Of course we are, Craig. We're all out to get you through as much as we can through a discussion forum.



It seems you are pretty much the only one looking at the prognosis and trying to do anything about it. And someone needs to look at it and do the work.



Really? Again, someone needs to....



Well, actually, Craig, it could be time to let down your guard on your independence and start learning how to depend on someone else - someone dependable, that is. If there isn't anyone dependable in your life, find someone. Even a professional. What if you could find someone like Marilyn? Someone removed from the politics and concentrating on you. Because that's what you need right now, I think, in order to feel secure. Someone who puts your needs first. And you need to learn to let someone put your needs first. You've had control for so long that allowing even a part of it is hard, I know. I'm a control freak, too. Works great for a project manager, but not so well for a patient. Learning to let go must be torture.



You still need to survive and questioning things is part of survival. Of course you should question everyone and everything - while you still can.



Well, you are. And those who expect you to be the same guy you've been up to now need to get over it or they are in for a rude awakening. Or, and this is a leap for someone who is not there and doesn't know the whole situation, maybe it is time for you to order your life in a way that removes the burdens and brings in support. That's the gentlest way I can put it, I think. And I am butting in where I don't know enough to be saying this, but I'm doing it anyway. Craig, if all you have to depend on (locally, anyway) is yourself, then you need to start building a new support system - even if it isn't friends and family. There is some urgency. You need someone to lend strength and you need to stop propping up others. You can't do it anymore and it is wearing on you to try. Are you talking with a psychiatrist about how you are going to face the future and about your current situation? If not, I think it would help. It seems like you are in some sort of limbo, knowing that things are going to get harder, but not willing to let go of the things that make it impossible to move forward. It's time, in my opinion and again I may be overreaching, for some tough decisions and to lay out your project plan for how you are going to move forward. Do your risk analysis so that you can do what you need to to minimize risk... One PM to another.

Stop hanging in there and start climbing up the rope before it breaks.

Kate

Hey Craig,

Marilyn again. Do you think it would be possible for all of us to work out some kind of a game plan with you right here? I'm thinking a kind of brainstorming session with all who might have some ideas. Just a thought.
You have a lot of friends right here . Us.

Yes Craig, we are all here for you. Physically we may not be able to do anything for you, ( but believe me, if I won the lottery in the morning I would definnitely visit with you) but we are your friends, and care so much. If you hurt, we hurt, and you tell us how we can help, and we'll do it.
Don't feel alone in this - you are not!!! I know I think of you often, as I do all of my friends here, and though I can't be there physically, I am there in spirit.
A word of advice - don't beat yourself up about how you feel - the feelings are there, so therefore they are real for you, no matter what anyone says. (My councellor tells me this all the time - stop beating yourself up about your feelings - just let them be - very difficult for me, but so true.) Of course you are not supposed to be sick - you are too young to have this disease, and it is so wrong, and I would be so upset(putting it very mildly) if it was me. You have every right to be mad and upset, but please don't let these feelings take over and ruin your life. You sound like a wonderful, strong man, so use that get-up-and-go you have that got you this far - took you in your RV on a trip that went so well, took you to Disneyland, and has you looking after all your finances and the house - use that energy to look after YOU, instead of wasting it on others.
You are a fighter - we have seen plenty of evidence of that here. Keep fighting this awful disease, and put yourself first at all times - that is not selfishness, it is survival. You will find the support you need, I have no doubt about that. If it is not family, it will be a new best friend for you. You have a wonderful spirit, and that WILL get you through. It must be so difficult, but try to look at your situation as objectively as you can, and try to work it out like you would a mathematical problem.

