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I got a call from my 85 year old Mom who said she was in the Hospital and had gotten sick from macaroni and cheese along with 10 other people from her Senior Home. I reached the head Nurse at her facility and she was IN HER ROOM!!!! Later that day she called and was herself then this morning she was sobbing uncontrollably again. They are testing her and her doctor is aware. She was diagnosed with Dementia 3 years ago yet just this past few weeks she seems to be fluctuating wildly with her emotions. No bladder infection - they are checking other things. Its hard to sort the 'aware manipulative' things she says for sympathy and attention versus what is really a valid concern - however - she has definitely gotten more immediately repetitive (up to 3 times asking the same thing) in a 7 minute phone call. The Nurse said, 'this is normal' meaning for this dementia - she said people say NO this is not my mother however I believe she was trying to tell me this IS the path of this brain disease. I took care of her my whole life since my father died and now I can't and shouldn't - I can do more harm than good because she will comply with 'strangers' and just show her worst unhappy side with me - plus - she tries to 'keep her pride position' with me - she doesn't want to seem wrong or needy with me so doesn't relax when I am visiting and she doesn't want me to see her upset also. It's truly a messy, disturbing, erratic, confusing, sadder than sad disease or aging. It is probably best we don't know about all of this - even though I've been trying to read everything I can now - I'm gradually seeing that unawareness and lack of knowledge of what 'could' be was probably a blessing up until now. I am going to live and enjoy the 'good' moments which I feel will show up again and just pray for courage and strength for the road yet to come.

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kamkim50: what is PBA? - it almost sounds like my mother. She feels terrible in the morning. When she answers the phone she sounds like she is dying. She moans and groans and makes a big act of it. Later in the morning she is fine. The doctor said she is very healthy.
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Maybe she has PBA (PseudoBulbar Affect). It can accompany dementia.
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Your mom can't help that she changes or flips from sobbing to her normal self. I have early dementia and there are times I am clear, which is most of the time, but a couple times a day I will cry over nothing in particular. There are times I don't know my own name or the day, date, or year. There are times I don't know the city I live in, which is a major reason I can't drive anymore.
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Does ur Mom dial the phone or a caregiver. One of the first things we saw was Mom having trouble with the phone and remote controll. She can turn the TV on and off but can't change channells. The phone she forgot what buttons to push to answer. When she gets a call and I hand her the phone I have to remind he not to push anything or she will disconnect the caller.
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Oh, my gosh. I'm so sorry. This is the same situation as with my mom. One day she is convinced "something is going on" in the memory care unit where she lives, and the next day it's a whole other story. She is not very nice to me anymore - I saw her one day before she saw me, and she was chatting happily with the other residents. The minute she saw me her face changed, and she became nasty. After several times of dealing with that I decided I would go to see her weekly and stay in touch with the home by phone. Sometimes you just have to draw the line to protect yourself. And remember your mom is gone, and the person you go to see is another person at the mercy of her dementia. It really is a sad state of affairs.
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This is a typical pattern of elders. Expect them to be very emotional, e.g. "they're like a 2 y.o. with a cut on their finger," because essentially they revert to child-like behaviour.
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cmor: Yes this is normal, at least judging by my mother's behavior which is so similar to yours. She is in AL because her dementia is so bad she gets confused and she can't work her appliances any more, can't cook, forgets to eat, etc. But she is PROUD! She refuses help, gets herself dressed, to the bathroom, etc. She dumps on me and my sister and puts on "nice lady" act for the staff. Maybe your mother doesn't feel well in the morning? Mine doesn't and she has honed her victim act to perfection (she thinks). Every morning when we call her, she knows its us and she answers the phone in a voice that sounds like she is dying! Groans, ragged, gasping, etc. then, all of a sudden she forgest she is supposed to be on death's door and starts talking normally, especially if we distract her. She was worse a few months ago until the doc put her on an antidepressant. She's 50% better than she was. Most of Mom's negativity and misery is from depression as are a lot of older seniors. Maybe your mother would be helped with med?
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Let the guilt go. You'll grind yourself into the dirt with that.

