What do I tell my mom about her memory loss?

My mom has Lewy Body..I told her the truth. Then we watched a few videos of people who actually live with dementia. In her case Lewy Body dementia people. She tells me knowing what is wrong helps her feel better about herself. It is a disease not her being a failure in life.

Nothing. Tell her nothing about her memory loss. It serves no positive purpose and causes her negative feelings. To make an elderly person distraught by telling her, is counter productive, not your role, and not good care taking by anyone.

My Mom has always responded well with blunt honesty.
I tell her she has brain damage (dementia, strokes) Not bad, not crazy...just damaged. It always calms her down.
Sometimes if she's a bit more coherent, I can ask if she remembers what her Mom was like (Grandma had dementia and aneurysm) and it gives her a reference point.

Keep pills in pill cases with day and time - I never dole from the bottles anymore.. My mom is basically in the same boat. I also write everything down in a notebook, in her sight, on the dresser. When I refill her pill case I make it a pretty out there open thing so she can witness me filling it.

As it is I will forget if I took my own pills. They become so standard that its super easy to forget if you took them or not.

Same thing with my mom, MCI likely or actually the beginnings of dementia from COPD also. Her drs seems to think not actually dementia, no one is exactly saying she needs to be checked for it. Also had to move her here out of independent living during a COPD exascerbation (posibly COVID-19)so she was SUPER confused as to where the hell she is, specially after a bad rxn to ativan.

The book in which I write things out works. I also pretend I really can't remember very well which could backfire, but so far it has been helping HER to remember if I handed her something or not. I let her grump at me if I say "Ugh I'm forgetting", cause it then gives her something to do -- to remember if her airhead daughter gave her meds at the right time, versus being stuck like a 4 year old with me doling out her meds <3

hah maybe our moms can become pen pals :D

Edit: my whole family has always had the habit of repeating ourselves. Usually it would be..within 30mins, not within 30 seconds tho. She and I both have a look we get on our faces if we realize the other has been repeating themselves and so we get to smile crooked at each other all day.

yeh this sucks so much, but. it is what it is.

For your own sanity (not hers), you might explore getting MRI imaging of her brain. The MRI can show changes in the tiny blood vessels in her brain--small vessel disease, along with more white matter. These changes that show up in the MRI are the medical explanation for why her mind and behavior are deteriorating. These changes have a different trajectory than Alzheimer's. People with Alzheimer's go steadily downward. But people with small vessel disease can stay the same for a while, suddenly get worse, then improve a bit, then stay about the same for a while. If she has small vessel disease, she will have a combination of scary deficits plus amazing preservation of some skills and thinking. It's confusing for you if she's struggling to make a shopping list in the morning, and in the afternoon she's calling her financial advisor to discuss her account statement. A brain MRI could help you understand what's happening. And it's a way to tell her, "We're going to fight this thing together." Some people have had good results with prescription memory drugs, they preserve some abilities for a while. Good luck.

If she's asking the same question over and over, she has gone into the early phase of dementia. Don't even imagine she has "mild cognitive impairment" anymore. She now has dementia. It will not get better. It might have an unpredictable course of getting worse, then slight improvement, then staying the same for a while--but it will never get better. It will get worse month by month. You will be surprised how bad off she is just 6 months from now. Plan for a near-future when she can't drive for safety reasons, can't make reasonable choices about her own food intake, can't make decisions about her medical care, can't add and subtract, can't understand if someone is trying to scam her.

My experience---
My Daddy -- I lied to him, I did not tell him that he had ALZ. I told him this is what happens sometimes we remember sometimes we don't. He accepted it. I argued with him at first then after I read about ALZ then I stopped. I didn't try to explain things I accepted what he told me and redirected when he would ask a question that I just could not answer.
My friend -- told her mother that she had ALZ -- that day she went into depression. She stopped doing her hair, stopped crafting, stopped grooming, wouldn't take a walk, wouldn't enjoy outside, wouldn't cook she sat in her chair petting her cat for two years until she died.
Its your choice. Read all you can about memory loss. Watch your mom. See how she reacts to what is going on and make your own decision.
I have no regrets how I handled mine and my friend has no regrets how she handled hers.
Prayers because caregiving is hard!

