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 Tired of the Well-Meaning Questions 
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Tired of the Well-Meaning Questions
Gosh Julianne, When people responded that they had a uncle with AD it use to make me crazy, sometimes to me it seems people just don't listen anymore to what a person is really saying !

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Irene Selak


Thu Apr 14, 2011 3:10 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Tired of the Well-Meaning Questions
Exactly right, Irene, I don't think they are listening. That's why I don't go into any explanation of what my mother has and why they are different.

You know how people ask the social question, "How are you?" They aren't really asking how you are. It is just a social convention, a way of expressing some interest. Just try giving a full scale answer and you will see their eyes roll back in their heads! Often it's the same thing when someone asks after my mother and I know it.

Better just to be glad they are thinking of her, give a surface answer and move on. I figure it's like explaining sex to kids--just answer the question being asked, don't give a long dissertation on biology, and if they actually want more information, they will ask.

Julianne


Thu Apr 14, 2011 3:16 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Tired of the Well-Meaning Questions
These is the very reason I always answered with "He is doing as well as he can at this point"

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Irene Selak


Thu Apr 14, 2011 3:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Tired of the Well-Meaning Questions
Yes, most of the time they are just making conversation and it seems the polite and appropriate thing to ask. I don't blame them in any way. I may very well have done the same thing, myself, before Lewy.

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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.


Thu Apr 14, 2011 4:07 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Tired of the Well-Meaning Questions
I have been reading this…and remember those questions when I was a parttime caregiver for parents and grandparents….

It has me thinking I will be having to answer these same questions….as I have just made the decision and started to tell some of those close to me exactly what is going on…

in early stages…how did your LO's answer this?

the last thing I want to do is make anyone feel more uncomfortable than this does already…at this stage I want to see everyone and enhance my life…come to think of it…that is what I will want for some time

interesting stuff…no out of the box answers

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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


Thu Apr 14, 2011 4:21 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Tired of the Well-Meaning Questions
BC,
Probably for the people you are sharing with, when they ask just "I am dealing with it "

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Irene Selak


Thu Apr 14, 2011 6:26 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Tired of the Well-Meaning Questions
When my Mom is asked how she is doing, I have heard her say, "some days are good, some days are bad". Most people agree with her.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Thu Apr 14, 2011 9:47 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Tired of the Well-Meaning Questions
Irene, I like what you suggested. If I say "she is doing as well as can be expected at this point", it sounds positive yet is truthful and gives no false illusions that everything is just great or that she's getting better.


