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 Resisting care in nursing home 
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Resisting care in nursing home
The nursing home staff feels my mother has deteriorated to the point where she needs more help with her a.m. and p.m. "cares." They started trying to help her last night and she refused. Tried again this morning and she refused but also became hysterical and called me, saying she refused to let them do what they wanted to do to her. I spoke with the nursing director, who also said my mother has a (new) large bruise on one shoulder that is new and my mother has no explanation for how it got there (DON says it looks like she ran into a door or a wall). First time she has ever bruised herself since she went there 10 months ago. So now they are particularly concerned about falls (my mother is supposed to use a walker but often doesn't use it in her room--I don't think she forgets, I think she believes she does not need it).

She told my sister she was proud of herself for "standing her ground" and she didn't need help with her personal care (they are concerned, among other things, that she is no longer able to do her "peri care" and I think that may be what really set her off).

From what I can tell, my mother is becoming really very obnoxious and obstructive (a huge personality shift for this usually very mild mannered person). She is in the best facility in the area. It is private. So I am really concerned that it will get to the point where the NH kicks her out because of her uncooperative behavior, and I don't know where else she could go. I spoke with her doctor, who knows the facility, and she has the same concern. She is going to see my mother tomorrow and also speak with the DON to see if there is anything that can be changed to avert this disaster.

Meanwhile, does anyone have any suggestions? Is there any point in trying to explain to my mother the consequences of her bad behavior? Will she understand, or even remember? This is so hard because I know I am thinking rationally and she is not.

This is just one of a cascade of changes in her condition and function. I sense one of those big shifts coming on and it really worries me. It is distracting me from other important areas of my life, like my husband and my work. I need to get back to my t'ai chi and meditation, which of course I neglect when I spend hours every day trying to untangle this or that for my mother. Thank goodness for this forum and the opportunity to vent and seek advice from those who know better than I!

Julianne


Tue Dec 21, 2010 9:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Resisting care in nursing home
Hi Julianne - sounds like things are progressing "normally" for a neurological condition like LBD and other similar diseases.
Does this SNF have a dementia unit? Staff in the regular parts of ALFs and SNFs don't seem to be trained in recognizing or dealing with dementia-related behaviors from what I've seen. Either your LO has to be in a dementia unit, or you and the nursing staff need to educate the CGs on how to deal with dementia behaviors, if you want to get the best care for your LO.
Did you see the discussion a few days ago on "arguments with furniture"? Rationalizing with an irrational person who has dementia is usually fruitless and frustrating. Plus, you are right - they will forget 2 min. later even if they did get it when you did your logical explanation. So, you have to be the one to make the decisions, go along (to some extent) with illogical things they say, deflect as much as you can, and just not get engaged in conversations that will go nowhere.
I finally learned that when my dad said "take me home" not to say "I can't" or "the ALF won't let you go" or whatever the real reason was I couldn't take him anywhere in the car. I learned to say "I'm working on a way to get you out of here and it's going to take some time." He'd calm down and accept that. 20 min. later or the next day he wouldn't even remember the previous conversation and it would start all over again.
You do need to take care of yourself and try to find some balance. It is really hard juggling being a CG, a wife, a mom, an employee, a friend, etc. Some role always gets the short end of the stick! 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 Dec 21, 2010 9:21 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Resisting care in nursing home
I only have one thought (besides the obvious - sedation). Perhaps the nursing home staff can take a different approach, especially with regard to "peri care." For example, have you ever seen the book or video "Bathing without a Battle"*? It's a training for how nursing home staff (or family caregivers) can bathe their residents (or LOs) in such a way that they'll be compliant? The bathing is made to be a soothing/relaxing event. Perhaps "peri care" can become an event associated with aromatherapy and something nice??

* http://www.bathingwithoutabattle.unc.edu/


Tue Dec 21, 2010 9:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Resisting care in nursing home
Julianne, if you happen across my thread about 'Arranging Respite Care' you will see that my husband is having the same difficulty at the SNF. I honestly do not know what to do when he refuses care and help. I did tell the staff that, when he is able to walk with the walker to let him as much as possible. But he has deteriorated to such an extent [not since being in the SNF--I only put him in there on Thursday--but over the past couple of months] that I'm concerned he is simply not getting the care he requires. He won't/can't use his call lights, is unable to communicate his needs [I can't understand him most of the time, either] and is often resistant at best, combative at worst.

I hope you get some answers to your post--I desperately need them, too!

_________________
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.


Tue Dec 21, 2010 9:30 pm
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Post Re: Resisting care in nursing home
Lynn, Robin and Pat, thank you so much for your thoughtful replies!

