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 My mother is (falsely) accusing SNF aides of abuse 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: My mother is (falsely) accusing SNF aides of abuse
It is a sad part of the disease, Julianne, and so frustrating. When I got 5 calls from my dad one evening about his remote control being on the floor and how I needed to "come down" and pick it up for him, that was about the first of many conversations like that. I'd spent the entire day with him at the ALF, finally left about 5 pm, drove an hour back to his house, then went out to dinner about 20 min. in the opposite direction from his ALF.
I was trying to have a glass of wine and relaxing dinner with friends and he kept calling and calling. I'd call the ALF front desk and ask someone to go to his room and pick up the remote. If they didn't go within 5 seconds he was calling back. Then he couldn't remember how to use it..... It went on and on. I was so close to heaving my cell phone into the Chesapeake Bay that night! It was only the beginning of many, many issues like this.
If I didn't answer my phone, he'd call his friends and do the same thing. Then I'd feel really guilty that he was calling them, so I didn't dare not answer when he called. That whole ordeal lasted over 6 months, until he could no longer use the room phone and his cell phone went through the ALF laundry. My stomach is in a knot just thinking about that time..... It was so hard feeling like I was his lifeline 24/7. Sometimes those "drama queen" calls were in the middle of the night. And that is such an apt description, Julianne. I know he couldn't help it, but it was very, very draining on all of us during that time. I know how anxious and frustrated you must feel having gone through very similar scenarios. I was very thankful for this forum because no one else really knew what it was like to be in my shoes except the people on here.
Sending you and everyone a big hug, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Aug 02, 2011 10:08 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My mother is (falsely) accusing SNF aides of abuse
Julianne…

I am sorry you are having to deal with this with your mother, but, I am happy that you are…

I also want to apologize for my previous posts in this thread.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Aug 03, 2011 2:22 am
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: My mother is (falsely) accusing SNF aides of abuse
Craig,

Thank you. I appreciate that but also I know you were just trying to help.

Julianne


Wed Aug 03, 2011 9:21 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: My mother is (falsely) accusing SNF aides of abuse
Thank you all for posting this. My mother was asked to leave Assisted Living last April because she would have dreams that some of the staff were abusing her and she would be absolutely convinced that she was bruised from the experience. She would wake up and call me panicked, then she would think about it later and realize it hadn't happened. It didn't matter to the Assisted Living Facility. They felt that she was a liability and asked her to leave. Reading these posts, if I had only read posts like these a year earlier we might be in a better situation now. My mother is in a Memory Care Unit now and is living closer to my sister since I could not find a facility near me that would take her after three psych visits (that wasn't a nursing home - and there are days when she appears to have nothing wrong with her). I have been amazed at how nearly every post on this thread applied to her situation (which is both very sad and very very comforting). I feel so bad for my mother. She has lost so much. On the other hand, she has always been a very dramatic person and an attention seeking person, so it has been very hard for both my sister and myself to sort through the behavior issues due to bi-polar and other problems that my mother has always had and what is the LBD. I feel like my sister still has so much anger from her childhood that she brings that into my mother's care. The facility that my mother is at think that my mother is making up a lot of her issues and they refuse to help her a lot (or so my mother tells me). My sister is worn out after only 6 months and is now refusing to talk to me and when she does send me e-mails they are short and refer to my mother by her first name and not by mom (my mother told me last night that she finds this very hurtful). I understand my sister's frustration, being the person on the spot is hard and I did have mom for a year and a half (much of that time in my own home). I just wish I could find mother a facility in which they understand LBD. The staff at the memory care unit my mother is in say that my mother doesn't have LBD and that she just doesn't want to do stuff for herself. They seem to think they know more than my mother's doctors and they tell me things frequently that suggest that they haven't a clue what LBD even is. Anyway - thanks for the initial post and to all of you who replied to it. I have found it to be very helpful reading.

