When I took my loved one to doc appts, I'd type a one page sheet "This is what has happened or she's doing since you saw her last...and then add my questions. He said that was the best help heever got and could address the issues in "general" conversation mode, rather than demeaning them. It answered most of my questions and how to deal with it. Giving up the drivers license was a real struggle. Ex. he said Ms. X I have ALL my patients evaluated for their driving and cognitive skills. Do you consent? She said yes to please him. After the test came back FAILED, he read it to her, told her she needed to go immediately and turn it in. We did, but the anger lasted a long time. She also had the psychotherapy test too and FAILED. So we were told to take all precautions for her safety. (alert system, stairs...) He said that letter he worked from made him see "past the acting" and really helped him assess her better. I gave it to the check-in person to give the doc before we were called in (she was sitting in the waiting room, being watched by me and never knew what was going on). YES, a caregiver has to hide what they do to reduce anger, prevent anxiety, to give a better quality of life. AD totally destroys them. Why make it worse?
So, thankful for people like you, who share things. It really helped me to read these notes, and made me feel not quite as bad about this bad journey. This dreaded disease, is quite a journey. Not a good one either.. My mom is 90 yrs old, retired nurse .. Has Dementia and probably had it about 2 yrs. She was started on treatments for it last January 2016. I moved her in with me, Jan 2016..as I am a only child. Its me & my husband to take care of her.. He retired this past Dec. to help me with her.. She is hateful to him and picks, to get arguing going.. He does nothing but say one word and she picks .. Then, the past few weeks has gone into rages.. Hollaring, or cussing.. To Me & To Him.. He has always been so good to help me with her.. She broke a hip and cripple from that.. Had her over our house alot staying, so we could get her back on her feet.. He was really good to her.. She is not on me as much as him but she does argue with me, if I dont do just as she wants me too.. Lately, has cussed me a few times badly. She is a big handful... She eats pretty good but picky about what she eats lately.. We take her out to eat when we can, as her attitude is bad sometimes, we cant take her.. So we dont go.. Her Dr. visits... She goes into be nice mode, and tries to talk like nothing wrong.. My Dr. sees thru that and does the tests of reading stories and questions for her, the counting, and a couple more things.. She never passes them and never knows the date or year... If things goes her way, she is alittle better than when she dont get her way... Thats when she lately has a cussing fit and rages.. The Dr. increased her meds, so hopefully, that will help.. I have thought of a nursing home, but at this time, not sure what to do.. My health is not good either. .I have Rhemotoid Arthritis and lately also, Dr. cant get my bloodpressure to calm itself.. I am way high, bottom was to low... A heck of a mess and then she usually pulls a good stunt about when I am f eeling bad.. I try to just lay down in my room, for a break.. She goes to her room, lays down usually.. I just seem to have to have a break lately.. To much stress on me, I think.. I know I cant help it but pray things gets better, knowing its going to be worse.. I think my next step is to find someone to come in.. maybe a day or two a week to just sit with her.. Her sister will take her for like half day along, but she has had heart surgery and I dont like to do that.. To hard on her.. She sits, feels sorry for herself, acts lonely, miserable at times.. Bless each of you as you take care of your loved ones Prayers!!
My mom has done this for years! Lol. Now it's come almost to the point where she can't pull it off but on a good day, you would never know she has dementia if visiting for a few hours. I was always amazed by how nasty she could get with me and how in the next second she could be sweet with someone else. The first 4 years I was always frustrated, exhausted stressed or angry. One thing that helped me BIG time was realizing most of the things that were upsetting were symptoms of her illness. She wasn't trying to be mean or irritating and inconsiderate. It was just her illness mostly with added frustration and confusion and depression thrown in for hood measure! Lol Thank God things are better now but the first 5 years were really rough.
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When I have written a note for the doctor he says, "well your daughter says this about you" grrr! I even wrote on the bottom don't tell him that I'm telling you all these things
Bella, I wonder if my mother's doctor would do what your doctor did.
