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 Don't be condescending, Honey 
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Don't be condescending, Honey
The caregivers truly became my husband's family and were the closest people around him. I can't see how it would have worked had they acted too professional around him in terms of interpersonal relationships. Seems like that would create the them and us separation. Here again, normal isn't always true for dealing with advanced dementia.


Tue Sep 13, 2011 12:09 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Don't be condescending, Honey
When my grandmother was in a NH, I would get soooo mad when the staff called her "Kathy." (Her name was Kathryn, or at the most familiar, Kate.) I was used to even some of her friends calling her Mrs. C______. Only those close to her (and Grandpa, of course) called her Kate.

Now that Mom is in a NH, I have a different perspective. Some female residents might not even recognize their married names. I asked Mom this weekend if she thought of herself as Clarita C_____ or as Clarita K_____ (married name). She indicated her maiden name (which is really now part of her legal name). When I used her married name, she looked at me as if I were the one with dementia. It occurs to me that many women in her unit may recognize their married name only because the staff tells them it is their name. Sometimes, Mom doesn't even remember getting married - and she did it twice. Now I understand the benefit of using more personal terms.

As for Hon, Darling, Dear, and whatever, some of my friends and I use these terms for each other, too. And, if someone in the NH either uses the term her or himself, I use it back. Whether it is condescending or not really depends on the tone of voice rather than just the word. If I called someone "box" in a respectful tone, it could be taken as a respectful term. If, on the other hand, I used "sir" or ma'am" in a condescending tone or a rude tone, it would very likely be considered offensive.

I live in Minnesota, among all of these Scandinavians and embraced the chill in my earlier life. Being a purebred Yankee (OK, a couple of people from Virginia, but they moved north), only reinforced the cold. But now, if Mom isn't offended by a term of endearment, even from someone who has only known her for a year, I'm not offended. I'm just glad they call her something - and do it in a caring or respectful tone.

Even when someone's cognition is at a low level, they can still react to what they are called. And, the lower someone is (for some, anyway), the more calming endearing terms are when spoken in a caring voice.

So, tone is what is important to me.

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]


Tue Sep 13, 2011 1:47 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Don't be condescending, Honey
Interesting perspective, Katie, er Kate. :P

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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


Tue Sep 13, 2011 8:37 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Don't be condescending, Honey
A perspective Mom taught me. "Watch your tone,young lady!" :lol:

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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]


Tue Sep 13, 2011 11:01 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: Don't be condescending, Honey
Interesting discussion, isn't it? I live in Vermont and have noticed recently more people in stores or restaurants calling me "hon, dear" whatever. I find it kind of amusing actually, because I had always attributed this communication style to southerns mostly. I thought it was funny a couple of weeks ago when about an 18-year old at the cash register in Lowe's said "thanks, honey".
Many of the CGs at my dad's ALF called him by terms of endearment, and those were the people he was closest to. Some of them, even some very young ones would call him by his last name or his first name. That seemed disrespectful to me and my sister and we had to ask several times that he not be called by his last name only. We weren't sure how to deal with the first name thing, since it didn't bother me if it was people who were "older" but when 18 yr. olds called him by his first name I tried to read his reaction and if it seemed like it bothered him, I'd politely take them aside and ask them to call him "Mr. T" or "Mr. T_____", his full last name. Some changed, some didn't.
Kate - your point is well taken. Mostly, tone and intent make all the difference for me! 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 Sep 14, 2011 11:01 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
I have thought alot about this over the course of this thread.

This is just illustrative of the many different cultural differences across the caregivers and patients and professionals caught up in this disease.

My thoughts:

In the end, what should matter is the patients wishes if within the realm of the possible.

A patient should only be addressed in ways that make him comfortable, should never be addressed in ways that have been requested to be avoided.

To do otherwise is a bad thing.

Looking at the disease and the effects of communication on the patient, being addressed in a personally offensive way can be just as destructive as a being given an undesirable drug, with just as bad consequences.

That last sentence seems kind of strong. It is based on personal interpretations that I am experiencing. I am dealing with 'words' and actions that 'set' me off. Now, this particular topic doesn't present any problem for me, because these kind of terms of endearment were a part of my culture. On the contrary, the hair on the back of my neck stands up when I hear children call their parents by their first names, and long passionate conversations with no terms of endearment and then 'no' hugging…

I think I can see into the future on a similar front….and it is scary….

