She is 94, and in addition to severe dementia (presumed to be Alzheimer's), she also has a lifelong underlying mental illness that we believe to be Narcissistic Personality Disorder. It has become exacerbated with age. I have some disabilities, but I've been her sole caregiver for several years. She is usually fairly clearheaded for a few hours in the mornings, but by late afternoon, she becomes completely delusional, unable to perceive logic or recognize reality. And whatever delusional idea she gets, she is adamantly committed to it, to the point of trying to leave the house, and violently attacking me when I have to stop her.
Tonight, she swung her walker at me (she's very strong when she's angry) and I grabbed it in mid-swing to keep from being hit -- and she lost her balance. I caught her and eased her down to the floor (I am no longer strong enough to hold her up), but she did scrape her elbow. Now she claims I knocked her down, and she's going to have me arrested. (She will almost certainly remember none of this in the morning, thank goodness.)
This is the first time she's gotten hurt during an attack, and I'm worried that I may no longer be able to keep her safe. I'm also worried that the crushing pressure and anxiety and desperation of all this is going to end me. At what point do you give up and do what your mother has told you all your life you must NEVER do, "Don't you EVER put me in a home, I'll kill myself," ever since I was about eight years old. I'm trying so hard to fulfill the promise I made, because I think her few lucid hours a day would probably be lost if she were among strangers. But I don't know how long I can continue before I break, physically or mentally or both. How do you know when it's time to give up? I don't want to be selfish. I want to do the right thing for her.
My other suggestion is to avoid calling or visiting during sundowning hours. Everything is ten times worse in the evenings, and when I speak to mother during those times I swear I've jumped down the rabbit hole for real! Figure out her schedule, once she gets one, and tailor your visits and calls around it. If the histrionics get too much over the phone or in person, cut the call or the visit short. Keep in mind this is an adjustment for BOTH of you so don't allow yourself to become a whipping post out of misguided guilt.
It will all work out. Good luck!
I know this sounds odd, but I use a technique my former business partner and I would use with our (musician/artist/rapper) clients. I was the good cop. My job was to hang out with them and help them write or engineer their recording or whatever and feed them if they got hungry and he, the bad cop, was always off having work or social anxiety while also funding everything. I would say "well I would buy Josh said no." They'd hate him for it, not me.
My point: I now use my moms persistent lifelong belief in some shadowy malevolent "Them" to justify things like baby locks and deadbolts. I tell her truthfully "oh I know, it's a pain for me too, but you know how they are (roll eyes here.) If I don't put them up they'll say I'm not taking care of you. Let's do a puzzle or something, we can't let them ruin our day!" My mom is so contrary that she is immediately all "yeah let's, They're jerks!" I was surprised but amused and thankful that this worked like a charm! I had considered a white lie a last resort.
On the whole "I'm gonna blame you for my elbow scrape" thing... My mom loves this horrible little dog I adopted from a friend as a favor well before I moved her in with me. Doggo is somewhat frantic generally (she's a pugwawa) and scratched her on the hand really badly while I was off to walmart one day with a friend for groceries. She didn't want to blame the dog (who was honestly not at fault and would never hurt her grandma on purpose) so she said I did it. "Um mom I wasn't here." My friend: "miss penny we were at the walmart getting you groceries." Mom knows damn well I didn't do that, she was just embarassed that she got the doggo excited and didn't want to get the dog in trouble. Your mom is just lashing out at you bc she is ashamed she did that herself. You are doing amazing and don't let anyone with a mental disability that separates them from reason tell you different!! Social services and animal control are so... Antisocial sometimes depending on where you live. I've heard some horror stories. It's just as normal for us to be anxious for ourselves (or the dog) as it is for our moms to be mean about admitting what's their own doing. Today my mom and I had a great talk (lucid day) and she admitted that she'd been making a mess of herself to upset me. She apologized. Even drank her water without complaining... There is hope!!
Late in the day, nothing I can say or do will make her understand that home is no longer an option, because I'm not physically able to do for her what she needs done. She just sobs, and then gets angry and won't speak to me at all. It makes me feel like a monster.
The nursing home is a very nice place, and there are pet birds and bunnies and regular therapy dog visits... the staff is kind and really wants to help... and Mom agrees on all this, in the early part of the day. But when she starts to sundown, there is nothing good in her life at all.
Your response helped me stop crying and get some perspective on things. I've been there to visit every day so far, but that can't continue, because it's 50 miles roundtrip, and I'm too poor to do it that often. But oh, to know that she's SO sad when I'm not there... it's unbearable. I've set her up with lots of books, magazines, puzzle books, notebooks to write her memoirs in, and painting supplies. I need to bring her colored pencils. I'm getting her a radio, but I need to find a way to secure it to her bedrail, because some of the other patients are so confused that they just wander in and take things, thinking they're shopping.
