Has anyone ever heard of a person with dementia writing notes to themselves as reminders of their grievance against their caregiver?

I am touched by hearing your difficult relationship with your Mom. First off, you must take care of you. I can’t even imagine how difficult your life must be trying to do both. Is there any other family members that can step up and help your Mom? If so, they should be involved, so you can take a break and care for you. Blessing to you, and make yourself first priority!

How does she remember that she even left the notes?

You are 'wanting' to interact/talk to your mother as if she doesn't have dementia, i.e. "I should say that I have recently found out my breast cancer has metastasized to my lungs. I am currently getting tests, biopsies, etc. so that my doctors can determine what treatment to use. " ... I feel compassion for your cancer diagnosis and know this must be extremely difficult for you ...

The question isn't if others have heard of this behavior; the question is 'How do you (learn to understand and) handle it? Cope?

However, when you open 'that door' to dementia confused thinking (i.e., "...my Mother, because she tells me that God allowed this cancer in my life because I won't do as she asks." --- you are walking into a trap of frustration and hurt THROUGH A DEMENTIA AFFECTED OR INFECTED BRAIN. You do not have the energy to 'waste' on this 'communication' with your mother, who doesn't know what she is saying.

Your behavior / words about what is going on here tells me that you do not understand dementia. You are expecting her to 'understand / comprehend information (content) that she CANNOT understand due to not having the cognitive abilities / brain cells/functioning to do so.

Let her do what she needs to do ... writing notes. This is 'her' brain activity, not yours". She is in her own world and if writing notes gives her (confused, altered brain / mind) some peace, let it be. If she isn't doing anything potential harmful to herself or others, let her be as she 'needs' to be.

Yes, she is angry at you for tossing her notes, etc. ... "...it has only made her more angry and agitated, and more determined than ever to hang on to her delusion."
Yes - let her 'talk' and 'write' as she desires/needs to.
Yes - she is hanging on to her delusion - this is all she has to hang on to.

What you need to do_____________

* Take care of yourself.
* Realize she will continue on due to anger, confusion, lost brain cells - and that she doesn't know what she is 'talking about.' Her confused brain / mind thinks she does, which WON'T change - it likely will only progress in this thread ... 'realizing truth' - she doesn't have the capacity to do that.

* Study / research dementia: Google Teepa Snow - read her website, webinars, books, You Tubes ... google/study about dementia and the brain so you know what you are dealing with - and STOP spinning your wheels 'trying' to convince her and relate to her as if she is of sound mind, like yours. She can't do that.

* When you realize why she responds / interacts with you, you will save your energy for what you need - TO TAKE CARE OF YOURSELF.

Learn how to talk to her:

* You communicate in ways that will KEEP HER AS CALM as possible. Period.
* You agree. ("Thanks Mom." ) - then you walk away.
* Take breaks; hire caregivers to be with her. Focus on healing your own health needs.

* You grieve the mother that you had as she is not there anymore.
This is an extremely difficult position to be in - it is cruel. On top of that, you have your own health issues. PUT YOURSELF FIRST.

* Mother will go on and on down this spiral. Expect this.

IF MY MOTHER, I'D...

Give her paper and pens to write write write ... so she can get her confused anger out ... the only way she knows how.

Extend COMPASSION to her - and yourself.
It will help you shift out of mental torment. Google Rick Hanson. Join him and 400+- others from around the world on Wed night Zoom. I've been doing this for a year or so now.

I send you healing light and thoughts,

Gena / Touch Matters

She is anxious and agitated. Please talk to her doctor about medication to help her relax. Since you are dealing with cancer with metastases, please research options of longer term care for your mother. You might need chemo or treatments that would make you too sick or weak to care for her.

