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In our state we have, like most of you, the APS and our local obundsman.


My 83 year old client unfortunately has Lewy body dementia and Parkinson’s.


18 months ago she became non ambulatory and feels very helpless, afraid, full of fear and panic.


I have taken quite a verbal beating from her because I know it is the disease talking yet, when do I draw the line? She said very plainly she wanted to commit suicide the other day and purposely fell out of bed. I was not there at that time but she ended up at the ER with a broken wrist. They wrapped it and discharged her that night, even when telling the social worker she was trying to harm herself.


The next day, I was there and she threatened the same thing so I called 911 for an aid car, as she was on my watch and anyone who is of harm to themselves needs to be mentally evaluated. Her daughter went with her. They casted her arm, and discharged her, not addressing the self harm.
It is very taxing caring for her because Lewy body is really playing a huge roll and the daughter will not Medicate her for the hallucinations.
Any advice for me?
I watch her 20 hours per week!


thank you all for your love and support.


She is with Dementia but at times very lucid?

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That certainly sounds very taxing, but it’s clear you’re a caring person trying to do the right thing. Following protocol is always a good idea, but follow up with her daughter, so that it’s brought up with her doctor. A suicide threat is either a cry for help or a cry for attention. If it’s a cry for help, that can’t be ignored. If it’s a cry for attention, then you need to get to the root of why she feels she needs that attention. Some people just like the fuss being made over them, and are oblivious to the pain they’re causing to their own bodies. Regardless, you need to follow up with a doctor so a plan can be made, because it’s evident that some needs are not being met (though no fault of your own).

Best of luck!
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Isthisrealyreal Aug 2021
Sometimes a threat of suicide is a manipulation tool to get others to jump at your command.
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Now you understand why Robin Williams committed suicide after a diagnosis of Lewy Body Dementia. It's an insidious disease.

At the very least, the daughter should be pressed to medicate her mother to help with the hallucinations. Imagine having the worst nightmares of your life all the time because your brain can't turn them off. The daughter needs to understand that the medications won't prolong her life (which I suspect is her motivation for denying her the meds), but they could provide her comfort and some degree of peace.
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Tunfet Sep 2021
Before passing judgement on the daughter, please know that the horrors of Lewy Body Dementia include adverse reactions to many commonly used medications. Most psychoactive drugs simply don’t work as expected.

While a neurologist might undertake a lot of trial and error with various medications and regimes to find something that helps, the attempts often increase the hallucinations and anxiety, and speed physical decline. In some cases the side effects are severe and long-lasting. Generally, any improvement is fleeting.

This is is by no means as simple as slipping a Benadryl to an anxious dog before a car trip. And BTW, Benadryl is another drug often exacerbates Lewy Body Dementia.
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Think about her situation. she's elderly, sick, can't walk, and has zero independence. She has every reason to want to take herself out. I would want to as well.
Maybe some medication to keep her calm and to treat her anxiety would at least help her feel a little better.
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I would tell the daughter that she either gets her mom the treatment and meds she needs or you are turning in your resignation.

Someone that will not do what is best for the patient is likely to blame others when a tragedy occurs. You need to protect yourself.

I would send letters to all of her doctors stating that her daughter is practicing medicine without a license on her mom and her mom is suffering as a result.

I totally believe in doing it naturally when able, heck maybe some CBD would help, but, it gets to a point when nothing being done is dangerous and malicious, IMO.
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Has she always used the threat of suicide to get what she wants?

My mother did, for years and years. Drove me batty---nobody else took her seriously and I shouldn't have, but what 10 yo has the ability to hear "I will kill myself and then you'll all be sorry" and not internalize it??

On my 30th birthday, she asked me to come by. I did, and she gave me a card (a 20 mile drive for a birthday card!) I was pregnant with baby #5 and had my 4 small kids with me. What does she say? How unhappy she was and how no one cared..on and on and something snapped inside me. I said "Mother, feel free to kill yourself. Just don't leave a mess for me to contend with. I can't even see my feet for my huge belly".

If she were doing that manipulation NOW, I would call 911 or APS or someone and have her Baker Acted.

If mom is making statements to that degree, she needs to be hospitilized and helped or called out on the manipulation that it often is. (BTW, mother never did one single act of self harm. But, wow, her constant talk of killing herself did a number on me).
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BurntCaregiver Aug 2021
Exactly. The threat of self-harm and even suicide to manipulate the family and get what they want.
My mother does the same thing, and I tell her the same thing as you. 'Go ahead. Just don't leave a mess'.
Even though the mom has dementia, she might just be putting on performances to get attention too. That's always a possibility.
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https://www.brainandlife.org/articles/assisted-suicide-legal-in-washington/

Washington is a 'Death With Dignity' state so your client may be able to request and then self-administer a lethal overdose of medicine to end her life. There is a link to the article above. She has to be mentally competent, however, and administer the meds herself, which could be an obstacle.

I would resign my position with this woman, if it were me, because it's too stressful to be in such a role. Her daughter needs to pull her head out of her butt and HELP her mother here, for crying out loud. What sort of a person refuses to medicate her own mother who's suffering like this??
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jenny6 Sep 2021
It is not possible to take advantage of the "death with dignity" laws if people do not have mental competency. This is the case in all 10 U.S. states that have medical aid in dying laws. It points out the importance for all of us to consider and make plans for ourselves should we find ourselves in a similar situation.
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Forgive me for saying this...I am getting tired of hearing the word "doctor." Is he a god that we must run to every time there is a problem?
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Shikkaba Sep 2021
No, it's a person whose profession is taking care of the human body. If you need help with that, who else do you go to?
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Talk to her daughter a a mental health evaluation by a geriatric psychiatrist. Yes, Lewy body dementia of Parkinson's disease is playing a part in her mental health. However, she also appears to be suffering from depression and hopelessness related to her medical condition.