I think the key is activity, and I need to find more things that are easy for her to do even when I'm not there. I know it's early yet, it'll be a week tomorrow night since she moved there from the hospital... maybe she'll settle down with time. Please tell me she'll settle down with time!
Thank you for your responses! It's really good to hear other perspectives and learn from your experience.
Things are WAY better. I got them to stop the Haldol and cut way back on the Seroquel... and they've added Norvasc for her spiky blood pressure, instead of using Clonidine when it's high -- not sure how that's working, but I think I like it better than Clonidine.
Mom was clearheaded, calm, even funny all day yesterday and today, until confusion set in around 4:30 or 5:00 (sundowning). It's a battle to get her to understand anything in the evenings, but I stay patient (well, I FAKE patience), and eventually, she is reassured. I will get there extra early tomorrow and make my pitch to the hospitalist, the telepsych doctor, and the social worker: I'm convinced that recurring UTIs have been the trigger behind the rages, and now, with professional care and regular showers (as opposed to sponge baths, which are all we can manage at home), plus a heavy-duty cranberry supplement and a renewed commitment to drinking water, I believe she will be a peaceful, pleasant patient.
Cross your fingers for us!
Remember to take care of you and breathe! Hugs 🤗
I understand how hard it is to place your loved one in a facility but you have done your best. I don't mean to be insensitive but your sacrifice will do nothing to reverse her disease. It is not selfish to take care of yourself. Your not giving up, your finding a better solution for your Mom and yourself. You can visit her in the morning and see her for her lucid hours. The promise you made at age 8 was done with an 8 year old mind, it is not longer valid. Not only do you want to do the right thing for your Mother but you owe it to yourself to do what's right for you.
G-d bless and help you, Sleepless1
The IV line was for a(nother) uti, yes?
So is that treatment now under way again?
I'm never one to blame hospital staff for being reluctant to get bitten (my daughter's a doctor and although I may have laughed about what happened when she patted a sweet little old lady's hand in the ER it really isn't funny); but then again there is a balance to be struck. There also has to be due consideration for the causes of the risky behaviour and whether they're still there. So I don't blame you either for being your mother's advocate, and neither should her health care team.
I don't know if there's any such thing in your hospital: in ours, we have PALS offices - Patient Advisory & Liaison Service. I'd be surprised if there isn't some kind of equivalent where you can find help with communication and advocacy. Worth asking?
I am so sorry to report that we have snatched defeat from the jaws of victory. The night before Mom's planned transfer to a beautiful SNF, she had an incident. Her IV line went bad, and they needed to replace it, but she refused. They insisted, and she became violent.
The transfer was cancelled, because the SNF wouldn't take a violent patient.
They decided that Mom should spend a week or two in a psych hospital to get her meds tweaked by experts. The idea is to find the combination of drugs that allows her to function as well as possible, and then see if she's still an SNF candidate.
But in our county, a "mental health judge" has to approve that plan, and he won't if he considers her problem not mental, but merely medical -- dementia, in other words. So after years of covering for Mom, I find myself now recounting the abnormal behaviors of the past, trying to demonstrate that there is mental illness as well as dementia.
Meanwhile, the hospital is so afraid of my 94-year-old mother that they are loading her up with so much Seroquel and Haldol that she has been virtually unrousable all day long, just from her 7:00 am meds. I am trying to put a stop to that. This, of course, makes me look to them like a meddling ignorant layperson who should just shut up and let them do their jobs. But I'll be damned if I let them drug her to death!
I'm so tired.
When you promised not to put her in a home it was also implied on her end that she would be acting rationally & not be physically abusive to you - even though her mental decline was not on purpose it still has happened so as I see it she broke her implied promise to you so you are now absolved of your promise to her
Get her into a home ASAP before you break & join her!! - your promise was not to the mom she is now but to the woman she used to be .... the same body but not the same person or personality - these promises were made probably under pressure from her & without you fully understanding what was involved which negates the promise
When [not if] she is being taken care of 24/7 by professionals then you will become her advocate & can make sure she has all she needs - don't worry about her 'getting worse' there as she is getting worse at home too - the fact that you couldn't keep her from falling & scraping her elbow is the red flag here that is an alert that you need help to deal with her because you can't continue on your own
also loved that your dad was there to help! I believe!
I will believe with you that this is her forever home.🤗
By reducing her dose of Seroquel and adding Remeron, the hospital has wrought a miracle. Mom is so much calmer and more rational!
