Lately my mother who has short term dementia has been unusually aware that her mind is not working right. She'll get frustrated and say, "I don't know what's wrong with me, my mind is all messed up this morning." "What's wrong with me?"
At first, I just said things like, "Don't worry, Momma, it's okay" but last time she said emphatically, "NO, it isn't okay!" And she's right. I've also tried explaining, "You have a condition called dementia and it keeps you from remembering things, but there's nothing we can do about it, so we'll just deal with it and work through it together." Although this works sometimes, she is still frustrated and, of course, she doesn't remember my explanation past the moment.
I'm wondering if anyone of you has had to answer this question and what response you gave that seemed to help calm their concerns.
Thank you for any ideas or advise.
I am registered nurse, and so is my mother. Even though we both were trained with the medical knowledge to understand an explanation of dementia, I know she is no longer able to comprehend this explanation...much less how it applies to her.
No matter what she asked, I always did provide her reassurance that I would be there for her, get her any help she needed, and always love her. Everyone has to navigate this pervasive challenge differently depending on their loved one's level of anxiety and level of impairment. Sometimes just holding Mom's hand and telling her "I'm not sure what's wrong, but I promise we will figure this out together" is all she needed to relax, and let go of the troubling thoughts she was having at that moment.
We don't use that or any other word in that realm or even discuss the forgetfulness - in her mind she's old and entitled to forget now and then (sadly it ISN'T now and then, but you'll never convince her of that!!!)
Yes, Mom will backfire with you on some of the reasoning that you use to try to assuage her. And this often caught me by surprise with Mom. While she had dementia, she still, at times, can reason. It's amazing.
Don't try to lead your Mom into believing that her brain/memory/life is okay...because it's not. I offer my Mom the options to believe, if she wants to, that whatever is happening to her is not under her control and that she just needs to roll with the punches. She seems pretty good, so far, with that analogy.
I think, it gives her some confidence that she is in control.
Hang in there, because the same questions will be popping up. Be prepared to answer honestly. In my Mom's case, I believe that she just needs to be reminded that she is going to be alright and that you are doing all you can to see to that.
Tell her you understand her frustration. You could even tell her it frustrates you at times as well.
then give her a hug and tell her you love her and reassure her that you will do everything you can for her.
Mom, “What is wrong with me?”
You, “is there something wrong with you?”
Mom, “I can’t think clearly.”
You, “What are you thinking about?”
What she is going through is terribly frightening and she needs constant reassurances.
End by telling her that everything will be okay, you are right by her side, she is loved.
If you tell her a thousand times that she is loved, you will be glad someday that you had the chance.
What you are saying when she asks is probably best. I wouldn't get into details that may be frightening (when she is understanding what you say). The word Alzheimers, for instance, may be scary during a period she understands thing. My grandmother called it - I'm having a short circuit right now. I know I should know your name, but it just won't come to me right now. Just be brief and move on to another conversation when you can.
* short answer(s) are best
* she won't feel so alone
* affirm her frustration and fear reflecting her words back to her as appropriate.
* Express words of comfort and support, such as "I'm here, I'll help you."
* I know some MDs refer to this as a small stroke. Be clear on diagnosis and use your own judgment in 'explaining' to your mom. I believe (I MIGHT BE WRONG HERE, although I have witnessed it) that some MDs DO NOT diagnosis dementia due to costs associated with a diagnosis. The diagnosis might depend on the severity and what kind of dementia. Sometimes I feel I am going down that road (I offer care management) although it could 'just' be anxiety and aging. The brain does change as we age. I am all too aware it is happening to me at age 67.
Telling the "truth" doesn't always work. In our mother's mind, even before dementia came into play, dementia meant you were "off your rocker", aka nuts. WE know that isn't true, but that is how she has ALWAYS interpreted it, so we avoid the D word.
In addition, she isn't like the others here, who acknowledge that something is wrong, but they don't grasp (or remember) what it is. For our mother, she's old and entitled to forget some things. We DO NOT try to change her mind, it isn't worth it!
The one time, before I knew much about dementia other than she was starting down that path, I corrected her when she thought my daughter was her cousin. She didn't argue, but rather clammed up. She was probably struggling inside to make sense of that! So long as what she thinks or does isn't going to harm her or anyone else, we let it be.