Time for placement. You have done enough and deserve some peace to focus on your healing

My mom (moderate stage mixed vascular dementia and Alzheimer's) writes notes all the time. Lists of things she wants to buy at the store or for me to buy online for her, people she wants to contact, things she is concerned about. Last week she had a list of things she thought she was out of, but she actually had multiples of - just didn't recall she had them and doesn't see them despite them being right there in her room. Her brain is broken in multiple ways and she can't help it. Today she called me and couldn't recall why, called me later and asked if she could see a copy of her last year's tax return and her bank statements. I've showed the tax return to her and show her the bank statements every month but she cannot recall anymore that she's ever seen them. It is stressful and disorienting to her to think she hasn't seen it and doesn't know anything about her finances anymore, when for many years she of course used to handle them as well as being her church's treasurer for many years. I sympathize and know she can't help it but it also drives me a bit bonkers when she says she never has seen her bank statements when she has. When I show her, she is always surprised that she is in good financial shape, has plenty to cover her care. She has lack of insight into her condition, and though she recognizes that she is having serious problems with her memory, but doesn't realize the extent and still thinks she is the only one in the memory care facility that has all her brains.

Anyway, my mom writes lots of notes - post it notes, notes on envelopes, on note paper, everything. I usually pick them up to check to see if there is something she does need or is concerned about. It is a good window into her mind and what she is anxious or distressed about.

Oh, my dear dear one, this is just AWFUL and I'm so sorry. Can you accept the fact that words like your mother's are helplessness and see that God never gives illness for any reason? I think getting a Christian Science Practitioner might be helpful- it was for me... No advice will come close to words of comfort but I truly wish I could punch thoughts like those aimed at you in the freaking teeth. Dementia speaks strangely and spews lies and dark forebodings. Life is the rule. Love reigns. When we can grasp that kind of thinking, we can truly sense peace- still, It is a terrible burden you're bearing and I hope you can find a community to support you. Can you give up the caretaking and focus on your own health and spiritual growth? Bless you. May you find humor as a long lost friend. May you find joy and peace- and may you kick stupid thoughts and advice to the curb. Mine included if it doesn't suit you. I wish I could help!

Paranoia - and all forms of mental illness can happen when the mind starts failing
your mother hadn’t got over her grief
maybe the doctor can recommend a counsellor
it’s sometimes easier to talk full feelings to an outsider
Shd needs to release this trapped hurt
it won’t go away otherwise
of course counselling doesn’t mean it can be solved but to try
o e school friend with family history issues went into counselling and came out blaming everyone for her messed up life and cut her family off ?
there’s always a risk someone won’t accept the truth or even the pain to enable them to move on
Maybe worth trying
I. The meantime your mother seems to be in her faculties to know you ve moved her things so maybe leave them going forward
you can take a horse to water but you can’t make it drink saying cones to mind
just know you tried

I am so sorry that your cancer has spread. You must become your #1 priority.

My mother was also a compulsive note writer in her earlier stages of dementia. (too advanced to write words now) Her broken brain concocted all sorts of secret society scams that she was documenting so she could expose them to the world. Example: Today is Friday, August 30, but she might be certain today is Monday, October 4. So the newspaper is publishing the wrong date on today’s paper to manipulate us. Down the rabbit hole! It was all so absurd but fascinating as she clung to her delusional conspiracies with such tenacity.

Please arrange with a social worker (or similar) for help so you can focus exclusively on yourself.

Your priority now is your health, not your mother's. I would consider placing her in a nursing home at this point.

She's had her life and then some. It's time to focus on your health and getting better. You want to be outlive her and have a healthy life after she's gone.

Hoping for the best outcome for you.

I am so sorry for your cancer diagnosis.
I think that your health and wellbeing are far more important than your mum's right now.
Ensure she's safe and that someone else is taking care of her. (Whatever you need to do to get that done, do it, and don't feel guilty!) But your main priority should be you.

I'm hoping for the very best for you.

My mother doesn't have diagnosed dementia but has written notes for years about various injustices she feels have happened to her. They are very mean and often not true. For a while, I let the notes get under my skin because they were very specific about the ways in which she hated me. Now I see them as her truth and I know she needs to express her feelings even if they are horrible. Basically at this point, I'll do anything to avoid an emotional outburst. I'm sorry you are going through this. I've found that caregiving requires a lot of squashing your own views and wants in order to keep the peace.