My mother showtimes -- for my brothers on the phone, for the doctor, for an assisted living consultant. I am so thankful that I found out about the term from this site! To counteract the showtiming I email my brothers detailed notes about my mother (noting what I do and how much time it takes, because she thinks I don't do much at all). At the most recent doctor's appt., she didn't want to tell the dr. about her "panic attack" where she was gripping the rollator for hours until she could finally lower herself to the floor and crawl to the bedroom to reach the phone to call me. Dh and I had to lift her up. And she called an assisted living consultant who ended up telling her that she didn't "sound like I need to move anywhere because I'm doing so well!" (She called the consultant, because she was pressured to consider AL after her "panic attack" when she couldn't get up off the floor.)
And I'm now forbidden from going in to the dr. with her, because she doesn't like that the dr. did some talking to me and not to her! (Dr. said she didn't like to prescribe anti-anxiety meds, asked if I thought my mother should be living alone, and said she needs "social support" which meant someone needs to check in with her daily to see what she needs.) So at the next appt. in May I will just sit in the waiting room. I'm not even sure my mother will hear everything the dr. is saying. But in the eyes of the law my mother is fully competent...
It is necessary to go beyond just have a friendly chat.
When A lady from the county social service agency came to the house with the family lawyer, Dad was handed the check book and the gas bill...asked him to write the check and enter it into the register.....well, then the thruth was out. Of course, dad got mad and made a show of.."how dare you treat me like a child" stuff...but he didn't fool the lawyer or the lady from the local social service agency.
The POA which I held (alternate with lawyer) was held valid, and effective.
CTTN55, maybe ask doc in advance if he will comply with your request of confidentiality regarding the condition of parent but I suppose doctors have to watch out for kids that don't have their parents best interest in mind ? This sucks
I have tried for years to help my dad with his heart condition, uncontrolled diabetes etc., he would listen but refused to do what he needed to keep himself healthy
Bella7, I suppose I could ask the dr. in advance if she would comply with a confidentiality request. My mother has signed a HIPAA release for me and my three brothers.
A neurologist suggested anti-anxiety meds for my mother. My mother nixed the idea, and now my mother's PCP (an internist) also doesn't like the idea, either. Her solution? A daily check-in with my mother to see what she "needs." Well, I'm not doing that, because a daily check-in to see what she needs will become endless tasks for me to do. It would be an invitation to her to get me to do more things for her.
She does a lot of (to me, unnecessary) fretting and fussing because of her OCD. I'm not going to enable her any further than I already am.
I think the dr. (grew up and went to medical school in Nepal) is probably from a culture where the daughters take care of the elderly parents. I think she *might* be assuming that I will do that. Well, I won't. I am already reluctantly having to drive her places (I put boundaries on that) and take care of things occasionally for her.
I took her to look at an AL place last month. She was full of negativity about it. My brothers want her in AL (because they think they will hear less from me about her, possibly?). They can be the ones to push it with her. If I am not the one to push it and she does it, then *I* won't be the one to blame if she doesn't like it.
In case you can't guess it, I don't have a very good relationship with my mother. She's an obsessive, over-controlling person who is ALWAYS RIGHT. She makes me feel like garbage, and I'm anxious after spending just a bit of time with her. I resent that my golden brothers are states away and do nothing. She showtimes with them, because she has a tracphone and she pays for minutes. I'm the local no-charge phone call, so I get subjected to (sometimes daily) phone calls from her. When she said recently after the 5th call in a few days that she's not asking me to DO anything, I told her that all the phone calls were taking up my time. She got huffy and hung up. Maybe that will stick with her, and she'll stop the calls. Time on the phone with her is pointless, because she usually doesn't follow my advice, anyway. I'm just the stupid daughter.
You are NOT stupid!! But I understand you saying that because I have called myself all kinds of names... i'm learning to take care of myself because my mental and physical was going downhill fast...take care of yourself
MarciWriter, you just described my Mom to a T! She can fool the doctors unless they know! I told her doctor that she will always give him answers, but they won't be the RIGHT answers! She stopped letting me go into the doctor's office with her because she said I answer the questions for her....and LIE! She even told her Neuroligist that she would never be back in her office and for her to stay out of her business! It has been over a year since she was diagnosed with Dementia and she is still in denial! Therefore, she just doesn't understand why her kids are punishing her by making her stay at the AL! I do have two brothers who are very active in her care! One of us visits her every day! But she forgets anyone came to see her and says no one has been by for several days! LUCKYOGS...I just hope you can find a small amount of comfort seeing you are not alone!