You MUST remember their brain is broken. Your job is to say whatever it takes to keep them calm. You are going to have to be creative and it takes practice.

I had to have the phone removed from my mom's room last year. She was calling me and all kinds of other people at all hours with profane names and demands. It was horrible. Somebody wrote my cell# on a whiteboard in her room and she started calling me at work with crazy stuff. Didn't care that I was at work and wouldn't get off the phone. I had to hang up on her several times, but she never remembered. I just stopped answering that number on my cell and at home. If it was a nurse or emergency, they'll leave a message.

This is part of the progression with dementia and you have to keep boundaries in place or you are in for a really loopy roller coaster ride.
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I feel like it was me who wrote this! You described my situation to a t! I see no relief in site. Just guilt, heartache, stress and more guilt as a daughter.
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cmor1954, another idea, to get off the phone...tell her a little white lie...say, "Gee Mom, how 'bout I call the ....staff....or whoever, supervisor, person assigned to her today etc.... and let them know how you are feeling and I'll call back later and tell you what they said. You don't have to make the call OR call her back...or call her back to 'check in' just as you know she would be going to an activity or to her meal time, so you don't have to be on the phone long and just have a 'sweet' reassure conversation where you say you love her and was thinking about her..... I do that with my Mom too.....and she never asks anymore if I made that call I promised to make, because she cannot remember for long enough...and sometimes, the 'check in' sweet call is reassuring by itself...but I call just as she's going to eat, or watch the news and say, "What are you doing? I am just checking in." She will say she's just going to do whatever, so I say I don't want to hold her up, but wanted to check in and let her know I love her and am thinking about her...etc.... That also works sometimes....not always, but if one thing doesn't work, try the next thing!
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Thanks, Joannes, you have given me a new line to try with my mom. She is also a chronic complainer, calling me multiple times some days to complain about things that are not true. She will say "they don't have any activities here", when I know that they take her to two or more activities each day. Then she will get on a loop where she has a "terrible cold", and sounds pitiful. If I call the nurses desk at her AL, they tell me that she is fine, just got back from an activity and hasn't said anything about a cold. Making suggestions or trying to correct something she says does not work. She will just argue with me. Some days, I don't answer my phone after the first call or two, and she forgets that she tried to call me again. I am going to try the "I can't help you with that so I will talk to you later" and hope that satisfies her.
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My Mom is still at home with caregivers for 6 hrs/day. My Dad is placed in a facility for 2.5 years now. Both have dementias and I've dealt with this mixed up emotions for 3+ years now. The idea of 'breaking the loop' when conversation is stuck on the same thing, works well for me. Also, NOT ARGUING or correcting the thoughts is also very important. I've learned that Mom gets this whining, crying confusion when alone for too long, and in the evening. She also breaks into this whenever her daily routine is upset for any kind of small issue....even a phone call too early in the morning will set her off. I try to communicate with sympathy, but NOT take on the issues that she tries to 'give' to me to fix, but are not fixable. I will say, " Gee Mom, I am so sorry that is happening...or that happened and I sure wish there was something that could fix that....and then try diversion: 'How did you sleep last night?' " What are you going to eat for breakfast?" " What time will you plan to go visit Dad?"