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 Newbie from New Orleans 
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Joined: Sat Mar 18, 2017 10:41 am
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Post Newbie from New Orleans
Good Morning!! I am grateful that there is this forum to come to. My Dad was recently diagnosed and I am his caregiver. He is 67 years of age and he was this social butterfly... not that way anymore. WE have amazing Dr's now and hes getting the health care that he needs. He attends PT 2x a week and hopefully he will be in a support group himself soon. I am looking forward to hearing others stories, their struggles and their victories... I need this group to help me to understand.

:)


Sat Mar 18, 2017 10:53 am
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: Newbie from New Orleans
Greetings;

First allow me to say you have my thumbs up, it takes alot to be a
caregiver. One of the things I fear the most isn't death or the
general insanity I know is coming my way; its that I do something
stupid and mean to my caregiver who is also my wife.

I can maybe relate a couple things that might help, might not about
the social life....mind you each persons' dementia is a little
different plus we are all at different points in the progression. I
guess thats my long-winded way of saying that your mileage may vary.

In my case LBD pretty much ended any kind of social life I might have
had with three key symptoms/problems:

* Expressive aphasia. This wrecks shopping (sometimes I can't even get
out if I want paper or plastic), eating out (I have eaten SO much
food I hate because of inability to communicate with the waiter and
so end up eating whatever the last thing that was said before I said
screw it), heading to the pub, etc.

* Compounding that, another symptom that is pretty common amongst
dementia patients is inability to process stuff around you. When its
bad it can pass as what most look at and thing "fog" or
"confusion". What makes it bad is being out in public where there is
a TON of things you gotta process and you just can't keep up no
matter how hard you try. At home where everything is familiar and
hence doesn't need constant processing, the paitent can more readily
focus on and interact with people and things around them. This is
doubly true of me. The heart of this issue is the executive function
disorder resulting from frontal lobe damage so there isn't alot that
can be done here AFAIK.

* Very dodgy short term memory. This just makes speaking more socially
awkward than it needs to be, between forgetting what you were
talking about mid-sentence, repeating things too much, and not being
able to keep up with an adult conversation involving more than two
people.


Put those three things together and going out raises the pain-level
for the patient to often intolerable levels. We try to suck it up but
it rarely ends well. I know I am happiest surrounded by familiar
stuff. I can interact with the world as much as I am able to on any
given day but not forced to go a step beyond, fine with me.

Which leads me to something else I think you said in another subthread
about your dad, concerning death. For reasons I cannot readily
identify, the concept of death among at least the LBD people I know
(as well as other terminal cancer patients and so on) is little more
than a "thing". Its not feared, at least I don't. I don't spend my
waking hours pining for some other life or more years in this one. I
am NOT depressed or in a hurry to die, not at all. Its just a date in
the future to me and I have so many other things to worry about
between now and then, I just don't have the energy to stress it. In
fact many of us carry a lighter-hearted attitude about it that some
might think and it gets us in trouble. I thought I had something very
witty to put on my tombstone the other day but the missus wasn't as
amused.

There is another reason I really don't worry about death and it has
everything to do with LBD. One of my stranger (to my mind) symptoms is
my perception of time is totally whacked. To me, peceptually and
conceptually yesterday is the same as last year as is 10 years ago. By
the same token, tomorrow is as far away in my mind as 10 years from
now. My mind just doesn't wrap around it right, like the concept of
how much time in either direction is mentally "slippery". That has
some other fun side-effects but for the purposes of this conversation,
it has also moved the assumed date or at least year of when I expect
to be room temperature out beyond what I can conceive. To put this
another way, if your doctor told you OK the results are in, you will
die of cancer. Oh doctor, how long do I have? Well, you will die of it
when you are 110 years old. Somehow its hard to worry about that now,
isn't it? Same thing here. So we are not obsessed with it and yes in
moments of frustration I too will utter things like I hate my life,
death can't be this frustrating and so on but its just talk, no actual
desire for death. I guess I am saying if hes not trying to physically
off himself, take it with a grain of salt.

Thats the thing; too many people seem to attach too much to our
moments of venting, assuming something is really
wrong/deranged/whatever when we blow up sometimes of say the broken
egg on the floor or broken dish or burned meal or...whatever. No one
gets that upset over the broken dish, right? Well consider that often
we are actually far more in control than you think and its not the
dropped egg that pissed us off to the point of yelling, its the
FIFTEENTH broken egg/thing to go wrong. You just never heard about the
other 14 because thats the other thing we learn early on: normal
people can only take so much on-going chaos for so long and thats
pretty much the mental definition of the rest of our lives so we keep
the worst stuff to ourselves. Almost everyone is happier that way.


Sat Mar 18, 2017 3:57 pm
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Joined: Mon Apr 17, 2017 3:00 pm
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Post Re: Newbie from New Orleans
Dear Jeff - I have just gotten myself registered for the forum. I was my husband's care-giver for the last seven years of his life and I have been trying to help out as a coordinator for the LBDA in south Florida. I wanted to let you know how much I was impressed by your reply here. Even on the last day of my husband's life his only concern was for my well-being. I am wishing you only the best and am hoping that you are surrounded by friends and family.