Lynn, somehow it is comforting to hear that this is "normal" progression for LBD, as awful as it is. And I do need to be reminded that it is no use to argue logically in these situations. Her facility does have a dementia wing. Maybe she would be better off there if the staff is better trained in dementia. Recently, my sister and I have noticed that our mother has withdrawn from the few activities in which she participated just a few months ago. My sister is actually the one who made the connection that the group commotion may be overstimulating for her so she retreats to her room. The staff just keeps trying to get her to participate--perhaps a reflection of their lack of understanding of LBD or dementia in general?

Robin, the strange thing is that my mother, who is continent, gets a weekly bath in a whirlpool type tub (used to get showers but the tub helps her bad joints), and the nurses put her in and bathe her, which she does not mind. Maybe there is something about the way the peri care was introduced that was offensive. I need to look into that.

Pat, I know it is a worry when you don't know if the care is adequate. My mother is fortunate in that most of the time she can communicate her needs (unless she becomes too agitated and then she just stammers or repeats the same few words). Though she forgets about the call lights and forgets she can ask the nurses for what she needs--usually, she calls me instead, and then I call the SNF and tell the nurses!

We are coming up on the one-year anniversary of my mother's last Christmas in her own home (my husband and I went over there and I made Christmas dinner, instead of bringing her out in the cold to our house). Little did I know how much different the next Christmas would be! (She was diagnosed and admitted to the SNF in February, 2010.)

Julianne


Tue Dec 21, 2010 11:07 pm
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Post Re: Resisting care in nursing home
Julianne,
I wasn't suggesting to use the bathing techniques with your mom but to adopt that same mindset that the UNC people have adopted -- trying to make hygiene something that is comforting, warm, and aromatic. As you say, perhaps re-introduce peri care in a new way.
Robin


Wed Dec 22, 2010 1:06 am
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Post Re: Resisting care in nursing home
Julianne,
I am glad you realize trying to reason sometimes is next to impossible, that's our expectation of our LO's, sometimes we have to keep trying different things until we find what works best and I agree a dementia unit probably would be best as they are able to deal with the resident in a better way

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Irene Selak


Wed Dec 22, 2010 12:54 pm
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Post Re: Resisting care in nursing home
Another brief comment on the Hygiene, Earlier on in my husband's illness where he was still capable or so I *thought* he was to take care of himself he stopped showering, he washed everyday in front of the bathroom sink from head to toe and I couldn't figure it out and he also was fairly argumentive then too, one day I announced he could no longer sleep in our bed, this was after many months of not showering, but the day I told him this I also asked would he like some help and after awhile he thought about it and asked if I could just stay close to bathroom just in case and it dawned on my he had a fear, perhaps he had slipped on another day and it just scared him, well I took it a step further and actually helped him in the shower and got him seated and he did the rest and of course over time he needed more and more help, but after that day he wanted that shower every morning, so bottom line he had a fear of doing it on his own and just didn't know how to tell me or ask for help!

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Irene Selak


Wed Dec 22, 2010 1:03 pm
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Post Re: Resisting care in nursing home
What I saw with my dad and his best friend (who had AD) was that they started retreating from groups of people and then people they didn't know well. Their world grew smaller and smaller and I think a lot of it had to do with their embarassment and frustration over not being able to "talk right" or "do the right thing" or find the words, or be able to be understood. They were cognizant enough to know that they weren't functioning normally and they didn't want to put themselves in a situation where they'd be embarassed or frustrated. So, they retreat to their rooms, they don't want most people seeing them, etc. My dad was very lonely in the ALF but refused to participate in most activities. He was ok about sitting at the table with several men whom he'd eaten with when he moved in, but it was a small, quiet group. It is sad to see, but I think it's probably another part of the normal progression of these diseases. Lynn

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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 Dec 22, 2010 5:01 pm
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Post Re: Resisting care in nursing home
Wow, Lynn, your description of your father and his friend is right on target with where my mother is right now. And also the nurses tell me that my mother gets very nervous in large groups, and she wants to leave. I wonder if she is at the point where those situations are overstimulating to her? Anyway, it is just really sad to see her world shrinking.

Robin and Irene, your suggestions are great. I will have to look into how the peri care and bathing are done to see if there can be changes that make her more comfortable.

This evening, I had a long discussion with her that was touched off when she happened to say that she was glad she had "stood her ground" with the nurses about not wanting assistance. I suppose it was a waste of time, but I told her that the nature of her disease was that she would have more difficulty with some activities but might not be aware of it, that the nurses would be aware of it and would step to help, and that she should trust that when the nurses did things, it was for good reason and she should cooperate with them.