I hope I don't sound like I am dictating to you - I just feel so passionate about your situation and can't understand how a loved one cannot be there for you. It breaks my heart. My apologies if I have offended you in any way - it was not my intention.
God Bless you Craig, and keep up the good fight,
Gerx

Craig- I just want to second what everyone else has said here. We are all here for you as much as possible through cyberspace! I think of you often as you and I are the same age and I can't imagine what you must be going through. Please let us know if there's any way we can help. I like the idea of a paid caregiver who is only there for you and your needs, not anyone else in the home. I don't know what your financial situation is ( none of my business) but I know if needed you can get help from your state's Seniors & Disabilities Division or the VA to pay for a caregiver, as I get paid through the state for being my mom's caregiver. It's not a lot but it makes it possible for me to stay home with her instead of having to place her in a SNF, and before she needed full-time care I also worked for another woman part-time. I know that there are other capable caregivers out there it's just a matter of finding the right fit and you may have to "try a few on for size". Good luc!
Ellen

this is such a cruel disease…

cancer comes…announces itself to everyone….and gets to work…and then it even gives you a chance to beat it…

lewy comes….defies identification…and gets to work….and then takes a break….and then plays with you….and then takes you down….and then plays with you….and lets you know no has beaten it….

please don't believe everything I write here….I have enough insight to know better…

the people around me are not in the same place in time as I am in knowledge and acceptance….and may never be…

the problem is….that is a problem….now….

I have run out of ability to handle it myself….

I have reached out….(or have I?)

personally to someone on this forum who has done what they could….actually they reached out to us…..thanks…

I have reached out to the people around me…by posting things on here so they could read it and hopefully try to make things better….is that fast dancing or what?

I have been to joint counseling here….not enough….and if you don't hear what is said….it is still more not enough….

I called alz assoc a few days ago to get referrals again…..no response yet….

there just isn't any meaniful way to find help in my shoes outside of your house….it is so much a luck of the moment thing….

while I have been blessed with what might be the best doctors and then you guys….I am struggling on the local front….my doctor is 1000 miles away….

so….how do we get to a good place with this? it has to happen….

patient and caregiver are not on the same planet….ie….caregiving has not been identified as needed...

did any of you find yourself in the same place?
before the diagnosis?
I would tend to think that most patients that you are caregivers for were not diagnosed when they were facing the same issues that I am….
how did you get to a better place….
how can I get to a better place?

it will become easier….because as I declining….it will become harder to deny that I actually have problems….then those problems will have to be addressed….
by all..
instead of added to...
how can I get to a better place?

things will work out…prayers will be answered…
we all work together for as long as we can...

Craig, I am afraid for you.

You have told us, more than once, that you cannot argue any more -- that you always have to be right, that for survival your brain thinks it has to "win" every time. OK. I guess I kind of get that. Tonya said it resonated with her, too.

How far would Lewy go to make sure you are right, that you win? You said early on that your wife wasn't going to be able to do this. I was afraid then that it might become a self-fulfilling prophesy. To be "right" in this early assessment would Lewy cause you to ignore any improvements, to disregard learning and insight, to judge every attempt harshly? In a cut-off-your-nose-to-spite-your-face manner, would Lewy sabotage your relationship with your wife by flying into rages over insignificant things, being judgmental and argumentative all the time, by withholding trust and love?

With Lewy calling the shots, I am sure that you will be able to "win" and "prove" that your early opinion was correct, even if winning is not in your best interest.

Based on my personal relationship with Lewy, I do not automatically assume that your experience and your observations can be trusted to be correct, even if they seem very "right" to you.

This post started out about what people call each other. What have you called your wife lately? If Lewy influences you to say dreadful things, when Lewy is temporarily out of the picture do you apologize and explain?

Have you said things that are physically threatening?

I think that your wife is not the enemy. I think that Lewy is the common enemy you have to deal with together.

I am afraid of self-fulfilling prophesies. I am afraid you might “win” – and lose a lot!

No one in your life (or mine) is perfect. Fortunately for the human race, even imperfect people can do great things. Please don't write off anyone who is not perfect.

Of course we see only what you wish to present to us. From it I know that I love you and wish you well. We all know that we want a good outcome for you – the best outcome possible in the context of this hideous disease. We know that you are a good person, a worthwhile person, with an extraordinary brain, and articulate communication skills. We ache for you. But we don’t see enough of the whole picture to be able to give practical advice.

