I leave my sister notes to help her remember things.
I know she can still read.
Twice a week I put up notes before I leave to remind her that her shower day is the next day saying, "Do not wash up. Stay in your robe. Today is shower day."
Most of the time she complies.
She likes her showers, and thanks me for helping her take them, as her fear of falling has prevented her from taking them independently for years.
However, more frequently lately, she started ignoring my notes, and is washed and dressed when I arrive.
So, I made more and bigger notes, putting a very large note, in very black marker, covering her towel and washcloth in the bathroom, put 3 large (8 × 10) notes in her clothes closet, and another 8 x 10 note in her underwear drawer. Also, I have been arriving 30 minutes earlier than usual on shower day, on the off change she gets up earlier, so she does have to sit and wait for me too long.
Today, despite my best efforts, I arrive to find her already washed and almost dressed. I asked if she saw my notes. She claims, "they just didn't register in her mind." It is difficult to believe this isn't deliberate, but I having trouble imagining her reason.
What is going on here? Visual abnormality, manipulation or what?
Any insight appreciated!
Everyone who pointed out that my sister has turned a corner...taken a leap into aphasia, is correct, of course. I'm feeling grief stricken at the realization, and completely bewildered by how easily a caregiver (me) can lose perspective when so caught up in the daily challenges of trying to manage the unmanageable.
I do understand my sister and I are at the point where my helping is no longer helping.
Thank you, all of you, for helping me understand this. I have to do the next right thing for my sister, and myself. I see that clearly now.
I just really believed I would "know"...see clearly as her abilities diminished, and be able to deal with it less emotionally than I'm feeling right now.
I sincerely appreciate all of your responses...your many years of collective experience, and your willingness to share that wisdom and knowledge with me.
Caring for other people's brothers, sisters, mothers, fathers, grandparents in assisted living, as I did for many years, really does not prepare you for caring for a close loved one with dementia.
The emotional connection is what trips you up, and yes-blinds you-everytime...
Your sister's brain is literally dying. And as each part of the brain is effected, that ability dies. And yes, there comes a time when your sister will not be able to be left alone. Dementia is very unpredictable. You never know whats going to happen next. No ryhmn or reason. My nephew came home to find Mom had left a pot boiling. Another time to her crying because the phone had been ringing and she didn't know how to answer it.
We wondered if she had forgotten how to use her remote. Shortly after this she came to live with me.
Things can happen overnight. I worked for Nurses and they called it an episode. Something happens why they are sleeping and next day there is a decline.
Here’s the thing though, when you are doing all that you possibly can to assist your sister and it’s still not working, then don’t you think that it’s time for a change?
Wouldn’t you rather plan ahead and be prepared, rather than wait for something drastic to happen and then be sorry because you could have prevented it by finding suitable alternatives for your sister?
I realize that you are trying very hard to help your sister. I know how hard it is to be a caregiver. I helped care for my brother and I cared for my parents. I empathize with you.
I think it’s important to acknowledge to yourself that you have done all that you can do. Step aside and let others help now.
Your sister is struggling to cope with everyday life. She needs additional support.
Best wishes to you and your family.
I get what you’re saying but she has absolutely no control over what her sister’s children do or don’t do.
I am aware that she cares about her sister. Still, she isn’t helping her with notes or anything else because her sister isn’t able to respond the same way that a person without dementia would respond.
So, now the only thing that she can do is step aside. Hopefully, her children will take over. They will not make any attempts to help if their aunt is doing everything to help.
The only other thing that she can do is to report her sister as a vulnerable adult without sufficient resources to live safely.
Living alone with dementia is a dangerous thing bc you just don't know when a step down is going to occur. If she does decide to wander, then what? Being grateful to live in her apartment doesn't make it a wise idea if she mixes ammonia together w bleach one day to clean.
Their reasoning power is gone, their logic is gone, along w short term memory which is what keeps us functioning with how to do things every day. The steps involved in boiling an egg, for instance, are many. A person w dementia will forget them halfway thru and leave an empty pot on the stove on high heat and walk away. This is how accidents happen.
