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As a family we've been dealing with mom's gradual decline with dementia. The past two weeks have been especially challenging with hallucinations taking over most of her days/nights. It started last year with a little girl that would come to her and sing. Pleasant and caused no problems. Now it has escalated to this "child" being abused by her mother with fingers getting cut off with a knife. Tonight she lashed out at my dad by hitting him and scratching his arms because he wasn't saving this child. She has also been opening doors and trying to leave the house to get the girls father. I took her to her PC on Monday to rule out a UTI and she was prescribed Seroquel to help with night time wanderings. Didn't help. I called an ambulance after her outburst and am now at wits end. The ER doctor called and said physically she's in excellent health at 92. She will be evaluated mentally tomorrow. She has been diagnosed in the past with LBD. I might also add she is difficult, controlling and demanding to family (this is her personality, not new to dementia) but sweet as can be to others (dr. said she is joking with staff and being very pleasant overall). My question is.....up until now we've been able to keep her at home, by not arguing (futile) and just letting her be as ADL's are not a concern. But with these intense hallucinations and the fact she is acting out violently, I worry about my dad and his safety. Can I be forced to bring her home when I feel there is a risk factor? Will Medicare pay for a short term stay at a facility until her behavior is under control? I just feel we are in crisis mode right now and any suggestions will be more than helpful.

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Oh my I can say clearly your concerns are so so valid. As a caregiver on several times for family with LBD the hallucinations and delusions can absolutely be scary. Delusions are literally the most difficult to handle.
Once you've tried medications, and various precautions etc and you see there is no change, but instead an escalation in this behavior TRUST YOUR GUT. I actual put a alarm on my moms bed so I be aware when she got up. This gave me a chance to be alert and capable of reacting if need be.
Unfortunately unintended bodily harm is often the outcome of these episodes. I am aware of a husband being severely harmed by his spouse after family members begged him to allow his spouse return to their home after being evaluated ( against his better judgement) he felt guilt and pressure. Of course, the resulting mental state of the person caused this to happen. But love and care must be something you give to yourself as well as your loved one. Every ones well being is at stake.
People that do not live daily with your loved one can not properly asses the danger. This situation is always hard...but proper care for you and them vital.
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Get her some anxiety med.
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I recently had same problems with my 94 year old mother with dementia. She was having hallucinations that room was on fire 🔥 or there’s a flood. Better yet, she’s was accusing ME, her 62 soon to be 63 year old daughter of setting them. So she was calling me, “Fire Bug!” Last month my mother started with the hallucinations & trying to escape imaginary flames. Mind you, my mother is immobile & only gets transferred from bed to wheelchair or to commode with lift machine. My mother also has hit & pulled hair….I have part time aide. So I called ambulance. They ruled out UTI. She was in ER for a couple of days. The rehab facilities that were willing to take her I didn’t like. One of them she was in 5 years ago when she needed emergency surgery & it was terrible then. The other one was not convenient for me to get to & far. While in ER, she got psych consult…he called me & recommended higher dosage of what she already was prescribed. I took her back home & she had a couple of screaming 😱 days…but none for about 10 days. 🙏🏼🙏🏼Hopefully, she will stay calm with no hallucinations or screaming! BTW, instead of raising dosage, I lowered it. I also added 10mg melatonin before bedtime.

If your mother is able to walk & wanders…I addition to violence, this …if it was me, wouldn’t bring her back home.

Facility will get your mother stabilized & calmer…& let Social Worker get her placed while she’s in hospital. After she is stabilized, you can look for a different place. Hugs 🤗
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Abby thanks for the update.

Before your sister takes this on, make sure she spends a full 24 hours with mom, to see what her care entails.

You have a golden opportunity to place her directly after this in-patient stay. Please consider the toll bringing her home will take on everyone.
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Abby2018: Imho, do not bring her home, claiming it to be an unsafe discharge to the home. It appears that your mother may need to be housed in a Memory Care facility.
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LBD can cause severe hallucinations that can be very frightening for sufferers. It might be best to let the doctor know about her hallucinations and violence towards others. She would probably be best served by spending several weeks in an inpatient psych ward - preferably one that cares for geriatric psych issues - for evaluation and treatment until she is stable. Then, the family can talk with her medical/psych team and social work to discuss where is the most suitable place for her to live.

In short, nobody can "make you" take her home if you feel threatened,
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Talk to the doctor about a rehab or maybe mental type facility to take her next and see if they can get her calmed down with meds. Medicare will pay X number of days for these types of facilities.

Tell dr that she already attacked your dad so her being released to live where he does is just not an option. You can't let her violence harm him. Other than placing her temporarily to get meds straight, ask dr what kind of a nursing facility he would recommend. Memory care, nursing home, etc? And ask that he start the process of completing paperwork to support that kind of transfer. Make sure social worker at hospital is aware of same info because they can help you w/transfer and perhaps offer some suggestions.
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My sister in law had to do this to get her brother into a nursing home. She brought him to the ER and told them that she can't take care of him anymore and the doctor told her that they aren't a babysitter for him. She left him there told the ER there is no place for him to go. She had his doctor saying the same thing so he went to a nursing home. The nursing home took very good care of him which she couldn't do anymore. When the nursing home got covid we lost him to covid. But he did have a good life there because he was taken care of.