I was going to relate mom's little story elsewhere, but it fits here:
Moved mom 3 years ago to MC in a newly rebuilt IL/AL/MC facility. MC section was the last to open, and mom plus 2 others were the first residents. The daughter of one resident wrote a nice article about the place for a local paper and included a picture of herself with her mom. The paper was provided along with books and magazines for the residents. Doesn't mom read this article and see the picture and then go to the other resident and tell her that her family put her here because she's nuts! Thanks mom, way to go. Also mom, did it occur to you to ask why YOU are here??? ;-) We did not ask her that, but it does point out how she really couldn't/can't rationalize everything!
It's been getting worse lately, so I've graduated to, "Your brain is so tied up with just getting your body to work properly (she's severely disabled), it's shoved what it thinks is the trivial stuff into the background. It's concentrating on getting your internal organs to work, and sending the right messages so that you can manage to put one foot in front of the other." That made sense to her, and it's eased her frustration on a number of occasions.
Also, when I help her find whatever she's fishing for, and she says, "Yes! That's it!" it's the perfect opportunity for me to say, "See? It was still there; it just took a little extra work to get it out."
I've never mentioned the "D" word because, knowing her, it would send her off the deep end. She's upset enough with her physical disabilities as it is, and as far as she's concerned, her brain is the only thing she has left. To think that it, too, would be "going" would be too much for her to handle.
This is a tough one. It's all dependent on your mom's personality, the severity of her condition, and what she is best able to comprehend and accept. I hope you can find something that will work for you and your mom.
Acknowledging that this is hard can help. Don't pretend that it's just normal aging, though -- she knows her friends weren't having this much trouble, and she knows that most of them don't come around anymore. She may even have a glimmer of the things she did or didn't do that made many relationships fall away. If those around her pretend that everything's fine, it just adds to her frustration.
Validating her perceptions -- "I know it's frustrating for you when you can't find something" -- and letting her know you're here to help, or watch over her, or keep her out of trouble, or whatever the present concern is -- those are the things that are must helpful.
And then, change the subject in a direct and fairly radical way. Put on some music from her youth, or take her into another room as if something sudden, and normal, is causing the move. "I just heard the dryer stop, would you help me fold the laundry?" or "We're out of milk, will you come to the store with me?" can completely distract her from whatever was upsetting her in the moment.
If there's another person available, the fastest way to interrupt the pattern of her upset is for another person to come by and start a different conversation, because she probably will quickly lose the thread of what she was talking about with you.
So -- help her keep calm by helping her get out of her emotional upset, but don't pretend this isn't happening. She doesn't need the bigs words or a long explanation, but she knows something is wrong.
I used to say, you have a memory problem. It's not your fault and it happens to a lot of us and there are good days and bad days. They can't fix it, but we're going to hang in until they figure out how to.
Just remember, I'm incredibly proud of you. You're always going to be a good person; you're kind and thoughtful and nothing is ever going to take that away from you. Let's build some fun memories today if we can.
My doctor told me that people with dementia often remember things very clearly from when they were very young so I would try to lead him gently into telling me stories from his childhood. I would get to hear stories from his grade school, or high school, or the day he joined the Army. It made him feel better that those memories were so sharp and clear. I think it gave him a little sense of control in a scary situation.
On bad days the doctor told me to use his childhood name because it would feel so familiar to him. So Jimmy it was, those days. I would put on old music - they can usually remember all the words. Or I would make a dinner that he was very familiar with. Meatloaf was a huge comfort on a day when things felt scrambled.
I would never lie, I just tried to emphasize the memories that were clear. Even putting out an old brand of aftershave or perfume can bring a sense of calm because sense memory stays strong.
I hope that this helps.
Like Sweetstuff, 12LittlePaws and others suggested, I've stopped mentioning the word dementia and now stick with her simply having problems with her memory. Sunnygirl1, I love your compassion and focus on the positive. I have used this technique and it seems to be very comforting (to both of us).
Blessings to all of you who share in this journey. May the lessons of compassion, patience, acceptance and love nurture our weary souls.