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 Is show-timing worth the effort? Should it be discouraged? 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Is show-timing worth the effort? Should it be discouraged?
I was going to post this in response to the Excesive Sleeping post, but it is probably more approprate on its own.

I have heard a lot about show-timing, and I have seen Coy pull it off. He also apparently knows his limits and respects them. He has left family gatherings at our house to take a nap, perhaps to get up and say goodbye as people leave. At my aunt's 100th brithday event in a small town community center last fall, he ate, he greeted relatives who came up to him, he extended good wishes to the birthday girl, and then went and sat in our car, dozing off. He was perfectly willing for me to continue visiting with my cousins.

These events do take something out of him for a few days, for sure.

I've been giving thought to whether the event is worth the cost, and what I would want for myself. Would I want my days to progress as placidly as possible, evenly spaced, with minimum ripples to disturb the peace? Would I want my caregivers to protect me from too much stimulation?

Who can say until we are in that situation? I think I wouldn't mind giving up the following two days to sleep and recovery in exchange for an event worth the effort of show-timing.

What I'd really like, in the event I am impaired and need a caregiver, is Coy's ability to know my own limits, and a caregiver who respects that. I wonder how common it is to be able to recognize one's limits?

It is interesting how many topics caregivers face that aren't covered in the advanced directive, isn't it?

How do/did you handle stimulating experiences for your loved one? How would you want them handled for you, if you were not in a position to decide for yourself?

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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 Sep 26, 2011 11:36 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Is show-timing worth the effort? Should it be discourage
With Derek it's always been relatively easy to make the decision, as he never wanted the stimulating experience in the first place. In the event it was thrust upon him, he could [at one time] often rise to the occasion but bluntly tell people to go home or otherwise make it apparent he had had enough. And he took one or two days to recover.

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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.


Tue Sep 27, 2011 12:07 am
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: Is show-timing worth the effort? Should it be discourage
I think following the person's tendencies pre-dementia may work best. Did she enjoy big parties? Did he look forward to big family gatherings? My mom always seemed to, always seemed to like to work the room, so it makes the decision easier. But even she is now showing signs of not liking huge gatherings where she doesn't know people, so we opted for immediate family only for her birthday (and that's a sizable group (15), but she does still sort of know everyone. At least when you say the name, it is familiar to her..."Oh yes, I know him.") Last year we threw a big party for Mom's 80th with her siblings and nieces and nephews and grands all invited. And she seemed to enjoy it very, very much, and remembered it for a couple of months as we talked about it daily and looked at pictures. But she is weaker now, so we made the call to keep it smaller and hoped her siblings would come see Mom on their own in small doses. One did, I think one more will, one can't, and the other 2, well, whatcha gonna do? They do have challenges within their own immediate families. I know we're blessed to have a lot more support and contact than many folks do from their families.

For me personally, probably not so much with the party scene. I'm not energized by that. Take me somewhere for as long as I am able to go—a ride in the country, parks, museums, neat old houses and buildings.

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Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Tue Sep 27, 2011 9:19 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Is show-timing worth the effort? Should it be discourage
At Mom's stage, small events are big events. Usually we try to keep the number of people involved to a minimum. But we don't stop events from happening. Sure, Mom is very tired for a few days after, but her enjoyment is worth it. And everyone there has been warned that, if Mom gets too anxious, she will need privacy and the event may end early. I think she even remembers some of them.

Every year, at Memorial Day (which also encompasses her birthday), we do the "cemetery run." Mom hasn't missed one, though it is a 200 (total) mile drive up and back. This year, she couldn't do much, but insisted on driving around (after we talked her out of walking) her hometown cemetery. This is something that tires her out for at least a week, but it is important to her, so worth it.

Mom's brother is starting to get into the undeniable area of dementia, I think. (He and his wife have been denying it for years.) I want to get Mom down to see him before it gets worse, but that is also a 100 mile trip there and the same back. It would be an all day trip. I think this is important, but couldn't say whether it is important to me or important for her. But I do have a committee that includes 3 other sisters and I'm sure they will tell me if they think we shouldn't do it.

My personal feeling is that it is the events that make hanging around worthwhile. So, if it takes time to recover, so be it. I know that the last thing Mom would want would be to sit in her wheelchair day in and day out with nothing happening until she gets her release.

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 27, 2011 1:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Is show-timing worth the effort? Should it be discourage
I think that reading your LOs body language, and if they are still fairly able to verbalize, listening to their words is critical in making such decisions.
My dad was extremely extraverted his whole life BEFORE his neuro. disorders. He was always visiting friends, arranging parties, having group dinners, loved being around kids, etc. About 6 - 12 mo. before I heard of his possible PD dx, I noticed he became very withdrawn, only wanted to be around a few of his closest friends, didn't like being around kids. After he had his Big Decline, it was very difficult for him to have more than 2 people in his room at any given time. When he had friends or relatives visit, except for a few very close friends, I'd notice that his anxiety level and anger would rise, and I'd have to discreetly tell people that he was getting tired from the visit and try to politely usher them out.
He had become totally different in personality than he'd been for 85 years. The changes that the disease(s) caused were profound. It truly was like the dad I'd always known had died about 2 years before he actually stopped breathing.
So, pay attention to your LOs signals and act on that would be my recommendation. 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.


