my Dad, her husband. She also believed she should be doing all his care because that is what a wife contracted to do in the marriage vows. So she was either feeling bad because she couldn't, or out of control when I did things. She also grew up in a family where the eldest daughter (her) was expected to do the majority of care, and expected the same of me (the eldest) in caring for her. It did not happen all the time, but most of the time. And these were attitudes that were not likely to change.

I suggest you get a care giver, "for yourself" to watch over the home while you are away. Any help you can get will help you. Dish washing, clothing washing, bed making, etc. Also get several of the full length incontinence pads for her bed and a waterproof mattress pad (the felt kind better. I had the quilted bubble full of water in the washer). Put depends and pads in her bathroom so she can easily change the pad. The Depends is backup.

She also sounds bored. Maybe there is a senior center with activities she can participate in.

Good Luck.

I hold my MIL's durable POA as well as her medical POA. When she started showtiming it was pretty obvious what she was doing although I did not at first know there was a name for it. When the ALF personel gave it a name it became even more clear what she was doing. Whenever we go to the doctor I usually do one of two things....
1) I give the nurse a list of things that are really going on so mom can't flash and dash her way around the questions the doctor asks
2) I ask to speak to the doctor outside of the room to tell him/her the truth about moms situation
Because all the doctors mom sees are aware of her dementia and what it can do to her they speak with me about her. It makes it easier on all of us. Mom is aware I talk to them and that it is about her health/condition. By being to speak without her present there is no uncomfortable position for either of us to be in.
I'm sure she had no idea she was doing any of it.

Hi to everyone. It's been quite awhile since I've participated in discussions because things have been so different in my world. As for my Mom, when I first started with the group I was struggling with moving her to an AL community because her doctor said she needed 24/7 supervision, and the at home caregiver was far to expensive to have all the time. My brother was against moving her because he thought it would use up all her money (Greedy SOB). I finally got him to see that it was costing more to keep up her home, taxes, etc. and pay caregivers, so we finally moved her into a wonderful place. She fought it at first but actually adjusted quite quickly in spite of her terrible behaviors before the actual move. She participated in activities and made friends, and her old friends would come to visit regularly, come to play cards, and take her out for a meal or a movie. She was really pretty good with them and like I've been reading here, she was "showtiming". She did the same thing when my brother came to visit. She's been in the AL now for nearly a year and a half, and up until about 2 months ago things were overall pretty good. The ability to "showtime" eventual starts to get harder for the Alz/Dem. patient until they eventually can't "fake it" anymore. That's what started happening with Mom about 6 months ago. As I said during the past couple months there has been a huge change. She now rarely leaves her room except to go to meals, and she tries to get them to bring her a tray in her room at least several times a week. She won't participate in activities anymore, and has started having a terrible time even carrying on a simple conversation. She will ask the same couple questions, how are you? what have you been doing? how are the kids? etc. over and over again. Most of the time we talk "to" her and not "with" her. She now is having more difficulty with her bathing and dressing because she'll start a task then can't remember if she's starting something or finishing it. She'll look at a magazine for hours but doesn't really read anything. Whats so sad it that she's fading away very quickly now, and has stopped the arguing and being as difficult as she was there for awhile. It's like she's resolved herself to the fact that she's lost and doesn't know how to find her way back.

For those of you that have taken on the challenge of actually caring for your loved on in your home, my hat is off to you and I hold you in my heart. Since caring for Mom at home wasn't an option in our case, and she fortunately is able to afford the care she receives, I can only imagine the pain and frustration you others go through. I know how hard it is for me to run back and forth to her facility and try to be there as often as I can, and still not have to provide the constant hands on piece of the puzzle. Bless you all for everything you do and sacrifice for someone you love. God Speed....

Wow--I had never heard of "showtiming" reading this I felt that someone had been following my mother around for the last 30 years! She will not let anyone but my brother in to dr visits with her....she is so flirty and inappropriate with drs I am embarrassed for her, but she puts on a dang good show! They don't fall for it, but at least now I know why she's doing this! She's incredibly affectionate with the most random people (she used to run out to the mailbox and great the mailman with Hershey's kisses and demand her give her a hug in return.) Mortifying. If she missed him, she'd pout all day. She hugs the bakery lady, the butcher, the pharmacist...but none of her children or grandchildren. Kind of an off the side comment: I went to pick up a prescription for her, the Pharmacist asked me if she were widowed or divorced..I was astounded...she's been a widow for 10 years and never said a word to this person about my father. What does she think a 35 yo guy is looking for a GF of about 85 years of age? How weird not to mention my father in her interractions with this man after almost 10 years he's known her. Now it makes sense! (Didn't mean to hijack this thread..it suddenly just made so much so clear to me!