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 Don't be condescending, Honey 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
Jeanne…

thanks for the well wishes….

Sleep? it isn't even a desirable item any more…it is only another problem…

and to semi quote Dr. Boeve….RBD….seems to be the root of all evil….but a necesary one…sleep doesn't excite me…drug induced sleep….doesn't excite me either….

drugs of any type don't excite me…

feeling whatever I am able to feel naturally….whether it feels good or bad…that is what I am talking about….

and I want those around me to want to share that experience while I can still enjoy it….I can't get my head around what is wrong with that request…

….I am following my sleep stuff….CPAP…Klonopin…I believe my biggest obstacle is stress induced by another person….this is just life….happens to everyone…

….so just to complete the picture of recent sleep pattern….so others can see how this works (or doesn't :lol: )

heres the last few days:
17.5 hours awake
19 hours in bed (feet never hit the floor)
26.5 hours awake
16.5 hours in bed (feet never hit the floor)

now….tell me…is it right to want to medicate me to 'make' me sleep? just a thought…

my thoughts….my sleep pattern is so out of whack right now….because of the stress….someone else is causing me right now….(I base this on my historical memory and experiences)….so….takeaway? is…..others should not be causing me undue extra stress right now….maybe others can use this information….maybe it is real….

more medication is not always the answer...

_________________
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


Sat Sep 17, 2011 10:25 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Don't be condescending, Honey
Ya know, I'm less and less inclined to put "natural" on a pedestal.

If you break a bone, it may be natural for it to grow back together in a deformed way. I'd prefer to have some medical intervention that puts it back together correctly and holds it in place so that it heals that way.

Arsenic is a natural substance. I'll pass.

Given that he has severe BiPolar Disease, it is natural that my brother has manic and depressive episodes. His suicide attempt last year was a natural outcome of those cycles. I am very, very much hoping that he continues to take his pills and do his lifestyle tasks to maintain a safer middle ground, even if that is not "natural" given his disease.

I have a little first-hand experience with depression. It feels very "unnatural" to me. It feels like someone else has invaded my body and I want to know what they did with Jeanne. If it takes meds and certain activities to get "me" back, so be it.

Given that there are clumps of alpha-synuclein protein in his brain, it is natural for Coy to experience increasing Parkinson symptoms. I am not accepting "natural", though. I've emailed Dr. Boeve and have increased a med. Natural will eventually win, but I'm fighting it all the way.

The disturbance to my sleep cycles is driving me up a wall. Maybe this odd cycle is now "natural" for me, but it interferes with my ability to take care of Coy, to attend to work tasks, to interact with family when they are available. I don't want it to be "natural" -- I want it to be convenient. I want it to contribute to my well being.

Sometimes "natural" sucks.

_________________
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 19, 2011 1:14 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
okay….

natural…wasn't the best choice of words….

what I wanted to say…..

I want to experience as much naturally or as close to natural as I can….while I still can….

and I still can….

if I get a little cooperation…..which seems to be quite lacking right now….

I am not getting caregiving right now….its okay….she won't read any this…

I am being pushed, every hot button is being pushed….

and it is taking every ounce of resources to take care of the caregiver….

I am still trying….maybe she will read this…..please read this….

so….how does this tie into this thread….

triggers…..let me tell you….

I have more triggers than I ever thought possible….and if you learn what they are….you can have some fun….

you know….it isn't that i have new triggers….no…

just an new inability to handle them…..over and over and over

so….maybe a new caregiver can get something from this….

what part of please don't you understand? over and over and over…..

so now I have anger that I didn't have before….I can still keep it under control with help…I fear the day when I can't….may it be 20 years from now

_________________
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


Mon Sep 19, 2011 7:56 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Don't be condescending, Honey
Craig, I hope you will bear in mind that, depending on the part of the brain affected, anger is often a problem in LBD and is not always related to the actions--or inactions--of others. God bless!

_________________
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.


Mon Sep 19, 2011 9:53 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,

You've got some excellent advice here from Jeanne and Pat. There isn't much I can add to that.

But I do want to remind you that you do have more than just that one relationship that is causing you so much frustration. Maybe, and this is just a thought, taking a break from the hard work on the one relationship and relaxing in the other relationships will help a bit.

