This may be as much a vent as a question, but the question part of my post is this: How will I tell my mother her dementia is permanent? We are in the process of getting her formal diagnosis, but her forgetfulness is clearly far beyond aging memory loss. We went to a neurology appointment this past week for testing and examination to determine her diagnosis. They expected the testing to take 4 hours, but she was so unable to complete the activities that they shortened it to an abbreviated exam.
She is miserable and depressed about the state of her mind, saying things like "I'm useless. I can't do anything anymore." She wants to die and she wants me to do everything for her and wants me to be her one and only friend. She lives in ALF, but she refuses to associate with any of them. I try to be an encouragement to her, but I don't see any possible resolution to her memory loss. She is convinced this neuro visit is going to be the answer to her problems and all will be rosy soon. She also wants me to pray with her to tell God to give her her memory back (she comes out of the prosperity gospel movement which essentially believes if we have enough faith, God will grant our every wish).
As we wait for the outcome of the neuro visit, I am wondering what my next step is. How do I tell her "Mom, your memory won't get well."? Then how do I manage her expected grief? I am so deeply sorry for her - I can't begin to imagine what it must feel like to watch your mind leave you. I don't expect her to say "Oh well. No biggie." BUT - she also has NPD and that shines through her dementia clearly quite often. Based on long history, I expect her to become angry and bitter, and I expect her to take it out on everyone else. I will be pleasantly surprised if this is NOT the case. I just don't feel up for the next step through this. I guess I would feel better about my own ability to deal with it if I felt like I could walk with her as she works through it rather than being the target of her unhappiness.
I suppose I may be borrowing trouble, but I really do need to know how to tell her what is going on with her. I already feel like she is a boulder around my neck - I am her only child, only living relative really, and she expects me to give her every bit of my spare time. I've done pretty well at setting boundaries, but she is relentless at trying to break them down. I was scheduled to go out of town for work yesterday and be gone a week. I had prepared her for that and made plans to take her to lunch before I left, so I called her to let her know I was on my way and she was already manipulating me into feeling guilty for leaving, saying she didn't feel up to going but she could go later. When I told her I had to leave early in the afternoon and would be gone for a week, she started crying. Shortly after, I learned that someone else was able to go instead and I didn't tell her differently (and I won't - I need a break). Today, she called me and told me "something terrible happened to me". She recounted a story of someone drugging her in the dining room and her being completely out of her mind for 5 days. People taking her places and she didn't know who they were or where they took her, etc. When I told her she had seemed fine when I saw her Wednesday and her friend that saw her Thursday thought she was fine too, she claimed she didn't remember seeing either of us (that would not be unusual). I suggested she might have had a bad dream and she went into hysterics and said I didn't believe her. It just got ugly from there. After we got off the phone, I called the ED at the ALF and talked to her and we went over her meds and discussed what might have triggered the story, but came to nothing. My gut feeling is that this is her NPD acting out because I wouldn't be available to her. Something similar happened about a month ago when I went out of town overnight with my husband. I hate this.
I have found its best to keep the conversation positive and within bounds of what she can comprehend.
I hope this helps you somewhat. It is a journey like no other.
Why on earth do mothers/parents do this to their children? My parents had me & only me, proceeded to move across the entire USA when I was 4 years old. They distanced themselves from all family. They made very few friends over the years. They moved down the street from me when they retired and proceeded to dump their problems on my doorstep (I did not realize how much their marriage had deteriorated). As they crumbled I had no family support, I shouldered it all.
After 12 years of ongoing crap mom remains a brick around my neck. I totally GET YOU. I run a small business and I am lucky to get 2-3 free days per month, and now I am guilted into devoting that time to her instead of all of the things I have put off for the past 35 years due to career demands. I am not getting any younger either....sometimes I feel that it is my life vs. hers....
You cannot argue with an illness. You cannot reason with one. It is here and will not be getting better. It is best you are completely honest with your Mother that her memory is affected now by dementia, and that it will not be getting better, but that anxiety can worsen it. If she would like to pray, then pray with her. Things tend to get obsessive compulsive so diversion is necessary.
Nothing can be done really about what is happening now with your Mother, but there is much that can be done for YOU. Consider counseling with a Licensed Social Worker who does one on one counseling and therapy, who is trained in "life transitions" work. She will guide you on educating yourself. She will guide you on protecting yourself, and understanding your limitations going forward.
There is no magical answer here that can make things better. You and your Mom are both now in the shock and awe of this diagnosis.
Begin watching some videos, and reading online. Teepa Snow's videos, I hear, are excellent.
Remember, anxiety is a beast, and will make all of this worse for all involved. Reasoning and honest discussions, reminders and argument, nothing much will "work" or be remembered.
I am so sorry for this pain. Work with your Mom's MD to try to find a way to lessen the pain and distress for her. Educate yourself as much as you have time for. Remember that you aren't alone.