My Mother of 94 has dementia. I know it, Dr knows it. She continually writes notes all over the place. Continues to accuse neighbors of stealing her items including a toothbrush.. It is really difficult to handle. She still does well in her own home and tends a lot to her outdoor gardens. It seems healthy for her to hoe weeds. I have read some of the notes and decided it is better for me NOT to read them, as some are VERY nasty and hurtful to me. I do the best I can and ignore her rants about people stealing, even though it gets to me sometimes. I change the subject and walk away most times. I pay for home care once a week to take her to store etc and another person to check on her daily, just because I worry. I don't go anywhere, or far away because she makes me feel so guilty. I can never do enough, and when I do things to help, she gets angry. I have a wonderful husband now, and I moved out of her home after living there for 5 years taking care of her and my Father who passed. He was wonderful. I found a new life and want so much to do things. Dementia is cruel to those who love the ones who have it. We have to be strong for ourselves and not let it get us down, and that is the hard part. WE need to be important to ourselves. We are caught between rocks and hard places, I know and understand. Soon My Mom will need more care than she has now, and I dread it. As long as she is in her own home and garden she does ok, and for the age she is remarkable. I have to think of all the good and let the rest go. Do the same. Hugs.

My Grandma has been writing notes and claiming someone else wrote them, when I’ve pointed out that it’s her handwriting she just says “they have the same handwriting as her“ and they’re about all
sorts of things. I’m now just ignoring it, some I’ve thrown away but others I just leave alone, I am not sure if it matters what my response is.

I have known two women who did the note writing while suffering with dementia.

One was my MIL who did not write anything beyond a grocery list in all the time I knew her. When she died we found notes in her Bible written about her husband, my FIL. I felt really sad reading her notes. That she was so alone in her pain.

The other was a good friend who wrote notes about who had stolen her purses. She had three that were beautifully designed from her days as an executive that she truly loved. She would hide them from herself and when she couldn’t find them would write the names of the people she had seen most frequently or recently. Sadly she accused the people who were caring for her. I thought the notes were her way of recognizing that she couldn’t remember and though these expressions of her distress were false, it was in an effort to control her situation in whatever way made sense to her at the time. That’s just what I consoled myself with. It doesn’t mean it was true. She could be pretty vicious when she was sure she had been wronged.

I am sorry that your mom is caught in this pattern of trying to make a record of those who she feels have harmed her.

I can understand the notes being hurtful for you even though you know they are written by a woman with a broken brain.

I’m sure your mom does love you. Love doesn’t stop just because we think someone harmed us. Just like now. You love your mom very much and she is making your life miserable. We all do understand that love.

But dear one, please know that you must act now while you are able, to place mom in care so she can get the help she needs and you can focus on your own health and life. And if she is already in care (that portion is not clear) or if your siblings are her caregivers, please step away. Skip your turn in dealing with her. Love her from afar.

Allow her the notes. Perhaps buy her a scrapbook or journal to put them in. Perhaps write her a love letter to go in the scrapbook reminding her that you do love her. Apologize for any mistakes you may have made. Put a photo of the two of you in the notebook. Nothing precious. Know she may just destroy it, but it might help you to write it and on clearer days it might help her to read it. Try to limit your in person visits as long as she upsets you. Look on the note writing as an activity for her. Nothing more. Don’t be afraid of them. Don’t dwell on them. Let them go.

Focus on those grandsons and your family if they bring you peace and free you from stress.

Try reading “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. Time to focus on your life now. Big Hugs.

OMG....your health and survival is the TOP priority now. You must focus on this completely. Not your Mom's despicable behavior. Her brain is fried, she is beyond repair, and you need a stress free environment!

Think about this....if you go before Mom, she will go into a facility anyway.
Do it NOW, so you can stop the stress you are having from her wacky behaviors!
Tell her Doctor (and your Doctor) she must be placed in a facility, get a Social Worker to help you deal with this!!

Yes, she needs to be REMOVED from your mind and stay away from her! She is not helpful, she is TOXIC. She has had her life, focus on YOURS.
I'm sorry you are going through this....sending prayers.

Give her all her stupid notes in a shoebox as a parting gift!

Forget about your mother and her nonsense. People with dementia come up with all types of weird nonsense, antics and ideas. Let her keep her notes and just block her calls.

Focus on your treatment first and foremost. Get a social worker involved for her placement, and make it known that you are no longer able to handle your mom's affairs or be her health advocate any longer because of your own health.