Thu Apr 14, 2011 10:20 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Tired of the Well-Meaning Questions
I have been going to the same nail salon for about 6 years now, before Ken showed his illness. After his decline started I took Ken there for pedicures and he loved it. Sooooo, my manicurist/owner of the shop has known our story from the beginning. She's a very sweet, caring woman, but now every time I go there she asks "How is your husband, is he getting better?" I have explained, patiently, that he will not get better, please do not ask me that. I went to get my nails done today, expecting the question and almost expecting to be very upset at her. Thankfully (for both of us) she just asked me how he's doing today. Old dogs CAN learn new tricks.
However on the "old dogs can't learn new tricks" theory: my MIL, who lives with us (age 90) has been told that Ken's diagnosis is LBD/ Parkinson's. She insists, however, on telling me every so often: "Well, Jeannine's sister had Alzheimer's and she lived for 20 years after her diagnosis". I no longer have a response for that, not knowing if she is encouraging me or just fooling herself. I figure if anyone lives to be 90 years old they are entitled to perceive life in any manner they wish.
My bottom line: My response is probably different for anyone who asks. My very (very) close friend gets the day-to-day updates and anguish. Those who are somewhat special to us get get a bit of insight and those who are well-meaning but not close get "He's doing fine." as my response. So far I haven't given anyone what-for for asking. So far. One day at a time! Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Thu Apr 14, 2011 11:22 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Tired of the Well-Meaning Questions
For people I didn't know all that well or care to engage in lengthy conversation about my dad's status, I'd say something like "he continues to go downhill." That pretty much ends further conversation. When people would ask him how he was doing, he'd say "not too ^&*% well" or "I'm still alive, but that's about it". Most would respond by saying "please let me know if there's anything we can do to help you or your dad." That felt very good, and I did call on many people to help out, IF they had volunteered their help.
When my mom & dad's best friend was dying she called me a few days before she died. I was very close to her too, and I told her daughter on the phone I'd get to Mass. to see her as soon as I could. A couple of days later I called the daughter and said I'd be down the next day and asked her about her mom's status that morning. She brightly said "oh, she's doing great today." That seemed odd to me given that the woman had a brain tumor. Our parents had been best friends for almost 75 years so it wasnt' like I was a peripheral acquaintence. I took the day off work and drove to Mass. to see her mom, and before going into her NH room, I asked the daughter her current status. Again, she said something like "she's doing pretty well today." Imagine my shock when I walked in and her mom, who had been very overweight her whole life, looked like a skeleton, was lying in bed semi-conscious, almost no hair (she'd still had thick, black hair when I'd seen her 2 years earlier before she moved to Mass.) and asked me to scratch her forehead because she could not even move her arm more than an inch off her bed.
I have never been able to figure out why the daughter was telling me "she's doing great", etc. Our dear, dear friend died a few hours after our visit. I wonder, was her daughter in such denial that she thought by telling me her mom was "great" she'd get better, or what? I was kind of offended that she wasn't honest with me and my husband given how close our families had been for all those years. 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.


Fri Apr 15, 2011 9:46 am
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Tired of the Well-Meaning Questions
Lynn, the only plausible explanation I can think of is that your friend felt her mother was doing was doing great, or pretty well, relative to how she had been doing recently--as in, not suffering the way she had been, resting comfortably, etc.

For instance, over the last few months when my stepmother was dying of metastatic breast cancer, I got so used to her debilitated condition that it no longer shocked me, whereas it would have shocked anyone who hadn't seen her for, say, a year. She went through a lot of terrible pain when it spread to her brain. We were just relieved when radiation therapy shrank the brain tumor enough to stop the pain in her head, and I'm sure if someone had asked me then, I would have said she was doing pretty well, thinking of how she had recently suffered. It's strange how one's perspective can change.

Julianne


Fri Apr 15, 2011 10:09 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Tired of the Well-Meaning Questions
Sher,
Your mention of your Mom made e think of my own situation , my Mom lived with us for yrs but because she couldn't grasp many of the aspects of my husband's illness I ended up placing her in an independant/Assisted facility. At the time Jim was in that out of control part of the LBD and she would add fuel to the fire so to speak, if he was ranting she would have to come out and be nosey and interject, I knew one of them had to go to save my own sanity, she just wouldn't get it because he appeared so normal so many days. It came to the point where I feared leaving the 2 of them alone in the house to run an errand, I just didn't trust my husband because he would say things like I am going to kill her, so after much soul searching she was the one placed, she actually lived longer than him but I have struggled with my placement decision for yrs over her and she is long gone and I haven't forgiven myself and often think I never will.

This was really sad for me to think of this memory !

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Irene Selak


Fri Apr 15, 2011 2:18 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Tired of the Well-Meaning Questions
Irene, I'm sorry you don't see fit to forgive yourself. You made the obvious choice.

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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.


Fri Apr 15, 2011 2:39 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Tired of the Well-Meaning Questions
Absolutely, Irene, I don't see how else you could have handled it. There is nothing to forgive.

Julianne


Fri Apr 15, 2011 3:43 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Tired of the Well-Meaning Questions
Irene, you have guided many of us with decisions we had and have to make, you did what you had to do. I do understand how difficult it must have been for you, I also took care of my mother and if it had come to that, I would have made the same decision.
Fondly,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Apr 15, 2011 5:34 pm
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