Mon Apr 17, 2017 3:10 pm
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: Newbie from New Orleans
quickstep wrote:
Dear Jeff - I have just gotten myself registered for the forum. I was my husband's care-giver for the last seven years of his life and I have been trying to help out as a coordinator for the LBDA in south Florida. I wanted to let you know how much I was impressed by your reply here. Even on the last day of my husband's life his only concern was for my well-being. I am wishing you only the best and am hoping that you are surrounded by friends and family.

Cheers Quick; two things happened when I got diagnosed, first I learned that I knew NOTHING about real dementia inspite of having been involved with it personally and second, there is almost nothing out there on this from the patients POV that I could find, and that was the FIRST thing I looked for. I asked the neuro at Cleveland Clinic for better patient resources and all he had to offer were the usual suspects (Mayo and NIH). So I figured as long as my writing isn't as bad as my speech I would write stuff down, initially to help my caregiver understand.....but if it helps anyone out there, even a single person I am cool with that too.


Tue Apr 18, 2017 3:07 pm
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Joined: Mon Apr 17, 2017 3:00 pm
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Post Re: Newbie from New Orleans
Well, you have certainly helped me. I've now read several of your posts and I now understand so many things about what my husband went through. An example: we were very active people and as my husband got sick I kept looking for things that he would find to be of interest. I didn't understand the apathy. And I really got no help at all. The closest thing I can think of was when his doctor told me to give up on the books on tape. No explanation, just that it wouldn't help. Then I tried jigsaw puzzles. I set one up on the back porch and when I sat down with him he would shuffle the pieces around. If I got up he would sit there and (I think) try to look interested. But, in fact, I think he was just trying to please me. I finished the puzzle myself one night after he went to bed. But I always felt bad (guilty?) that I was never able to find something that we could continue to enjoy together - except his constant reruns of NCIS! (-;
I will try to let that guilt go. So, thank you.


Tue Apr 18, 2017 5:21 pm
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: Newbie from New Orleans
quickstep wrote:
Well, you have certainly helped me. I've now read several of your posts and I now understand so many things about what my husband went through. An example: we were very active people and as my husband got sick I kept looking for things that he would find to be of interest. I didn't understand the apathy. And I really got no help at all. The closest thing I can think of was when his doctor told me to give up on the books on tape. No explanation, just that it wouldn't help. Then I tried jigsaw puzzles. I set one up on the back porch and when I sat down with him he would shuffle the pieces around. If I got up he would sit there and (I think) try to look interested. But, in fact, I think he was just trying to please me. I finished the puzzle myself one night after he went to bed. But I always felt bad (guilty?) that I was never able to find something that we could continue to enjoy together - except his constant reruns of NCIS! (-;
I will try to let that guilt go. So, thank you.

Oh please do let it go. For one thing, remember that for almost all of this, we spend a non-trivial amount of time simply trying to understand whats going on around us. Not all the time but enough. Now here is the other fun part (and I do mean fun for the patient): Those reruns are like GOLD to me. Not the show, not sure I sat through a single episode when not stuck in a hotel somewhere. I was going to write something up about this but this is no BS: reruns of any kind are great because I hate to admit it but the old joke is true about meeting new people everyday. In time that may be true in fact but right now its true in concept for me. I have a video library (past lives involves lots of media) with some 3000 flicks and some 6000+ hours of every episode of my favorite TV shows going back to Twilight Zone, Star Trek, XFiles, etc. The kicker is, I have seen some of these shows lots and a few movies, too much. Think about it for a second, if you have a really favorite movie, haven't you seen it enough now that you can almost utter the next line of dialog? To put it another way, I have some real faves like anyone say original Star Wars or Matrix or even a classic like Cool Hand Luke...I found myself wishing one day I could see them again, but for the very first time to get that first-time thrill again. That also BTW seems to be missing from most new stuff. That was me 5 years ago. Now, I might know Neo technically wins or makes it to the Machine World or that Luke dies in the end but most details between A and B are fuzzy as hell and I really, truly am enjoying them all to the point I haven't really bothered to keep up with new episodes of shows because I am really entertained by these older movies and shows. I read books some, not as much, was a voracious reader but now if I read, it can be a long and complex book as long as I have read it before. Its like I don't have to remember every plot thread. At least not yet. Comic books are the same way. Here is something that might put it in perspective: we like The Walking Dead (because I have read and own all the comics so again, fewer plot threads and surprises to keep up with overall) but I can watch the show from the pilot to the current episode, and then watch it again in a month all the way through with many of the episodes feeling "new" to me. There is more but this is getting long and my CBDs are running out so unless you want to see me babble like a loon, I better go for now.