The frustration at first with the repetition is understandable and normal. You will learn to redirect or enter into her mindset with her. She is as certain of what is in her mind as you are with your real world facts and she will not see it your way. Ever. Arguing is not good for her or you, so try to not do that when possible. You will learn to get things set up around the house to avoid disagreements because the mistakes will get worse and multiply. But it will be okay. You'll have to be in charge of the medications to make sure they are given properly. And most importantly, get help when it all becomes too much for you. You cannot do this alone.

I'm not sure what constitutes 'mild cognitive impairment which is more than normal old age but not dementia', to be honest with you. You'll have to treat this as dementia, b/c based on your mother's behavior, it sure sounds like dementia to me, based on my own mother's behavior. Fill up a pill box weekly; when the AM slot is empty, show it to her, same with the PM slot, etc. Not that this will work; NOTHING works when dementia is present and the arguments can get out of control in short order when they insist they're right and we're wrong. Nature of the beast. Which is why you should look into Memory Care Assisted Living for later on down the road if your nerves get fried & you want your life back. I had my mother in Memory Care for nearly 3 years, and the caregivers took exceptional care of her myriad issues, so if I had to do it again, I would in a heartbeat.

When it came to memory, I'd tell mom that yes, she had memory issues but she was 90+ years old, par for the course. Period.

In the meantime, I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4

Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Wishing you the best of luck with a difficult situation.

Please be honest with your Mom. Gently explain and yes, re explain so long as you think she might absorb some of this. I did this with my brother and his diagnosis of probable early Lewy's dementia. He was a real control freak, just like me, but he said that--thought he was not looking forward to what was coming--he was glad to know why he saw the world differently than he once did and than others do. And he was glad to know the reason for his hallucinations; came to look at them and speak of them as "items of interest". Would have been a marvelous test subject and would have loved doing it. He was a real talker.
That said, I could never have done 24/7 in home care and as an RN I was well aware of that limitation of mine. So there was no thought to taking that on. I think it is always best to be very certain, BEFORE moving someone in which does paint you into the proverbial corner, that this is a mission and a vocation you wish to undertake. If you have been on Forum for long you understand what you have undertaken, what the projectary is (downward) and how long this can last. We have seen people lose jobs, homes to live in, and even some sanity in attempting caregiving. I don't mean to scare you. I mean to make you think carefully about all of this. And I am so sorry that it has "come to this" for you and for your Mom. We all know. You aren't alone.

For good measure has she had a thorough physical exam to discount any other medical reasons that would impact her memory? Like a UTI, thyroid condition, dehydration, vitamin deficiency...? These issues are treatable.

Your profile says she has some memory decline. And, if she has the beginnings of cognitive decline, she is actively losing her abilities of logic, reason and empathy -- as well as memory. You won't be able to convince her that she already took her pills, even if you took a video of her stating the day and time and showed her taking them. She won't believe you.

Your argument over the pills is just a small taste of what's to come. It's not her fault, and nothing you do can stop it. Therefore you need to decide if you wish to be her 24/7 caregiver by yourself. Your profile says she has lung disease (COPD?) This too won't improve. Is your home ADA compliant so that she can get a walker or wheelchair into your bathroom? Does your home have stairs to access your car? There is much to ponder. You get to decide how much caregiving you wish to do personally. If her finances are humble, you should consult with an estate planner or certified elder law attorney and probably a Medicaid Planner for your state.

In the meantime, I've gotten a lot of helpful information by watching Teepa Snow videos on YouTube. It has taught me what dementia is (and isn't), how and why it changes our LOs, and how to better interact with people with dementia so that engaging with them can be more peaceful and productive as they lose their life skills. I wish you much wisdom and peace in your heart as you make decisions.