I am dealing with persons who refuse to change their communication style to meet my needs (that have changed)…..and I fear that I can see how this will be dealt with later….
instead of others taking the extra time to 'learn' how to communicate and keep me calm…I will be medicated…and the problem will be solved….

_________________
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 1:45 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Don't be condescending, Honey
Craig,

I hope you don't worry too much about this. Yes, some people might communicate in a way that offends you, but hasn't there always been someone, somewhere, who talks to you in a way you'd prefer they not use? It's just going to happen. And how you react to it, or even feel about it, could change from day to day, minute to minute.

Mom is much further along in this disease. I can tell you a bit about how she reacts, but it is sometimes hard to know how she feels, as she can't tell me much. There are times when Mom gives me that "who the heck are you" look or just pulls away when I touch her. And there are times when she really needs me to hug or hold her. I'll know those times only by trying to touch her and getting a reaction from her. Sometimes she's happy to hold my hand and other time you'd think I'd touched her with a hot poker. Sometimes I can call her Mom, but if she doesn't know who I am, I need to use Clarita to get her attention.

Everything changes everyday and your family will need to be very flexible. Let your kids know you love them very much now (don't wait and don't hold back), because they will need that security later when they think they have done something to make you mad, though you are probably only reacting to a mood or a thought when you pull away. If I weren't very secure in my relationship with Mom, I'd be more of a wreck than I am.

What you believe you want in how someone addresses you may change drastically by the time you need full time care. That said, knowledge of you now, and as you have been through your life, will become important to your caregivers. If you do start to have trouble with your words, knowledge of you in better days will help when trying to figure out what you need later.

Another thing your kids need to understand, and this does have a bit to do with how you are addressed and who you are comfortable with, is that you will probably be more comfortable with the people who are around you caring for you than with your own family. One of us (I or a sister of mine) visit Mom everyday. But that only accounts for 2 or 3 hours of that day. The staff is there all of the time. Mom is now more comfortable with them than with her family. That's a little hard to take, but I'm grateful she feels close to those around her for the bulk of the day and night.

This will not be your fault. Mom can't help how she feels, different days and different times of the day. You won't be able to, either. So don't worry about it. Just prepare your kids for whatever comes by loving them and making sure they know it.

And don't worry about how you will be addressed. Believe me, you'll find a way to let your caregivers know when you are displeased...

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 1:54 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Don't be condescending, Honey
I think that I am agreeing with those who say tone is critical, and more important than words. I treated Coy to a massage a couple of weeks ago. (Had an online coupon for a discount, though he'd enjoy it.) He thought it was great. I was very impressed with gal doing it. When Coy was taking a long time to undress she had me come in and help him. She also called me in to help turn him over. (He was very weak that day.) She is a large woman and she told me later that she does most of the deep massages at that clinic and when her coleagues saw her walking down the hall with frail little Coy their reaction was, "She'll kill him!" :P So she was especialy gentle with him. I bought a package of 6 more massages and he had the second of those today.

She doesn't get exasperated when he has to stop the session early to go to the bathroom. And I heard her helping him find it by saying kindly, "Come this way sweetie." I'm just going to keep giving her nice tips and not criticize her manner of speech. :lol: (That would change if Coy mentions not liking it, but I would be very friendly in explaining the need to change.) She is clearly not condescending.

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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


Fri Sep 16, 2011 7:55 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Don't be condescending, Honey
Craig, I hope you don't dwell too much on how people will treat you in the future, when you may not be able to communicate clearly your preferences. For one thing, that time may be a long, long way off, and your loved ones will learn a lot about communicating with you, and about advocating for you, by then. For another, what offends you now or makes you uncomfortable now may not be the same as Lewy progresses.

I can understand you wanting to prepare for the future, and I think Kate's advice is spot on. Now, while you can, work on the relationships with those who matter to you. Don't worry about how the guy in the hardware store addresses you. Concentrate on how you interact with your children, your wife, your close friends. And I don't just mean teaching them how to communicate with you (that may change over time) but also learning how to communicate with them. Establishing a deep, intimate relationship of trust is what will serve you best, I think.