Liz


Wed Sep 14, 2011 11:01 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: My mother is (falsely) accusing SNF aides of abuse
Liz - maybe it would be good to see if there is another facility that knows about LBD and can give your mom better care. Seems like that would be better for all of you, even if it is further for you or your sister to visit. Is it possible to look for another place? I feel so bad for all of you. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Sep 14, 2011 10:52 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: My mother is (falsely) accusing SNF aides of abuse
Liz,

It is hard to find a facility that knows as much about LBD as we would like them to. How about you educating them? There are a lot of great resources on this website. Look in the headings that sound like they are for medical professionals. I found that it is easier to print the information out and hand it to the doctor, nurse or administrator than to suggest websites. Few of them will actually work at the research themselves. But they are less likely to ignore information that you hand to them. One thing I like about the info that can be found here for professionals is that much of it is presented in simple, easy to read, form. There are even leaflets and single pages you can post that cover the basics. Most of the practitioners I've used this approach with actually appreciate the help. They just don't have the time to do the deep research or read long articles. They need something they can review quickly and then, if they can, look for the long articles for spare time reading.

But I also want to talk about being raised by someone who is bipolar. My sister has been diagnosed and, for the last 25 years, treated for being bipolar, having PTSD, manic and clinical depression and a whole host of other things (depending on who she is seeing at the time). Her sons had a rough time in adolescence and in becoming adults. I'm very proud simply of their survival. I hope that both you and your sister have had the opportunity to talk with a professional that can help you deal with what I'm sure you experienced with a bipolar mother. From what you have said about your sister, though, I'm guessing she hasn't worked through it or is getting help but is in that stage where it is more about what has happened - which comes before how to work through it. Take your sister with a grain of salt. And recognize that her relationship with your mother is her relationship with your mother. You can't control it and you can't fix it and there is no point in worrying about it because you can't change the past or how both of them feel now. Concentrate on your relationship with your mom, forgive where you can and do what you can for her without tearing yourself apart.

The memory care unit may just be the best place for your mom, in her situation. In the unit my mom is in, many people seem normal or rational, until they are not. And that can happen in an instant, and then later they are back to being normal and rational. That's what this stuff is like. Never a dull moment.

One of the advantages of being in a dementia unit is that the staff expects things to happen. They are ready for it and know how to deal with it. Talk with the nursing director there or the administrator about your mom's history. I suspect that they will assure you that your mom is safe there and unlikely to be asked to leave, regardless of her behavior. Spend a day there and your mom's behavior might not seem so challenging, when you see what the other residents do.

Then, if you are able, just love her and give her the assurance that she is not alone. And leave your sister to define her own relationship with your mom. Ignore the way she writes and just glean whatever information you can from her messages. At least she is writing.

Best wishes,

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 15, 2011 1:33 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My mother is (falsely) accusing SNF aides of abuse
Liz, finding a facility that knows about LBD is great, but finding one that is willing to learn is almost as good. My local LBD CG support group was started by the daughter and sister of a lovely woman with LBD and it meets in the care center where she lived. I think she was their first LBD resident, but they were very open to learning from materials the daughter and sister gathered, and by sitting in on caregiver meetings. Of course this isn't going to work in a place where they think they know better than specialists how to diagnose dementia. Sigh.

Good luck!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 15, 2011 1:49 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: My mother is (falsely) accusing SNF aides of abuse
One thing that I forgot to mention is that the bipolar disorder could be masking some of the LBD symptoms so that an aide or LPN might not see it. And refusing to do things for herself is very bipolar.

Also, the average aide or LPN is unlikely to have a huge background in the different types of dementia or in recognizing and diagnosing it. They have no business telling you what your mom does or doesn't have. Talk with the nursing director or the administrator. You will usually be talking with an RN or at least someone with a little more medical education. That's no guarantee that they know much about LBD or can differentiate between differently types of dementia. It's tough for doctors to make that distinction, so it stands to reason that an aide or LPN would have trouble with it.

What your mom's doctor has put in her chart is what she very likely has. If someone else, particularly someone with little or no education in the dementias, is trying to tell you something different, it is time to escalate the issue to the nursing director, clinical coordinator or administrator. You have a right to do it. You also have a right (with POA or as next of kin) to read your mom's medical chart. Even if it is all Greek to you, looking like you are going over it is a good thing for the staff to see.

