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I Have Alzheimer’s or Another Dementia
VULNERBALE ADULT LAWS
I recently heard the term "Vulnerable Adult" and learned there are laws against it. However, reporting such "crimes" is rarely done. A doctor's office might become suspicious but many people are isolated and bruises come easily for lots of other reasons than being hit or shaken.
There was a local man who married a woman who had dementia. She was 15 years older, which caused suspicion, and then she disappeared. His story was strange, somehow they found her body in woods 40 miles from her home.
He had her sign her house to him in case of death. Guess murder undid his plan.
I have thought about her ever since I read about it. How she told her daughter she was in love and could not be persuaded any differently.
Looks like Minnesota is hot on this trend as more people take advantage of people financially, are neglectful, abusive verbally, emotionally and physically.
In private homes it is easy to get away with this - but why is it so common?
Once you have dementia who is going to believe you?
Anyone know the facts on this "growing trend"? Nursing home abuse is very secretive. This is something to explore - maybe not in my mental condition today but wanted to share that there is a legal framework to protect us and there might be a list of signs to look for.
when some nice person begins to come into your home to "help" better make sure there is little available for them to gain.
My Dad "gave" money to several people we know of, probably more than we knew. Jewelry went missing - but did he hide it or was it stolen?
Protect us please from being taken advantage of.
Iris - so true.
Imagine though the people who are not diagnosed until they can no longer protect themselves adequately, or who live with people who are not helpful and make life worse.
To know there are laws is helping me, to be able to say to myself "what he is doing to me is not just mean, it is illegal," gave me a sense that my life matters beyond my 4 walls.
No idea what happens if someone calls for help and then has to tell police "I have ALZ" and the Other Person gives the smile that says "You can't believe her."
But it would still be on record in case any thing further happens.
I would definitely call someone I saw or knew was being neglected.
I even interfered when over a couple weeks discussions at exercise class about a woman no longer able to take care of herself was "refusing" to be taken to a doctor and said she "wanted to die alone."
However she was struggling to breathe, and my sense was she did NOT want to suffocate alone. She meant she did not want interventions with medical tests and exams and captivity.
The person who was checking on her every few days kind of responded as if I was putting pressure on her to go against what this woman was saying so I backed off.
She was taken to a nursing home, where se complains daily, but has food and help dying comfortably. Was it wrong to say anything? She seemed a vulnerable adult.
I don't want to die by myself choking, but I don't want to die with people I dislike chattering around me. It takes some work to die, appears to me internally as well as the body shutting down.
The end of life is as sacred to me as witnessing a birth. What I enjoyed doing for others is unlikely going to be done for me.
But I thought it might help some one to know, even if they are not being treated well, esp if they are being neglected, the law recognizes us as fully human with right to protection under the law.
love to everyone...
Vulnerable Adult laws work like the child reporting laws work.
Doctors, staff people, anyone that might work with you like a physical therapist, group leaders, therapists, adult day care workers, nurses, etc...they all have a duty to report you to Adult Protective Services if you are in an unsafe situation or they suspect that you are being taken advantage of or abused.
More famous cases involve financial abuse, those are the ones you are likely to hear about. However, if you cannot clean up after yourself...if your spouse is abusing you...if you do not have enough to eat or a safe place to sleep.
Just like the child protection laws...it puts the onus on the rest of the world to keep each other safe, and those who work in certain fields have an additional legal obligation to report things they suspect.
The law understands that, just like children, certain adults cannot protect themselves as well as other adults...and it considers the class of people (like PWD) as "vulnerable adults" because we are more easy to take advantage of and less able to protect ourselves.
It also makes it a much worse offense to say, yell at a vulnerable adult than it is to yell at your neighbor...and is more likely to be "outrageous" to other "reasonable people."
Hope that helps.
Iris, yes...it is a sad (as in super tragic and untenable) state of affairs that in many ways PWD do have to defend and protect themselves...even though a great many cannot. It is strange to me that you view PWD as too impaired to drive, yet not too impaired to defend themselves from abusers. Long before the ability to drive goes, goes the ability to navigate social situations when they do not go as they should. Long before the ability to drive goes, goes the ability to recognize if something someone else is doing is trivial or huge. This is why PWD are classed as legally recognized Vulnerable Adults.
As caregivers of vulnerable adults, the thought or suspicion that we are encountering elder abuse can be a stomach churning moment. What are the signs we should be looking for? In “The Red Flags of Elder Abuse,” the Center of Excellence on Elder Abuse and Neglect3, describes the signs as follows:
Elders with dementia may be at even greater risk of abuse and neglect than elders without dementia. In 2012, the National Center on Elder Abuse cited several studies of caregivers that together speak to the fear of, and the reported rate of abuse.