In the meantime, continue to give great care. Document the instances of self-harm and threats to kill self. Always call 911 for any threat to kill self or harm self and make sure it is treated as a psychiatric emergency - since that is what is is.
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I'm thinking about your client. As you say, [she] unfortunately has Lewy body dementia and Parkinson’s...18 months ago she became non ambulatory and feels very helpless, afraid, full of fear and panic.
And you can't understand why she may want to kill herself??? I think we all would in that situation. Suicide is the ONLY thing she can control herself, e.g. purposely falling out of bed. Talking her out of her situation is, of course, is impossible. Her health issues are SO invasive!
Does your client listen to music, can she talk about her past, or.....? Otherwise, call 911 every time you are with her, until someone takes you--and her--seriously.
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Lewy body dementia is very difficult to manage, as patients become more agitated and distressed with most medications to manage mood/hallucinations.
There are periods of clarity in Lewy body, in the early stages.
She does need to be under the care of a neurologist, but I imagine that getting her to a doctor's office is a nearly impossible task.
I think this elder would actually benefit from placement in a 24 hour care setting - probably a nursing home - or assisted living with private paid support. If she has the funds.
She won't necessarily be any happier, but she will be safer and there will be people to check on her very often and help her with her needs.
And it is not fair to you to be trying to meet her needs all by yourself 20 hours/week.
Good luck, and take care of yourself.
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Please check in with APS today. You may well be a mandated reporter in your state, that meaning you are obligated by law to report any threats to self or others. Now the question remains, report to who? Do you work for an agency? If so that is your first step. These threats should be reported to any family you are in contact and there should be followup to be certain that this is reported to doctors. Your client may well wish to not go on any longer. That was the case, certainly with my brother. While he made no threats of any kind to take matters into his own hands, he did often express that he would wish to die before his Lewy's Dementia progressed further (he did in fact die of sepsis prior to that point).
Please be certain of your obligations now legally and morally and under the law in your own state. I hope you will be able to use your search engine for your own area. These rules are easy to find for my own state.
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It's cruel not to medicate someone with mental issues. Medication may help her. Why is her daughter against it?
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Yeah--leave. Quit.
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Makeadifference: Prayers sent for your client.
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I think I would contact the local Office on Aging and ask for a social worker to step in and evaluate the situation. Once they are aware, they will take appropriate legal action and most likely take over and place her. A medical doctor must find a way to medicate her. On the suicide issue, what she has leads to living a horrible life and they can be most difficult. If people want to die, I am all for allowing them to die - it is their life - not yours. First of all, it is not easy to do. I would just listen and not encourage or discourage - that could backfire - but try to understand why they wish this. Makes sense to me. Protect yourself by following all legal rules and inform the professionals who can make changes.
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1. Have you discussed her talk of suicide to your supervisor?
This is reportable and you are a mandated reporter as is your supervisor. I would also CLEARLY document each time your client says she wants to kill herself and CLEARLY document what you did in response. (talked to supervisor, called 911..)
2. If you do not think your supervisor is taking this seriously a call to APS would be one I would make as well as to Suicide Hotline 1-800-273-8255.
3. Is her daughter, family aware of her talking of suicide? If not they should be made aware of how serious she is about this.
4. Is she on Hospice? If so this might be something that should be discussed with the Nurse, Chaplain, Social Worker that comes and visits. If you do not feel comfortable discussing this with them make sure that the notes that you make clearly articulate the times she has talked of suicide. The Hospice staff should have access to notes you make as it relates to her care and.

After all that....I do have to say I completely understand her and I would be having the same thought pattern and I would be doing everything I could to end my life before it got to the point where I no longer could carry it out.
My heart goes out to her. And to you.
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If the daughter wanted to do the right thing she would take her mother to Switzerland. They have assisted suicide there.
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Grandma1954 Sep 2021
No need to go to Switzerland. there are a few states that permit this but they do make it difficult.
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I think it is actually normal as people fall helplessly into a disease that they know will overtake them to where they cannot control themselves until they die, to want to avoid it. They do get frustrated, easily angry, they do lash out & they can be aggressive especially if being made to do something they don’t want to do. The best thing to do is back off from what’s upsetting them & try a different approach later if it’s necessary. They do go through suicidal phases, even the most mentally healthy. They hate what’s happening to them. All you can do is be lighthearted & give them things that make them happy (ice cream cones, car rides, what ever distracts them that they enjoy). You can get through those phases that way & by letting them have their way. If you let them stay angry, suicidal, aggressive it seems to create new habitual circuits in their brain that they fall immediately into. So try to avert as it begins with a sudden distracting lighthearted tone of voice or something out the window, or a fun suggestion. This phase can last for years. You need a lot of patience but you can keep them friendly & enjoying life if you don’t let them wallow in negative thoughts.
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Can you get a state social worker involved? You might want to drop this client with a warning to her daughter that SHE will need to be her mom's caregiver.... and explain what that means. Have you tried to call Suicide Anonymous for suggestions?
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