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 would say keep giving her a simple answer like what you said you tell her.
It's not surprising that she's still frustrated and you have to find a way to be OK with that.
Despite mom's previous plans including AL, when the time came that we needed to move her to a safe place, she refused to move ANYWHERE, but in particular if AL was mentioned, "PAUGH, I would NEVER live in one of those places!" We had to come up with some fancy footwork to make the move happen (she helped out by getting cellulitis just prior to the move, so one brother typed up a letter from 'Elder Services' at the hospital, telling her she moves to the place WE picked, or THEY would put her in their choice of place.) Mad as a wet hen, but she reluctantly went with the brothers.
With my LO, even though her doctor and neurologist told her that she had dementia, she would forget and ask about her confusion, memory, poor balance, etc. I focused on the positive, so, I'd say that her memory was poor, but, we were working on that with vitamins, medication, proper nutrition, physical therapy, doctor's care, etc. With her incontinence, I said that no one has a perfect bladder. This made her feel positive about her condition and gave her comfort. Of course, eventually, she didn't realize that there was anything wrong with her and she never asked questions about her condition again.
Although I don't personally know a lot of people who have dementia, I do interact sometimes with other residents in mom's place. So far I haven't witnessed any one of them acknowledging they have an issue. In my comment to another post, I mentioned our mother - she chalked being forgetful as OK, because she's old and entitled to forget sometimes! As we all know, sometimes = most of the time, and can recur in a matter of minutes!!! That was her stance and we just don't go there.
I worked with a 70 year old woman and she would say that when she forgot something, there's that oldtymers again. We all were able to laugh and help her with whatever it was. We all used it about ourselves as well.
To much seriousness over the unchangeable can create unnecessary anxiety.
Don't minimize the situation but treat it with lightness.
Could you do something like that? It doesn't have to be perfect. You could just divide the brain into sections and write words like 'memory' in one part of the section and 'balance' in another. Make it plan and simple. You could then just write little notes around or on the side of the picture about what you have said to her or how you want to explain it to her. Or how much love is around her. You could also do one up and draw in little red or pink dots for the fighting or good neurons.
It is just a thought to help you explain it. I do realize she will forget, but maybe it will be easier for you to explain it to her.
I am sorry that your mom has to go through this. It is one thing to have dementia, but its another to be aware of something being wrong and not understanding it:(
But I do like what you did - if it works for anyone else, great!
The long explanation I give my mom is that imagine your mind is like a room filled with filing cabinets. All your memories are all neatly filed away with neatly labelled file folders for each memory. Then somehow the files are all mixed up and the labels are lost and now you don't know which file is what or even what cabinet they belong in. Some of the files you may be able to find everything that was in them and re-label the folder and file it away, but some will never be recreated. They are just missing for good. I told her that is how her mind is. It is searching for a certain memory but it can't find where it is in order to access it. Some memories will be accessed and some never will. She seemed to accept this simplified explanation.
We could tell it bothered her but like you we were at a loss as to how to keep explaining it to her. She couldn’t understand why she couldn’t remember anything. Was awful to witness.
My brother also started referring to her "bewitching hour" and she knows as well as we do that after 6pm it's usually not even worth trying to do anything important, she accepts this as her brain and body just being too tired after 6pm and we have all started referring to her bewitching hour to lighten the mood or conversation. Humor helps a lot if you can use it and they can appreciate it.
Also great ideas about saying she needs more oxygen, which can encourage some physical activity, which is also good for her! Encouraging her to work on getting "better" vs replying with downer comments is great!
I often say we all need to get creative (and what works today may not work tomorrow, so keep creating!) because what works for one of us may not work for others. All suggestions are worth a try (and I am loving all the creativity being posted in this thread! Wish I could use some of the ideas, but our mom is one who doesn't acknowledge that SHE has a problem!)
Then there are times she gets scared and I try to comfort her and tell her I'm always there for her.
Our mom has never acknowledged a problem other than she's old and entitled to forget sometimes. God help you if you try to correct her!!!
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.
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.
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.
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.
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!