Among the findings: 20% of dementia caregivers in one U.S. study expressed fear they would become violent with the elders they cared for; three international studies found overall rates of abuse of people with dementia from 34% to 62%; in a U.S. study, caregiver abuse and neglect of people with dementia was detected in 47.3% of the surveyed caregivers.
If you suspect an elder you know is being abused or neglected, you have several options to get the help you and the elder need.
I feel the above
articles have some very good signs to watch for in our LO’s.
I also feel
having as many people as we can stop in and check on our LO is so beneficial.
My 94 year old Mom is fortunate in that she has lived in her community for many
years and has relatives, church friends, great neighbors, and some long time
close girlfriends that check on her. My Mom fired two of her caregivers. I don’t believe they were bad people, but I
think my Mom could read they were really only there for the money. One tried to
talk to her like she was an unruly child on issues my Mom was resistant, like
bath time. It was fire on fire.
someone coming to visit is a great incentive and helps to get my Mom to bathe. I
just tell her, you know Mary will be here in an hour, and I know you will want to smell nice.
Also, I will tell her the night before in preparation. I’ll say, you know you
skipped a bath today but we want to be sure and get one in the morning before Mary
arrives. Mom agrees.
I just feel
if the previous caregivers had any initiative at all, they would have found
better ways to work with Mom so little hills didn’t become big mountains. Also,
it is a lot of work to get a 94 year old through a bath, safely, get them
clean, and make it a good experience. I think some caregivers are just lazy.
people stop by also keeps Mom’s mind more active and help combat the loneliness.
It’s a great incentive to make sure she is clean, the house is nice, nutritional
food is being served, etc… It is also a good chance for people to witness how
the caregiver is interacting. Before I became Mom’s fulltime caregiver, I
welcomed people letting me know their view of the situation and how they felt
about Mom’s caregiver. Now that I am the caregiver, I welcome company with
their good attitudes, uplifting spirits, magazines/cookies/dishes and all the
love they bring into my Mother’s home.
I think it is very important to legally set up a couple trusted people, while you can think very clearly. When things get cloudy you are much more apt to be abused if you do not have good prevention measures in places. Even then, there is no guarantees, but I would do all that I could. If certain things are very important to you, please make sure to have those in writing. The more specific, the better. Make a list of everything important to you. I think even having a list of foods you love, TV shows, type books you enjoy, music, perfumes, places you've visited, sports you played, ect.. could be very helpful later in life. If the time should come that you have trouble conveying your thoughts this list might help with the communication.
It is not just patients who cannot speak for themselves.
Just because we can speak does not mean we are not vulnerable. People think I speak well, but I have tremendous difficulty navigating conversations (in real life and on here). I almost always need help with aspects of my life because people really do take advantage of my verbal inability to do wrong by me or to con me into something I never wanted.
Alz+ can talk (or write), pretty darn well on here...but she is facing some horrible issues in her life...and she needs help protecting herself.
I am so glad that you feel you are immune to poor treatment and feel you can navigate it, but we are classified as vulnerable adults for a reason.
Heck, years ago, I was at a large clinic downtown trying to find my way around...and the more I tried the more confused and disorientated I became. Then some guy just starts talking to me. He seemed like he was with me, so when he walked away, I followed him. Eek! Thank g-d my daughter was there. After that, I never go new places alone.
Over the years, I have had many different paid CG's...and each fired for reason. Every last one took advantage of me, financially, or in being lazy, late, or asking me to sign for hours they were never here. It is a constant problem. And here is the thing, I often have no clue that I am being taken advantage of until weeks later when I have had a chance to figure things out.
For my safety, I always tell all the people who work with me everything all the other people who work with me do and say. I have to rely on them to keep me safe. I think I am taking a very good precaution by talking about it with everyone, but it is not full proof.
Indeed, for years I had a doctor that really wasn't doing much...I thought it was me, I must just not be saying things in a way that she realizes there is an issue. Eventually, after describing this to numerous workers, one came with me - said, no, it is your doctor, she's being mean to you. Now I have a new doctor and she has done more for me in the last year than the 5 years before that.
