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 Resisting care in nursing home 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Resisting care in nursing home
Leone, I just can't imagine living with a lawyer with dementia--we are hard enough to live with in the first place! LOL! But seriously, I keep trying to have these rational discussions with my mother when it is a waste of time. She is living in another world.

And she seems to be looking out for bones to pick with the SNF staff. Yesterday morning, she called to tell me that the nurse had given her medications in two little cups instead of the usual one. She went down to the nurses' station to complain, and seemed proud for "stand up for" herself.

I tried to explain to her that it shouldn't matter whether it was one cup, two cups or ten cups--the meds were just the same. No way of getting that across. I am just so thankful she is in a good place and am concerned that she will become so difficult that they won't keep her.

Julianne


Mon Jan 03, 2011 10:50 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Resisting care in nursing home
She probably thought she was being given hers and someone else's meds. This is my nurse-rationale, anyway. ;-)

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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.


Mon Jan 03, 2011 11:00 am
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Joined: Sat Mar 27, 2010 6:15 am
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Location: USA
Post Re: Resisting care in nursing home
mockturtle wrote:
She probably thought she was being given hers and someone else's meds. This is my nurse-rationale, anyway. ;-)


She may HAVE been getting hers and someone elses. They do hate it when you question them about medications though. My dad asked, now what pills are these? (He gets dozens in a day) and the nurse doesn't even know... she has just punched them out of the packet and is handing them out. You can't blame her I guess since there are so many.

I think it is good for a person to be of good enough mind to say "Hey, what the ?" Why two cups... I really think this is a good thing to question and she should tell her POA or family in case the NH doctor has prescribed something new. My dad was on many new medications and acting bizarre before I even knew they would prescribe anything without telling us.


Mon Jan 03, 2011 11:39 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Resisting care in nursing home - administering medicatio
Dale is not in a nursing home... but he always asks what pills I am giving him. And he will remind me thoughout the day of what medications he is supposed to have. I don't dare allow him to administer his own though, because I'm sure he is so obsessed with them that he would be giving himself duplicate doses all day long.

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


Mon Jan 03, 2011 11:52 am
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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
Grace--the nurse should be able to identify the medications for the patient as well as tell him what each one is for. That's part of our job and responsibility as nurses [of course, some places have CNAs giving out meds and they probably don't have a clue, bless their hearts, and it's not their fault. :cry: ].

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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.


Mon Jan 03, 2011 12:15 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Resisting care in nursing home
Julianne and GraceGirl,

Mom also refused a lot of care when she first moved into the dementia unit she's been in for 2 months. She wouldn't let some of the CGs touch her and refused to sleep in her room. Well, there were a couple of things at work here.

Delusions were at work. And they were coupled with attitudes she hadn't had since her childhood.

Mom's first roommate was a tall, slim, woman who had lost her hair from cancer. (While waiting for a bed in the dementia unit, Mom was in Rehab.) Without hair and as tall and slim as she was, she had a masculine appearance and Mom was sure they had her rooming with a man. Hence her reluctance to sleep in her room.

Attitudes from Mom's small town upbringing worked with delusions to fuel Mom's refusal of help. My apologies to anyone who is a person of color. I hope you can understand. Mom grew up in a very small farming community in central Minnesota where, if you aren't German, Swedish or Norwegian, there's something odd about you. She hadn't seen anyone of another color or with different attitudes until she was 18 and moved to Minneapolis for school and a job. Yet, she was a leader in encouraging integration in our neighborhood (the only person of color I knew in my childhood was my piano teacher but things changed quickly in the 70's, when I was in college).

Now, in the dementia unit, about half of the CGs are of African descent, many recent immigrants. And Mom is back in her childhood much of the time. We deduced (remember Mom can barely talk) that coupling her childhood and delusions caused her refusal of help from anyone of color. Like a child, she was fearful of people who were not like those she knew (in childhood).

Since Mom started the Seroquel, the delusions are gone and Mom has no fear of her CGs.

Often, I think, there are a number of factors at work behind what is termed "behavior." Finding them and dealing with even just one of those factors can make a world of difference.

Good luck.

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]


Mon Jan 03, 2011 2:26 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Resisting care in nursing home
What great insights, Kate!

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


Mon Jan 03, 2011 2:37 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Resisting care in nursing home
Good points about questioning meds. I know that medication errors can and do occur, and it is best to ask when in doubt.

It was more the way my mother addressed it--angrily and suspiciously, not merely being cautious. She also displayed her own form of bias--in this case gender bias. There is one male R.N. at her SNF and she really doesn't like him. I think she has very traditional concepts of roles, and nurses are supposed to be women! Oh, dear. Of course, he would have to have been the one who gave her two cups of meds.

Also, I think it is a control issue. She has lost control of so many things in her life that she seems to enjoy exerting control anywhere she can--hence the "standing up for herself" attitude.

