I want to send my condolences up front to anyone facing the challenge of accepting the responsibility of handling the caring for an elderly narcissistic mother with dementia. For me, it was the biggest challenge of my life and nearly killed me.
My Experience Caring for an Elderly Narcissistic Mother with Dementia
Before I go further, clarification is probably needed as to how this article qualifies as a health subject. Since this is a health blog based on the 8 pillars of holistic health, some rationale may be necessary.
I will be categorizing this post under a few of these health pillars including social, financial, and emotional. My premise is that if caring for and elderly narcissistic mother with dementia is handled properly, the main caregiver can maintain health. If the situation is not handled appropriately, the caregiver’s mental, financial and emotional health can and will suffer.
This writing is not designed to be a step by step guide to follow but more of an account of what I experienced. The gory details may however serve to help you better understand what happened and how it may also occur in your situation. There will be a summary at the end on my suggestions.
Since you have found this article, it is likely that you already understand that your mother is a narcissist. It took me until I was past fifty years old to pinpoint what her “affliction” was. I knew since a child that she was different and often obnoxious to family members but did not realize until mid life that it was an actual mental condition. You may have had a similar journey.
In finding this article, I will assume your familiarity with narcissism but maybe not so much the dementia part of the equation. If you thought that your elderly mom was a challenge your entire life, just stay tuned for the grand finale! Bear with me, I still have a wicked sense of humor and you will need one also if you plan to survive the coming challenges!
Before I delve into the story, I want to clarify where my mother was on the narcissistic scale. She was definitely a malignant narcissist that went through roughly a six week cycle since I can remember. By this, I mean that she would build up such terror amongst family members during a cycle that around the six week mark, everyone wanted to kill her. She knew this innately and would dial it back completely at that point and act loving and caring.
I recall thinking that her insane behavior was over and things would be ok but by the time I was around ten or twelve, I knew it was just a cycle. She did know what side her bread was buttered on and was a very good housewife as far as keeping house and cooking. She tried working a couple of times but quit each time within a couple weeks like a lot of narcissists that cannot follow through.
As an adult, I got into a partnership with my father and bought a small music store for a little over 10k in the mid seventies. He died only a couple years later and my mother sued me for 100k! I had been sending her a few thousand a month for nearly a year after his death when she decided to really get me. My father left her a millionaire as he was a top executive with an international firm for many years. I told her that I worked the first year without pay and then only took out $125 a week until dad died. Business more than doubled the month he died and skyrocketed under my direction.
She didn’t care that it was just becoming profitable and pursued it with an attorney. I told her that she could have the store so they backed down to 50k. So I paid her 5 times the original cost just three years after opening in spite of my documented equal partnership with my father. I could go into so many other horrible acts she pulled but wanted to lay the groundwork of her level of narcissism so you might better correlate your situation. Most narcissists in my experience will cheat, steal and lie to get what they want so I suspect that you can relate.
My brother, also a narcissist, had been asking me for years about who is going to take care of mom when the time comes. I always laughed because he knew how impossible she was and just thought he was joking. He wasn’t and even though he was retired when she got dementia, he refused to take part in handling her caregiving and put it squarely on me. He knew that I would do whatever it took so I was left to deal with it by myself.
So, around the time mom was in her mid to late 80’s and widowed for nearly 30 years, my brother and I noticed odder than normal behavior with her. She began calling me saying how her next door neighbor was pulling shenanigans on her. He was a DEA agent and I thought immediately that she was concocting something to jack me up. I went over to her house and she said that he was ringing her doorbell in the middle of the night and calling her. I asked a few questions and knew right away that this was a load of crap and not totally unusual for her to demonize a neighbor.
She kept on this story with daily calls to me and my brother and he actually seemed to be falling for her story. It escalated to her calling the police multiple times with follow up interviews with the next door neighbor. In spite of this insanity, she kept insisting that he was doing all these covert attacks on her but without evidence. Around this time, I was over checking on her and found the microwave totally melted and must have been on for hours or days and she hadn’t noticed. She also got into a couple of small fender bender accidents but she was always a terrible driver and did not automatically assume the worst.
She drove the neighbor crazy to the point where he had to move! After he left, she began another story and this is when it was becoming more apparent that something was different. She was losing her short term memory also but nothing severe and could recall in detail, events from her childhood.
