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Author Topic: Really? Did you seriously just say that out loud?  (Read 11997 times)

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Re: Really? Did you seriously just say that out loud?
« Reply #45 on: June 19, 2013, 09:55:58 AM »
Here's an idea: Give visitors something to do besides sit and chat and feel awkward. They could read to Amanda, or watch a TV show or movie with her. This would fill the conversational vacuum and also provide some talking points that have nothing to do with her illness.

This is an excellent suggestion as long as the visitors are also told 'when I give you the wink, the visit's over' so that it doesn't exhaust Amanda.

The flip-side of the situation badlady has correctly identified is the fact that people with terminal illnesses often turn away from friends/distant relatives and prefer the company only of their immediate family and those closest to them. It can look bad to those people who are shut out, particularly if it is the family who have to pass on the 'he/she doesn't want to see you/is tired/is not having a good day' messages, but it is not something that anyone can (or really should try to) change as it is the dying person reserving their energy for those they are closest to and love best.

To the bolded - my grandma didn't have a terminal illness, but right after she turned 90, she had to conserve her energy because she'd get tired really fast.  It turned out that it was due to her anemia, but even with meds, she'd have to save up energy.  Since I was the one at home in the caretaker role, I was the gatekeeper and the one saying about "oh she's too tired for visitors".  Her friends accepted this until her stroke and then got really mad at me because they wanted to come see her while we were trying to conserve our energy for our family.  I'm not sorry that they got angry with me because, as someone very wise on EHell said "they'll either get over it or die angry".  I am very happy with the memories I do have due to my grandma being able to focus her energy on us and all the energy my mom, aunt, and I was able to save in order to focus on helping our cousins when they came to visit. 

So, OP, (((hugs))) to you, your cousin, and her DH.  If you have to be the gatekeeper, I would do it.  It is hard as heck when you have to do it but it is so rewarding in the end.

Klein Bottle

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Re: Really? Did you seriously just say that out loud?
« Reply #46 on: June 19, 2013, 11:02:17 AM »
Thanks so much for all the thoughtful responses and different perspectives, not to mention all the hugs and good wishes.  It is all appreciated more than I can express. 

I had wanted to address a couple valid points posters had brought up.  First, I totally get it that the subtext of the unwanted comments is that these folks care, and are heartbroken,and are gobsmacked that there is no cure to be had for Amanda.  To me , the nuances are apparent, but not so much for Paul.  He tends toward being a very literal-minded person, and takes most things at face value.  He is also very protective of his wife.  As for Amanda, she is so emotionally raw and vulnerable right now, (and the physical pain exacerbates her emotional state),that she also takes the comments to heart.  In her previous life, before she got sick, she was a person who let anything negative roll right off her like water off a duck, but that has changed.  It is for these reasons that I want to make them stop. 

Miss Linda, the friend of my late aunt who showed up Sunday, has always been very close to Amanda, acting in the role of an aunt to her and her brother, Kevin.  She is also very good to Carlee and Gracie, Amanda's daughters.  She takes Carlee shopping, bakes cookies with her, brings her over to swim in her pool,etc.  She is a super good person, just not all that bright, and kind of clueless.  Nobody comes to Paul and Amanda's house that they do not want visiting, and there is no "just dropping in"without calling.  (I am sorry if my original post was unclear in that regard.  Reading it over, it does seem to be implied that way.  Sorry!) 

I made several copies of Toot's wonderful article, and I am going to show it to Pauland go over it with him after his mom leaves; she is in town from out of state visiting, and to attend a memorial service for her own mother, Paul's grandmother, who died last month.  So, when things settle down, I am going to present it to him, and I think he is going to be very thankful for it, and implement its use for all who visit.  My idea is to send emails to everyone who visits or who might visit in the future, and attach a copy of the article.  Do y'all think this is overkill?  I will only do so with Pail's imprimatur, and I will make the email very polite, non-accusatory, and in the tone of "we are all on the same side, here", if that makes sense.

As for conversational topics, if everyone would just follow Amanda's lead, we'd be golden.  Sometimes she *does* talk about her disease, and she is willing to answer questions about it.  It's sadly the biggest part of her life right now, and not to talk about it at all would seem ridiculous.  However, there are questions, and then there are "those" questions.  The vast majority of people who come over know the difference instinctively, but there have been three or four clueless ones, and we don't know how many more are out there.    ;D

Baglady, the more I think about your suggestion of putting a movie on when folks visit, the more I like it!  I am going to suggest this to Amanda when I go to stay over tonight.  Good looking out!    :)

Veronaz, I have already informed Paul and Amanda that, starting August 11th, they are going to have to choose another night besides Sunday to be one of my regular nights.    ;D  Sunday nights watching Breaking Bad is sacrosanct time for my son and me!  We also watch Walking Dead together when it's on instead.  That is our family night and I won't give it up, because my kid is 16 and a half now, and won't be with me but for another couple short years, then it's off to college.  So, they will have to choose another night, which they are fine with.  (They never fail to show their appreciation to me, and although I'm not in it for any "glory", it's nice to be thanked.)

Thanks again for all the wonderful comments.  For some reason, I have not really posted anything till now about the ALS, but now I wish I had.  The caring makes me feel less alone in this.  I am going to tell Amanda about the comments, too, as I know she will enjoy hearing about them!  God bless everyone.
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