A thousand miles is nothing in cyberspace. You have a world-respected doctor an email away. Contact him!

Well-reasoned and thoughtful response, Jeanne.

Jeanne,

I am afraid too…

but we are not afraid of the same things…

Lewy will win…at all costs…when lewy is in control…thankfully lewy is not in control…

I am still in control…for how long(now is that a self fullfilling prophechy?)…no it is the raw truth…

why am I am in control….applying knowledge to a known problem and winning…yes I am still winning….one day lewy will win….that is what we should all be preparing for….I need the ability to win for now….others have to forfiet that luxury for now….for if I lose now….they do not win….lewy will then win now….

unfair….you lose now…period….simplistic…but isn't that how it feels?

Do you know what winning for now means for me….

look me in the eyes…
don't talk over me….
don't argue with me….while raising your voice….(okay to disagree)
don't keep talking when I ask you to stop talking….
don't overwhelm me with anything….talk….busy talk….loud talk….your anger….
tell me you are committed to being there….for at least more than 1/2 a day….a lifetime would be great…
don't leave me alone for days….
don't walk away from me….in anger….
don't leave me with problems that I can't fix without talking with you….

when you don't do all of that to me in the same moment….
then lewy starts winning….
I am still in control….I am still the one begging for you to listen….to what I need...
I am the one who leaves the house…before lewy does win….

I am afraid….but we are not afraid of the same thing…
I don't know how much longer I can do this….
when will you understand?
your anger is no match for what is coming…
your anger must be gone before lewy starts winning….

I am already vulnerable…trust me….
you must be vulnerable….for me to trust you…
show me just a little respect for what I still able to do…
be angry at lewy….somewhere else….not at me…

there is no room for anger on your part…none…sorry…I can't manage it…this I can't do…I fully recognize this….I make myself vulnerable by saying so….I see way more than I want to in this…this is fear….

I know I am not being totally reasonable….
life is what it is…
the other choice is not to be here….
I have no choice….
use yours…

Jeanne….you do realize I wasn't really talking to you…all of the time

I just wanted to say a few things and this seems like a good place to say them…

can I trust myself? hopefully I still can…I know one day I won't be able to…

I can recognize some things that I can no longer do….

I can no longer do 3 column math in my head….I used to be able to discuss changing complex business computer systems on the fly…and then make the changes….I used to do Algebra for fun….

did I read about that change in my abilities in a book and self prophechize it into reality?

in mini mental exam….I could only remember one word five minutes later….did I read that if I did that in a book it would make me look sick and thereby there is some benefit in it….

I believe there is a tendecy to believe that maybe….just maybe….some of what you see is being made up by the patient…..

I think it makes it all easier to believe or to handle….or it just might be a self preservation mechanism on your part….

on the other hand….I appreciate the thought that I might be already out of touch with parts of reality that I am not aware of….

makes all of this a real pain in the butt…..

so…what should the person dealing with me do?

fuss at me?
ignore me?
tell me I am paranoid? delusional?

how about a different approach….I know one….
how about talk calmly to me…let me talk it through…listen for me….not just to me…

if I knew you were only going to be able to make sense or be understood for a short period of time….
I would put off everything else and listen to you…I wouldn't want any part of you to go wasted….

Craig, fearing that some beliefs may become self-fulfilling prophecies is not the same as claiming all distress stems from self-fulfilling prophecies.

You know that.

You know that I am not claiming you "prophecized" your memory loss into being.

You know that I do not believe you are making any part of your illness up.

I think you know that. But maybe a touch of paranoia prevents you from knowing that. How can I tell?

Craig, I am sorry that you are so willing to dismiss my concerns as "self-preservation" on my part. When your wife expresses concerns, do you dismiss those, too?

I truly want the best for you. I don't want other people to prevent you from having the best. I don't want your own disease to prevent you from allowing other people doing their best for you.

Joint counselling, with an objective third party listening to each of you and helping you to listen to each other, sounds like a good idea to me. How many sessions did you try? Are you going to continue?