I decided to go with her when she had a doctor’s appointment with our family dr. since my father was alive. He was a Chinese guy named Tsong. Nice fellow that had his challenges with her over the years for sure. While I was there, I asked if he could test her for dementia and he laughed. This was not because it was out of the question but as though he was saying, your mom has always been crazy. I believe he thought that I was over-reacting to her normal crazy behavior and blew it off.
She got noticeably worse over the next month or so and I went with her a couple more times to the doctor and he laughed it off until I got pissed and said, I need you to do something! He saw that I was angry so he asked her a few questions as he nervously giggled. Rose, who is the president of the USA? Her response was something like,, oh c’mon, what’s wrong with you?
He asked a few more simple questions and she was getting mad and denigrating him as he recoiled and laughed nervously. I finally had to intervene and say, hey doc,, demand the answers! Finally, he spoke to me outside of her earshot and said that she may have a little dementia and probably should not drive any longer. He wouldn’t say this to her face for fear of getting slapped:)! So the process began and boy did it get worse.
Longevity ran on my mother’s side with my grandmother making it almost to 100. I figured mom would live like most of her older sisters well into their 90’s. She drove my father to an early grave at 57. He told me shortly before he died that he didn’t want to live any longer. Mom made his life miserable on a regular basis, so it was not surprising.
Even though mom was casually diagnosed with dementia by Dr. Tsong, she had not lost her ability to be a full blown narcissist. Shortly after her diagnosis, my brother began pressuring me to take care of her. I still had my music company that was online and no longer a storefront but I also had a private investigation agency. He was retired yet acted as though it was my duty and kept on hammering me to deal with her. He dug his heels in so I figured that it was up to me and it was.
I lost a fortune to an ex wife and had to sell my house shortly before this all went down so the decision was for me to move into mom’s house since she was adamant that she remain at home. It took me a few weeks to make arrangements before I moved. Just about a week before my scheduled move, my brother called me and said that his daughter was going to move in instead to take care of mom.
He knew that I had made all arrangements but wanted to make it appear that my moving in was a gift of some sort. His daughter had been suffering from a long illness and I knew that this was just a ploy to mess with me and since denied asking her to move in with mom. The day I moved in, he said to me, don’t eat her food! Typical narc move and he became a thorn in my side by not only disassociating himself of the duties but bad mouthing me to family members. What a guy.
The fun began almost immediately with mom. I had forgotten how awful she was since it had been 40 years since I lived with her. At first, she was pretty much the same as always in demanding attention with the same MO. I was still trying to do my businesses which she disrupted as much as she could. I found myself working into the wee hours after she went to bed and burning the candle at both ends. This was nothing compared to what was next.
I realized that even if I went to the supermarket to get her food, she would call me and ask where I was and when I would be back. This became much worse and to the point that anytime I would leave, she would call immediately and be angry that I had left the house. I realized shortly that this was not going to work so I began looking for caregivers. I thought that if I could have someone cover during the day, I could get work done and get away from the craziness.
I got a few recommendations and did some interviewing. After a few weeks or so, I settled on an agency run by a nurse that could place caregivers that would come to the house. From the time the first caregiver showed up, it’s all a blur. It went from bad to worse because now, mom became the royal queen and mob boss sitting in her lounge chair all day, dictating and watching tv.
I hung around for a week or so when the initial caregiver started and within minutes of meeting her, mom sized her up and went to work. She attacked, denigrated, insulted and belittled the caregiver immediately like a sport. Mom had a captive slave that she could unload on like me. At least now, I could leave for the day and work but it was not without constant calls wondering where I was and how I needed to fire the caregiver. Caring for an elderly narcissistic mother with dementia was about to get much worse, sorry to say.
The Downhill Slide Begins
Within a month or so, the caregiver agency was on the second or third person as the first couple had quit. Spoiler alert, I went through over 20 caregivers during the time she remained at home! Mom had become a full blown monster abusing the caregivers and me.
I was desperately trying to salvage my musical instrument business that I was unable to attend to properly while handling mom. My make or break was at the upcoming international trade show convention where I was going to introduce a new and revolutionary drum set design. My design received a top ten most innovative award that year and was hoping that it would steady the ship. Before leaving for the show on the first day, I implored mom to let me do my business and not call. She had caregivers in place, and I needed to focus my attention to the next four days.
Within an hour, the calls began. Call after call saying that the caregiver was abusing her and she called the police. I spoke with the caregiver and she said it was all untrue. I told her to keep mom from calling me but she couldn’t so I shut my phone off and my mind was gone. When I finished the day, I turned my phone back on to find over 40 messages from mom!