You may have to do this for your mother. Get the doctor on board with this decision. Then tell the social worker at the hospital there is no way she can come home there is no help for her there it will put her life in danger.
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Abby, how are you all doing today?
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Abby2018 Dec 2021
Hi Barb.....thanks for asking. Mom was transferred to the the geriatric behavioral wing at a hospital here in state. The first night she attacked her roommate by trying to pull her out of bed and hitting her. She was subdued with an intramuscular injection. Now they are trying to calm her and decrease her anxiety which is only sporadic since she refuses them most of the time or will spit them out. She's only five days in, so hopefully in the next week or so they will find the right meds to calm her to the point where she can come home. My sister has offered to care for her during the day. She is a healthcare aide (25 yrs.) that dealt mostly with homebound geriatric patients. What makes this most difficult is that physically she is very healthy for her age. With no serious underlying ailments, hospice is not even a consideration at this juncture (so I'm told). Dad is another issue altogether since this has taken a toll on him as well. One day at a time. And reminding myself to breathe.
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I am so sorry for what you and your family are dealing with. Unfortunately, most caregivers of family members with Lewy Body get to the point where you are now. LBD can cause the person to have violent outbursts and it becomes unsafe to manage them at home. Ask the hospital for a social worker and let them know that is is no longer safe to have her in the home and tell them she cannot go home with you and that she needs to be placed in a LTC facility where she can get the help she needs. You will need the help of this social worker because it can be difficult to find a facility that will take someone with a history of being "physical" or violent. Do not agree to take her home. That is your only leverage that will force them to help her.
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Talk to your dad about his feelings in the matter. You might suggest to him that she is not in control, but the LBD is taking over and it has become dangerous for everyone involved. Then enlist the social worker at the hospital. Have them provide you a list of memory care facilities nearby that you and your dad can visit. You may be able to have her evaluated at a psychiatric facility for medication adjustments if the hospital says she needs to discharge. That will give you a day or two to find the facility that she can live in. This is a tough transition, but your dad (and you) will have a more peaceful time and will still be able to visit her to ensure her care is adequate.
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Refuse to take her home. Say she’s not safe nor is your dad.get a discharge planner/ social worker involved and have her placed
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No, you cannot be forced to accept your mother home, but this should have been addressed on admission--that you cannot and will not accept your mother home; that you are afraid of her and that it is an unsafe situation, that she requires placement and Social Workers should be notified at once that she will not be coming home.
They cannot force you to receive her into your home. And the best way to work through what is needed for placement is now, with the help of hospital social services.
I am wishing you good luck. Let the nurses know TODAY that you need social services, that you cannot accept your mother. The fact you didn't tell the doctor who spoke with you that this is the case is going to make this much more difficult, but not impossible.
Just keep saying no, and make it clear that if an ambulance comes to the home you will refuse entry into the home.
They may go with some rehab to put it off a bit, just keep requesting social services and a way to work toward her placement.
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Dementia is tough and it is difficult to deal with some of the aspects of the disease.
LBD in particular is difficult as it is one of the dementia's that is more prone to violence. Added to that it is one that medications are difficult. Many of the drugs that are given to quell anxiety in other dementia's can not be given to people with LBD, The results can be fatal.
This in not anyone's fault, it is the disease.
Talk to the Doctor, talk to the Social Worker. Explain that it is not safe for her to be discharged to home.
It is not safe for your dad, or other caregiver, and it may not be safe for mom if she is trying to "search" for this child or the person "harming" her.
Finding a facility that will accept someone that has been violent can be a challenge but once the correct medication is found, the correct dose she should do well. Most facilities will want 90 days without incident. (some more, some less) The Social Worker may be able to help in this search.
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Santalynn Dec 2021
Thanks for insight into the various dementias, the kinds of issues with each. Very helpful information. A person so afflicted is a danger to themselves and anyone wanting to help, even tho the level of care is beyond their capacity. It is not weakness nor 'abandonment' to have the afflicted person placed, but a loving step for everyone's safety and peace of mind.
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Abby, welcome back. I'm so sorry this is happening.

Find out if admission to a psychiatric unit-- perhaps there is a "senior behavioral unit" nearby--so that different meds can be trialed.

At least within my family, when wandering and violence set in (my sweet uncle was beating my poor aunt black and blue so he could get the keys to go take a walk on the highway), placement in a locked Memory Care unit was the only option. He thrived there!

Steadfastly refuse any suggestions that your mom should return home. It's an "unsafe discharge". And make sure she is admitted and not "under observation".
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