Craig, I'm sure most caregivers try very hard to do all the things you suggest all the time but we are only human. Walking on eggshells 24/7 is an exhausting experience. BTDT.

Craig,

Maybe -- just maybe -- you need someone to tell you when you are delusional or paranoid. If you are, sometimes, and you don't know it (which, of course, you wouldn't). Sigh. So hard.

My bipolar brother deals a lot with paranoia. He knows it, theoretically. He has been told by more than one psychiatrist. So when he calls me up with a long rant about what his occupational therapist did and how he plans to get back at her, etc. etc. etc. at great length with lots of repetitions, I listen carefully, and when he winds down, I often tell him that I can see how upset the incident has made him, but there is another explanation for the OT's actions. So, he'll say, you don't think she was deliberately trying to cause me trouble? No, I say. I think your paranoia is kicking in here. All four of his sisters do this with him. We are sympathetic. We listen and listen and listen. And we reflect back to him another version of reality, and remind him that his view might be tainted by his disease.

Maybe, Craig, if you were my loved one, I would sometimes tell you when your behavior seems paranoid or delusionsal. Maybe. Who knows, unless we are in the moment?

I know that you very probably have clumps of alpha-synuclein protein in your brain. These have already caused enough decline for you that you are unable to continue work that you were very good at. It would surprise me if you didn't have some decline in your interpersonal skills as well. This can be very, very hard on loved ones. Ask us. We know.

Not having prior experience with someone with impaired interpersonal skills (that is not someone I married, for example) we caregivers don't always handle it correctly (if there is a "correctly"). And not having any psychiatric training, we don't always intuitively know what to do when interacting with someone who is impaired.

Are the two of you still planning to go to the training session by the Mayo next month? Learning together what can be done to manage this disease in the early stage should be a very valuable experience. By the end of it I would think you will both be in much better positition to decide whether you can work through this together, or whether the marriage is more of a burden than a comfort.

Wishing you optimum results as you both learn to deal with Lewy!

it is frustrating…

Jeanne you know I put you in the conversation so someone else would think about what they are doing…..I was never talking to you….(only to say thankyou to you)

Pat….eggshells….more like broken glass and burning coals….I am dancing on this stuff 24/7….there is no respite for me…drugs maybe….I am reaching out to someone to try harder….I am not shirking my side of the equation….I am dancing my butt off…literally… (I am not minimizing the caregiver role…on the contrary…I have the highest regard for what you guys do….as long as you try…how could it be any way else)

I don't need the drugs yet….when I quit trying or can't distinguish that I need to try….then I need the drugs….

I need compassion….I need someone willing to work as hard on this as I am….

….I am scheduled for the next Habit at Mayo….Oct. 24….I have a backup partner scheduled….my oldest daughter…

lets get serious now….I am proactive, I am here, I am sick, I am guilty, I am in need, I am committed, I don't know what quit means and I live it that way, I am more needy than I can give ( I would rather fill this need with you than a drug)…

I have given up on appearances and am reaching out for the good stuff….either you are ready to do so or not….its been six months since my diagnosis, I don't get a break from reality…your break is over…..

now to sum all this up….
lets tie this into the original post…

the original post was about condescending talk to a patient….

I replaced that with talking anger to a patient….

neither has no place in this disease….

no one can justify using anger in communication with a patient….
I am the patient….

don't fight me….help me if you can

1000 miles away....

Craig, do you have any support system, beyond your wife, locally? All due respect to Dr. Boeve, but I am sure he would agree that you do need regular, frequent, assistance in dealing with Lewy and with your life in general. Whether that be a local psychiatrist, counselor or support group, you need someone locally.

Control.
What control are you thinking about? Control over your own actions? Certainly you want to retain as much as you can, but as caregivers we are well aware that you won't always be able to control what you do and say. Control over your situation? Realistically, you never did have control, did you? You worked hard to make things easier for those who shared your life, but when it comes down to it, none of us has that much control. Control over how others interact with you? Also something you can't control. You can influence their behavior with your own, but you can't control it.

