Guest article by ALTCP
Caregiving for a family member can be a double-edged sword, bringing families together or tearing them apart.
On the one hand, children who are caregivers have the opportunity to say “goodbye” over a period of time to parents who live with dementia. Caregiving can bring families closer and strengthen relationships. After all, what a gift to give to those who raised and nurtured their children.
On the other hand, caregiving can take a turn for the worse when frustrations lead to abuse. We read about elder abuse in the news and hear about it from our friends and colleagues. Often, old and frail elders experience abuses of varying kinds from their caregivers—physical, emotional, verbal, sexual, financial, abandonment, and neglect. This is a bitter pill to swallow when we imagine our sweet grandmothers and grandfathers or elder parents being treated poorly.
The elder abuse statistics reported by the Centers for Disease Control and Prevention are terrifying. [5/17/2024 TCV Update: prior URL broken; see update with “Abuse of Older Persons – Quick facts and stats”] One in ten people ages 60 and older experience some type of abuse. These figures are likely underestimated due to many who won’t report the abusive instances due to embarrassment or repercussions from their caregivers.
However, there’s another victim of abuse – one that is rarely addressed. When the word “abuse” is used, it’s typically in a situation where an elder is abused by a caregiver.
What happens when the tables are turned and the caregiver is being abused?
The Unlikely Abuser
Looking from the outside, many of us often find it hard to fathom how a frail, vulnerable, and aging person can be abusive. This does happen, though; and we just don’t hear about it as much as we do when the opposite happens.
A mother who had always put her daughter down when she was growing up will likely continue this behavior despite the role reversal. A father who was physically abusive to his children will more often than not continue being abusive. A spouse who abused his or her partner in any form will likely continue.
As hard as it is to imagine, caregivers in situations such as these still feel the need to earn the love and respect that they wanted from parents and spouses.
Retaliation Is Never the Answer
Day and night, you care for your parent. After spending much of your time and resources, you’re yelled at while trying to help or even spat at or bitten. Your family member may even throw something at you.
Caregiving is stressful enough. Having to deal with your care recipient’s abuse may lead you to retaliate. Pent-up emotions and frustrations may cause you to strike back. 
This can be avoided by looking for the cause of these outbursts. If the care recipient still has sufficient cognition, a family counselor might help facilitate behavior change. If Alzheimer’s or dementia is not the cause, seek professional help to determine if the behavior is being triggered by a medical or psychological condition.
Abandonment vs. Self-preservation
When the situation gets out of hand, family caregivers often move their loved ones to facilities, which are better equipped and trained to handle these types of situations.
However, guilt remains for abandoning loved ones when they need you the most. There’s also the perceived judgment from onlookers or the stigma of moving elderly parents into a facility.
Yet moving away from a negative environment, preserves the well-being of both the caregiver and the care recipient. Instead of abandonment, you have created the space needed to prevent ongoing abuse while remaining involved in the care process.
We Need to Talk about This More
Though these situations happen, they are rarely reported in the media or discussed by friends and colleagues. However, this is a serious matter that can’t be ignored. Many fall victim and remain silent in this situation for too long. No one deserves to feel trapped in a negative environment that needs more attention.
ALTCP.org is a long-term care insurance agency that provides free long term care information, resources, and expert planning advice for seniors and adults. ALTCP’s mission is to raise long term care awareness and promote self-education on the need to plan for long term care. With this knowledge, Americans will be able to properly prepare for the financial and emotional burden that long term care may place on their families.
Also read: Family Caregivers: The Everyday Superheroes
Dear Brenda,
I find that I am in a horrible spot as the caregiver for my 83 yr old mother. I am compelled to write after reading Catherines’ post. I am surprised how similar the treatment from my mother is to Catherines’ mother.
My mother was diagnosed 4 yrs ago to be in the early stages of dementia by the NP she was seeing. Now then the NP moved on (whereabouts unknown) , and the Doctor refuses to make a commitment to any kind of a diagnoses other than depression! However, he will admit verbally to me that she is paranoid, because she thinks people are looking through her windows at her and unlocking her door at night and then leaving. Not capable of handling her own finances, due to her poor judgment and irrational thinking. Also, if you talk to her long enough, you will notice several inconsistencies within her stories. As well as the fact that her memory is as good as gone, by her own admittance.