Tammy, I am not a professional by any means. I suggest keep reading this site, and ask questions. I'm fairly new here but have learned sooo much in a short time just reading others problems and caring responses/answers/solutions/encouragement etc...
I can tell you, it does get better when you educate yourself (on a "right on site") on this disease and how to cope...and I am still learning and will be for a long time.
My husband always tells me, you gotta dig deep... meaning for me, I wanted to learn how to cope and stay sane... I also weak and needed extra help...to find the courage to do what I could do for my parents and knowing my limits...I would pray every day for God's guidance...most of the time that would work but I needed a "helping hand", which is what happened when I found this site. I am amazed how many caring people there are here! Be strong, even baby steps are good 😉 And dig deep Tammy.
MarciWriter, I was experiencing those things with my mom too, so the next time I took her to the dr, I wrote the dr a letter and gave it to the receptionist for the dr to read prior to her appt, describing her behavior. Dr sent her to a neurologist for her 'memory' and the neuro was able to understand and adjust meds, etc. Mom would go in and say everything was fine, but I had already told the dr what was going on (in tears, I might add). Dr then asked her about it, and she minimized the accusations. I told her how hurtful they were. Long story short, Dr put her on Seroquel and like magic, I had my sweet mom back. I was so amazed. Hope you find some solutions quick. I understand how difficult it is
I'm starting to not feel so alone now my mom is all of the above. I'm getting so tired of getting beat up. No one see what I do. In front of drs and friends WOW !! Can she put it on and I'm the crazy one. But just her and I. I'm the enemy !! She is testing right now for independent living skills and driving mom is 86 which is not the issue. It's her memory sometimes she called me if you m not with her to say there's something wrong with the car !! The issue is when she puts it into gear she doesn't keep her foot on the break so the car rolls. When I tried to show her why she screams at me that she never had to do that before !!' That's just one thing. From everyone stealing from her. But off the wall things. Got her a cleaning lady someone I knew for years. Well she she told me that you stole two Christmas cups from her cabinet nothing of value. And my dad passed in 2015. She will not clean his Clothes out of the The closest or him drawers she also stole 3 pair of his underwear 🙄 She swears my brother who also passed. That last week he stole a super bowl and her can opener and her mothers scale and if he needed money he should of told her. My grandmother scale was trashed over 30 yrs ago. I opened her cabinet and took out the can opener. And have no idea what suger bowl she's taking about I showed her the one we always use. A few times she thought someone stole it. But I could it in the bedroom closet. Lol !!! Don't know what's up with the sugar bowl Thank you for letting me share. Sometimes I feel I'm losing my mind. I'm new to this site. And what a relief to hear what everyone is sharing.
I believe you are referring to sundowning...a dementia condition in which a person can appear rational and normal to someone unfamiliar with their condition but they may well be operating on irrational perspectives.
While it is always uplifting to read a cute anecdote as a caregiver, I would caution you to be very careful of this condition as it has gotten me arrested.
I live in a small town with a law enforcement group that has little to do on a good day but look for issues. My father has dementia and became upset when I tried to make him help me clean and slightly move a fridge that a repairman was coming to work on. My father, unbeknownst to me, went down to see the local magistrate and told then he was being abused at home and that I had assaulted him.
My father and I may have words from time to time, but I would never assault or abuse him. But his performance in front of the magistrate was convincing enough because without a shred of evidence...the police showed up at my door with an arrest warrant.
After 2 months of court dates I was able to get the case dismissed after presenting letters from doctors diagnosing his sundowning and assuring the law they never had seen any evidence of abuse and we're certain he was quite safe at home.
I hope this never happens to you or anyone else, but cute stories aside, this can be a very dangerous condition and it would be wise to consult your doctors to shore up their help should you ever need it.