There are so many things we need others to do for us, and be on the lookout for, and just know about PWD. Like when conversations on here get nasty, likely because we cannot write so well anymore and are very blunt and matter of fact (others think we are angry and react). PWD often get extra hurt/wounded...and have a greater difficulty recovering (and it takes much longer)...and cannot just brush things off like before. This is why we need, when we can't say something right, someone else who can to back us up or re-phrase what we are saying.
So yeah, yelling at a vulnerable adult on here or in person is as equally icky.
I am glad though that you feel you can handle yourself in situations.
I had one doctor, a secondary doctor, who every month sold me $100 worth of supplements she was so sure would help. After the first few times they made me worse, I never tried them again...but still bought them because I couldn't figure out how to not buy them (because that is just what I do when I go there). And that was 3 years ago. Long before dx for me.
Maybe you are just not that affected by dementia??? Maybe you are not vulnerable??? But I sure am. And Alz+ sure sounds like she is. And we can both still talk.
And, like I said...I can still drive. I can't navigate social situations, but I can drive...go figure.
This sounds sarcastic.
Am I wrong? If so, I apologize.Iris L.
Not at all. I have dementia. And I have lost much of my communication skills, so I speak and write (and think) rather basically these days. When I say I am glad, then I am glad...pure and simple.
That said, I am curious Iris, out of all I just shared...why are you gravitating to this one comment??? What's your beef???? Hmmm....
You should know that you make very little sense to me Iris (again, I am speaking matter-of-factly and simply). You make very little sense to me because you seem to flip flop on what you write, saying one thing and then saying something completely different the next moment. It makes it really hard (for my struggling brain) to follow you.
For example, in just this week alone, in one thread you write that people with dementia are automatically impaired and therefore should never drive. Then, in another thread, you write how you took a long day trip - driving. Then, in this thread, you tell Alz+ that she should protect herself in her marriage as if the Vulnerable Adult laws don't apply to us until we can no longer talk. This does not equate.
Of course we will always do all we can to protect ourselves, we are not idiots and we are still human...most people don't just role over and give up (Alz+ certainly isn't by her posts). But the public and law recognize that in our diminishing skills we are no longer as able as we once were to protect ourselves and therefore require extra help. It also increases the penalty of those who would take advantage of us, as well as makes it more morally bad in the public eye...can't remember now, but I think the term is moral turpitude.
Also, to add to the puzzle, one thing I have found on this forum (especially in regards to the gapping lack of services for people with dementia), is an attitude of "if it doesn't affect me, then I don't care and neither should you." This also does not make sense to me. Just because you have food and 3 square meals a day, does not mean everyone in the world has enough food...and, perhaps more saliently, that we shouldn't help those less fortunate. My brain is struggling to make sense of this attitude...and it is *some word I can't remember* to me because this kind of stuff used to make perfect sense...and I used to know exactly how to respond to it.
So what you find in my writing is a very real struggle to understand and make sense of these confusing messages.
So as I struggle to understand and make sense of it all - I find that, in response, in my heart of hearts and in my soul - I am very glad that whatever issue does not affect that person. So I am genuinely glad that you feel (as you seemed to be expressing) that you are not vulnerable. I sure wish I wasn't.
But because things DO affect me (even if they do not affect someone else), like the VA laws, I care about the issue at hand and will add my piece to it.
All that said, it seems you do not like me for some reason Iris, and seem to express that by taking issue with tiny things in whatever I post. Is that true??? I wonder this especially because after sharing numerous ways I have been taken advantage of in the past, rather than address that, you seem to want to pick a fight over some less relevant thing I said. Why is that???
For what it is worth Iris, it hardly seems worthwhile for you to pick on me for having dementia...there are precious few of us on this board as it is. How about, instead of picking on me, you take your own advice of making this place what you want it to be...which, I gather from things you have said, is a great place that PWD can get support (as opposed to the other dementia orgs, which seems to bother you that PWD see those as being more supportive places)? How about being supportive of PWD, rather than nit-picky?? That would make far more sense, at least to me.
So yes, I am sincerely glad for you...that you feel you are able to protect yourself. I wish I could feel the same way. And I hope you will understand, that not everyone feels as you do.
I am also glad (and relieved) that we have the VA classification, because I recognize that I am (and others are) very vulnerable and in need of extra protection and oversight.
I am also very glad that finding out about the VA laws has empowered Alz+ to find some way to try to take control of her situation.
Mimi, Iris asked me a direct question...and I answered her honestly.
Sun, Mimi, Iris and everyone -
these painful and terrifying topics get under our skin. We worry about each other, my current plight is obvious to many and felt by those who have been there themselves. We are deeply connected!