I am the only 1 of 3 children that has anything to do with my mom. My step-brother & step-sister are 19 & 20 years older than me and haven’t spoken to mom in years. She has always had to control everybody’s life and they had to be at her mercy at all times. And by all means, do not ever tell her “no” about anything!
Please do not think for a moment that I do not love my mom, I love her with all my heart! I have given most of my life to her needs or demands,even being the caregiver that she couldn’t be for my dad, whom passed 4 1/2 yrs ago with cancer. He worked up until 1 month before he passed and as they wheeled him out the door to the funeral home, my moms final words were…”if he could have just worked 1 more yr, I would have been so much better off”! (Yes, I may have some pent up issues, but I am managing)!
My situation is this… mom has become aggressive in the past. Scratching, hitting and ALWAYS calling me every name in the book, but I have never retaliated. She opens her mouth and nothing but painful,nasty accusations come out towards me. I have told her she can not treat me that way. I am the only one who is there for her. I have threatened calling the cops to report her abuse, but that is my mom and I can’t bring myself to do it.
I wrote a letter 10 mo. ago to her doctor and gave a copy to her attorney so he could be aware of my concerns. I was asking for help, some advice, suggestions on how to help her, keep her from financial ruins and bring to light the physical stuff that I endure.Only then did I find out that she had changed her POA to include her attorney as POA with me. Later I found out that she had done this recently because she is convinced that I steal her money and she believes that I will somehow get control of the farm and sell it out from under her!
The letter only made matters worse. She believes I was trying to get her “put in the crazy house”, as she says it! I received no help or anything from anyone.
This last episode has alienated me from my mother. She likes to tell people that I will not take her grocery shopping and that I refuse to take her to doctor appts. when in reality she refuses to go when it’s time and I only take her to 1 or 2 stores for groceries, not 4 or 5 like she wants. I have told her she shouldn’t lie to make me look bad because one day someone will believe her & think she isn’t cared for properly. Then they will see that she is not capable of taking care of herself and put her in a home, there won’t be anything she can do about it. Her reply, “want to make a bet”?!
So, coming home from shopping she was mad because I was talking to “her friend” on the phone while we were shopping (it was her nurse w/ health ins concerns for me to deal with). She doesn’t talk to my friends on the phone, she told my husband later! So while I am driving, she starts swinging at me, cussing me, threatening to have me arrested, and kicking me! She can’t believe that I treat her sooo badly! But here is the best part…I take her the rest of the way home, carry her groceries in, help her in (she uses a powerchair, she is unable to walk more than a few steps), and walk home.
Her next doctor visit, she finds a different way to get there than me taking her because she would rather die than have me do it. So, my phone rings and the doctor says he wanted to give me a heads up that he had to report me for “elder abuse” & “financial abuse”. Mom showed him some bruises that he sd he didn’t believe came from me, but mom sd that I was kicking and hitting her while I was driving (impossible)! And I steal all her money! I don’t have access to her accounts! So here I sit, waiting for the knock on the door and the possibility of loosing my job (taking care of another elderly woman) and being slandered to whomever will listen…all by the mom I dedicated my life to!”
Please help, any advice would be appreciated. I apologize for the length of my post.
L.Parker, my heart goes out to you and so many other caregivers who endure similar treatment.
Within your post are a couple issues that may offer answers – such as your mother’s need for control and her comment as your father’s body was being wheeled out to be taken to the funeral home.
While I hope others engage in commentary here before the comment period closes in about a week, I’ll offer mine.
To always be in control and feel she’s “losing it” is difficult by any measure. Your mother comes across as very “me-focused” in your writing and anything out of her control or out of the range of her preferences is then seen as a threat.
Based on what you wrote, I’d honestly reassess if you should place her.
We step up to provide care for our parents for our own reasons, even in a crisis.
I moved my father across country to care for him in my husband’s and my home when few options remained with my sister and brother who lived with/near him. When it became apparent that my husband and I were having bouts of caregiver dementia, we knew something had to be done and faced the agonizing decision yet (in hindsight) better-for-him, placement.
Since your mother lives in her own home (I infer from reading what you wrote), you may want to hire an in-home caregiver companion, who can take her to the places she wants to go. This way, she won’t direct her anger toward you.
