Q: My loving, Jewish mother is 92 and has turned into a rude, abusive foul-mouthed woman who I no longer recognize.
She’s in relatively good health and amazingly lives in the same house I grew up in. She has an aide during the day. She won’t leave the house,treats the aide poorly and last weekend cursed out my very patient spouse. We’ve been getting 5 calls a day such as ” I”m having a heart attack; no one will tell me whether recycling comes today”!
I know she has early signs of dementia. Her cardiologist tells me not to take it to heart and this is not the same women who raised me. She won’t go to the JCC adult programs, complains about being lonely at night, yet hangs up on me when I tell her we can get an aide at night or sell the home and let her live in a facility with women her age, etc. She threatens to call the Police if someone comes to her home at night. I have a POA but don’t want to rob her of her independence at 92. I try to tell her to speak nicely to the aides, myself, my spouse, but she says ” I don’t remember or I must have reacted to something someone did or said.”
I feel guilty as I’m not spending as much time with her as I would like, but it’s a matter of survival. Jewish guilt is thrown about with impunity and I can’t tell whether she’s being manipulative and obsessing over bullshit ( “oh my God the outside light may burn out tonight” ) or she really can’t control herself. Her aide is a lovely human being but my mom orders her around like a slave. Who is this woman? I’m torn, anguishing over what to do and am doing nothing but try to correct her inappropriate behavior and language. I wanted to take her to a geriatric psychiatrist but she refused to go. Medication to calm her down is dangerous per the MD as she could fall, etc.
What should I do? I’m at my wits end.
Dr. K’s answer:
Wow, difficult situation but unfortunately not uncommon.
You say your mother has early signs of dementia, and it is true that “personality changes” can be due to an underlying dementia, such as fronto-temporal dementia or Alzheimer’s, especially if a family notices other changes in memory or thinking abilities.
But it doesn’t sound like your mother’s been clinically evaluated for dementia, and you don’t say whether this has been brought up with her primary care doctor.
How to Get Memory & Thinking (or Personality Changes) Evaluated
To get help with this situation, I would recommend you find a way to get a least a preliminary medical assessment done for dementia.
If you are wondering what is the difference between dementia and Alzheimer’s disease, or want to know more about how they are diagnosed, I explain that in this video:
In principle, this can be done at a primary care provider’s (PCP’s) office, and it might be easier to arrange that visit than it is to get her to see a geriatric psychiatrist.
In practice, primary care doctors – and cardiologists, for that matter – routinely wave off dementia assessments in people your mother’s age, saying things like “it’s not necessary” “there’ll be nothing to do” “don’t make her upset” and “don’t take it personally, it’s the disease and not your fault.” (This last statement is generally true, but that doesn’t mean we should skip the assessment!) Also, many primary care doctors may not be quite sure just what to do, in order to complete a preliminary assessment.
Fortunately, you can improve your chances of getting a helpful assessment by familiarizing yourself with how dementia is diagnosed, and then coming prepared with good information regarding your mother’s abilities and challenges. For instance, you can make note of how your mother is doing regarding these 8 behaviors that may correspond with Alzheimer’s.
This article I wrote can also help: Cognitive Impairment in Aging: 10 Common Causes & 10 Things the Doctor Should Check.
You can also review this article about dementia diagnosis which I wrote for family caregivers. Do bear in mind that HIPAA does not prevent you from contacting her doctor ahead of time and relaying your concerns and your observations. I generally think it’s good to do this in writing, as it can be put in her chart.
You may, of course, be wondering why you should bother getting her checked for dementia, such as Alzheimer’s disease. You may also be worried that a diagnosis will distress or upset her. In truth, it might upset her in the short term. Still, in the long run, getting her assessed for dementia is likely to bring you both a lot of benefits.
The Many Benefits of Pursuing a Dementia Diagnosis
For your mother, an assessment for cognitive changes means she’ll be checked for other health problems that might cause personality or thinking changes. After all, it’s possible that the problems you’re observing are not due to dementia.