Again, best wishes.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 15, 2011 1:50 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My mother is (falsely) accusing SNF aides of abuse
Craig, I definitely see where you are going. It must be a real bummer. When I look through old notebooks my husband kept in the early stages of this disease it saddens me to realize how desperately he was trying to reinforce his version of reality. And, at that stage, he was still 'right' most of the time but the fear was obviously there--the feeling that his intellectual grasp was weakening and that reality was beginning to crumble around the edges.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Sep 15, 2011 10:08 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My mother is (falsely) accusing SNF aides of abuse
Pat…thanks for understanding and taking the time to reinforce…please do for others

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Fri Sep 16, 2011 2:23 am
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Joined: Tue Aug 30, 2011 1:42 pm
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Post Re: My mother is (falsely) accusing SNF aides of abuse
Thank all of you so much for your thoughts. All of you definitely have good information to share and that is so valuable to me right now. I am looking for another facility for my mother at this point. The facility she is at, while a memory care facility, seems to have no real knowledge of LBD and they don't seem to be terribly interested in learning (or my mother is being dishonest about what is going on there - which is possible since her understanding of the intentions of the people around her right now are very skewed). I have been troubled by things the head nurse has said to me about my mother's medical situation that I know are not true. She explained to me once that my mother was not having panic attacks due to the fact that they were not always prompt with her Stalevo (I guess by law they have an hour on either side of a drug time to deliver it). My mother starts to get more and more agitated about a half hour before her medication time. Both of the neurologists she has seen lately have said that is due to the drug's wear down - the head nurse told me that she consulted the PDA and there is no wear down for this drug. My mother's neurologist prescribed carbadopa levadopa for an hour before the Stalevo time in hopes that the drug would "boost" things and allow my mother to keep the Stalevo doses far apart (she has had psychotic episodes when the doses of Stalevo hit a certain level). The nursing staff at this current facility (and the last one) insist on combing that dose with the Stalevo (and it is within their 1 hour right to do so I guess). This does not address the anxiety problem which which is one of the triggers for her behavioral problems and her extreme gut pain - worrying about the drug wear off and that she will not get the medication in time. For what these places cost, it is amazing to me that they can't accommodate frequent pill distribution. Unfortunately, my sister has made good friends with many of the nurses at this facility and it is going to be ugly when I do find another facility to move my mother to. But mother is very unhappy and the staff totally believe that everything she does is a behavioral choice on her part. No one has been willing to read the information on Lewy Body Dementia that we brought to them. I am discouraged. I had no idea that navigating my mother's care at this stage in her life would require so many things that seem to have no real relationship to the disease itself (other people's personal baggage, the fiscal and staffing desires of the facility, etc.). Finding her the care she needs has been a lot more challenging than I would have ever guessed. At least we have a good neurologist now - but mom can only get into her every two months (sigh). Once again - thanks everyone for really insightful comments. Liz