There is no reason I can see from what you have written to destroy your own life, your hubby’s life and not get help caring for your mom.
If she refuses, well, that’s her decision. It’s sad, but the reality is when we try for heroics beyond caregiving heroism, we suffer in greater ways. You need to ask yourself why do you put up with it and what damage is it doing to your life? Your answers will help you to move forward.
Dear Brenda:
Thank you so much for taking the time to respond so quickly. Sometimes I think we need someone to tell us that it is o.k. to say, “I can not do this anymore”. My whole family has suffered from this for years. I feel like we are watching everything that my dad worked his whole life for, slowly slipping away.
Recently it has come to mind that even though she made me promise when I was younger, that I would never put her in a home, there is nothing worth what we are all going through. I do believe she would be happier and maybe before it is too late, let me just be her daughter once again.
Thank you for your advice.
My pleasure, L., and even though it feels comoforting to know it’s okay to get caregiving help, know that it’s not easy to move forward.
That’s your next challenge, and one I believe, from reading your comments, that will make it easier for you and your mom to be mother and daughter once more.
Who knows? You two may be on the same team as she leans toward you and whispers, “Help me get outta here!” 😮
Regarding caregiver abuse: I have been taking care of an elder man for three years. He is not a relattive and his children are estranged from him and they live in different parts of the country.
He is difficult to deal with and his aggression and tantrums are getting more frequent. He wants alot of attention and acted out on occasion. He is also a hoarder and this situation has affected his health and safety in the past. I have had to intercept the avalanche of junk mail and make sure his bills get paid, hauled the junk out of the yard as the county threatened to fine him several hundred dollars as anusance and eyesore.
There is more but way too much to put in email. My question: Is there medication that would help? He has been depresses for years. He is also a veteran. Local VA was not too helpful although there is a new doctor now at the local clinic.
I truly feel that the childish way he behaves at times for attention is a way to get a reaction from me. He resents growing old and others that can do what he can’t and/or won’t.
He will not go to senior programs and there was a problem four years ago with him letting some very unsavory people into home that used and exploited him. They were mainly women. He has been married and divorced several times.
I wanted to know if there are others that are dealing with a similar situation, meaning that the person is not a family member.
From what I have read, men with even some level of dementia tend to be more aggessive. He was not remotely like this when I met him several years ago. He was a good freind then and only that. I have had to put my career on hold but I will have to resume working soon as my own resources are limited. Even part time to accomodate this situation.
I want to try to explain that I feel at times I’m being manipulated. If I go to any type of function like church or a class etc. He will pout or act out and do some kind of guilt thing on me. I need to have a little me time for sanity sake and I could actually use more as I’m isolated now.
Sorry to be so lenthy. Any suggestions would be appreciated. I’m looking for some local support groups as a start in a better direction. Thanks in advance.
[TCV editor: Formatted comment for easy readibility with a few typo corrections.]
Kathy, thank you for writing about your situation. I hope more of our readers including the agency who wrote this article responds.
My experience over the past 20+ years is that there are others who have cared for friends as you do. For example, this Inspirational Caregiver Story between Friends
There are medications used to help with depression, but it’s important for him to be assessed by a doctor and one who is familiar with adverse effects of some medications for people with dementia.
My experience with people with dementia (not only men) is their behaviors do become different because holding back their “judgment filter” gets harder and their brains are destroyed by dementia. They often will speak or act out what is in their minds.
Having noted this, realize when LIFE makes you aware that “EVERYBODY” around you seems to have it better, even people withOUT dementia (PWoDs) will grow depressed.
It’s important to learn what kind of dementia he has.
Beyond this, YOU NEED TO TAKE CARE of YOURSELF. You have your own LIFE to LIVE. Remember this and be sure to take a respite every now and then. Even a FIVE-MINUTE RESPITE will make all the difference. Watch the video!
“A mother who had always put her daughter down when she was growing up will likely continue this behavior despite the role reversal.”
Thanks for sharing this issue, Brenda. I totally agree with this statement.
A paranoid, insecure person suffering from dementia becomes more paranoid more insecure.