....change the subject....break the loop as stated above.... Another observation of mine, especially as it relates to my Dad in his facility, is that when this happens there....to me it's a sign the person has been alone too much and needs that loop broken, or diversion provided, by staff communicating with them for awhile...even something simply like, " Lets walk over here and get you a treat, or a drink" Just changing their location sometimes seems to help...combined with a few minutes of conversation to break up whatever was going on in the brain. I can only imagine that sitting alone, 'listening' to all that brain confusion would have to be terrible to deal with, when you have no way of controlling it by yourself. Just think what goes through your own brain thoughts when you sit silently by yourself??? " I need to do this next, what about those bills, what should we have for dinner, oh, I have to make a doctor's app't....and it goes on and on and on .....but we understand and can filter and talk back to ourselves, make a list, figure out what to do first and start the action. Just starting action stops the thoughts pretty much. But with dementia, all that thinking, analyzing ability is gone...so they just get nervous, agitated and do not know how to deal with it by themselves. They need someone else to turn off all that stuff using diversion and redirection. I will say to my Dad, " Hey, lets go outside for a walk. There was a flower out there that I don't know what it is. Maybe you can help me figure it out?" Since he was always the 'teacher', the 'go-to person' and the one in charge, he immediately responds, even though once we get outdoors, he forgets the 'reason' for the walk....or if I do talk about a flower, he no longer does have the answer....but no longer cares that he doesn't know either. He just says, " Well I wouldn't know about that..." or " Well you know, my memory just isn't what it used to be....and I just can't remember that." but the process of walking around and talking about the weather, or the view of the mountains or noticing a bird or rabbit....well, that's all enjoyable and we get back on track fast. With Mom, when she is alone, it's harder to do by phone, because she is naturally a negative person who doesn't enjoy life and always finds what is wrong instead of what is right. IF I can get her to say she enjoyed something, it will always be qualified with...." YES....BUT......." and telling me why it was not quite as right as it should have been. So I just do not argue, or correct. I make suggestions about what might help her, but in general, all I hear is why she cannot possible do anything suggested. So I say I am sorry things cannot be perfect for her and since I really cannot help, I'll call her back later.... I can watch her on a video camera and see that after complaining, she generally hangs up and goes about her business as though she's not upset...at least not to the extent that verbalizes....so figure it's just her personality and I'm not going to change it. She hates the caregivers being there....yet I can see her laughing with them, communicating, playing cards and getting pampered in ways that she loves. But she'll never tell me any of that when I ask about her day! The bad is in the front of her brain....not the good. I am not responsible for that, no matter the guilt trips she tries to put on me!
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I meant, I want him to die at home NOT in a facility.
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IS your mom on anti-depressant medications? I READ AND READ, but every patient must be different. I am in the same boat. I can't seem to get straight answers out of any doctor he sees. I guess they know less than we think these Doctors know. I cannot put him in a IL home just yet. I need him as much as he needs me. I want him to die at home, but in the facility. BUT, I truly understand all of you who have placed your loved one in a facility. This is the hardest job I have ever had. My partner always acts like NOTHING is wrong in front of others and with me he is honest. When I get him in front of a doctor, I have a feeling they are thinking...What did she bring him in for? Then we get home and he is struggling again. He sleeps so much. He has anti-depressant meds. Without them, he COULD NOT live at home as he becomes extremely angry.
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Dear cmor - My mom didn't have the wild mood swings you have indicated, but she would 'play me' for attention or when she wanted me to make an extra trip to the facility to see her. Dragonbait (above) made some good observations. As my mother's dementia worsened, she started to withdraw from communication. Some times she would just sit there rubbing her forehead. When I asked if she had a headache, she would say 'no - I'm confused'.