It’s also common for dementia to be exacerbated by additional problems – like electrolyte imbalances, medication side-effects, untreated pain, or even constipation — which can be treated, even though a disease such as Alzheimer’s can’t be cured. So you really want at least a preliminary clinical dementia evaluation to be completed.
If your mother ultimately is deemed to have dementia, you want that to be in her medical chart. That’s because this diagnosis has implications for how to manage the care of any other health problems she has. (For example, the doctors should not simply provide verbal instructions to her for her healthcare, as they usually do to patients. And they should do things like simplify her medications if possible.)
A dementia diagnosis will also make it easier for you to get help as a family caregiver. Difficult behaviors are often managed with medications, but it’s true that these generally increase fall risk, so they should be avoided. If you are concerned about her behavior, this article will explain the pros and cons of the available medication options: 5 Types of Medication Used to Treat Difficult Dementia Behaviors.
What is best is for family caregivers – and paid home caregivers – to learn better dementia behavior management techniques, and dementia caregiving coping strategies. I’m afraid it’s pointless to try to reason with her and “correct” her behavior, that just doesn’t work with people who are cognitively impaired. But there are other approaches that can help, most of which start off by accepting the impaired person’s reality.
Plus, learning better ways to handle your mother’s behaviors can have a big effect on her wellbeing, and on yours. For you, learning better approaches will help you with the stress, anxiety, and guilt. This will make it more feasible for you to be present for your mother when you can, and that in turn will improve her wellbeing (even though she may not often sound as appreciative as you’d like). A 2013 study actually found that dementia caregiver coping strategies were associated with slower dementia progression.
Last but not least, a dementia diagnosis often helps a family focus on planning for further declines in decision-making and independence. This is obviously not easy, but trust me, things tend to go better later if families have done some planning earlier.
In other words, there is a lot to learn and do if you are, in fact, the son of an older woman who is changing due to dementia. A preliminary diagnosis is an important medical first step, and will make it easier for you to get help coping, and get help learning skills to make the experience more manageable.
How to Get Help Coping with Dementia Symptoms
For help coping with the experience – whether it’s how to get your mom in to see the doctor, how to deal with the doctors, how to cope with your stress, how to manage her outbursts, how to plan ahead – I would recommend you try the following resources:
- Talk to a professional trained to help people struggling with aging parents, such as a geriatric care manager (now known as an aging life care professional) or a senior care adviser.
- Visit online support forums. There’s a quite active forum at AgingCare.com. The Alzheimer’s Association is another good source of support groups.
- Read a few good books, as it’s hard to learn a lot by skimming web pages. For dementia, the 36 Hour Day is well respected, and I like Surviving Alzheimer’s a lot too. Or consider a course offered by your local Alzheimer’s Association. Another option would be dementia management videos, such as those by Teepa Snow. Pick whatever method of education works best for your style of learning.
- Remember to take deep breaths, and to take care of yourself. Dementia or no, helping an aging parent is usually a long journey. Building some daily walking and daily mindfulness practice into your day can make a big difference.
Good luck! Do get that dementia assessment and then get help learning to deal with her behaviors. It’s an effort but it will pay off in the long run.
This article was first published in 2015, and was last updated by Dr. K in June 2022.
Sand Grace says
Actually, not true. A confirmed dementia diagnosis does not help in getting help. The catch 22 is still medical resistance to deem someone incapable of taking care of themselves. They still want it turned over to the courts. Specially troubling is the senior who refuses help. And they can refuse help if the court has not deemed them incompetent. This leads to senior abandonment by the children or caregivers.explain dealing with a dementia patient that refuses visiting angels and only wants their children taking care of them. Also explain how to socialize them if they are sociophobic. When the Dr, even tells the patient they are being too difficult and can’t provide assistance because the patient refuses it. I now understand why seniors are abandoned.
Nicole Didyk, MD says
You describe a very common dilemma for families with members living with dementia. I can understand your frustration and concern.
Even when an older adult is found incapable, it’s hard to force them to accept help. Most care agencies aren’t authorized to come into a person’s house if they refuse.