My mother is 78 yo, and was diagnosed as an early vascular dementia patient in Dec 2013. Her conditions has deteriorated and is progressing to moderate dementia. Her frequency of accusing me ‘taking her keys/padlocks/belt/household items/bank books/money’ has increased to roughly twice weekly since 2 months ago. She withdrew money regularly (she received from rental) from her joint account (with me) to her personal account because she doesn’t trust me. Then she questioned me why there was so little money in the joint account.
Yesterday, she called me 5 times to check what day it is. Every time was like the first time, I answered her every time like the first time.
This morning, she called and accused me sneaking to her place at the middle of the night to steal her ‘few hundred dollars’ that she sew on to her underwear, and threaten to chop me into pieces.
Her reality is different from THE reality. She has pieces of memory that are missing.
She sometimes moans about bad memory, but when she accused me of ‘taking’ (she would always denies she meant ‘steal’) her things, she claimed that she has perfect memory and would not misplaced things.
Anything went missing in her house, it must be taken by me, she claimed. It cannot be anyone else, because my horoscope contradicts with hers, so it must be me who sabotage her.
I don’t deserve this.
I’m 49 yo and my mother only admitted that I was adopted at 1 month old when I was 45. Since 12 yo, my mother claimed that my father was my step father and she married my father while she was carrying me. She claimed that she lied to my father that I was a pre-matured baby. I kept this secret even till the day my father passed away when I was 44 yo.
Since 12 yo, my mother told me that my father physically abused her, but she fight back. I hated my father for many years. During my teens, I vowed to study hard and start work early so that she can divorce my father so that I can move out with my mother and live happily with her.
Since I started working from 19 yo, I never take a single cents from my parents. That was when I realized things might not seem to be what my mother told me. I’ve been paying my parents’ utilities bills, insurance premiums, medical expenses and household expenses since 19 yo. Before my father passed away, I paid for all his dialysis treatments/hospitalization and brought him to all his doctor appointments for a total of 11 years.
When I realized my mother had not been been taking her hypertension medications in 2012, I brought her to all her doctor appointments and sort out her medications in pill boxes.
My father cared about me, my life, my work, my happiness. He stayed up late to prepare/warm up suppers for me when I work late.
My mother was not interested in my life. All conversations with her since 12 yo is all about her – her unhappiness, her sad life. Any causal conversation with her will always be diverted to herself, how honest, how upright, how kind, how smart she is, how likable she is, how easygoing she is…
I was never good enough for her, she was jealous of the close relationship I had with my father (except during my teenage years). She claimed that she scarified so much (she’s not educated) for me, unable to leave my dad because she could not earned enough to support me. My parents stayed married till the day my father passed away.
She is always right and she has to win all arguments all the time. I believed that I was ugly (because my mother told me so) until I started working and slowly gained confidence.
My mother has no other relatives, I am her only adopted daughter. I guess not only I feel trapped, she feels trapped, too.
I clean her house every 3 to 4 weeks. I visit her once a week, sort out her medications and take her out for lunch. I call her twice daily to remind her to take medicine (hypertension, high cholesterol, diabetes, mood stablizer and Rivastigmine patch for dementia).
The lucky thing is that my mother can still take care of herself, and move around to familiar places by bus. She is slowly losing her ability to use her mobile phones (of course I paid for the said ‘lousy’ phone and phone bills). But I am not sure when she will deteriorate to the point that she cannot take care of herself. I am afraid it might be soon.
My mother and I don’t get along well, we argue all the time (since 14 or 15 yo?). When she is unable to take care of herself, I will have to put her in the facilities near my home and visit her regularly, for her sanity and my sanity.
Nowadays, every time my phone rings or when I call her, I wonder I will get another shouted accusations from her.
I need to deal with my anger, resentment, guilt and grieve. I lost the mother who loves me since 12 yo. I feel betrayed. I don’t feel any love from her even she claimed that she loves me and will leave everything to me when she pass on.
I am not a perfect daughter, but I believe I am a decent one.
I am lucky I have a very supportive, understanding husband and equally supportive children.
I missed my father. But at the same time I am glad that he was not at the receiving end of all my mother’s accusations.
I feel hurt and anger that I am getting all the accusations yet I am glad that my husband and children are spared from it.
Yes I understands that she is sick, but I am entitled to my feelings. I feel depress sometimes, but I will deal with it and get over it.
Dementia Caregiver stress is probably the worst kind. There is no hope of recovering, it just keep deteriorating.