Tue Sep 27, 2011 1:35 pm
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: Is show-timing worth the effort? Should it be discourage
This is something that has to be decided on a case by case. My husband has always been someone who could walk in a room of 50 strangers and within 2 minutes, had 40 friends. That was his nature. Ron still enjoys people, but in very small doses. He gets confused and upset easily. Makes no difference if it is our family, grandchildren or strangers. We have been asked to make a trip for Thanksgiving to have it with his cousins and 90 year old aunt. I know he would love to see all of them, so would I. But it is a 9 or 10 hour drive to get there. We would probably have to spend 2 nights. I am so concerned about his comfort level. He also has a younger sister, again 10 hours away, who has had a series of strokes. I told him, but he has forgotten. I would love for him to see his sister again, instead of at a funeral. But I am concerned about the long drive. It would wear him out and then he would be in a strange place. So I have a very difficult decision to make. Which would be better for my husband.

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Katie, married to the love of my life on June 14, 1969.


Wed Sep 28, 2011 9:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Is show-timing worth the effort? Should it be discourage
Kate, it sounds like you may have already answered your own question. It is difficult and you don't want his stress leve (and yours) to get any worse! Your husband sounds a lot like my dad was - very outgoing, made new friends very easily. 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 28, 2011 10:04 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Is show-timing worth the effort? Should it be discourage
Katie,

Where I might try a 2 hour drive, 10 hours and not back in his own bed at night may be too much. We had to make the tough decision to not take Mom to her grandson's wedding in SD this summer because of the very long drive and managing her care in a hotel room. It's a painful decision, but the bride and groom understood. And then they brought their wedding video to play for Mom. I think she enjoyed that, and having the 2 of them in the room, far more than she would have enjoyed the wedding.

Would someone be able to video the gathering? Or do a Skype video call during the party?

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]


Wed Sep 28, 2011 10:23 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Is show-timing worth the effort? Should it be discourage
Great idea Kate! I agree with you about making a 2 hour drive being okay and I can't even imagine attempting a 9 or 10 hour car trip with my mom, especially by myself. I love the idea of videotaping an event for our LO to watch after the event. When there's an event I know my mother would enjoy ( such as our family reunion picnic), I make the effort to take her, and I also let all of my siblings,etc.. know the time line of when we'll be there, such as noon to 2pm. Mom is only able to "showtime" for a few hours and then we leave because I know that the longer she is"on" the longer it will take her to recover. My mom is still in the fairly early stages of this disease, so this works for us. I'm sure we'll have to make many adjustments as her health declines, for instance I can't imagine taking her to any gathering when she's as bad cognitively as she was when she was in renal failure, which she seems to have made a complete recovery from! 8)
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Sep 29, 2011 11:46 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Is show-timing worth the effort? Should it be discourage
Any family gatherings have to be at our house, Frank hasn't been able to enjoy or even tolerate get togethers for quite some time. I can let him rest or go back to bed whenever he wants. Although at this point, he can't walk or stand so going out is pretty much out of the question. It certainly is a life change.

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


Thu Sep 29, 2011 1:41 pm
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Joined: Wed Sep 30, 2009 8:25 am
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Post Re: Is show-timing worth the effort? Should it be discourage
I used to try to get my MIL to go to family functions. She would not go because her pride prevented her from going - she didn't want anyone to see her so frail. We tried having people out to our house, but she would get upset because she could not remember people she had known her entire life. Now she has withdrawn into herself. She cannot even follow a conversation just between myself and my husband. She puts her nose in a magazine (the same one day after day) and "reads." A sad existence for a woman once filled with vitality. When her daughters come out for one of their rare, brief visits she puts on her showtime best. She used to fool them, since the visits were so brief, and then she would crash and burn for days. One daughter would drag her all over creation thinking her mother wasn't too bad and that I was crazy. Now my MIL is so far gone she can't hide ol' Mr. Lewy from them any longer.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Fri Sep 30, 2011 7:49 am
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Joined: Fri Dec 17, 2010 12:23 pm
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Post Re: Is show-timing worth the effort? Should it be discourage
JeanneG, I've decided that it is too stressful for Renzo, my husband, to participate in family events and it is too stressful for myself as well...I do not enjoy myself as I am watching him. In my case, the minute we get where we are going, he wants to leave. If people come to me, which they don't, he can ignore them if he wishes. I believe it is an individual thing....case by case. I

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IreneM (65) married to Renzo (75) dxd 1/06 with LBD. Probable Stage 3


Sat Oct 01, 2011 8:40 am
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: Is show-timing worth the effort? Should it be discourage
Video Tape!!! Wow, never thought of that. I love the idea. I can send one out from our whole family and, hopefully, they will send one back to us. Perfect answer to a bad sutiation. It will be fun to make the video with all the family members. Thank you sooooo much for the idea. Love it!

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Katie, married to the love of my life on June 14, 1969.


Sun Oct 02, 2011 5:47 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Is show-timing worth the effort? Should it be discourage
My friend's daugher was getting married and her other daughter was in the wedding but 7 1/2 months pregnant with twins and her Dr said no traveling. They skyped, the mother-to-be and her husband got all dressed up and they were able to "attend", via skyped, she even gave her toast. Technology is wonderful. Just another idea.
Take Care,
Gerry

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


Sun Oct 02, 2011 8:46 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Is show-timing worth the effort? Should it be discourage
I almost used Skype for my nephew's wedding. I think it would have worked, except that the wireless internet is so spotty at the SNF. I wish I'd tried, though. My sister, a fairly new grandmother, gets to visit with the new grandson and his parents via Skype.

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]


Sun Oct 02, 2011 9:34 pm
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