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.
You can no longer keep your mother safe and it sounds as though YOU may well die before she does if you keep up the caregiving.
You need a plan to get her into care. Call her doctor and the local Area Agency on Aging and ask for help.
If there is another attack on you, call 911 and have her transported to the hospital. Have you considered the posibility that she may have a uti?
This must be terribly, terribly hard for you. ((((((Hugs)))))). Please come back and tell us how things are.
The basis of her refusal to consider "a home" - we'll come to the meaning of the word home in a minute - is that it would be the end of her. But she has, surely, reached and passed the point where living at your home is going to be the end not only of her but of her daughter too. She is a danger to herself. She is a danger to you. This not only has to come to an end - it actually has already come to an end.
Be clear in your own mind and conscience that her fall and her graze were caused not by your actions but by hers. Suppose that instead of blocking her you had stepped back and away. She might well have hit her head - let's not even think about that. In trying to *prevent* injury to her, you are being bamboozled into anxiety that you caused it. You didn't.
The fact that you want to keep the promise that your mother extracted from you does not in itself make you capable of doing so. There is only one of you: she needs a team of people. Her challenging behaviours require skilled handling by professionally qualified people: you are an untrained family member, who has the further disadvantage of being emotionally involved and vulnerable. You CANNOT supply her needs, any more than if you were dead. How can continuing in this way possibly be the right thing *for her*?
Moving on to what constitutes "a home." A faceless institution where she would be left to rot in a wheelchair? Is that what we have in mind?
I just went for a quick trot round Google to see what the state of play is in your neck of the woods. Interestingly, I read: "The Plano area is home to world-class medical facilities, including those specializing in brain health and dementia care..."
There are numerous results for specialist dementia care facilities. What's important about these, though, is the emphasis some of them have on their *specialization* in dementia care. Please - GO AND SEE SOME. Your mother's nightmare is just not what they are like.
Just my 2 cents!
When you made that promise your intentions were good. However, promises about things over which we have no control are not really promises; they are either hopes or wishes. Hope is more for a desire that is likely to happen whereas wish, although possible, is unlikely to happen. All those years and since you were 8, you hoped or wished that your mother would be able to age in place. It was not your promise to make because you had no control over her and her health any more so than you did over the weather.
Be gentle on yourself. You have done your best including keeping her safe for a very long time, but it's no longer safe for either of you. And it's no longer possible for you to enjoy your mother. Is that really worth giving up just so you can keep a promise you shouldn't have been asked to make in the first place?
Countrymouse is right about Plano having top notch memory care!
Yes, I'm aware of the terrible effects of even a mild UTI -- but the truth is, she's been violent like this many times over the past three years, and thrown things and gouged and clawed, both with and without UTIs. She even bites me. It's a horrible thing, to see your mother bite you like a wild animal.
Yes, she is on medications, including Seroquel and Aricept, and I even have a small stash of Haldol for emergencies -- but it's impossible to get her to take a pill in the middle of an episode... and she has sleep apnea, so I'm terrified of giving her any kind of tranquilizer.
Yes, there are some good "homes" in the area, as well as some horrific ones -- she's stayed in a few for a week or so at a time, while receiving rehab and skilled care. Each stay has been a nightmare for her, and on one occasion, I had to move heaven and earth to get them to release her to ME instead of sending her to a mental facility.
I am beginning to look into the options... but it's all so terribly expensive. When she enters a facility and her income is taken to cover it, I will have to sell the house immediately, because my tiny disability income won't support it. So this will be a massive upheaval all around. I need to study and prepare to handle it appropriately. I hope Mom allows me some time to do that.
You are right, I know you are. Thank you so much for your input.
Earlier it was mentioned that you are in a co dependent dance, I understand that when you have been conditioned for years, it is almost impossible to see, but you need to step back. You need to put your own health and safety first.
Anyone who threatened a child with dying in order to get their way is mentally ill. I know that 8 year old child is inside of you, terrified that your mother will die, if you do not do as she wishes. But at 94, she is going to die one day, sooner than later.
You must ensure your safety. Your well being is more important than hers right now.
I know it is many hours after the triggering event. I hope you were able to get some rest.
You say that her stays in respite care have been a nightmare for her.
You are horrified - I'm horrified to read about it, I can only imagine what it's like for you - when your mother claws and bites and throws things. But what is going on in her head to make her do these things? - must that not be some other kind of nightmare?