Julianne


Mon Jan 03, 2011 5:16 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Resisting care in nursing home - loss of control
Loss of control is involved in so many areas here. Dale can walk just fine when he is in control and makes up his mind to do so. It's when I want him to move somewhere that he becomes totally paralyzed. It is as if his brain shifts from 'I want this' to 'she wants this' and back again.

If he is fixated on something he wants that is not within reason for him to have, he will ruin the whole morning for us both if he can't do it or get it. I say it's his 'terrible two' syndrome.

Today, he wanted to go to California and he was eager to find a way to get there.

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


Mon Jan 03, 2011 6:54 pm
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Post Re: Resisting care in nursing home
Leone, "fixated" is right. My mother will decide she needs to talk with me. My staff knows not to answer her calls, but let them go through to my voice mail. (If it's really urgent, the SNF will call, and everyone knows to put them through.) My smartphone is set to a special ring for her, so I don't even have to look to know it is my mother.

But if she gets something in her head, she will call every two or three minutes forever--fixated on talking with me. On Saturday night, I was away from the phone and she just flipped. By the time I called back, she was just stammering but even after she calmed down, she couldn't remember why she was calling. It's remarkable.

When I was a kid, my father was trustee for a woman with mental issues whose wealthy parents had died. When she got upset about something, she would call and call. And she had our home number! Sometimes Dad would come home from the office and tell us not to answer the phone, because he knew she would be calling. (This was before caller ID or voice mail or any of those handy things.) It drove my sister and me nuts! But now my mother is acting basically the same way. How ironic.

And I think you make a good point, at least as far as my mother goes. Like Dale, she does so much when she is in control. I hadn't thought of it that way until I read your post, but it's true. It's not really surprising, I suppose.

Will we ever adjust to Lewy?

Julianne


Mon Jan 03, 2011 8:18 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Resisting care in nursing home
I think fixation is the term that best describes some of their behavior. Derek gets fixated on a subject and never lets go of it. Most of the time I am clueless as to what he's talking about so I just try to agree, nod my head, whatever, but the questions just keep coming and the answers just aren't there. :|

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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.


Mon Jan 03, 2011 9:15 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Resisting care in nursing home
Yes, when they do get fixated on a subject they cannot let it go. The subject today is the telephone. My phone won't hold a charge and I have to go out and either but a new battery or a new one. Since 6:00 am this morning he has been nagging me to do it. It seems he never lets me up for air. Well at least it is not about his meds today as it was over the past 2 weeks. I had to hide all meds because he took a double dose last weeks of his morning pills. As I am writing this he is still nagging so as to humor him I better go. The king has spoken.


Tue Jan 04, 2011 11:25 am
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Joined: Mon Dec 27, 2010 11:34 am
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Location: North Carolina
Post Re: Resisting care in nursing home
Bernie- :lol: Wow, I wasn't on here much at all yesterday and really missed your insights and the humor related to Lewy.

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Katie (36) daughter of Marcia (70)


Thu Jan 06, 2011 1:03 am
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Post Re: Resisting care in nursing home
After several weeks of relative calm, this problem is rearing its ugly head again.

I called Mother this morning and she was very upset. Apparently, an aide was sent in to clean her “backside” because she smelled. She got very upset on the phone with me, crying so hard that she couldn’t really explain very well. She said ever since she had been there, she had not had enough towels and toiletries. I know this is not true so I asked her what she needed and she couldn’t explain. I think it was just an excuse and she feels embarrassed that she was told she smelled and that she had to be cleaned.

I told her that the staff was just trying to help her, and that they have plenty to do so if they try to help her it is because she needs help. She didn’t really accept that at all. I reiterated that if the staff feels she needs help, she should accept that she does need help and accept the help.

I called the charge nurse, who confirmed that an aide was sent in to help my mother. They feel she needs more help with her cares now. As an example, yesterday, my mother had an accident in the bathroom—urinated on the floor—after which they had to help her clean up. She also said that they are in between a rock and a hard place because my mother does not understand that she needs help and resists it. I told the charge nurse that it was fine with me (being her HCPOA agent) if they provided whatever assistance they feel my mother needs.

I don't know what else to do but it is so sad and frustrating to listen to my mother wailing on the phone about something she doesn't understand or denies. At the same time, I want to keep the peace with the staff. Any suggestions?

Julianne


Fri Apr 15, 2011 12:43 pm
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Resisting care in nursing home
Julianne,
would your mother wear incontinence wear. I had the same problem with Dad - he didn't want any help at all with his toilet, and he was having accidents all the time, which of course, I had to clean up. Dad refused to wear any incontinence wear. I had an uncle of mine call and pretend to him that he himself was using pull-up briefs, and since then, Dad has started using them and my life has been so much easier. He was dead set against the idea, even though he had been having embarassing accidents, (I didn't mind so much, but I could tell it was getting him down, it was yet another admission of his failing ability to care for himself). The fact that someone his own age and of like mindset, was using them, made it more tolerable for Dad. If you could get a close friend of hers to talk to her, would she understand, or is she beyond understanding. Hope you find a solution that works for you both,
Ger x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Apr 15, 2011 1:10 pm
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