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Oh wow, thank you so much, everyone, I was beginning to think I was crazy. It’s so wonderful to hear others are having the same experience. I love this forum already.
I learned early on not to ever scold for incontinence, though I have truly worked at encouraging him to use the commode next to the bed. He is pretty good but I have to keep a couple of disposable underwear on the night table and a pad on the floor. It amazes me that he can manage to change and that sometimes includes his tee shirt, yet he does not know where he is. Everything is so crazy, especially at night. I keep trying to find less expensive products, as he sometimes has 5-6 changes a day.
My step daughter just recently offered to take her dad to a family friend's baby's christening two hours away. It would be her mom, brother and her. I loved the idea, as I truly adore these people but was longing for the hours to just rest. Let me say that my husband's first wife has been so supportive, and understanding. So...they came to pick up dad. I had showered and shaved him-haircut and nice clothes-which took the entire morning. I was looking pretty grubby, but got a quick shower. The only downside was that I was expected to dog sit for their three furry friends. I knew this ahead of time, as this is always the case when they have taken him to events on three previous occasions. Not a huge deal, but boy, I was so looking forward to just quiet time. But here's the rub: as soon as they return, all I hear about is how "social, how conversational he was-how he did not use his transporter chair once, only went to the bathroom once in 9'hours"! He was great! Arghhhhhh! They leave and within 30 minutes he can't remember where they had gone or how he got there or who went with him. He then called his son at home to tell him that he'd seen the friend's new baby and asked why he didn't go. And so once again I am feeling like he has managed to "showtime".
OMG! I am so happy to hear that my situation is not isolated. I share so many of your stories and sometimes feel that I am losing my mind when my patient's ocar winning performances begin. Her multiple personalities make me think that the short term memory loss is really attributed to old age and her condition is truly a personality disorder that has been undiagnosed for years.
Just remember to take care of you. "Reality and fantasy don't exist in the same space."
This is not really an answer to anything, but I want to say a great big "Bless You" to all who have posted here. My mother-in-law has been diagnosed with dementia, still living at home with just her husband (who also seems to be very forgetful). We live 40+ miles away, so don't see her as often as we should. My brother-in-law lives just a few miles away, but his health is bad too, so he can't help much. Anyway, just reading your stories has lightened my heart, and I know with God's help we can manage to do what needs to be done...perhaps moving them (if they will) to our property.
Yes they can fool people One they never tell the truth to their doctors etc.My father in law never told the VA he drank.He is an alcoholic,so they could not figure out why he had certain ailments.Though now it's starting to show.
I'm baffled when people tell me how cute and charming my mother is to them. She's anything but sweet in a family-only setting. Out come the hateful remarks, verbal attacks, pinching, slapping, paranoia, and rages. During a recent hospitalization all I heard from the nursing staff is what a sweetheart my mom was. I know it's the dementia, but it infuriates me that she can be so selective. Why can't she be sweet with us?
I noticed that with my dad too. He treats me completely different than others. When we have company he acts like he knows what’s going on but when they leave we’re right back to requiring help with everything.
I've also seen this in my husband. Staff thinks he's smart and funny. When I show up he's angry at me because I won't take him home. I've tried several times. He refuses to shower or even get out of bed. He is a different person with me. Dementia is many things, but behavior can vary greatly based on the relationship to the people involved.
I've never heard this term but it fits. I've seen it. My friend actually recorded the behaviors that weren't being believed. The doctors were quite shocked. I have seen some of it with my dad; I think its more common in the early stages. I can't tell you how many hours I racked my brain trying to figure out if I was going nuts or if he were that good an actor or liar. It's very frustrating!
My great aunt does this! She can hold a conversation with the doctor and seem completely normal but then at home she goes crazy! She starts looking for knives to stab things with. She finger paints with her own feces. She asks the same questions over and over again. She cant, or wont, hold a conversation. And at night she talks to herself, the wall, her chair, etc. And also at night she has hallucinations. Maybe try recording some of her behaviors and showing it to doctor?
Teepa Snow is an occupational therapist who specializes in treating dementia. If you go to youtube and search for Teepa Snow, you can listen and watch her training videos. She states that dementia patients can often appear "normal" because they don't lose the ability to perform social "chit-chat." Unfortunately, they do lose complex verbal abilities. Teepa role plays someone scolding a patient with heart failure or kidney failure: "You're not even trying! You were peeing much better yesterday. Why can't you control your kidneys better?!" She says dementia is brain failure--not just memory failure.
My mom has Parkinsons and Alzheimer's ( 93 years). She acts the same way. It seem our rolls reverse as we get older. We become the parents and they are the child. Because we are more apt to constantly remind them more at home they seem to look at this as if they are being scolded or worried that they will not do something right before they have even tried. I have to remind myself constantly that my mom may not remember what I told her 5 minutes ago much less the day before.