I managed to work through the after effects of her narcissism on my own in the years we were raising our children and I became a stronger, better person for that hard work. I'm very proud of that, although it often meant Mom and I were estranged. When she got back in touch with me three years ago, I had to really evaluate whether I was healthy enough to open that door back up and I decided that I was, and for the most part, I've been okay. I've been able to set boundaries and to call her out on bad behavior (and weather the narcissistic storm that followed), but right now - right now, it just seems ugly. It's time to take inventory of my reserves and address the problem BEFORE it becomes critical for me. I've put in a call to my counselor I have used in the past for an unrelated issue. I trust her, so I may see if I can work with her or see if she wants to refer me to a more specialized counselor.
When I first read what you said about being in shock and awe of this diagnosis, my first thought was "this isn't new. Surely the shock is past", but I realized that although I've been calling this dementia for the better part of the last three years, we are only just now approaching a formal diagnosis. She underwent neurological testing last week and we are waiting for a full evaluation which will result in a formal dx and I really am dreading Mom's reaction. I actually talked to Mom's doc a couple weeks ago and asked her to prescribe an anti-anxiety medication. It should be on board just long enough that maybe it will stave off the worst of her expected reaction.
I've been reading this site since right at Christmas when Mom had a major meltdown that sent me into a tailspin. I so appreciate all the discussion here. I guess it's time I go ahead and venture into Teepa Snow's videos.
Thank you, AlvaDeer, for your advice.
You have managed to find her good care, with a sensible and supportive manager. There’s not much more that you can do there. Your next challenge is to find how to let yourself off the hook, to feel better about looking after your own life as well, and to ignore all the fake dramas. Very best wishes, Margaret
She and I had not spoken for about 15 years until she called me out of the blue to come and get a picture I had "always admired". At the time, I couldn't imagine what she was referring to, but she had given away and thrown away enough things that were important to me that I figured I'd better go and see. That was how I found out her second husband had died a few months earlier. She had never learned to cook, so she was not eating properly and was very frail. It was also very clear that her mind wasn't what it used to be. After some soul searching and much conversation with my husband, I decided that out of love, admiration, and respect for my dad and my stepdad, I should keep the relationship open and do what I needed to do for her. She immediately arranged for me to be her DPOA, MPOA, executrix, and sole heir. She told her financial advisor that he should contact me and not her anymore - she didn't know what to do and she wanted me to make any decisions that were needed.
If Mom has a Dementia you cannot tell her she is lying. TV and dreams become part of their reality. Thats how her mind now works. You cannot reason with her she has lost that ability.
Has the nurse at the AL checked Mom for a UTI?
UTI was my very first thought! Thankfully, the nurse at the ALF monitored her very closely on Friday, the day she told them she wasn't feeling good. She checked her vitals frequently and questioned her about pain that corresponds to a UTI, but there were no indicators other than the mental lapse. She determined that Mom had not been eating properly and so coaxed her to eat throughout the day.
Interesting to me was the fact that the nurse said she said she was sick the day I supposedly left and that she was lethargic and mopey. In talking to her and trying to coax her to eat, Diana (the nurse) learned that she was upset about my leaving and noticed that she became more agitated when she talked about that. And then yesterday was when Mom called me saying "something terrible happened to me" and relayed the story about her being out of her head for five whole days after one of the other residents put something in her food that made her crazy. I called later in the day after I calmed Mom down on the phone and I talked to Diana to check in and see how Mom was doing. She commented that she was doing great, had been out laughing and chatting with other residents and was presently eating in the dining area. She was shocked to hear the story Mom told me - said that there had been no indication at all that she was traumatized in any way at all yesterday and she had assumed Mom had just had a touch of a bug and was back on her feet. Mom does not bring these types of things up with either the ED or the nurse, but rather solicits the ears of the aides and others who have less expertise in evaluating her.
I gave up some time back trying to argue with Mom, but rather - go along with the harmless stuff and try to redirect the more critical things. I realize that in her dementia state of mind things that are untrue are very true indeed, and even in her NPD mind, she has no concept of truth and deception, only of how anything affects her. Frustrating indeed!
Tell mom that she is safe,
Tell her (and she will forget) that her brain is broken.
Continue to set and KEEP boundaries. Yes she will try to break them down but do not give in.
If you have to leave for a trip GO. Reality is she may not know if you are gone for a day or two or seven.
You know she will be safe and cared for. Tell her that she is safe.
This will get worse before it gets better but the "better" means a decline that may mean that she has lost ability to talk or recognize you. You never know what the next step is with dementia.
If you have not yet I would talk to the doctor about medications for her anxiety.
Oh, the how to tell her...that really should be the responsibility of the doctor giving the diagnosis. He or she should still treat her respectfully as a patient and direct his conversation to her but including you. You will have to repeat his diagnosis to her as she will not remember what he said.
I asked her doc to prescribe something for anxiety a few weeks ago - and she did. I learned yesterday from the nurse at the ALF that the doc's office never conveyed that order to them, so she has not been on it yet. That in itself was almost a relief - at least I can know that this latest round of paranoia is not likely to be med-related. I also asked them to prescribe home health for her so she could see the psych nurse that comes to her ALF to be able to talk and perhaps get tools for coping. I learned from the ED at the ALF that her insurance denied that service. I let them know we would pay it out of pocket - just get her some services!