And, Craig, you are allowed your frustration - and even your anger. Try to keep the expressions of anger to the non-violent side, but I do know that ripping a book or a pillow apart does have some therapeutic value. (Especially if someone else cleans it up.) Before my back interfered, kickboxing did it for me.

Thinking of you often,

Kate

_________________
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]


Mon Sep 19, 2011 11:54 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
Pat…

I do think about that, which in my mind only makes it more important that triggers not be pressed

_________________
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


Mon Sep 19, 2011 9:19 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
Kate…

I so do want to break things…

I thank you for bringing this up….it made me think…I need to ride out to the woods and break some trees where no one can see me…..

I did break a few things and then realilzed that I counldn't continue that in front of others that don't understand….

I so do need to have others around me that understand what is happening…where are they?

I see that there is no guarantee that I will run into anyone….anywhere that understands…..

I guess I am fortunate that I have found a few that I have actually met….and there are you guys…..

but….no one in my daily life….

I am cursed that I look so normal

_________________
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


Mon Sep 19, 2011 9:26 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Don't be condescending, Honey
Craig,

This is going to sound a little lame to a guy who is feeling time isn't on his side, but it does take time, sometimes even a crisis, for those closest to us to really see what is happening. When I had back surgery, it took a very long, scolding email to my sisters to get them to understand that Mom couldn't be alone. And it took a crisis before they really believed what is happening. I'm actually not sure yet that my bipolar sister gets it, but she may have an excuse.

It is hard to understand that someone who has always been your strength has a devil of his own to deal with. It's even harder to see your protector as needing protection, your rock as needing bolstering. Learning that it is time to step up and take care of the person who has always taken care of you is a very hard lesson that some don't want to learn. Others will learn and be glad they did.

Please remember that your circle goes beyond just your wife. You have a family. If your wife is having a tough time understanding, maybe your kids will understand first. Is there family beyond your wife and kids? Do you have siblings and would they be supportive? Old friends you can reconnect with?

I wanted to ask you, too, if you are putting together plans for when Lewy makes caring for yourself difficult or impossible. Are you looking into assisted living or a continuing care community? I ask because it sounds like you don't feel you can count on those closest to you when that time comes. Having something in place would better the odds of you getting the care you need when push comes to shove.

Sharing yourself with us here is making a world of difference for us and our loved ones. I hope the time will come soon when your own loved ones will see that, though a little more vulnerable, you are still a hero.

Kate

_________________
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]


Mon Sep 19, 2011 10:25 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Don't be condescending, Honey
BayouCajun wrote:
I am cursed that I look so normal


I think that is perceptive, Craig.

One of my nephews was large for his age until he hit his teens and the other kids caught up. Once my grandmother (his great grandmother) was tsk-tsking about his behavior and wondering if there was something wrong with him. But, Gramma, I protested, he is only 3 years old! She was startled. Is he? Oh, well, then I guess that is just normal.

This nephew started swimming lessons very young, and one of his instructors took my sister aside. When you go to a beach or a pool, introduce the lifeguard to Mike and mention his age. He looks like he is six or seven and he swims like an older kid, but the lifeguard has to know that he is only four and still has the judgment of a four-year-old. He needs to be watched like a four-year-old, not a seven-year-old.

Treating my nephew Mike according to his appearance could be unfair to him or even dangerous. But once people got past the appearance to the truth of the matter, that problem was resolved.

You look and sound normal, Craig. And sometimes, maybe most of the time, you are. But in some ways, some of the time, you are impaired. The difference between how you appear and what can reasonably be expected of you throws people. It is not malice on their part. They are just perplexed. I don't know if it helps any, Craig, but the "curse" you feel is not intentionally inflicted, and most people who are important to you will figure out how to relate to you as you really are, even if that fluctuates from day to day.

The people on this board "get it." But I'm not sure that any of us arrived at that state instantly upon hearing our loved one's diagnosis. I know I didn't. Don't give up on people who are trying, who have your best interest at heart, but are clueless. The clueless can learn, if love is the motivation.

(And I'm glad you are finding safe outlets for your anger.)

_________________
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 19, 2011 11:12 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Don't be condescending, Honey
Craig:

Would your wife consider corresponding, privately, with one of us?


Tue Sep 20, 2011 1:24 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
Gail….she is….and I recognize your offer…if she would come on the forum…she would also….