A dementia diagnosis can often help in getting specialized resources for the person with dementia, and guide caregivers in getting the right kind of education to best help their family member.
It can be a very complicated and fraught situation as you describe. Dr. K’s book about caring for an aging parent has practical advice about how to navigate when a parent is living with dementia. You can learn more about the book here: https://betterhealthwhileaging.net/education-and-support/when-your-aging-parent-needs-help/
Traci says
May I also suggest checking for a UTI? That can cause sudden aggression (not to mention confusion and other symptoms) in the elderly.
Nicole Didyk, MD says
Great suggestion!
Dr. K has a wonderful article about sorting out the pitfalls of UTI diagnosis in older adults.
Annette says
Just something to think about. Do not hesitate to put cameras in the home when hiring caregivers. We had (visible, so everyone knew they were there) cameras in our 93 yr old Mothers home. Most of the caregivers the agency sent were kind and truthful, however, a few had to be fired immediately. Without the cameras we would not have known that they were nice to us but mean to Mom. Elder abuse to varying degrees, especially towards those with dementia, is much more common that we’d hope.
netmouse says
I’ve read versions of this:
Tips for communicating with someone with Alzheimer’s or dementia:
Never argue, instead agree.
Never reason, instead divert.
Never shame, instead distract.
Never lecture, instead reassure.
Never say “remember,” instead reminisce.
Never say “I told you,” instead repeat/regroup.
Never say “You can’t,” instead do what they can.
Never command/demand, instead ask/model.
Never condescend, instead encourage.
Never force, instead reinforce.
Nicole Didyk, MD says
Thank you for sharing those excellent tips!
Bill says
Interesting comments here. My Dad passed recently as in a couple of months ago. He was well into his 80s. Even as He got older with health issues he was manageable until he got hit with kidney stones and had to be hospitalized. Well the guy that came out was different than the guy who went in. His mild dementia suddenly became strong moderate level. Suddenly He needed me all the time for the bathroom, kept saying he could not breathe a lot and slept incredibly poorly.
He was hospitalized about 5 times over the next 5 months. Now He did have conditions including diabetes, heart, cll and mild dementia. But again it was manageable from my standpoint until he went into the hospital. He caught an infection there, too. It was like everything just jumped in a negative way. Some tell me the antibiotics are often a culprit in putting old people over the top shall we say.
Managing at home for 5 months became incredibly hard. Waking up 15 times per night with breathing and bathroom issues made sleep basically an afterthought for both of us. His eating started to slack off. His dementia suddenly affected His speech and the forgetfulness became dramatic.
Doctors at another hospital said His Cll was driving the issue. My Dad had an oncologist but he held off doing anything for fear it would affect my Dad’s heart until basically the end where He was put on some anti Cancer pills.
It all got too much. My Dad kept falling too. I was getting virtually no sleep wearing out. More hospital stays happened until His heart gave out and He was put in Comfort Care until His last breath.
I must say I know mid 80s is old- especially for a man, but it was like everything went belly up after that first hospital stay.
The following months would be quite bad and I simply could not keep up due to pure exhaustion. It changes a person. We are only human and humans need rest. All that was taken away seemingly after an infection or by too much antibiotics? It all led to a rapid decline.
But at those ages and with conditions older folks are sensitive. Look at what covid has done to old people. Ironically my Dad caught Covid in the hospital but overcame it quickly.
This life is pain mixed in with good times. It’s why it is important to have a lasting faith in a Creator higher than you. I pray and know You are doing well, Daddy. You were and are the Best. Forgive me for not keeping up at times. Being a caregiver is utterly exhausting and shocking when you go from a mild caregiver to maximum caregiver in a very short time. It aged me and shocked me.
Nicole Didyk, MD says
Hi Bill, and thanks for sharing your heart wrenching story. I’m so sorry to hear about your dad’s suffering and it’s natural to feel as though you could have done more. I’m sure you did everything you possibly could.