We went around and around, and I found myself wondering why on earth I had started the conversation, but eventually she did say that she understood. Now, I don't suppose she did, but it was a learning experience--I need to resist the urge to have a logical conversation with someone who can't use reason anymore! As a lawyer, it is just so ingrained into my thought process, but I will work on it.

Thanks,

Julianne


Thu Dec 23, 2010 12:21 am
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Post Re: Resisting care in nursing home
Quote:
I need to resist the urge to have a logical conversation with someone who can't use reason anymore!
Yep. And it's hard to do!

Some time ago I found that one reason my husband retreats from groups is that he simply can't stand the sound of chatter. He has become, either due to the disease or to the medications, hypersensitive to sound. Even hearing me talking on the phone will annoy him.

_________________
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 Dec 23, 2010 1:14 am
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Post Re: Resisting care in nursing home
Many with neurodegenerative conditions are hypersensitive to sound.


Thu Dec 23, 2010 2:02 am
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Post Re: Resisting care in nursing home
So, maybe it is a good thing that my mother has a hearing loss?! I suppose noise could still bother her, though. Come to think of it, she has a hearing loss and refused to consider hearing aids, but she used to blare the sound on her TV and lately I have not noticed her doing that. Interesting. I did not know that people with neurodegenerative conditions could be hypersensitive to sound. There is just so much to learn about Lewy.

Julianne


Thu Dec 23, 2010 3:13 am
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Post Re: Resisting care in nursing home
I got a call this week that my dad was being combative, cussing, argumentative, etc...
and they needed to medicate him for behavioral problems at the nursing home.

Right now he is on nothing except Celexa and on occasionnal xanax. (I think the xanax which is an anti-inhibitor may be actually making this worse) - well, I mean as far as his mental condition he is on nothing but those two. He is on many medications for diabetes and related problems.

My dad is extremely sensitive to any cold, allergy medications, muscle relaxers etc... they make him nuts. So he is not on anything for dementia now, I have gotten him off all those drugs so now he is alert and his personality has returned. Unfortunately his personality is
"kiss my a##" . and he cusses just as part of his vocabulary.... always has. SOB this and SOB that... GD this and GD that.... He has had to tone it down at the VA home but I think now that he is taking xanax (anti-inhibitor) he is letting it all hang out.... He is cussing and saying things he would normally repress and they are looking at this as being behavorial problems... what it really is, is his true personality coming out and being worse... like being more obnoxious when you are drunk.

THEN... it has progresses to now he is delusional and believing weird things again after months of not having this problem ... so put that together with the return of his alertness and personality and now it is getting bad.

When they have to clean him after an accident.. (he has a sore on his foot and cannot get out of bed anymore, the sore was caused by NH staff putting his shoe on wrong)... when they clean him after an accident he is sometimes fighting them, thinks they are molesting him, etc.... He gets so upset by accidents that they can set off an episode of delirium.

He tried to strike out and hit them this last week because he thought they were torturing him (he has very sore private parts).... I talked with him and tried to tell him they were only doing what they had to do... but he was very clear and logical in his belief that they were treating him disrespectful... etc....

ANYWAY, I am not sure what to do. They have to be able to take care of him so I know they may have to start drugging him.

So far the doctor prescribed MORE xanax for his behavior problem but I don't think it calms him... I think it gives him courage to speak his mind and to cuss.

I am rambling on - does anyone have any suggestions about this? I got my dad off all the medications they had him on because he was practically comatose and hallucinating all the time. Now he is much better mentally and alert so we can at least visit. But now he is getting combative and believes his dreams are true.

What is the first recommended medication to try? I really want them to do one thing at a time and see how he reacts. I also wonder about the xanax.

Before the problem was they prescribed several medications at once, and gave him cold, allergy etc... all at the same time and he was a mess...


Mon Jan 03, 2011 2:37 am
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Post Re: Resisting care in nursing home
Julianne wrote:
As a lawyer, it is just so ingrained into my thought process, but I will work on it. Julianne

Dale is also a lawyer, Julianne, and he is always wanting to 'take legal action' against someone. This morning it was against the 'three guys.' He said he was 'surrounded with aspestos.' I didn't ask who they are because I know I will get into a circular discussion with him. Those are never productive. Dale never uses foul language but he always wants to argue his point.

Dale is also sensitive to most medications so our experiments with various types have not been continued. They did not make him a nicer person. His feet are also a chronic problem - which is compounded by a break sustained in high school basketball that was never set. The bones grew side by side so he wears a different size on each foot.

He is mostly on pain medication at this point. To be truthful, there are times when I get so frustrated that I'd like to give him medication that would put him to sleep most of the time. (I think some nursing homes do that routinely.)

Believe me, I sympathize with those of you who get calls about difficult behavior.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Jan 03, 2011 8:40 am
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