The trick of posting on the forum (for me) was learning to assume "NO HARM MEANT" when comment was from someone with dementia. We are all super sensitive (brain neuro-biology physical ZINGS cannot be beaten by thinking differently at this point) and so I add that info to how I craft my replies.
I may think OUCH! but I write back to a person as one who is full of concern for others, who is expressing themselves as best they can with their current typing skills, ability to hold a thought, ability to stay on topic.
I understand some of us have very shaky days and weeks. It took practice to remember to give other people LWD what I yearn for, a patient gentle reply - but not too much practice. You are all so LOVABLE!
Michael is a highly accomplished writer, thinker, and activist. He writes sometimes in a very blunt manner and some times it strikes me as a bit harsh. Knowing he has dementia I skip over my initial reaction and re-read his post with his INTENT in mind. It is never an insult from that point of view but passion and frustration because he cares so much and is losing so much.
When we write things that seem incongruent - let that be for awhile. Some things do have many sides. Primary focus here is to be kind to one another. We are all so in need of kindness.
Also, I believe my current struggles are in your hearts, and not being able to reach out and save each other is making us more sensitive. There is an urgency "How do we save her? How to we help him?" to our words.
I love you all so much, your concern for me is enough. You give me strength. I have more clarity about my situation now than ever before. I am seeking help that feels comfortable to me, doing my best to improve a mountain of problems. Taking apart that mountain with a teaspoon.
My end goal is to die at peace, that I extricated myself from an unloving unhelpful home life, dropped all shame and pride, and leave some thing useful to my daughter and grandkids.
I have no hate for my husband. He does what he does, he believes in himself, it is not helping me achieve a good life or a peaceful death so I will do what I am able to give myself this last gift. I am not considering ending my life, but I am facing the end of my life.
These topics mean different things to each of us, some of us have bitter memories, deep pain and hurt. Many of us have been abused. I guess many people reading this discussion are in same boat and feel as I have, no way out but to endure yet never share their stories.
The more we learn to listen for intent and not respond to inaccurate language - and just wait awhile to consider each other's intent before replying, the less offense is taken. From this we all learn how to speak Alzheimer's. We are teaching others how to respond to us by what we post. remarkable!
There is so much love here you can float on it when you get thrown overboard.
Cut us all great amounts of slacks, do not hold us to inconsistencies, be gentle, be kind, come back. This is speaking ALZ, to respond to the emotion, the need, the wish and not pick at words used.
I learned from another youtube lecture, people all over the world, in every culture, seek one thing from each other -
one UNIVERSAL TRUTH: we want some one to be nice to us.
Unless a person is lacking in conscience, compassion or empathy and is hell bent on power over others - then those people deserve no response at all. Ignore them, get away from them, avoid them. Do not engage with them.
The big picture is the desire for people to be nice to us, and we to them. That is how our brain and body developed.
be aware of how sensitive we become when one of us is drowning in the overwhelming, enjoy the altruism of Alzheimer's. Be gentle with each other.
thank you all for saving me again in the many ways you reached out to me.
I hope to have real news by end of this week on some changes to relieve me of crushing burdens. I do not pretend to be a peace maker, but hope that what I have learned over a life time of cruelty can be of use. Then my life has meaning.
love you all so much.
Dear alz+; your post is filled with so much wisdom and true understanding; thank you for the gift of that.
" . . . The more we learn to listen for intent and not respond to inaccurate language - and just wait awhile to consider each other's intent before replying, the less offense is taken. . . . "
This is so important to hear; you have given us all words to live by.
Thank Alz+, as always you come with so much peace and love...always appreciated.
To everyone else, it was Iris who took offense and asked me a direct question...and I responded, honestly and openly, to that question she asked. Please do as Alz+ suggested, and take a day and re-read my post again.
No attack, offense, or sarcasm was ever intended.
I am not going to apologize, explain, or defend...I asked open questions back. If she would like to answer them, great...because I am really struggling to sort it out.
But I will explain and describe communication difficulties.
Step back and start to understand what dementia does as it kills and shrinks the brain...rather than skim over that, really consider it for a moment.
Piece by piece aspects of our functioning is diminished and then removed. Language is usually always affected...in fact, language is usually the first thing that is noticed being affected. My Neuropsych Report even states that my word finding and language construction problems are the hallmark of dementia.
Am I aware of that? You bet! I used to be a prolific writer and public speaker. Even know, shades of how I used to write are still here...I know they are because you (and everyone) comments on my words.