Your description of an older person being irrevocably changed after a hospital stay is all too familiar, and unfortunately the stress of being ill and hospitalized is often the start of a period of decline. It happens in people who are living with frailty – a condition related to age and other illnesses that can be managed fairly well most of the time, but makes it hard to withstand an “insult” like an infection or surgery.
Wishing you more of the good times and healing in the months to come.
JustAguy says
I’m 38, been disabled since I was in my early 20’s. Trying to work full-time. I take care of my father who has lung and brain cancer. My mother is in her early 60’s and makes stuff up and believes it. She thinks I am always causing her stress and mistreating her. For years people believed her until this week. This week he had brain surgery. That was on Thursday, this is Saturday and he is 70 years old. We have had him home for about 2 hours and she is creating drama and yelling at him. My brother and I keep trying to help, but she flips out nonstop over everything. She takes things out of context, interrupts and just screams. I live with them to try helping out and provide financial help to them. I told my brother tonight I cannot take it any longer and that I will be moving. I do not know if she has early alzheimers or dementia, but I feel she needs serious mental help. She is bitter at the world. One thing goes wrong in her life and it ultimately is my fault. The abuse has gone on for 12 years like this. I wished I had some control to get her checked out by doctors, but I have no power to do so. My dad keeps putting it up. He could have died this week and I tried playing referee saying hey everyone needs to calm down. Keep in mind, my father is two days removed from having a tumor removed from his brain and he’s already arguing with my mother. I feel powerless. Guess what started the argument? My mom was upset we were low on gallon jugs of water. Guess how many gallons of water we have in the house? 16 total gallons of water plus 9 – 24 packs of water. My neurological conditions are starting to suffer due to the stress of the mistreatment. I don’t feel comfortable leaving my dad alone with her. She’s now stomping through the house throwing a fit stating I don’t show her any patience. My brother apologized to me before he left for not believing me years ago. One more night going to bed in tears tired of giving up my life to help them. My dad is such a nice guy, I love him more than anything. He thanked me tonight probably 50 times or more for all I did this week. My mom, still on her tirade about how awful I am.
Nicole Didyk, MD says
I’m so sorry to hear about your dad’s illness and what sounds like a really tough family situation for you. Personality issues can be exacerbated when a person’s partner is ill or needs caregiving and it can lead to anger and lashing out. If your mom is actually having false beliefs, this article might be helpful: https://betterhealthwhileaging.net/6-causes-paranoia-in-aging/
There’s a lot going on in your story, and in situations like this, often the only person whose behaviour you can change is your own. I encourage all caregivers to make sure they see their own medical professionals and advocate for what they need to look after their own health. You’re entitled to do that.
Dr. Kernisan is launching a new book about helping older parents that I think would be helpful to you and you can find out more about it here: https://betterhealthwhileaging.net/education-and-support/when-your-aging-parent-needs-help/
I also have a website, http://www.TheWrinkle.ca which has a lot of info about aging and caregiving.
Best of luck and thanks for reading the article.
Ben says
And I must say the line you wrote “often overestimate there abilities to manage” says in six words what I struggled to express with a sea of words…. well said,
Nicole Didyk, MD says
I’m really glad that you found the responses helpful, Ben and wish you the best!
Betty Pendley says
I need help with this situation.husband had brain surgery in 93. He is 72 yrs. Old and it’s so unbearable I’m going to have to leave. Name calling and being told I’m stupid and many, many other degrading words is too much to handle. My b/p is heart attack and stroke levels. He treats my son terrible and he has such a great heart. He’s very kind and respectful. I’m at my wits end. I have no choice but to leave. He is not paying any bills and now I have to buy my groceries. He’s worse than a child having tantrums. I’m scared to stay but have nowhere to go.
Nicole Didyk, MD says
Betty, it sounds like you’re experiencing abuse, whether or not the behaviour is related a previous brain surgery.
This isn’t my area of expertise, and I think it’s vital that you get support and guidance, especially if you’re thinking of leaving.
I would strongly encourage someone in your situation to talk to your doctor, pastor, or someone else you trust. They can point you towards other resources, including shelters for people escaping abuse. If you feel that you’re in imminent danger, call 911.