I think it is safe to say that none of use who have found ourselves in caregiving roles have gotten there easily. It's a struggle for us, as much as it is for you. Some of us have struggled so hard that we have ignored symptoms until they could no longer be avoided and found that our LO is in the mid to late stages. Some of us are asked to turn our own lives upside down - some to give up part or all of what defines our own lives - in order to care for one person. Some of us can't. If it were possible, I would have willingly quit working to care for Mom, but that would have lost us the roof over our heads.

Lewy doesn't attack just you - he attacks your family and everyone around you. In some ways, your family is losing control. And in some ways, your wife is facing taking control for the first time in her life. I am well aware of the struggle she finds herself in. But it seems high time for her, and you, to recognize each others' struggle and acknowledge the position you find yourself in. Not being able to control the situation doesn't mean that you can't plan for it and influence it through that plan.

Could it be time for you to sit down, recognize all of the issues you are confronting as a family, make tough decisions and make a plan? This means NO blame, NO faults and plenty of forgiveness. It also means that everyone needs to be honest and that honesty should be rewarded with acceptance. You need to accept and forgive as much as anyone else does. Then you can face the future with a plan.

What is being asked of your wife is difficult. For some it is impossible. You both need to know which it is. You both need to, without blame or impossible expectations, know if you can face this as a team or if help is needed. And if help is needed, you need to find that soon. That doesn't mean any change in your relationship with your wife - just your expectations of her. Maybe all that is needed is some help with the day to day struggle. Maybe more. But you need to define that now, before things get any worse.

If I could get in the car and drive that 1000 miles to Tennessee and visit you, I would. But I have responsibilities here. And it wouldn't do that much good, anyway, because all of this needs to come from you and your wife. The two of you (with the help of your children) need to figure out your future. Please don't delay.

Wishing I could fix it all.

Kate

Craig,

I believe that Kate is spot-on, both about local support and about the illusion of control.

I believe that your wife is attempting the hardest thing (or at least one of the hardest things) she has ever done. I believe that she wants to succeed.

I didn't know you before the disease struck, and I don't know you well now. But I can easily believe, based on conversations with your wife and with my own experience and the experience of others that I have read about, that you are no longer completely yourself.

A treatment plan intends to give you a little bit of yourself back, and to slow down or stop further erosion of the true you.

I think -- personal opinion -- that you are wrong to resist starting drug therapy (assuming that Dr. Boeve thinks that something would help).

It is not about drugging you so that you are easier to manage. Really. Maybe down the road if you are having extremely disruptive behavior in a nursing home that might be a strategy they would employ. Now it is about letting the true you come through. Giving you back a little or a lot of your genuine self.

You seem to think that if you work very hard at it you can control the disease. And if other people just work hard enough and smart enough, that will get you through. How is that working for you?

If there are drugs that can give you a better foundation so that your hard work has a better chance of success, why put them off? Many of the drugs work best in the earliest stages. Why not start them when they will do the most good?

Also, determining the most effective medications and building up to therapeutic levels takes time. (It took about 9 months for Coy.) Why not start as early as you can?

Craig, when I went into the ER eight years ago they knew within 20 minutes that I had life-threateningly high blood sugar levels -- undiagnosed diabetes. They did not tell me to work hard at a sensible diet, and regular exercise, and come back in a month to talk about drug therapy. They gave me insulin, right now. (I have later heard it referred to as rescue insulin treatment.) After the worst symptoms were managed by outside intervention then it was time for me to do the hard work of lifestyle changes.

Waiting to start drugs until you stop trying on your own is masochistic, in my opinion, and is also making it unnecessarily tough on your wife. I’m not urging you to sign up for some charlatan cure on the internet, but to consult with your world-renown neurologist.

I am excited for you to attend HABIT, and learn a large range of components of a comprehensive treatment plan. (If all it took was trying hard, they wouldn’t have put together a 10-day treatment plan.)

Sincerely,
Jeanne