I have a sister who sided on the skirts of weird all her life. She is currently in a nursing/rehab home. She has this fixed idea of buying a house, moving to New York and marrying a male CNA who works in the rehab. She also is going back to college to finish her degree. I just listen with little to no response because it is a coping mechanism for her. A few months ago she claimed she was pregnant and needed prenatal care. I didn't laugh or try to talk her back into reality. I let her run with her story. She can have moments of clarity at times, but most of the time it's these stories and silliness.

Just keep in mind that the brain is broken and fixated. Strange ideas are just par for the course and the progression of the illness. In other words, the brain is broken.

When I was new to dealing with certain types of dementia, it baffled the heck out of me in the beginning. After a while, I learned to relax and just sit with my client while they go through their antics of the moment making sure they are safe.

Your priority is your health and doing everything possible to care for yourself. Please know that. If your mother is living in your home, find another place for her to live. Meanwhile, never discuss or mention your cancer or health with her again. And in your shoes, I’d buy her a ream of paper to write all the nasty notes she pleases. Keep her writing and hiding. Just don’t get caught discussing any of it her nastygrams. Talk about nothing deeper than the weather.

Hon, I am a two time breast cancer "survivor" (in that I am still at this moment ALIVE) and I am here to tell you that you cannot any longer afford for your own mental and perhaps physical health afford to care for your mother in home.
She must be placed.
It is time to tell her honestly that you cannot care for her in the home any more and have to take care of yourself, and that you will visit her when you can.

You know that you are looking now at heavy duty treatment WHATEVER they use. You cannot do this taking care of dementia at the same time as long as you take so seriously what your demented mom says. Were you the kind of person who would/could just say "This is the face of dementia and in some ways it is kind of funny" (and laugh to yourself that if ANYTHING is God's punishment on you it is your MOTHER), then I would say, go ahead; get in all the support for you and her that you can afford and just go for it. But you are currently taking her ridiculousness SERIOUSLY and you cannot afford to do that for your own health.

Please place your mother now.
I wish you the very best of luck ongoing. The Big C. happens. Dementia happens. My daughter's details with detached muscle in her pelvic girdle and all kinds of pain. This stuff happens. It happens to believers and those who--like myself--don't believe a danger thing. They happen. It's life. We all live. We all suffer. We all experience joy. We all die. Most things we have utterly NO control over, but you DO have control over whether or not you continue to care for Mom. If she has some control you can tell her that her continued comments will land her in a nursing home. If she DOESN'T have control (which is of course more the norm) then just ignore her and do what's best for you.
I hope you have loving support from SOMEWHERE.
I wish you the best.

I hope you will remove yourself from your mothers presence now so you can focus on your cancer situation. Get mother on plenty of calming meds before you exit, and let your siblings decide what to do next. The LAST THING you need right now is a demented mother telling you "God allowed this cancer in my life because I won't do as she asks." Enough is enough.

I hope for a full remission for you, my friend, once you remove the source of such stress from your life. Best of luck.

For God's sake put her in a memory care facility and be done with it.
You have so much to deal with right now and certainly you don't need the asinine nonsense of your demented mother and her confabulated grievances over nothing.

Get her placed and give permission for her to be medicated for the agitation and anger. You can get her doctor to prescribe medications for her now. Ask for ones that come in liquid form that you can put right in her food or drinks without even telling her.

In the meantime, as in right now, give her back her ridiculous notes and don't touch them again. Do not give her nonsense the slightest attention. Don't feed her delusions or validate them in any way. The only acknowledgement of this crap you should give her is to tell her once or twice that something isn't true then COMPLETELY and UTTERLY ignore the topic.

Good luck to you and I wish you all the best.

What harm is your mother hanging on to these notes doing, and to whom? If they keep her calm and keep her from throwing a fit let her keep the darn notes.
Remember, you must now live in your mothers world not force her to live in yours.
Your life will much more peaceful if you follow that simple rule of dementia.

Junie25, I remembered my Dad had notes here and there. I couldn't understand what he had written but I decided to just leave the notes where ever I found them. I figured with time, Dad would stop the notes and move onto something else.

It sounds like she would benefit from some anti-anxiety medication to help calm her thoughts. Dementia robs our LO’s of rational thinking and, as you know, her delusions are very real to her. I would speak with her doctor about medication to easy her anxiety.