But I no longer even have words to describe how it was before or what exactly was lost, I am only very aware of it. The best I can say is how one "couches" what they say...if that is the right word?
When my eldest child was little, before she could write, she would draw out stories...and one season she started drawing horse and unicorn manes with all kinds of curly q's and flowers...like that. We put in curly q's and flowers in our writing...so that it flows smoothly and laps over people gently like a warm wave. That is all gone.
Now there is just what is. I am hurt. I am confused. I don't understand when this you this. The sky is gray today. It is hot and muggy. It no longer flows.
Functionally, this is how thinking in dementia gets as well. We are working so hard just to do basic tasks (I spend more time in writing finding the letters I need to type than crafting sentences), than considering how someone else may hear it. In fact, thanks to losses in short term, working memory, and exec function...I couldn't even hold in my mind what you might think and know what letter to type at the same time.
Emotions also take a hit in dementia. We lose a lot of what emotions we used to have, and gain other ones we never had before. Besides stress, fear, panic, agitation, and grief...there are moments of great appreciation, but mostly emotions take a back burner to the effort it takes just to type a message.
One of the major aspects of the stigma of dementia...is that you assume because we are here, that the playing field is the same as if we did not have dementia...it is not. It is a whole different world.
Iris never claimed to be upset by what I said, nor did Alz+...now maybe they were...but people with dementia tend to get people with dementia and the way we communicate differently.
But that is what I mean by jumping on people for not saying something just exactly perfectly...first Iris jumps on me, then everyone else does. That makes this place icky for PWD...and that is why there are so few PWD here. IF you want other PWD here - then you need to figure out how to be welcoming and inclusive. To do that you HAVE TO understand that there are communication differences. Take the emotion out of it, and hear what people are really saying.
Me, in my function - I have huge difficulties when people keep changing. I very much need things to stay the same (another hallmark of dementia), it like the ground being in a different place each time you look at it...and is very hard to cope with. I have a couple of people in my daily life who are like that, and I tell them too...and Iris, and I was telling her too...well, actually, I was asking...because maybe she would explain it...and in her explaining it, I would maybe gleen a better understanding and thus a skill that could help me deal with the couple in my daily life. Ugg, but then you would have to understand dementia to understand that...
Now, I am thoroughly sick and tired of being made to apologize for having dementia...why should I have to appologize that my brain is dying??? And I am sick of having people (probably purposefully, because people here should know better) jump on me for not being able to write and talk like I once did. That is completely unfair...and IS mean-spirited. So take some time.
And ask yourselves...really ask, do you really expect me to write and communicate as well as a person who doesn't have dementia? And, are you really going to hold me to a higher standard than I can achieve?? Because if you are, if you do...then I will only fail to meet your high standard.
[Now, this is my hurt and frustration talking (if you read it as anything else, that is your baggage)]: Do you not think it is already painful to constantly be confronted with how bad I am at writing? I get it...you don't need to tell me or show me, I get it. I get it so well I even tell you. When will you accept that I can't write well???? You see it for yourself, so you don't even have to take my word for it...see it there on the screen, my awkward failed attempts at writing as well as I used to. And so I ask (seriously), when will you feel that you have rubbed it in enough??? What level of hurt do you think I need to suffer for you to be satisfied??? And when you are done trying to constantly make me feel like a piece of useless trash, when will you finally just accept that I don't write well?????
Think about it.
I have dementia...deal with it!
I am so glad that you feel you are immune to poor treatment and feel you can navigate it, but we are classified as vulnerable adults for a reason.
I'm new here, and I still don't know where everyone stands. However, from reading this thread, I actually got the exact opposite reaction.
I usually like to read and write things with very little emotion (unless described otherwise), and I take things at face value.
I really don't think that it's fair to assume that Sun was attacking Iris.
I live with my mother who was recently diagnosed (although she's been suffering for a lot longer), and I know that she says things very bluntly, and without knowing her, I would've been offended.
Knowing how people with this disease are, and learning about this disease has taught me that pwd are blunt with their speech and writing, and often say things good heartedly that could come off as rude if you read into it.
What I've learned with caring for my mother, is you really have to take what they say at face value. It's been hard, and against everything I've learned through my years, but the ability to say things the ways others will hear what you mean and not what you said (as in you say something so that people will take it a certain way, instead of saying it how it is (sorry for not wording that good)) is one of the first thing this disease seems to rob, at least that's what I've experienced with my mother.
Thanks for your time, and I hope you can benefit from my insight, because it seems to follow suit with Sun.