It is horrifying and heartbreaking that her head is in such a condition. But the point is that she is in this state whether or not she is living with you. The sacrifices you have made, the heaven and earth you've moved, are no good to her.
You are going to be a better advocate and a better daughter when you are not under daily assault. Your mother will receive better care. It is better for HER that you make this change.
Why did you refuse the referral to the psych facility? I'm not challenging your decision then, just asking to understand it better. When was this?
Obviously I can't recommend a facility I've never set eyes on myself and can only find out about online, but what they say about their approach to dementia care sounds good to me and very relevant to your circumstances.
If you'd like me to name names just send me a private message - I hope this isn't a place you've already rejected!
This situation sounds so similar to what we went through. The stage your mother is at is excruciating for a caregiver.
The despair, exhaustion was overwhelming... it took me, my husband, AND a 24-7 caregiver to handle my FIL (and MIL... both with advanced dementia and physical issues) in our home, and we STILL couldn’t do it.
I know to many here who have to do it alone (you are all always in my prayers) that sounds like it should be workable. But, it wasn’t. It was completely untenable, and we are still recovering from the toll those years took on our health.
You cannot fix this on your own. It will be very, very hard, but you have to turn off the guilt completely.
Also, her lucid moments are probably less lucid than you think. And those nightmare stays at respite... you can’t allow those to add to your misappropriated guilt. Change will be difficult for her, yes. But living like this is no walk in the park either. You are basically at choosing between two evils of the same magnitude from her perspective... the difference is one of the choices allows you to live. The other choice does not help her and it hurts you.
The nightmare is what is going on in her brain, and it is something you can only help manage by being kind and loving to her and supporting the team with proper training in a proper facility.
The Noble Promise. I have less patience with that than I used to. In order to think kindly on those who ask it, I choose to think of it as a promise extracted in ignorance. It is certainly true that it is almost impossible - without having experienced it - to understand caregiving, especially for someone with dementia. But, remember, it is based in fear and self-centeredness to a large extent. It is not right for anyone to lay that burden on their child, no matter the child’s age and place in life. It is so very heavy. I watched my mother do exactly what you are doing (she felt stuck financially too) and lost her tragically to that decision last year. The stress literally killed her, and we lost our very good relationship and years to enjoy each other. I am sure you have others who don’t want to lose you:)
My biggest lesson in caregiving has been the fact that, especially for people whose tendency is to fix/solve/make right OR people with very soft, caring-taking hearts, we overestimate our ability to influence or control situations in life. Sometimes, we keep trying to force things that will never bend to us, and we break ourselves in the process.
As for your living situation, take that step by step... I believe there are resources that can help with that, especially if you have a disability.
But, honestly, you will be able to think more clearly when you aren’t defending your life from someone who should love you, when you can sleep through the night, when you can wake up in the morning and not feel the doom of Groundhog Day yet again.
((Hugs))
Are you calmer now? Just checking in to see that you are okay.
Take some deep breaths. Take a quick walk outside.
You won't be "giving up" when you take the necessary steps to get the help your Mom requires for her condition. Admitting that she needs more help than you can give her is the first step. So change the word: "giving up" to "providing for her".
There is the possibility that you have been brainwashed or gaslighted by someone your entire life, and there is help for you if that has occured. And I can understand your concerns about your living situation, the finances, and your own disabilities.
However, keeping things the way they are is a very dangerous way to live. Try not to view all the possible solutions at once, taking one step at a time.
You can get help, for yourself, and for your Mom. Right now you are in a crisis that may be more of the same over the next few days. Can you bring in someone? Even a friend to talk to, be a witness? Even for an hour? Is there other family?
No one can solve a lifetime of mental illness in a few days, but right now, safety is a huge concern. Calling APS for a wellness check may bring the support you need, a trip to the geriatric behavioral unit will allow for an assessment of her meds, and stabilize her so she will not be behaving as if an animal. Her coming home, or being placed can be decided later.
Caregivers here can help advise you, and will care about not only your Mom getting the help she needs, but will care about you. As usual, take the advice that helps you think this out clearly, and ignore what does not help.
By the way, assisting a violent person to the floor as you did, so she would not hurt herself more was a very brave thing to do! Asking for professional help is not a reflection on your caregiving skills, it takes an entire team of professionals to do what you have been doing.
you say that going in to respite care was a nightmare for your mother.
well seems to me the current situation is a nightmare for YOU. Why is ok for you to live the nightmare situation? Because of a promise you made? Promises can be broken.
what about YOU? Your needs and feelings matter just as much as hers.
forget about her respite nightmare and do what what is best for both of you. She needs to be in a facility.