Kate…I have been trying to surround myself with security in those around me before I made any real attempt to locate facilities…I have peeked at them :wink:
but…I know that is my next step….
I still don't know what area of the country I will end up in….I have no family where I am…but I am trying to end my old life here…
lose the house….finish the process for social security…
I may be close on both of those fronts…which would be great news…so I can move on...
I don't think the surrounding myself thing with people is working out….at least that is my perception

my children will be very helpful….but not 24/7 helpful….I realize that I will need to prepare for 24/7 help….even if never necesary…
siblings….have them, but don't see any meaniful help from them…at least not until I am far gone….

I am trying to figure out how to financially make that happen….while taking care of obligations I already made…doesn't seem possible to accomplish it all….it will be either or at some point…so I know which one wins...

at times I feel I share too much…at other times too little….

Let me say….it is uncomfortable to be so uncertain and unsecure….when I have made it my life work doing that for others….

my self control is being surrendered bit by bit daily through self loss….I know you all know what I am talking about…

so I know why I am sharing…someone will read this and benefit….and….someone will post something that will help me !!!

so many of you have been so helpful…you will never know…

some of the best help has come from when some of you are in the deepest pain sharing some of your issues…thank you for being so brave…

………
so...if you are with someone like me at this time in my life….
I need to feel secure….

_________________
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


Tue Sep 20, 2011 2:46 pm
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Joined: Tue Mar 29, 2011 3:09 pm
Posts: 20
Post Re: Don't be condescending, Honey
Hi Craig,

I have read all of your posts and want you to know just how much you have helped me. You give all of us a much needed insight into this awful disease.
I am caring for a woman who was diagnosed just over 2 yrs. ago. Although I am not related by blood, we have a wonderful relationship. In the last 2 yrs. we have gone from being complete strangers to becoming very close friends. I guess what I am wondering is would it maybe be beneficial to you if you were to end up with someone other than your family to help you in the future. Someone who would care just for you. It seems to me you are using so much energy trying to do the giving when you should be receiving.
Just want you to know that there are people out here that truly do care about others. Sometimes it even works out a little better, none of the family drama!
Please know you are an inspiration to me.

Marilyn


Wed Sep 21, 2011 2:08 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
Marilyn,

You understand. It is energy that I don't have.

I have turned it over to a higher Power.

_________________
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 Sep 22, 2011 12:37 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Don't be condescending, Honey
Craig,

You need to feel secure. I appreciate that. Coy seems to feel very secure in my care. Even when we talked last week about possible future placement if the need arises, he seems to trust me to do the right thing.

He did not feel that security in the first months, when he struggled with paranoia and didn't know if there was anyone he could trust. Craig, I really wish I could tell you how we got from the dreadful period of distrust to the current state of security. I really do.

It may have been partly my improving caregivng skills, but I don't put a lot of stress on that.

It seemed to have been mostly a change in Coy, perhaps in response to medications, and also in reduction in the inflamation in his brain (assuming that theory is correct.) Dr. Boeve was pretty aggressive in introducing one drug after another, and each one did what it was hoped to do. We also were diligent in lifestyle aspects -- Coy did water exercises, ate healthy, had regular bedtime, mealtimes, etc.

Coy started out much worse than he is now, and than you are now. He had zero responsibilities for financial stuff or other major decisions. This at first fed into his paranoia, but as he improved he became OK with giving up control in these areas, and now just trusts that things are being handled.

I wish I could send you security in a same-day FedEx box! I don't know how to get there. Perhaps discuss this with Dr. Boeve ...?

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 22, 2011 11:15 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Don't be condescending, Honey
Jeanne,

I would sign for that box…. COD….(cash on delivery) (I would pay for shipping)

I know I will get a laugh from a lot of you with this following thought…but…here goes….

it is not paranoia and delusions right now….

it is self preservation….you are all out to get me! well…you are….aren't you?

of course you are…

well not really….but….

I am already well done….I am not supposed to look at the prognosis….really….

I am not supposed to feel like there is a sense of urgency….really….

I am not supposed to guard my independence…..really….

I am not supposed to question those that can help or hurt me….really….

I am not supposed to be sick….really….

…..

where is that dang box….get it over here!

_________________
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 23, 2011 7:02 pm
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