I've noticed now that Mom's dementia has progressed quite a bit that on the days she forgets I'm her daughter she showtimes for ME. It is a rather nice break from how awfully she usually treats me, because she's on her best behavior when she thinks she's working for me or I'm a family friend! HAHA! Got to take the positive where you can find it!
YES! This is why my mother had such a difficult time getting POA to put her Aunt into a home and close her existing apartment. The apartment couldn't be closed without it. She fooled every doctor that came around to check on her. Finally a dear friend of my mother (the friend was head nurse at hospital) called in some favors and they got the right doctor to come out. Aunt Ruth could fool anyone for 5 minutes - but ask the right questions and she was finally truly diagnosed.
For about two years my husband fooled our grown kids. They would come for Sunday dinner he would be quiet and calm . Then when they left he would be mean with me.His Dr.has him on a pill for depression and a sedative once a day.He also takes 1/2 Xanax after lunch.This helps some but now he has sundowners. I pray a lot for strength.I am his caregiver 24 / 7.It is very hard sometimes. Rene.
My husband did this with the doctor for quite some time even though I came to the appointment with him. I contacted the doc via email and was able to correct the blatant lies my husband told him. Since then, he is receiving very good and appropriate care. Don has always been a show-off and flirts with the checkers in the grocery store every chance he gets. It's embarrassing and even hurts me a little since he never flirts with me. Now that he has dementia, I say don't anything. I let him flirt and be happy.
Darcy123: read up on statin meds for cholesterol--one of the known side effects is memory problems. I noticed it when they had me on it some years ago; got off of it and noticed my brain fog clearing in about 2 weeks, although I think I still have some residual effects. (And research indicates that older women do better on higher cholesterol.)
I'm surprised more people haven't tried videotaping their showtiming LO--that might be more effective than describing the situations. Obviously it would need a setup that is very unnoticeable, but there are more things available all the time. The MIL of a friend had just been in a very nice AL facility when her long-term care insurance sent someone to evaluate her--and she told them that of course she could cook for herself and bathe herself, and they wouldn't listen to the DIL who knew very well she couldn't. Too many people are not aware of how dementia can actually work.
Just like kids! My mom told me when she went to a teacher's conference for my sister, the teacher said something about "these quiet children". My mom really thought she was talking about the wrong student! Now my mom is the one on her best behavior out and about and looking at me like I'm crazy if I tell the Dr or physical therapist that she can't even pull up her own pants.
Oh yes...for sure !!! Dad would do it repeatedly ; he didn't know that since I was taking care of both Dad and Mom I had to keep notes...which I did on the sly. So when Dad started to 'perform' at the dr appts, I would just dive right in and say " oh no, that's not true, Dad" and try to make it humorous because I always tried to keep his dignity (and right up to the very end, too !!!)...Mom has always tries to be 'cute' but again once I started to see it happen more and more (and where it would affect the medical care she should be receiving) I would speak up...but with Mom I'd have to be more firm and not give in to her denials...also, I would give notes to their drs and even give them the dates they would have had a medical problem so they knew I was really telling the truth and could give them both the medical care they actually needed...by me doing the notes, and speaking up at the dr appts the drs knew I could provide blood counts, pressures, weights, etc and certain behaviors that they could trust. It kept my Dad living an extra 5 yrs when his body finally just gave out and he was tired of having so many limitations...Mom has the Alzheimers and her drs will ask her questions but they follow my notes since I do the same for her...if you give dates with examples, and let the dr ask the patient questions, I guarantee you in a short timeframe the dr will believe you...everyone tries to maintain the patient's dignity and don't want to come out and directly call them a 'liar' but they have to be able to know who they can trust to give them the true medical conditions so they know how to accurately diagnosis and treat them. I know it's frustrating; believe me, I went thru it also until the drs started to see the discrepancies between my notes and what Dad/Mom were telling their drs. Just try to maintain calm (I know it's very hard ) and your notes and 'your 2 cents worth' go a long way with the drs....never lose your temper and just focus on the medical care of your loved one...Peace :)
MarciWriter, There are ways to get around going to the dr with your mother. For instance, when I took my mom to her dr, I wrote the dr a note and gave it to the receptionist to have the dr read before her appt. Then the dr gave me a knowing look to say she'd read it. She took time to address my mom's issues with her. Then she referred us to a neurologist who worked really well with me. We got her on the right meds and she's doing good right now. Hope you can get some things working for you as well.