It began with asking where I was to vile messages like, “you sonofabitch, I am calling the police on you”! The entire four days were the same! It was a disaster even though I had a lot of interest, my mind was not focused as it should have been. I realized it was over and sold the business at a distressed price because it was only going to get worse.
Back to mom and her tactics. Her game revolved around eating. To this day, I do not know if this was real or part of her narc personality at play. I would usually get up and make the queen breakfast as she sat on her throne in the morning. I am a pretty good cook so she would get a nice, well-rounded breakfast with eggs, fruit, bacon, coffee, etc. I would serve her and try to nibble something but she would complain that maybe there wasn’t enough cream in her coffee or the toast wasn’t perfect.
This would escalate and the game was on to where she would get irate that I wasn’t feeding her as she was eating! No kidding, this was now the norm for each meal and throughout the day. Maybe this game was so I could not get anything done and it worked. I found myself unable to leave because of the tantrums and anger. When I did leave, the caregiver would report that she did this to her also. Mom did this all day! Food, food, food! We were operating a restaurant for her and it was never ending!
As she was eating, she would be calling me or the caregiver a son of a bitch, etc for not feeding her! I would say, mom, you are eating right now and all day! Her response would be that curled up lip followed by shutup! The food bill was becoming outrageous! My do nothing brother would pop in and check the refrigerator and tell me to not feed her certain things or desert, etc and leave. He was the self appointed overseer.
Months went by with caregivers coming and going due to the abuse. Mom, at some point around a year into this became totally unmanageable and I went to see her doctor. I implored him to prescribe something, anything to modify her behavior. He hesitated to do so and it got worse. Mom was now experiencing sundowners syndrome maybe closer to two years into it. The caregiver would leave around 5pm just in time for mom to go completely crazy with me!
I was living in hell because my day just started with her going off the deep end around 6pm. I could see the switch go off in her eyes! Paranoia and psychosis would set in within minutes. She might get up and go into what I thought was the bathroom but instead be calling the police and saying that I was trying to kill her!
This happened many times. I would try to talk her down when I saw her going into this state and almost did it a couple of times where she wouldn’t go totally mad. I would tell her what was happening and that she would be ok in a while and to just relax but it never totally worked.
Like I said, it was all a blur at some point so my time frames are probably not very close but you get the idea. She lived to 92 and it all started, at least noticeably, around when she was maybe 86 or 87. It was around five years of living hell.
I finally got the doctor to prescribe something. I think it was Exelon patches but can’t recall for sure. He said it was quite dangerous and could kill her but I was desperate and somebody might kill her by the way she was behaving! The combination of drugs became overwhelming at some point that almost needed a spreadsheet to deal with! As I recall, it was around $800 a month in meds! They did very little if anything to help and her behavior remained the same.
A Potential Reprieve? Not so Fast
My girlfriend at the time could see me going downhill fast and convinced me to get caregiver’s day and night and move out with her about an hour away. I decided to give it a try and drove back on weekends. It seemed to be ok with the Filipino caregiver and things looked better for a while until that one left. I had to move back after a few months to deal with the fallout and it began all over again.
I was becoming desperate and the agency was running out of caregivers to place. I had to go outside her agency to find fresh blood. I was back covering days and nights until I could find another victim. It appeared that I finally found a winner that told me she had over 20 years dealing with dementia patients that were challenging. She told me, don’t worry Dave, your search is over. She spent the first night with her and I left feeling very good about things.
The next morning I arrived around breakfast time to see how it went. The veteran pro caregiver met me at the door and said, this is not going to work out but I am sure that you will find someone and bolted to her car never to be seen again! Narcissism and dementia is the perfect storm my friends!
It was intolerable and I was beyond wiped out with no backup. I made the decision to put her in a home and wish I had done this at the beginning. I found a nice, professionally run operation out of a residential home that had about 5 other patients. They ran a tight ship but drugged all of them up pretty well also. Mom was still a pistol but seemed less outrageous assuredly due to the drugs.
Unfortunately, it wasn’t more than a few weeks before mom was hospitalized and then living at an outpatient facility after improving that was more of an institution with probably a hundred or more patients. She wound up in and out of the hospital over the next few months with her health declining.
Alzheimer’s sufferers lose the ability to swallow so she choked and stopped breathing at one point but they brought her back. She did seem much less confrontational and serene if that was possible but again, they don’t mess around and drug patients heavily. Mom did get to meet her only great grand daughter when my daughter came to visit knowing the end was near.