Fri Sep 16, 2011 11:11 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: My mother is (falsely) accusing SNF aides of abuse
As you know, Stalevo is carbidopa/levodopa and entacapone. And carbidopa/levodopa in any form can increase agitation and anxiety. It certainly does not alleviate it. While my husband needs this drug to avoid complete stiffness and in order to be able to swallow and talk, he requires Seroquel to help moderate some of the side effects which, aside from agitation and anxiety, include hallucinations and delusions. He takes carbidopa/levodopa five times a day. If your mother's facility cannot accommodate appropriate medication schedules then I would also look elsewhere. Most dementia units are essentially assisted living facilities and not skilled nursing facilities and they will balk at certain medical procedures.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Sep 16, 2011 11:42 am
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Joined: Tue Aug 30, 2011 1:42 pm
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Post Re: My mother is (falsely) accusing SNF aides of abuse
Thanks Pat. I am unfortunately trying to figure out how to accommodate the fact that my mother is often lucid and wanting to be part of a community in which people are reading books and playing games and doing stuff (and in which she can decorate and have her nice things around her in a pretty room) while at the same time trying to get people with medical knowledge to care for her. This combination seems to be very very difficult to find (or I don't understand how the system works). In all fairness, her pain and anxiety is keeping her from participating in any community that she can find there. She had started a book group, but then had to cancel it when her anxiety took over and she couldn't leave her room. She is also on Seroquel. When I first moved her to that facility, their "on sight" psychiatrist took her off of the Seroquel against my wishes. I knew that they had stopped the hallucinations. But since she had moved to MI from IN, I was no longer the "daughter on the spot," so I had no real control over the situation. That same psychiatrist announced to the staff at the facility and my sister and my mother that my mother didn't have Parkinson's. Rather than deciding that what she had was LBD, though, he told the people at the facility that my mother's problems were all behavioral (sigh). We have since found a different psychiatrist who has put her back on Seroquil and who knows about LBD. The point I wanted to make before I started rambling was, however, that finding a place that balances the medical and the quality of life seems to be our real challenge. If my mother was capable of being incorporated into family life, I would have her here. However, we tried that and she was extremely difficult. I am certain that my husband would take the kids and move out if I were to ever try that again.

Thanks again - Liz


Fri Sep 16, 2011 12:23 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Post Re: My mother is (falsely) accusing SNF aides of abuse
Out of curiosity, how does this facility rate on the Medicare comparison? If you haven't looked at it yet, go to Medicare.gov, click on Facilities and Doctors and then select Compare Nursing Homes. From there, you should be able to select a couple for you or your sister to visit and really study.

In the choice between Nursing Home Dementia Units and Assisted Living Dementia Units, you may want to look at the former. Though your Mom will probably have an issue with the state of a few of the other residents, there are a lot of benefits, including regular visits by doctors, PAs and NPs. My opinion is that there is better control over medication use and timing there. There is usually a thereputic recreation department whose sole responsibility is to provide activities, including games and walks and other recreation that individual residents might be capable of. If you are on private pay, you might even be able to get a private room. If not, well, we brought in a couple pieces of my mom's furniture and set up a TV, etc. She has a roommate, but there really is a separation simply because of the way we have decorated her side. Mom could have a phone, but not being able to talk makes that a moot point. There's an up side to that. My grandmother had a phone and she called Mom and my aunt many times a day and kept calling her friends asking them to come get her.

Nursing homes, and dementia units in nursing homes, are not all that bad. It sounds like your mom needs more individual attention to meds and recreation. You might want to look into one.

(And you're less likely to be asked to leave a nursing home than a assisted living facility. The staff keeps very detailed notes, too.)

Give it a shot. At this point, what have you got to lose?

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Sep 16, 2011 1:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: My mother is (falsely) accusing SNF aides of abuse
When my dad first moved into the ALF the head nurse there didn't seem to know much, if anything about LBD, and reported things to his CNP that just weren't my observations of him at all. Granted, she worked at the ALF, but when I visited him, it was every day for a week or two, many hours a day, so I actually spent WAY more time with him than she did. There were a few times I thought we'd come to blows over her observations which I thought were way off base and the result was that he was given meds that made him worse in some ways. This is when I had to start fighting with his psychiatrist and the CNPs, who didn't want to listen to anything but this nurse.
Eventually the admin. at the ALF changed and this nurse left/was asked to leave by the new director. The new head nurse and the new director were very much in tune with and knew a lot about LBD, PDD, and other dementias. They were very experienced with people dxd with these forms of dementia. It was so much better to have these people in charge because they understood what he was going through and didn't discount what I was saying and observing.
Had the head nurse and director not changed, I would probably have moved him eventually, even though there were things I liked about the ALF. When I'd read the notes the original head nurse wrote I could swear she didn't have a clue who my dad was.
You need to advocate for your LO, and sometimes that means (unfortunately) having to move him/her. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Sep 16, 2011 6:31 pm
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