You can hire in home help for her before placement becomes necessary. Someone to be a companion and helper and to keep an eye on her behaviors.
Speaking of "leaps".....I'm sure you weren't expecting your sister to forget how to comprehend words from one day to the next, either, but such is the nature of dementia sometimes. They're fine one day, step down the next, and everything changes.
Keep all this in mind for when you need Plan B.
In the meantime, I suggest you read this 33 page booklet online about managing dementia and what to expect with an elder who's been diagnosed with it. Lots of Do's and Don't tips for dealing with dementia sufferers are suggested in the booklet.
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 reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
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
Educate yourself about what lies ahead as dementia progresses before you decide what steps to take. Knowledge is power.
Best of luck to you.
Things tend to be ignored until we cannot do so anymore.
It sounds like that is where your sister is at in her dementia journey, so be kind and gentle with her as she is not manipulating you or being "deliberate" in ignoring the notes.
And sadly as this happens she will require more care, and won't be as safe at home as she once was. So it may be time to be looking into hiring more help(with her money of course)to come in and assist her in her daily activities, since it sounds like you prefer to keep her in her own home.
There may come a day though when she will have to be placed to keep her safe, so I hope and pray that you won't be in denial about that fact, as dementia only gets worse, never better.
something
Regards
You think this is an indication she needs to be in a facility?
She is not wandering.
She can still use the microwave.
She manages on her own without supervision 6, sometimes 10, hours a day without incident.
She is still so f***ing grateful she is still living in her apartment.
Just seems like such a leap, ya know?...from not reading a note to putting her in MC.
Really?
What you're describing is in hindsight a red flag. It's just a little warning that if this is a problem, there are probably 10 more problems you haven't picked up on yet.
No, she might not need a facility yet, but she's heading that way. She can't comprehend a note, which means she isn't processing language properly, which means she has an issue with cognition, which means she might not remember how to use that microwave tomorrow or would turn on the stove and walk away, or who knows what.
It's just something to be aware of, because it's a change in her cognitive ability and much more than simply "ignoring" a note.
Dementia destroys the brain, yet we still find it hard to believe our loved ones aren't deliberately conning us or that they've got any "reasoning" power left? It's hard to believe a once normally functioning person is now unable to even read a large note that's left for them, I know.
Difficulty with language and communication that goes along with dementia and strokes is known as aphasia.
A person with aphasia may:
Speak in short or incomplete sentences
Speak in sentences that don't make sense
Substitute one word for another or one sound for another
Speak unrecognizable words
Have difficulty finding words
Not understand other people's conversation
Not understand what they read
Write sentences that don't make sense
As her dementia progresses, you'll likely see the aphasia worsen too. I saw it in my mother with her inability to process what I was saying. I first thought she couldn't hear me for her saying "what?" constantly, until I realized it was the words she didn't understand, not the volume.
I'm sorry you're learning about aphasia in addition to the dreadful condition known as dementia. Wishing you the best of luck with all of this.
She may or may not understand them.
She may or may not comply with them.
Her short term memory loss may be so acute at some point that it is there one second, gone the next.
I would assume she isn't retaining the information and cannot coordinate now to comply with the directions.
Obviously, your sister isn’t able to function by herself any longer.
I realize that you are sincerely trying to assist her by leaving notes. They aren’t helping her in any way because she can’t understand what they mean.
Help her by finding a suitable facility for her to live in, then oversee her care.
Dementia didn't rob my mother of her ability to read -- just her ability to comprehend and retain what she read.
2. there’s no visual abnormality. it’s either intentional (because she wants to try to take the showers on her own)…or unintentional (the note - really - didn’t register in her mind. maybe her memory is so bad, she forgot what she read, 2 seconds later).
3. your sister shouldn’t live alone. there’ll be more and more problems, danger. i hope she can hire caregivers.