followup…will add to another thread…but had to write it or I will lose it…if I don't or haven't already…

which of those reactions do you want?

this is hard….you are going to have to choose which of those reactions you want….let's forget the blank stare….and the one you really want…and would have received in a different world….love and a big thank you….

1) frustration?
2) fear?
3) anger?
4) something else?

identify what reactions are possible….then go for the one that you are suited to deal with…

I don't know if this is possbile to achieve to some degree

the only relief you get…this is an act of love…love is a verb….and that this is a temporary situation for you…permanent for me

(hope I didn't offend anyone…playing in your sandbox again)

I am not sure who you mean by "you" in this sentence. Coy has lost much of his independence; he still has a lot. Most LOs in this forum are in more advanced stage than Coy, and have lost much more of their autonomy. It is very, very sad for them and for us.

Lewy took away Coy's ability to drive safely. I did not. (I can't tell you how much I miss his driving, and what a great loss that has been in both of our lives.)

Lewy took away Coy's ability to think things through to their consequences. I would never do that to him! I wish with all my heart that he still had that.

Lewy prevents Coy from remembering how to deal with minor crisis. I do everything I can think of to give that back to him.

I did not get to decide on when any of this happened, or the order it happened, or what Coy's reaction would be.

I have had the very unenviable responsibility of figuring out how to keep Coy safe and to maintain the best quality of life possible in spite of what Lewy is taking away from him. I think initially I was probably overly protective. I've learned.

Anger, frustration, fear, and sadness all seem to me appropriate reactions to loss of independence. But I would hate to see Coy spend what time he has left in these painful emotions. I am very glad that for the most part they have been replaced in Coy by trust. He trusts that his doctors and his loved ones and most particularly me want and are working for the best for him.

Jeanne,

I was just looking at things clinically…no emotions…no allowance for anything good

Responsiblity…and response…

the 'you' I referred to was the responsible you…not the one that would 'take' anything away from a LO….one that would be responsible and stop a LO from harming themselves or someone else…

I think I would feel trust if you were calling the shots…I hope I would…that is what I am trying to figure out…but, what I am seeing…if I didn't see or wasn't capable of seeing….or capable of trusting…at some point…I am going to probably see 'you' as the one who 'took' away these things…..

I fully understand 'who' is taking things away from me…it is 'me'…I am no longer the sharpest tool in the chest…I no longer have all my screws…my tool chest is missing a few tools….I have a few screws loose…and more screws seem to be backing out every day…

another revelation…not a new one…but important…I am so alone….no one understands….(or maybe, everyone else understands and I am delusional) no matter how they may want to….not caregivers…not doctors…you approach understanding…I don't want an exclusive….I don't have others with the same affliction to talk to…am I blessed or doubly cursed? what purpose does this serve? I know the answer to this one…all of this rambling is the answer…I am creating my new purpose

it scares me, that my worldview will likely turn into a … they against me one… my whole life has been about understanding I was bettering my situation through helping those around me…

it is very hard right now…trying to figure out the future…what will I be? … I will relax in this quest down the road…but, for now…it consumes me…the rest of my life has already been 'taken' away….not by any 'you' … but…by 'me'...

I am just trying to make sense of what I am reading here and elsewhere…nothing is absolute…or totally predictable…thankfully…I do have hope…just less than a few weeks ago….

Perhaps getting involved in the part of this forum or another forum where people with a similar diagnosis would be useful to you? I think I'd want to talk with someone else who was "walking in the same shoes".
Of course, that's why I got involved in this forum! Lynn

Lynn,

you guys are it…

the alone part is not by choice…

those other shoes belong to your LO's...

Exactly. The portion of the forum where people who have been DXd with LBD are some of our LOs and someone else's LOs. As I understand it, many people connect with others who have LBD and are able to share what they are going through with another person (or more) who knows just what they are experiencing.
Do you belong to a local support group? That can be very helpful too for both the person with LBD and the family CG. Lynn

It might.
It might be that way for a period and then improve.
It might never be that way.

Lewy is very unpredictable. There is a shared set of symptoms, but no person experiences every symptom on the list. Some symptoms can be offset by medications, at least for some people.

When Coy experienced paranoia and did not trust me or anyone else, it was heartbreaking and very difficult for both of us. Thinking everyone was out to get him, cheat him, harm him was miserable! For him, it lasted for a few months. Some LBDers never experience this.

Reading about all of the possible symptoms you might experience must be discouraging and terrifying. Please keep in mind that you will not have them all. You and your care team will have to deal with the symptoms Lewy gives you, as each one appears.

The possibility of a "me vs them" outlook is perhaps something you and your wife could talk about now. The only thing that got me through Coy's paranoia was the certain knowledge that this was Lewy, not Coy, calling the shots.

Getting back to the original topic of this thread, I wanted to mention that the problem has resolved itself because my mother has forgotten my phone number. Today is her 87th birthday. She knew it was her birthday but didn't know how old she was or what year it was. It has been a lesson to me that I need to have more patience with the day-to-day aggravations because with Lewy, they won't last!

Julianne

This is the good news/bad news scenario, isn't it Julianne? I am glad that you are not being bothered with incessant phone calls. I am sad that your mother's memory is declining.

Do you think that your mother is more content or less in her new level of functioning?

Actually, she is less content because in the last few months, it seems she has begun to recognize her deterioration and it scares her. (Her memory is really terrible, among other things.) She is very defensive about her forgetfulness and mistakes. If it made her more content, that would be a blessing, but it isn't. It is very sad indeed.

Julianne

I can remember going through this exact thing with my dad, Julianne. It is so frustrating that we can't do something to fix this - we do all we can to work with the drs., but some of these situations just don't seem to have an answer. I'm hoping that if it's med-related you can get things changed so she is more comfortable emotionally. There was a time where my dad had enough cognition to know he was forgetful, couldn't find the right words, etc. and he'd either lose his temper from frustration or cry because it was so sad for him to know how bad off he was. It broke my heart. I'm hoping a new dr. might be able to help your mom in ways that her current ones haven't. Lynn

Thanks, yes, I hope the new neurologist will have some insights. The SNF staff says she cries every morning but most of the time she can't express why. What a way to live.

Julianne

I can't recall - has your mom had any strokes? If so, it's possible that that is causing emotional difficulties. Lynn

No, Lynn, they have checked her for that a couple of times. Three years ago, she started having some episodes where she just stared into space for a few minutes, right in the middle of conversations, and her doctor thought maybe she was having TIAs. (Looking back, I think they may have been early LBD symptoms.) So they checked her for strokes then, and they checked her for strokes when she was being worked up in the neuro unit in 2/2010, leading to the LBD dx. Negative both times, though the earlier MRI was helpful because they compared it to the newer one for changes in her brain.

Emotionally, I don't mean to sound harsh, but my mother has lived alone ever since I left for college years ago. She has always been very independent and now she is just not used to compromising. I think that living in the SNF involves huge compromises that frustrate her immensely, and she reacts very emotionally with crying and even some anger. Last week, she threw the staff out of her room and slammed the door when they were trying to help with her morning cares. I can understand the frustration but the emotional outbursts are something new.

Julianne

I know that some who cry constantly can be helped by certain antidepressants. Maybe she can be helped by the right medication. OTOH, crying might be very understandable and therapeutic. I'd be crying, too.