Marciwriter, I called and spoke with the nurse at the doctors office about my mother's condition. The nurse wrote it in her chart so when my mother went in for her appointment they were able to deal with it without my having to say a word in front of her.
Your stories are amazing and sad at the same time. You describe my mom as she was at the start of this journey. She had everyone convinced that she was living on pennies; she charmed her doctors; and she treated me like she hated me. But now she is in the next phase of realizing that she can’t maintain the facade, and she depends on me. The stress of taking care of my mom is indescribable. Thank you for sharing your stories. The common actions of our parents brings some sense to this process and some comfort as caregiver.
I feel for you all as I could write a book on my Mom. Very narssistic. I wish I could say my poor sweet little Mother has turned mean and hateful to me all of a sudden with Dementia, but she has always been very hard to get along with for me and demanding. I thank God I found this site.
Oh my, mine does the same thing! At home she will carry on like she’s dying, moaning, groaning, growling, fake crying, oh god, oh god.... the second the phone rings and it’s her son, she turns into Zsa Zsa Gabor “Helllloooo” the most pleasant, elegant voice you’ve ever heard!!!! Not once does she make those disgusting noises! But she will automatically tell him her list of ailments and the entire conversation is then all about her! All her stories are so embellished and so far from the truth.
I so understand what you mean. this occurred for a long time with my mom she was very good when she was out socially because she can never admit that something was not right, and would not ask anyone else for help but then would look to me to help her and solve everything and say she needed help, as soon as I would try to go get her Assistance or we would talk to the doctor she would refuse help.When my mom was in the early stages of dementia I remember being so surprised how she pulled her act together whenever her long time companion was around and for other people it's like she knew what she was supposed to answer or would just agree with people and laugh and seem okay. For awile you think that you're crazy...but youre not!! Good luck!
Damita, to accuse us of hating our parents is harsh. Most of us don't hate our parents but we hate what they have become due to the disease and mental decline. Essentially they are no longer our parents, the ones that loved and nurtured us as we were growing, but people we no longer know. How desperately we would like for them to be whole again! We are angry. Angry that we can't fix the situation. Angry that there is so little information and support for family and caregivers. Angry that there is no cure for Alzheimer's/dementia. Angry with ourselves for feeling guilty. True, everyone's situation is different and some had a less than stellar relationship with their parents even in the best of times. And yes, we do vent just as I am going to take your input as venting about something that we on this tread aren't privy to understand.
DAMITA, Although I fully understand where you are coming from, the following requires consideration:
- Caregiving is not always a choice, and even if it is, there will be days where not even an angel can have the same patience and emotional stability to do it “right”.
-Agree that people are being characterized as Narcissistic left and right, when many times their behavior is a normal result of aging and illnesses. Yet, if you think about it, believing a parent’s actions are due to an “illness” is better than assuming they are just mean. It is key to determine if their actions are new,
- This is a “free zone”, people come here to be able to say what they feel, how they feel it and when they feel it...right at the moment they write though. It’s not a permanent situación.
Listening to these stories I was wondering if anyone was afraid of getting reported. My dad called me everyday and told me a family member was beating him, starving him, and taking all his money. So I took him into my home and shockingly...he tells everyone I beat him, starve him...and take all his money. His money hardly lasts till the 15th of the month and that is where I have to chip in my money and I'm on a fixed income struggling. When we're out in public he picks up cigarette butts and when I tell him to throw them back he screams that I'm a horrible person and I take all his money so he can't buy food or cigarettes and whole groups of people are starring daggers at me...how does one protect themselves from potential reportings, etc?
Just to state the obvious, a lot of people who are not suited to caregiving are doing it anyway because there's no other viable option. Paid care is great if someone has the money to pay for care, but it's expensive. Many of our parents failed to save for their old age and when they end up needing help they have no choice to rely on their grown children, whether they (or the adult children) like it or not.
My mother, at 86, is stuck in that seemingly endless never-never-land between being capable of living on her own and being so impaired she needs a nursing home. She can't drive and she can't stand unassisted or walk more than about 30 feet, even with a walker. That means she can't cook, clean her house, make her bed, shop for food or other necessities, or go to medical appointments on her own. None of these impairments require a nursing home level of care, but they all require someone there to help her out on a daily basis. She's gradually become more and more incapacitated over the last 10 years or so, but she's not sick let alone dying.
Nobody wants to take care of her, but somebody has to. My sister and I split up the duties, along with Mom's housemate who lives rent-free in exchange for household help and light meal preparation. My sister does most of the chores, like finances and scheduling appointments, that don't require face-to-face contact with Mom. I do most of the other stuff.