And with the help of my best friend, his sister, and her friend who works in eldercare, I visited eight nearby rehab places and found a skilled nursing facility I think Mom will like, with both rehab and long-term care!
Ginkgo trees were very special to my father and me -- I wear a ginkgo leaf ring in his memory -- and when I walked into this facility, the first thing I saw was an arched ceiling painted with beautiful gingko branches! It felt as if Papa sent me there.
And everything about the place and the people felt good, too, so in the morning, we'll transfer Mom to this rehab center, and we'll see how she does. Her attitude right now is very positive! I'll stay with her the first night, just to be sure she feels safe.
I feel very good about this now... and that is in large part because of YOU, total strangers who cared enough to help me see reality more clearly and make better decisions for my mom... AND me.
You are good, kind people, and I thank you truly, from the heart.
You are are an angel and I think being watched over by an angel- other wise you would have hit that truck. And we wouldn’t be able to try and offer advice any longer.
Please ask as many people on staff how to get you mom placed someplace safe. Some nursing homes won’t take violent clients.
Your health is more important. Please take care of you first.
Your mother has lost her reasoning ability.
You must start to do what is best for your health and well-being.
Let me start by saying my heart and my prayers go out to you. There is very few things that can put us in such a heart wrenching circumstances as where you are now. I faced the same delima with my mother several years ago. The feelings of guilt and failure overpowered me at times. Reasoning on the entire situation helped me get thru it as well as all of the wonderful love and help I found at this site.
Something you need to keep in mind is why you made the promise that you did to your mother. Wasn't it because you love her very much and have always wanted her to have the best care? Reaching a point where you need help does not mean you have failed. And placing your mother in a facility where she can be cared for by people who have been trained to help our loved ones with dementia means you are still trying to do the very best for your mother. You are still trying to do your very best to take care of your mother.
It is not an easy decision, I know. When I placed my mother in an assisted living facility I cried for a week. My mother was very upset with me and did not want to go, not because she thought I was breaking my promise but because she didn't understand what was happening. But very quickly she adjusted and became quite content and happy with her surroundings. As time passed and my guilt gave way to appreciation for the help she was getting, as well as my own mental and emotional health recovering from the trauma of the last several years, I realized it was the right decision.
Care taking my seem like a thankless job that zaps us of our own physical and emotional health, but that is not true. You have done the very best for your mother which means you have kept your promise. If your mother could be fully aware of what you have done for her she would be so grateful. And even tho that may not be possible now, God will never forget the love you have shown and the sacrifices you have made. (1 Corinthians 15:58) But as others have already commented, you do have to think of yourself and your own health as well. I hope this has helped you and we are all thinking of you and praying for you as you make this difficult decision.
Thank you all for your thoughtful guidance. Between your help ans Mom's ongoing behavior, it is clear to me now that she cannot live at home anymore.
Long story short -- we are in the hospital tonight with another UTI and the attendant madness that goes with it... exacerbated by Phenergan, an anti-nausea drug that seems to have completely wiped all reason from her mind. She is hateful, threatening, demanding, violent... I havrn't slept in 40-some hours, and once she was settled in here, she agreed I should go home and get some sleep. But an hour later, the nurse called and said Mom was demanding that I come back. I could hear Mom melting down in the background, and a second nurse yelping in pain as Mom hit her. When I talked to her, she made all sorts of hysterical accusations, threatened to call the police, and insisted I come back. I explained that it was almost midnight, I had already taken two sleeping pills, and there was a terrible storm and some of the streets were flooding, and begged her to understand how badly I needed to sleep. She told me "Fine, I 'll just have a heart attack and it'll be YOUR fault."
On the way back, I thought I was seeing a pedestrian overpass ahead of me... ans only realuzed at the last komoment that it was a semi slowly crossing the road. Almost skidded under the thing.
Came back and Mom wouldn't talk to me, and thrn wouldn't STOP telling me what a bitch I am... ghey finally got a sitter to keeo her from falling when she fights to leave and I came doen here to a waiting room. Now she's screaming, i have to go
Get recommendations from the hospital, friend(s), other professional, or 'research' for the best place for her age; dementia level; and psychiatric illness AND Sign her up!
She'll enjoy being among others like herself. She won't remember she said she'd kill herself. Don't worry about how she's gonna feel or what she's gonna think because, 'she does not remember from one minute to the next"
At THIS moment in time, you are risking both her and your health and safety. You gotta take care of yourself or You Will leave this earth before she.
Trust me, I know it'll be difficult, but you gotta do what you gotta do...Put on your Oxygen Mask, FIRST. You can't help her until you help yourself.
Keep Hanging Tough...You CAN Do It!