I hope sharing my experience will console anyone with similar experience. Thanks for reading.
Dear Catherine,
I almost considered sending you an email to write a follow-up article for TheCaregiversVoice.com.
This is so heartwrenching to read. You’re right. You don’t deserve the abuse. And yet you like other loving caregivers are trying to do the best you’re able.
I am glad this article resonated with you and that you took it a step further and devoted time to share your experience, too.
I am certain it will help others who are silently suffering and not yet ready to share their own stories.
Thank you.
Brenda
Dear Brenda,
Thanks for the encouragement.
Life is not so bad, if we look at the brighter side.
I recovered from skin cancer (malignant melanoma) at the age of 26, but I’ve got a very caring husband. I consider myself lucky.
Sometimes, I’ve doubts whether I am doing enough for my mother, my husband always assures me that I’m doing enough. For your information, my mother likes my husband more than me =) She always treats him better.
When I talked to my best friend of 37 years, I wondered whether I still love my mother. My best friend told me I must have still loved her, because it still hurts so much when she accuses me. I guess she is right.
Over the past few years, I realize my mother might have slight narcissistic personality disorder as she had probably suffered a very traumatic childhood as she lost her father and siblings during World War II at the age of 5/6 yo.
But we as an adult choose our own actions and how we live our lives. Unburden the adult’s marital problems to young kids, alienate the partner, manipulate facts and make the kids take sides, all these behaviours are not right. Comparing to others (better) and always complaining about how hard life is does not help at all. It is better to find ways to solve problems and get better.
When I attended the Dementia Support Group Sharing sessions, I find that sharing our own experience really help others with similar experiences. I have met compassionate and supportive caregivers during the sessions, which is very helpful. I have also met very judgemental individuals who jump into conclusion without understanding my situations. I got irritated but has learned to ignored them.
As caregiver, we have to take care of ourselves first, in order to take care of the others (always remember the instructions on an airplane, take care of ourselves first, before we take care of the others). If the person we care for is too abusive, we need to seek professional help, being respite care services or full time facilities really depends on individual situations and how much we can handle.
I got strange stares from neighbours live near my mother’s place, my mother has cursed and swore, she told her friends that I stole from her. Her friends advised her not to trust me (she told me when she has her occasional good times with me). I’ve given up of maintaining a good front, they are not important in my life and they can gossip as much as they like.
I will just do whatever is necessary and within my means.
I still have a long way to go. I have to learn to let go of my anger, grieve and forgive, but it is not easy. I have friend that preaches that I should forgive and forget, but I am still not able to do it.
Sorry for my bad English (it is not my first language).
Regards,
Catherine
Catherine, first a response to your last comment: Your English is fine. I can understand you. (English is not my first language, either. So, we’ll help one another.) 🙂
What you wrote here is a powerful paragraph, yet so many are not strong enough to accomplish this leading to many problems we find in life.
But we as an adult choose our own actions and how we live our lives. Unburden the adult’s marital problems to young kids, alienate the partner, manipulate facts and make the kids take sides, all these behaviours are not right. Comparing to others (better) and always complaining about how hard life is does not help at all. It is better to find ways to solve problems and get better.
Please read my comment to Kathy and click on the two links I included in my response to her as you address both of these topics in your comment above.
I hope you have legal papers for your mom (e.g., Power of Attorney or whatever it is called in your country–your IP indicates you’re writing from Singapore) and that you have informed your mother’s neighbors about your her condition. You don’t need the hassle of an uninformed neighbor to call an agency who will then create a legal nightmare for you.
Thanks for sharing our post, Brenda! The community really needs to talk about this issue, and we’re glad that you are helping us spread awareness of the reality that some caregivers face.
My pleasure, Samantha. Greater awareness of this rarely talked about form of abuse helps ensure a better quality of life for both caregivers and care recipients.
I think it’s high time more people need to realize how significant caregiver abuse is. It’s real and causing so much damage already!
Hope more experts write about this topic!
Ronald, YES, as you note, “significant” topic – caregiver abuse both ways. The frequently cited abuse of the care recipient AND the rarely shared abuse of the careGIVER.
Thanks for bringing this to the forefront, Brenda. Important things to pay attention to.
You’re welcome, Sheri.