use your smart phone to video some of this "behind the scenes behavior". I know my brother isn't seeing dads dementia because he only goes over there like 3 times a month MAYBE. Tuesday he finally saw it when he realized dad didn't know what time of year it was. but he will ask normal questions and seem just "quiet" to my brother ,, but to me I see the slip ups.
This dreaded disease, is quite a journey. Not a good one either..
My mom is 90 yrs old, retired nurse ..
Has Dementia and probably had it about 2 yrs.
She was started on treatments for it last January 2016.
I moved her in with me, Jan 2016..as I am a only child. Its me & my husband to take care of her.. He retired this past Dec. to help me with her..
She is hateful to him and picks, to get arguing going..
He does nothing but say one word and she picks ..
Then, the past few weeks has gone into rages.. Hollaring, or cussing.. To Me & To Him..
He has always been so good to help me with her.. She broke a hip and cripple from that.. Had her over our house alot staying, so we could get her back on her feet.. He was really good to her..
She is not on me as much as him but she does argue with me, if I dont do just as she wants me too..
Lately, has cussed me a few times badly.
She is a big handful... She eats pretty good but picky about what she eats lately..
We take her out to eat when we can, as her attitude is bad sometimes, we cant take her.. So we dont go..
Her Dr. visits... She goes into be nice mode, and tries to talk like nothing wrong.. My Dr. sees thru that and does the tests of reading stories and questions for her, the counting, and a couple more things..
She never passes them and never knows the date or year...
If things goes her way, she is alittle better than when she dont get her way...
Thats when she lately has a cussing fit and rages..
The Dr. increased her meds, so hopefully, that will help..
I have thought of a nursing home, but at this time, not sure what to do..
My health is not good either. .I have Rhemotoid Arthritis and lately also, Dr. cant get my bloodpressure to calm itself.. I am way high, bottom was to low... A heck of a mess and then she usually pulls a good stunt about when I am f eeling bad..
I try to just lay down in my room, for a break..
She goes to her room, lays down usually..
I just seem to have to have a break lately.. To much stress on me, I think..
I know I cant help it but pray things gets better, knowing its going to be worse..
I think my next step is to find someone to come in..
maybe a day or two a week to just sit with her..
Her sister will take her for like half day along, but she has had heart surgery and I dont like to do that..
To hard on her..
She sits, feels sorry for herself, acts lonely, miserable at times..
Bless each of you as you take care of your loved ones
Prayers!!
My mother showtimes -- for my brothers on the phone, for the doctor, for an assisted living consultant. I am so thankful that I found out about the term from this site! To counteract the showtiming I email my brothers detailed notes about my mother (noting what I do and how much time it takes, because she thinks I don't do much at all). At the most recent doctor's appt., she didn't want to tell the dr. about her "panic attack" where she was gripping the rollator for hours until she could finally lower herself to the floor and crawl to the bedroom to reach the phone to call me. Dh and I had to lift her up. And she called an assisted living consultant who ended up telling her that she didn't "sound like I need to move anywhere because I'm doing so well!" (She called the consultant, because she was pressured to consider AL after her "panic attack" when she couldn't get up off the floor.)
And I'm now forbidden from going in to the dr. with her, because she doesn't like that the dr. did some talking to me and not to her! (Dr. said she didn't like to prescribe anti-anxiety meds, asked if I thought my mother should be living alone, and said she needs "social support" which meant someone needs to check in with her daily to see what she needs.) So at the next appt. in May I will just sit in the waiting room. I'm not even sure my mother will hear everything the dr. is saying. But in the eyes of the law my mother is fully competent...