When I first moved to take care of Mom, I estimated her life expectancy at about 2-3 years, five at the absolute most, since was in her late 70's and already in lousy health with multiple issues. It's now been 7+ years with no end in sight. So you have people who never wanted to be caregivers, and you have people who stepped up willingly but gradually wore down as the work expanded and the time seemed to stretch into infinity. You get dragged into greater and greater levels of responsibility as you're searching desperately for a way to exit. It's like a job that you can never quit no matter how much you grow to hate it and no matter what other opportunities are out there. It makes people pretty crazy, and who can blame them? Not me at least, because I'm one of them.
Isn't it infuriating when they do that?!? Saying different things to different people and making you look bad when you're giving them your all? What's really frustrating is when they manage to convince others that their stories are true. Mom has a church-full of friends whom she's managed to convince I'm an uncaring, selfish daughter. I finally decided not to let it bother me any more. Sooner or later they'll see the light and I'll be vindicated!
Anyway, I get it! This is the place to let off some steam. My 2018 new year's resolution was to stop allowing Mom to steal my peace of mind! It's getting better every day. ((((Hugs)))))
My mom lies constantly! She is always saying she’s dying!! And so weak she’s going to collapse at any moment! Then she starts walking around the house saying she’s starving. She eats like a bird! She lies about me and others constantly. Cruel terrible lies! Most of the time she is so apathetic she just sits and stares and when I ask her what is she doing she says she is saying her prayers. I have to call my siblings every week so she can talk to them and she tells them what great health she is in and she is chatty Kathy laughing and talking like she just turned into an angel. I’m getting sick of it.
I can see why you think the way you do and couldn't agree more: as I stated earlier in this thread, chiIdren who were abused by their parents typically don't make the best caregivers. Too much emotional and/ or physical pain, boundary violations, etc. make it so hard to care for the parent who not only didn't care for you but actively abused you, even through your adulthood. Compounded now by aging and dementia, it's the gift that keeps on giving.
I don't hate my mom. I fear the pain and punishment she inflicts and all too often, more than I' d care to admit, I've reacted like a child rather than the 60+ woman I am. I have a forgiving spirit. That's not the issue. It's just that Mom in her 92 years never, ever took responsibility for her own feelings and actions. To her, husband & children weren't individuals with their own needs but tools to prop the fake self she hid behind. I sought therapy years ago that helped with the emotional fallout and helped face the reality that the woman who "raised" me was and still is mentally ill. The damage she caused within our family is incalculable. None of her children or grandchildren were left unscathed. That circumstance leaves none of us suitable to be her caretaker.
But collectively we have done right by Mom, even though she doesn't think so. With moderately severe mixed dementia, she can no longer be held accountable for her speech or actions, bad as they may be. We have placed her in an excellent memory care facility and know she is well cared for. As her POA (appointed by herself and my dear father before he passed), I manage her care and finances but practice low contact. I would relinquish the job to other family members if I could but either they don't want the job or they struggle themselves with addictions or emotional issues ( some directly or indirectly related to Mom's abuse). My only option would be to hand her care over to the state but I fear I might live to regret such a choice.
In a nutshell, what I'm trying to say is the vast majority who come here to complain don't hate their parents. We're hurting. We need a "shoulder to cry on." We need support from a community that truly understands because we've all "been there." We need a place to vent where we won' t feel judged in a negative way. Some caretakers didn' t sign up for the job but found themselves holding the bag, barely hanging by a thread. For some of us, counseling or therapy simply aren' t options. So we come here to learn how to be more effective caregivers, to restore our emotional health and get stronger. I have found so much encouragement and coping skills here among friends. Blessings, peace and thanks to all.
Damita, I agree with you that sometimes I read a post and think, "Why on earth are you doing caregiving?!" Sometimes that turns out to be someone having a bad day and needing to vent. Often it is a sign of ignorance, and some information may help. But sometimes, darn it, it is from people who really are not suited to caregiving. I hope that we can help by supporting people who need to remove themselves from direct caregiving. This is not a failure or character flaw.
I wonder after reading some of this stuff why some of you are caregivers. Seems as if it would be better for your parents if they could just hire caregivers and just have you as a peripheral part of their lives. When you hate or dislike someone as much as some of you state, it makes me wonder. I know you need to vent but your diagnosing people with NPD is practising medicine without a license. Drugging people with psych meds can kill older people. Maybe you need to separate your personal relationship from your caregiving one. When I realized that I could not do that with my mother, I bowed out. It saved my sanity and allowed her to get care without additional stress to her. Just a thought. Elderly are not children. I said previously that I am glad in some ways not to have children in my life after reading some of these postings.
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Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
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We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
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APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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Just remember to take care of you. "Reality and fantasy don't exist in the same space."
