Gerry, my heart goes out to you. I know exactly what you mean, though it must be much more difficult when it is your husband. Sending you loving angels to keep you strong. I too have gone from the frustration to feeling so sad. The only release from this horrible rollercoaster is that our LO passes - and that is not what we want either. Keep strong and know that we are all here for each other. God Bless,
Ger xxx

Hi Craig, I've been following your posts, and since my Tom was diagnosed at age 58, I thought I'd reply. We have the traditional(?) marriage--husband/provider...wife/caregiver--far from the prince and princess scenario but more like roles we both enjoyed and were confortable in. Tom retired early after 26yrs in the Air Force to care for his parents. After they passed we built our dream house and moved. Shortly after that Tom was diagnosed. It wasn't til I found that he'd been forgetting payments, checks, etc. that I realized the enormity of my new role and FEAR set in. I was fairly confident that I could handle the caregiving, but the financial aspects and things he'd always handled seemed overwhelming--and sometimes still do. Also, I feel CHEATED (and he does too.) This was the time we were to relax, enjoy our lives... it won't happen as planned. Why am I bringing all this up? At your age, you and your wife are dealing with many more emotions than Lewy. Perhaps, both of you each admitting your fears and acknowledging they are valid is a first step. Also, deciding what roles you are able and willing to play in your marriage, not just with regard to the disease, is crucial. It's still possible to share your life if you both give up unrealistic expetations (let go of the prince and princess guilt), get outside help and deal with one issue at a time. Don't let emotions defeat you. Regards, Kathy

It really stinks to be me right now….

many things are working against me right now….sounds delusional? not a chance…..its all too real….

too many opportunities to let the monster out….

it is just not in me to give up….

most people in the outside….won't listen long enough to understand that they can't argue and win….Lewy won't allow it….I used to allow….I would still allow it….but….Lewy has to win….

the brain has to win….that is what all this is about….the brain is trying to win….it has lost the ability to play chess….it can't give up a man to win later….it has to win every move…..or it doesn't make the move….

I believe that is the essence…..win or don't move….

the brain is rerouting to win….with only the most basic of moves…..and as time goes on….there are less and less moves available…..

like I said…it stinks to be me right now….I just wanted to appear normal…..it stinks real bad….

Ah, but you are winning, Craig.

Every day you wake up. Every time you have a clear thought. Every time you are able to express that thought - here - verbally - with a hug or kiss for your wife. Every time you see something and find it beautiful. Today might not be a good day but it is still a win because you have today.


The only way Lewy wins is if you give up. Remember that it ain't over 'til the fat lady sings and I'm just warming up.

Best,

Kate

When Coy was at his worst, in the first year when he presumably had inflamation in the brain and before the full drug regimen was in place, he still had very clear lucid periods among the delusions and paranoia and confusion. He used those lucid periods to emphasize to me what his end-of-life decisions were, to think ahead some, and to bemoan his losses. In the lucid periods he was very aware of what was happening to him.

My sister, empathising with how horrifying this must be, commented that if she ever goes gaga, she would want to just get there and not experience the journey.

Alas, we don't get to choose. LBDers are always on the journey. Always have one foot (and part of their brains) in gaga land, but seldom so far in they can't feel the pain of leaving normalcy.

Craig said it spot on: It stinks.

We all have to grab and hold the joyful moments and the beauty, and get through the journey as best we can.

I am so sorry for what you are going through Craig. I hope the dr. can get you on a drug regimen that will lessen your symptoms. Lynn

anger revisited….

Speed….is the catalyst….

I have been employing a tactic that is working…when others play along….

here's the drill…

I have a problem…
If you talk slowly…
If you don't talk over me…
If you don't interupt me…
If you let me interrupt you if I ask you nice….(because I will forget what I have to say that is important….you won't)
then we can have a delightful conversation…

If you talk fast…
If you don't take turns…
If you ain't nice….

If things proceed too fast I can't keep up….for any reason too fast…
words too fast….too many words from more than one place….too much information….

If I can't process it slowy…..(speed)
too much information takes a lot of processing power and (speed)

my brain is going fast internally….at what it is doing….
it is having problems with the interface….in….or…..out…..

if you aggravate that situation….you cause a bigger processing load…..

this causes a speed jam….nothing takes place….except base operations….

vile….nasty….gestures….words….thoughts……
those things that have been stored for easy and fast retrieval…..no matter what the backlog…..

just…..some thoughts of how things are working for me….

I have learned a couple of new phrases that helping me tremendously…..

(no matter what takes place that I can't stand)…..'thanks for the compliment !'

followed by……'you no longer have permission to hurt me for the rest of my life'…..said very calmly and slowly….

temporary relief….I am trying really hard…..

Every once in a while, Craig, I am able to ask my mom a serious question about what this is like for her. I was able to ask her about the speed at which the many thoughts in her mind were hitting her and she, with a sad nod, confirmed that there were too many thoughts moving way too fast. I suspect that this has something to do with her trouble with sentences. I think that by the time she gets to the second or third word, her mind is already on another thought and she has no idea what she was trying to say. Is it a bit like a truck going down a mountain with no brakes? Any chance to pull off goes by too quickly?

Then, I get a feeling that when I try to help by offering words I think she is looking for, I'm actually putting potholes in her way. Is that it?

Could this thing be, rather than a lack of memory, an inability to slow down to find the memory?

There should be training classes with practice labs for people who love someone with LBD. Sometimes I get the feeling I'm doing more harm than good through my lack of understanding. And now that Mom often doesn't seem to know me beyond being a familiar presence, it's even more frustrating. I want to make things easier for her, but sometimes feel like I'm causing more pain. I wish I knew what I was doing.

Kate

Kate…please be careful listening to anything that I say…

I am frustrated and clueless…maybe worse than clueless…maybe even harmful….

I have always been one to think out loud…bounce it off the wall and see how it sounds…get feedback and reevaluate…

please be careful with anything that I say…

in my travels…I have found that the only thing I could trust was within me…there is no school for anything where all the answers are provided…

now….I find that my…me…needs to always be questioned…

…I think we all need to do what our heart tells us to….if we try…we won't always get it right….I want my kids to try later on