When A lady from the county social service agency came to the house with the family lawyer, Dad was handed the check book and the gas bill...asked him to write the check and enter it into the register.....well, then the thruth was out. Of course, dad got mad and made a show of.."how dare you treat me like a child" stuff...but he didn't fool the lawyer or the lady from the local social service agency.
The POA which I held (alternate with lawyer) was held valid, and effective.
A neurologist suggested anti-anxiety meds for my mother. My mother nixed the idea, and now my mother's PCP (an internist) also doesn't like the idea, either. Her solution? A daily check-in with my mother to see what she "needs." Well, I'm not doing that, because a daily check-in to see what she needs will become endless tasks for me to do. It would be an invitation to her to get me to do more things for her.
She does a lot of (to me, unnecessary) fretting and fussing because of her OCD. I'm not going to enable her any further than I already am.
I think the dr. (grew up and went to medical school in Nepal) is probably from a culture where the daughters take care of the elderly parents. I think she *might* be assuming that I will do that. Well, I won't. I am already reluctantly having to drive her places (I put boundaries on that) and take care of things occasionally for her.
I took her to look at an AL place last month. She was full of negativity about it. My brothers want her in AL (because they think they will hear less from me about her, possibly?). They can be the ones to push it with her. If I am not the one to push it and she does it, then *I* won't be the one to blame if she doesn't like it.
In case you can't guess it, I don't have a very good relationship with my mother. She's an obsessive, over-controlling person who is ALWAYS RIGHT. She makes me feel like garbage, and I'm anxious after spending just a bit of time with her. I resent that my golden brothers are states away and do nothing. She showtimes with them, because she has a tracphone and she pays for minutes. I'm the local no-charge phone call, so I get subjected to (sometimes daily) phone calls from her. When she said recently after the 5th call in a few days that she's not asking me to DO anything, I told her that all the phone calls were taking up my time. She got huffy and hung up. Maybe that will stick with her, and she'll stop the calls. Time on the phone with her is pointless, because she usually doesn't follow my advice, anyway. I'm just the stupid daughter.
LUCKYOGS...I just hope you can find a small amount of comfort seeing you are not alone!
I can tell you, it does get better when you educate yourself (on a "right on site") on this disease and how to cope...and I am still learning and will be for a long time.
My husband always tells me, you gotta dig deep... meaning for me, I wanted to learn how to cope and stay sane... I also weak and needed extra help...to find the courage to do what I could do for my parents and knowing my limits...I would pray every day for God's guidance...most of the time that would work but I needed a "helping hand", which is what happened when I found this site. I am amazed how many caring people there are here! Be strong, even baby steps are good 😉
And dig deep Tammy.
Bella 💕
Hope you find some solutions quick. I understand how difficult it is
While it is always uplifting to read a cute anecdote as a caregiver, I would caution you to be very careful of this condition as it has gotten me arrested.
I live in a small town with a law enforcement group that has little to do on a good day but look for issues. My father has dementia and became upset when I tried to make him help me clean and slightly move a fridge that a repairman was coming to work on. My father, unbeknownst to me, went down to see the local magistrate and told then he was being abused at home and that I had assaulted him.
My father and I may have words from time to time, but I would never assault or abuse him. But his performance in front of the magistrate was convincing enough because without a shred of evidence...the police showed up at my door with an arrest warrant.
After 2 months of court dates I was able to get the case dismissed after presenting letters from doctors diagnosing his sundowning and assuring the law they never had seen any evidence of abuse and we're certain he was quite safe at home.
I hope this never happens to you or anyone else, but cute stories aside, this can be a very dangerous condition and it would be wise to consult your doctors to shore up their help should you ever need it.
She fooled every doctor that came around to check on her. Finally a dear friend of my mother (the friend was head nurse at hospital) called in some favors and they got the right doctor to come out. Aunt Ruth could fool anyone for 5 minutes - but ask the right questions and she was finally truly diagnosed.
The MIL of a friend had just been in a very nice AL facility when her long-term care insurance sent someone to evaluate her--and she told them that of course she could cook for herself and bathe herself, and they wouldn't listen to the DIL who knew very well she couldn't. Too many people are not aware of how dementia can actually work.
One day I will be able to contribute.