Messsge boards r tough for me.
A my bad type thing. I need to read responses than reply. cm summarized well. Structure is very important. Communication:.. I tell my father. Aging only goes in one direction and that isn't reverse but u can do stuff to slow it down..
Agree on a "slow it down time" and do activities for that. Structure important

I have a stubborn father with dimentia so that doesn't work for me but in my ideal world it would. It does reduce my stress level being prepared with an answer.
Also on this site it has been advised to answer repeated question first time then ignore any repeats, like u didn't hear it... Always verbally blame it on urself and not her... If something needs to be re communicated always blame it on urself. 'I'm sorry. I thought I told u,,'. meds r really important not to be messed with... So CM response is gold standard but maybe shifting from you did+I I didn't to something else like... 'I always grateful u manage ur meds so well and take them when u need them. U needed them a few hours ago and u handled it. I'm so glad u can do that. Not all people ur age.can u know'

Okay.

When she asks you whether her mind will get better, you explain that the changes in her brain won't get better BUT there are plenty of ways to help her manage, support her quality of life, and make sure that everything stays okay.

Re: the pills. You picked a very good example of why there will an increasing need for structure and clarity in her everyday routines. When your memory declines and you no longer have confidence in yourself (or others) to cope with the ordinary, you understandably get anxious to the point of obsessional about making sure of it. Simple solution: make a chart showing her medication and when it's to be taken; keep the times as close to the same as you can every day, and tick the box. For now, don't hand her the tablets - hand her the boxes and let her take the correct dose herself and tick the box. If she's used to taking the last dose when she actually goes to bed, do it then.

Looking longer term: another thing, besides cognitive decline or dementia, that does a real number on people's memory is stress. Stress of moving, stress of other people's vibes, stress of change and unfamiliar environments. It isn't only bad news for you, it's bad news for her too.

You say you moved your mother in two months ago so "she wouldn't be alone." Where was she living before? Was she alone but managing, or was she with somebody else who supported her who isn't there any more? Did you consider other options besides becoming her 24/7 primary caregiver?

thanks everyone.

We just finished a half hour or so argument about whether she took her anti anxiety / sleeping pill and the steroid the doctor prescribed for her cold and to help her breathe easier,

She said she was tired early so I got those pills out and gave them to her to take and she did. I left the melatonin as she wanted some supper and so I figured we would save them until actual bedtime.

So four hours later we are arguing because she didnt believe me that she had taken them because she always takes them at bedtime.
She demanded I give the plls to her but I had them in my hand and wouldnt. Then finally she said she wanted to take them out to the sofa where she thought she would sleep and I said no.

She said her memory wasnt so bad that she couldnt remember if she had taken pills and I told her it wasnt as good as it used to be and was more than old age forgetfulness but not dementia. She accused me of trying to make her sound crazy and saying her memory wasnt that bad.
We went through that a couole of times.

She pretty much stormed out of the room after that. I still have her pills hidden away.

Not sure if I handled it very well but I tried.

“I don’t know, but I’ll do some research to see if you and I can find some tools to help you with your memory”.

And it may be good for you both to do that. Exercise, good diet, an engaging hobby, social interaction with age peers, a daily multivitamin- all potential tools, and there are more.

If she is unduly depressed, a more refined evaluation by a trained geriatric psychiatrist/neuropsychiatrist may reveal more specific information may be more helpful to getting her help. Don’t hesitate to ask for more assessment, if she’s willing and comfortable with the idea.

For you- don’t fall into the “LonelyOnly” trap. Only children are not assigned the job of parent care on the day of their birth, and should not necessarily assume that role.

Get your facts together and try to be as objective as possible. You’re important too!

Duplicate, soz

Hmm.. Something between unrealistic hopes & the harsh truth?

"Mom, you're doing pretty well for your age overall".

Maybe aim to shift focus from 'getting back to her old self' to finding what she enjoys as THIS self.

There is a wonderful book I can recommend. The title sounds very depressing but is really about finding what is important to us as we age.

Atul Gawande: Being Mortal; What matters in the end.

Also have a look at Teepa Snow's website & videos. Great info & ideas for memory issues.

I'm not suggesting Mom's days are numbered or the MCI will progress quickly! Just ideas & tools for your future toolbox.