I know that the people in your life are imperfect (because all people are). It is a very good thing for all of our loved ones that imperfect people can do great jobs caregiving.

I am very grateful that we had 30 years to build that relationship of mutual trust and intimate knowledge before Coy developed LBD. That is another disadvantage of early onset, alas. But you are still in very early stages. For you, strengthening relationships can still be a two-way street. Oh, not at your low points I suppose. But much of the time you have that ability and that choice. And your cognition is so very strong I think you have more than an average chance of using insight to improve your important relationships.

I certainly wish you every success!

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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


Fri Sep 16, 2011 8:26 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
everything is cool... 8)

1) I was thinking alot about the things being said to others 'now'…I think any patient….any disease should be addressed as they want to be, if it is possible….so addressing others posts in this thread…my thoughts as a person…not as a patient….is that any patient should only be addressed as they are comfortable….will that ever be realized…of course not….but isn't that what we are all talking about…is what we think is right in different situations….so…even though being called honey is okay with me….I realize that it isn't okay with others….

2) I am not trying to compare me with everyone else….I seem to have some very special torture that has been reserved for only me…. :lol:

2) I am working my butt off on the closest relationship that I have…it isn't working….unfortunately…and….communication is the obvious manifestion of problem….though it isn't the problem….trust and respect is….
so…I can see the reality….if this person won't take it easy on me or take their time…when I literally beg them to….repeatively every day….(not a delusion)….I can see how this will be handled when I make it to the big house….I will be drugged into a more easily handled patient….and I know the necesity of it….I am okay with it….it is very helpful to see how this plays out later….it really has me working really hard on making it as easy on me as possible

3) I say what I said in (2) because I am having a really bad time with anger when I become frustrated…..I am having a successful time in controlling that frustration with almost everyone….except a special one that seems to be wanting to push my triggers….so….what I said before….about triggers…

4) I am having a really bad sequence of days right now…..I slept from 4:30 am yesterday to 11:30pm last nite and have been up since that time….I have some other things going on…if you get it….I am 'lit up' right now….I am in torture mode…..my brain is torturing me right now in almost every way it knows how to….and I am alone….and I know that is something that I will not be able to pull off for who knows how long….right now 'long' doesn't seem to be the right word…

I know you all are wishing me well….remember I can't communicate with success all of the time….I won't make sense all of the time….I surely want to…I do sometimes

I am trying to stay in the sandbox…please keep me in line

_________________
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 10:32 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Don't be condescending, Honey
Craig, I am not quite old enough to be your mother, but I am going to give you motherly advice anyway: Get some sleep! 8)

I don't know, but don't you think a more regular pattern of sleep would be a good thing? Have you discussed this (by email) with any of the Mayo doctors?

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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


Sat Sep 17, 2011 1:26 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Don't be condescending, Honey
It may not be a choice. As Derek's neurologist explained it, his sleep center is 'broken'. There were nights he didn't sleep at all and barely slept during the day. He was a man who always needed his 8 or 9 hours of sleep a night so this was truly bizarre and very hard on both of us. Many medications were tried but only Seroquel seemed to help him sleep and, even then, never more than five or six hours at a time. He sleeps a lot more now that he's in the latter stages.

_________________
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.


Sat Sep 17, 2011 11:21 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Don't be condescending, Honey
Right, Pat. Not everything that is broken can be fixed, and not everything that is unusual is necessary broken. But Craig seems to feel tortured, and since he has access to some of the top minds in the dementia and sleep fields, my mothering instincts say to contact them.

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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


Sat Sep 17, 2011 11:42 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Don't be condescending, Honey
Well, he does see Dr. Boeve at Mayo. And was just there recently.

_________________
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.


Sat Sep 17, 2011 3:09 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Don't be condescending, Honey
Yup, Pat. Craig, please email Dr. Boeve and/or the sleep specialist you saw at the Mayo, if, as it appears, the distruptive sleep cycle is causing you discomfort. I want as much of your time to be comfortable and happy as it can be!

(Maybe I am overly sensitive on this issue right now because I am having sleep problems myself. I can't get in to see a specialist until the end of October! I sure wish there was someone who already had done a study and knew my history whom I could just email for advice, instead of waiting to start at the beginning.)

Sweet dreams ... ?

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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


Sat Sep 17, 2011 7:15 pm
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