The strangest thing happened that you may have heard about. Mom’s doctor said that she had no more than three days to live and my daughter was due to come out in three days. She went into a coma and I figured the visit would be too late. Three days later, mom wakes up and appears to be completely normal! It was like the resurrection!
My daughter and grand daughter arrived at the facility with mom and I waiting outside, and she was wide awake and alert! She was able to have a nice conversation and meet her great grand daughter and spend the entire day visiting! My daughter flew back home the next day and later that day, mom went back into a coma and died within 48 hours!
Hindsight is 20-20
Everything shuts down along with the ability to breathe because the brain’s motor function portion is eaten away.
So, that’s a very rough version of the story and I promised my recommendations so here they are.
Taking care of an elderly narcissistic mother with dementia in 2022 is probably about the same as it was for me 10 to 15 years ago. I suspect the drugs may have improved and the costs have assuredly gone up.
Do not put yourself in the position I was! If you have several family members helping out, maybe, but one or two cannot realistically handle caring for an elderly narcissistic mother with dementia!
Put them in a home or facility and if you are close enough, visit them but do not live with them!
It’s quite simple because had I just done this from the start, things would have been much better all the way around. We realize that most of us want to stay home if at all possible, but we cannot sacrifice our lives for people with narcissism and dementia. It is not human!
The solution is simpler if you have lots of money or no money. What do I mean? Costs were roughly 60 to 80k per year for her and probably closer to 100k plus in 2022. These costs will bleed most people out as it did in my situation.
I failed to mention this gem. Mom cancelled her supplemental Medicare insurance around the time this all began! When I found out, she responded by saying, “I have been healthy and figured it was a waste of money”! I was beyond astonished, and mind blown! This insane maneuver took away much of the drug coverage and some of the care giving options.
It would not have covered all the caregiving but was told that without that supplemental insurance, she was only eligible for once a week caregiver visits. These visits were a joke and useless. The nurse would take her blood pressure and pulse and sit and talk with her for maybe a couple hours. It was not even close to caregiving.
So, as costs began burying us, I sought out options. I called all the government agencies and Medicare and the common theme was for her to buy or pay down her finances. What? I couldn’t understand the terminology and finally got clarification. They were saying to spend all the money so her net worth was under $2500!
Yes, spend money randomly so her bank account could get under this threshold and qualify for more services! Go broke, get help, was the solution. What a broken medical system! This “solution” still did not give all day, every day caregivers coming to the house but more geared for some type of institutionalized situation. I did not pursue this and gave up on receiving any monetary help.
Conclusion and Suggestions
My point is to pre-plan as there is no playbook and trust me, this entire exercise is not something taught in school. Once this responsibility becomes reality, it quickly becomes overwhelming, especially caring for an elderly narcissistic mother with dementia! Don’t be like me, in denial and preoccupied with work and unprepared for this nightmare.
When this situation rears its ugly head, you will be like a drowning person just trying to tread water! Caring for an elderly narcissistic mother with dementia will not allow you time to breathe let alone do work, conduct financial planning or anything else constructive! You will be targeted for destruction and mayhem!
Look into insurance and caregiving options early and educate yourself. If you are already in the midst of it and struggling, there are a few government institutions that can help a little in guidance but not much. Depending on the financial status and present insurance, you can either shore up the insurance or seek the low-income assistant options if assets are nearly zero. Do it asap and have a living trust setup if your elderly narcissistic mother with dementia still has most of her senses!
After you have handled the business end of things, you can sleep at night a little better unlike my situation where it was torture and horror while watching finances disappear!
There really isn’t much more to say. If you decide to go my route, you can kiss your life and health goodbye, so you have been forewarned. Just don’t do it and skip the guilt because they are narcissists to the bitter end and would not be there for you. I loved my mother in spite of all her insanity but maybe it was Stockholm syndrome. She wasn’t always bad, all the time but they will be relentless to the end. Save yourself and leave it to the pros and you will be much better off.
You may have read about how narcissists not only don’t get better with age but become worse and I can attest to this. Do not assume that dementia will make your mother an innocent angel somehow. You may even daydream that she will become docile and compliant as the disease progresses as I did. It does not happen! I suppose if you put enough drugs into her like the institutions did, the outrageous venom subsides somewhat, mostly because they take more naps. You can forget hoping the narcissism will go away.
I am sorry that this has not been a feel-good story, but it will hopefully give you some insight into what to expect when caring for an elderly narcissistic mother with dementia. Thanks for reading and best wishes! Pray for deliverance and you will come out the other side.