Tue Apr 18, 2017 6:08 pm
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Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Re: Newbie from New Orleans
quickstep wrote:
Well, you have certainly helped me. I've now read several of your posts and I now understand so many things about what my husband went through. An example: we were very active people and as my husband got sick I kept looking for things that he would find to be of interest. I didn't understand the apathy. And I really got no help at all. The closest thing I can think of was when his doctor told me to give up on the books on tape. No explanation, just that it wouldn't help. Then I tried jigsaw puzzles. I set one up on the back porch and when I sat down with him he would shuffle the pieces around. If I got up he would sit there and (I think) try to look interested. But, in fact, I think he was just trying to please me. I finished the puzzle myself one night after he went to bed. But I always felt bad (guilty?) that I was never able to find something that we could continue to enjoy together - except his constant reruns of NCIS! (-;
I will try to let that guilt go. So, thank you.

Oh yeah and at least with my personal damage, I seriously love puzzles of all kinds all my life but would rather sit on a tack than look at a pile of puzzle pieces. It would literally cause brain-pain to me. Recently spent a weekend at the MGM Grand in Vegas and got in the elevator and was mentally unable to make my hand press the right button because I was brain-locked staring at a bank of some 60 floors' worth of destinations.......same exact thing, from the....dammit, keep forgetting...frontal lobe or cortex...something...damage. Cause of EFD.


Tue Apr 18, 2017 6:13 pm
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Joined: Mon Apr 17, 2017 3:00 pm
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Post Re: Newbie from New Orleans
Take care! BTW, my husband's name was Jeff too.


Tue Apr 18, 2017 6:15 pm
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Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Re: Newbie from New Orleans
JeffCobb wrote:
quickstep wrote:
Well, you have certainly helped me. I've now read several of your posts and I now understand so many things about what my husband went through. An example: we were very active people and as my husband got sick I kept looking for things that he would find to be of interest. I didn't understand the apathy. And I really got no help at all. The closest thing I can think of was when his doctor told me to give up on the books on tape. No explanation, just that it wouldn't help. Then I tried jigsaw puzzles. I set one up on the back porch and when I sat down with him he would shuffle the pieces around. If I got up he would sit there and (I think) try to look interested. But, in fact, I think he was just trying to please me. I finished the puzzle myself one night after he went to bed. But I always felt bad (guilty?) that I was never able to find something that we could continue to enjoy together - except his constant reruns of NCIS! (-;
I will try to let that guilt go. So, thank you.

Oh please do let it go. For one thing, remember that for almost all of this, we spend a non-trivial amount of time simply trying to understand whats going on around us. Not all the time but enough. Now here is the other fun part (and I do mean fun for the patient): Those reruns are like GOLD to me. Not the show, not sure I sat through a single episode when not stuck in a hotel somewhere. I was going to write something up about this but this is no BS: reruns of any kind are great because I hate to admit it but the old joke is true about meeting new people everyday. In time that may be true in fact but right now its true in concept for me. I have a video library (past lives involves lots of media) with some 3000 flicks and some 6000+ hours of every episode of my favorite TV shows going back to Twilight Zone, Star Trek, XFiles, etc. The kicker is, I have seen some of these shows lots and a few movies, too much. Think about it for a second, if you have a really favorite movie, haven't you seen it enough now that you can almost utter the next line of dialog? To put it another way, I have some real faves like anyone say original Star Wars or Matrix or even a classic like Cool Hand Luke...I found myself wishing one day I could see them again, but for the very first time to get that first-time thrill again. That also BTW seems to be missing from most new stuff. That was me 5 years ago. Now, I might know Neo technically wins or makes it to the Machine World or that Luke dies in the end but most details between A and B are fuzzy as hell and I really, truly am enjoying them all to the point I haven't really bothered to keep up with new episodes of shows because I am really entertained by these older movies and shows. I read books some, not as much, was a voracious reader but now if I read, it can be a long and complex book as long as I have read it before. Its like I don't have to remember every plot thread. At least not yet. Comic books are the same way. Here is something that might put it in perspective: we like The Walking Dead (because I have read and own all the comics so again, fewer plot threads and surprises to keep up with overall) but I can watch the show from the pilot to the current episode, and then watch it again in a month all the way through with many of the episodes feeling "new" to me. There is more but this is getting long and my CBDs are running out so unless you want to see me babble like a loon, I better go for now.

Oh and not to leave this on a dark-humored note but one thing I can say that you can't is I now own a life-time supply of "new" movies that are some of the greatest movies ever made. Its like I might conceptually know Casablanca is a good movie but I don't recall enough to know how great it is or really much of what happens. This is a little amazing because of how many bits of that movie have been repeated in our culture ad nauseum. But anyhow so I have all these movies that I am pretty sure should be good but I get great treats every time I dip in into my vault and come up with a One Flew Over the Cuckoos Nest or To Kill a Mocking Bird or...Cool Hand Luke. Brand new, great treats all over again and yet there is enough underlying familiarity that my brain isn't over-taxed trying to keep up with everything. I don't know if on some level my brain knows which bits to hang onto and which parts of a story are not plot-important, I don't know. I just know this really does work.

Lifetime supply, too. Read it and weap kiddies...:)


Tue Apr 18, 2017 6:21 pm
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Post Re: Newbie from New Orleans
, I seriously love puzzles of all kinds all my life but would rather sit on a tack than look at a pile of puzzle pieces.

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Thu Jun 01, 2017 1:09 am
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