She would ask the same questions over and over again. Usually it was when she didn't like the answer. But most of the time, she tried to cooperate as best she could. That's what made things more sad. Watching her struggle.

You sound like you're doing all the right things. I know, that doesn't make it easier. Dementia affects everyone a little differently depending on the basic personality traits of the person, but there is one common thread for all; it's scary for everyone. Take care and keep in touch.
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My mom keeps calling and asking if we are coming over.......she needs our help to move her furniture to her mom's house. That hasn't been an option since the 1970's.......we seem to be in a routine. She keeps calling and I keep patiently explaining the situation, again and again. It's painful. I have checked with her caregivers and they insist that she's very pleasant with them. I have determined that it's like a recording. She can't quit playing the same painful recording with us. So we change the "loop". It's as if she has a conversation recording with me and the only way to "break" the loop is take her somewhere or and change the setting. We go for a drive, walk down the hall or take her for ice cream and it "breaks the loop". Our surroundings change but the concerns don't go away. She's off to another worry and the next concern. Her worries never go away completely but the caregivers tell us she's very cooperative with them. I have to "detach" and know that I have done the loving thing. She is safe in her "new home" and explain to her patiently that her mom's house isn't an option. Her "loops" or tapes are constantly changing and the hard part is forgetting the loops yourself. You have your memories and all you can do is find "pleasant tapes" and keep playing them with her. I took a puzzle over to her and it was a great experience when she finished it. The next puzzle was much bigger and it upset her. I put it away. I take her small, easy to accomplish things and we create pleasant new "tapes" or experiences. You have a thank you card she can write? Find a drawer to clean out.....just little things you can do together to make a new experience that you share and a positive tape to keep her happy. Play a hand of "go fish". Keep it simple....my kids say Nana is stupid. I just tell them.....she's becoming like you were and now we have to care of her.
Goodluck.
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There are two things that stand out for me here: She is compliant with the care givers in the senior home, and she is playing a role with you. My suggestion to you is that you consider that you have already lost the mother you thought you had. Grieve as you need to do, but redefine your role in regard to her. Your job, as I see it, is to work with her doctor and the staff of the senior home to ensure she is kept safe and her needs are taken care of. She seems to want something else from you, perhaps beyond mere sympathy such as drawing you into her disintegrating world. A formulaic response to her complaints and stories may be the best you can do and your best is good enough. You could say something along the lines of, "I know things are very difficult for you right now." Check the facts and go from there, and let go of any expectation of making sense of what's going on with her. Be open to moments when your real mom shines through, but don't go looking for them.
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I am going through this same situation with my mom. It is so hard to watch the deterioration. My mom will have a few days where everything makes sense and she seems fine. Then there are several days in a row where she is just so confused and mixes her lives happenings with current times. At first I did the "correction" approach thinking I could bring her back to the present. That just plain does not work. I am now learning to just go along with her, I will help her out with certain thoughts when she knows she is stymied but after all is said and done I just let her mind win. I have learned to trust and rely on her caregivers in her nursing home. They are a wonderful,caring, patient group of people who are very good at their profession. They have been very helpful and reassure us that we are doing the right thing for mom.
Good luck to you and realize that you cannot do it on your own.
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Hi Daybyday88, because of my parents "Jekyll and Hyde" behavior our visiting nurse told me that they passed Protective Services evaluation. They are both 90 years old, demented and don't know how to cook anymore and not taking care of the property anymore. Dad does drive short distances but gets lost coming home. Wits end!!
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I think this is normal behavior for the illness only because I live it on a day to day basis w/ my MIL. She has Jekyll and Hyde behavior or "chocolate box" behavior (you never know what you're going to get) more on a daily basis though, than an hourly one. She also reacts differently to those outside of the household environment. Such as going to the doctor and all of the sudden she has no ailments and acts as though she is fine and has all of her wits about herself. This is the MOST perplexing thing to me out of all of the strange behavior that occurs. Also, asking something over and over, possibly as many as 7 or 8 times, seems to be a normal thing in our home. Although my MIL had suffered a stroke many years back and memory issues started from that point with increasing repetition.

I am hoping that your mom was a somewhat happy person before as I personally feel that those who were unhappy or depressed prior to getting this disease show a lot more bad (or negative) tendencies as opposed to those that really had no previous issues. I pray that you have lots of "good" moments.
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Your Mom is in her own little world. My Mom gets TV and real life confused. She also is more emotional. This is a progression of the disease.
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cmor, this has to be so hard on you emotionally! Thank goodness she is in the right kind of care place, and you seem to trust them and have a good dialogue with them. It sounds like there's nothing for you to change except keep it up and watch over their care of her, and renew your strength by taking care of yourself. When she calls upset, assure her that you understand and you're going to make it right, then talk (or visit) the care staff. You're doing so well for her. God bless.
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Oh goodness. I don't even know what to say. I have never heard of this behavior before. Like you, I try to read everything I can find so that I'll be prepared if it looks like that's the path mom's dementia is going to take. People who do caregiving for a living are angels in my opinion.

I hope they figure out what's going on with your mom.
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