MY 92 year old mother is currently in rehab after being hospitalized for pneumonia. Her dementia has worsened dramatically, and she was found to have had a stroke and is wheelchair bound. The Assisted Living Facility she's been at for over 4 years will not take her back, and has agreed to accept her in their memory care building, thankfully. I don't feel guilty about ANY of these placements because I am unqualified to care for her, period. I wouldn't want to, either, which is fine......i don't have to heap guilt on myself for any reason. Mom is cared for, I'm doing all the legwork and heavy lifting, finances, etc, and I'm managing to preserve a relationship with a very difficult and narcissistic woman. It's ok for you to follow that lead.
Be sure to get ALL of the facts lined up BEFORE making assumptions about having to sell your home. Have the social worker advise and guide you about filing for Medicaid.....they are very helpful and experienced in all of that. Go to visit a few memory care facilities and skilled nursing facilities that are recommended, and then choose one. Then let yourself off the hook and allow yourself the opportunity to take your life back, my friend.
A'll the best of luck!
My heart goes out to you in your situation, I can just let you know what worked for me to get in the frame of mind to truly Know when you have no choice or collapse
My fantastic health nurse brought up" she needs to be in a facility" for a Year...fell on deaf ears..I love my mother and am not putting her in a home
Well meaning people saying "you have to take care of yourself etc.,
also on deaf ears - because of the caring bubble life you are in you can only recognise that when you are Removed from it ie on holiday/break when other people are doing things for you..for the first time ever..
So what did work convincing me was:1. Emergency respite, arranged by combination of mums gp/health nurse/getting served a cup of coffee by a waiter, just for me, imagine! And a dozen other things on the holiday that normal people take for granted/on leaving the staff team called me over and asked me what was my secret on being so happy and joyful, seriously, they did ask! That's when I knew...
2. My most Realistic/blunt friend said"how you look now at the rate you are going, I'm going to lose my friend within a year" Find one of those for a real opinion, blunt as possible
3. Broke my ribs/fell out the kitchen door due to exhaustion, gp sent me on to A+E, on my own as mum had 1 carer due in so she was fine, sat by myself in pain till 4am there, and it was my birthday in there to boot, so eyeopener as in Im on my own with no care and if i was admitted, my mum would have no care either/thats what it takes to spur you on when things go wrong and you have no backup
So I hope this helps you somewhat, and maybe have a little drink to de stress your innards x
If someone else is managing the care, maybe you can still have nice times together.
From the description you have given, I believe you are doing both you and her a disservice by attempting to keep her in her own home. For her own safety, I believe she requires more attention and supervision than you can give her.
When you made your promise, there was no way you could have predicted all of these variables...any one of which could have led to your mom being placed in a SNF long ago. Again, for her safety and for your sanity, I urge you to look at other options for her care.
And yes, upon reflection... my folks did far more for me than any parent should have to, getting me through such terrible times long after adulthood. Maybe that's why I feel so beholden -- I truly had the most wonderful father in the world, and my mom has done the best she could within the limits of her illness. But I do understand what you mean, and I thank you for your input.
Are their particular times your Mum gets angry or worse?
Instead of you trying to stop her leaving the house, can the front & back doors be locked instead?
Would you consider staying in your bedroom with the door locked or held shut? With a phone. If there sounds of actual damage trying to break a door etc you must call 911.
Safety is your priority here. For you BOTH.
Any physical contact could result in a fall (as you well know) not to mention guilt, pain & potential investigated for elder abuse even.
I do have alarms on the doors, but I don't dare lock them from inside in case of fire. The problem with just staying out of her way when she gets violent is that there is hard tile at each door, and if she falls on it, she will break in a thousand pieces. So I have to keep her on the carpet. I can't even have a bedroom -- I sleep in a recliner in the living room to be sure I will wake up and get to her in time if she tries to leave. She DID leave once, in the dead of night, and walked a mile (to her doctor's office) on her walker in 22-degrees Fahrenheit and icy wind... that's why I installed the alarms. When the police found her, she was freezing and hysterical and shaking, and APS wanted to take her away because I had failed to keep her safe! I'm so afraid she might try it again, but as long as she doesn't figure out how to disarm the alarms, we're okay.