Because we are more apt to constantly remind them more at home they seem to look at this as if they are being scolded or worried that they will not do something right before they have even tried. I have to remind myself constantly that my mom may not remember what I told her 5 minutes ago much less the day before.
Although I fully understand where you are coming from, the following requires consideration:
- Caregiving is not always a choice, and even if it is, there will be days where not even an angel can have the same patience and emotional stability to do it “right”.
-Agree that people are being characterized as Narcissistic left and right, when many times their behavior is a normal result of aging and illnesses. Yet, if you think about it, believing a parent’s actions are due to an “illness” is better than assuming they are just mean. It is key to determine if their actions are new,
- This is a “free zone”, people come here to be able to say what they feel, how they feel it and when they feel it...right at the moment they write though. It’s not a permanent situación.
My mother, at 86, is stuck in that seemingly endless never-never-land between being capable of living on her own and being so impaired she needs a nursing home. She can't drive and she can't stand unassisted or walk more than about 30 feet, even with a walker. That means she can't cook, clean her house, make her bed, shop for food or other necessities, or go to medical appointments on her own. None of these impairments require a nursing home level of care, but they all require someone there to help her out on a daily basis. She's gradually become more and more incapacitated over the last 10 years or so, but she's not sick let alone dying.
Nobody wants to take care of her, but somebody has to. My sister and I split up the duties, along with Mom's housemate who lives rent-free in exchange for household help and light meal preparation. My sister does most of the chores, like finances and scheduling appointments, that don't require face-to-face contact with Mom. I do most of the other stuff.
When I first moved to take care of Mom, I estimated her life expectancy at about 2-3 years, five at the absolute most, since was in her late 70's and already in lousy health with multiple issues. It's now been 7+ years with no end in sight. So you have people who never wanted to be caregivers, and you have people who stepped up willingly but gradually wore down as the work expanded and the time seemed to stretch into infinity. You get dragged into greater and greater levels of responsibility as you're searching desperately for a way to exit. It's like a job that you can never quit no matter how much you grow to hate it and no matter what other opportunities are out there. It makes people pretty crazy, and who can blame them? Not me at least, because I'm one of them.
Isn't it infuriating when they do that?!? Saying different things to different people and making you look bad when you're giving them your all? What's really frustrating is when they manage to convince others that their stories are true. Mom has a church-full of friends whom she's managed to convince I'm an uncaring, selfish daughter. I finally decided not to let it bother me any more. Sooner or later they'll see the light and I'll be vindicated!
Anyway, I get it! This is the place to let off some steam. My 2018 new year's resolution was to stop allowing Mom to steal my peace of mind! It's getting better every day. ((((Hugs)))))
I can see why you think the way you do and couldn't agree more: as I stated earlier in this thread, chiIdren who were abused by their parents typically don't make the best caregivers. Too much emotional and/ or physical pain, boundary violations, etc. make it so hard to care for the parent who not only didn't care for you but actively abused you, even through your adulthood. Compounded now by aging and dementia, it's the gift that keeps on giving.
I don't hate my mom. I fear the pain and punishment she inflicts and all too often, more than I' d care to admit, I've reacted like a child rather than the 60+ woman I am. I have a forgiving spirit. That's not the issue. It's just that Mom in her 92 years never, ever took responsibility for her own feelings and actions. To her, husband & children weren't individuals with their own needs but tools to prop the fake self she hid behind. I sought therapy years ago that helped with the emotional fallout and helped face the reality that the woman who "raised" me was and still is mentally ill. The damage she caused within our family is incalculable. None of her children or grandchildren were left unscathed. That circumstance leaves none of us suitable to be her caretaker.
But collectively we have done right by Mom, even though she doesn't think so. With moderately severe mixed dementia, she can no longer be held accountable for her speech or actions, bad as they may be. We have placed her in an excellent memory care facility and know she is well cared for. As her POA (appointed by herself and my dear father before he passed), I manage her care and finances but practice low contact. I would relinquish the job to other family members if I could but either they don't want the job or they struggle themselves with addictions or emotional issues ( some directly or indirectly related to Mom's abuse). My only option would be to hand her care over to the state but I fear I might live to regret such a choice.
In a nutshell, what I'm trying to say is the vast majority who come here to complain don't hate their parents. We're hurting. We need a "shoulder to cry on." We need support from a community that truly understands because we've all "been there." We need a place to vent where we won' t feel judged in a negative way. Some caretakers didn' t sign up for the job but found themselves holding the bag, barely hanging by a thread. For some of us, counseling or therapy simply aren' t options. So we come here to learn how to be more effective caregivers, to restore our emotional health and get stronger. I have found so much encouragement and coping skills here among friends. Blessings, peace and thanks to all.
What is your mother's care situation now, Damita?