BC...your wife would really benefit from reading on this forum....she would realize that she and you are victims of Lewy! It destroys lives. Lewy is hostile..Lewy makes bad choices...Lewy attacks your life and causes it to revolve around LEWY.

she hasn't looked at the forum yet….doubt it will happen…talked to her today about it…know it won't happen...

I bought the '36 Hour Day' book a few days ago for her…us….put it on the table right next to the remote controls….it hasn't moved…

oh, well…I will deal it with it all…literally…in good ways…I will deal with everything now…and figure out how to make it all good….I am trying to get as much outside help as possible…

I won't stay in a hostile place while I am able to remove myself...

BC - sending you lots of positive thoughts and I hope your wife comes around, learns about your illness so she can be supportive and helpful. Lynn

Oh Craig, what an especially hard spot you are in! Is your wife in denial about your diagnosis?

You are quite right about needing to get yourself in the best situation you can, while you still have control of that. I sincerely wish you the best in getting all the help you can with that.

Hugs, Jeanne

Hi, Craig.

First let me echo what others have said. I really appreciate your posts. They have been quite a help.

I've never been married, so I probably don't have any room to comment, but I'm going to anyway. I gave up on the knight in shining armor way back when I was in college. It is something that I hope people grow out of by the time they get married, but it seems your wife hasn't. Now she needs to go from princess to partner to caregiver in one huge leap. That's tough. And if she married the fairy tale and not you as you really are, she might not be up for the leap. But that's something the two of you need to find out now. If she isn't ready for the long haul and doesn't want to be, you need to start looking for a more willing caregiver and also need to have your power of attorney and medical directive taken care of now. That doesn't mean ending the marriage, only finding a more mature person to handle the tough stuff.

Also, you need to stop worrying about fixing things. You cannot fix this. You can only learn to live with it. And your wife can only learn to live with it. You never should have been the knight, you should have been a partner. You've spent your marriage reinforcing your wife's perception of the princess-knight scenario and now both of you have to recognize that you can't do it - that it is time to really be partners. I hope you can make this transition, but the reality is that you can't worry about anyone else. You have to take care of yourself and let her take care of both of you.

Learning about LBD has made a huge difference in my adjustment to the caregiver role. I can't remember the authors of the two books that have really helped me, but their titles are "The 36-hour Day" and "Caregiving: Drowning in a Sea of Cognitive..(something)." Not only will these books help your wife understand your situation, but they will give her a good idea of what is coming and whether she can handle it. She might surprise you and step up to the challenge. Some people only find their strength when they meet up with a huge challenge.

But try to stop worrying, Craig. I've noticed that when my mom worries her condition gets worse. You don't need that.

Best wishes. You are a real blessing to us.

Kate

Well said, Kate. I think that there are certain areas of the US where the culture is still the princess/knight thing, and it is alive and well (or not so well). It is unrealistic and doesn't do anyone any good, IMHO. Lynn

BC,
I also couldn't agree more with what Kate wrote, very insightful and you do need to have someone help you with all of this as it is much bigger than you and the stress of trying to fix it all will do you great harm.

it will be okay…

listening to everything you all are saying…

my model was pioneers…moving across the unknown…knowing that each could depend on each other to do whatever was necesarry…

pioneer man and pioneer woman….that is who I am looking for now, a princess is not of much use…not sure sure how a pioneer turns into a princess…hunting must have been too good in the beginning….or I never stopped hunting...

anyway…there is a lot going on…we all have something to deal with….Lewy sure has shortened my fuse and my allowable measure of tolerance…that seems to be a fact…that will only move in the same direction…

I am sure this happens often…it gets resolved sometimes, sometimes not…or to restate…it gets resolved every time… just not the same way… we just won't read about the other side of things on here…what would be the point…there would be no caregiver….

we might work this out together…at this time it doesn't look like like that…for once in my life, I have to be selfish….the end result has to be for my benefit, from the beginning…I think I have stumbled upon or maybe even read this somewhere…but, what is helping me to understand what is going on is this thought…

for me…all of this is permanent…one shot, no do over...
for others…it is just a temporary bump in the road…

it taints the air in a way that is self defeating to explain to someone who isn't listening…it becomes unimportant in a hurry to explain…only results matter…now

You do have a lot to deal with, navigating this disease, Craig. However, LBD is not just a bump in the road to others. In my own experience, as well as knowing dozens of other caregivers trying to do their best for their LOs who have this disease, it is an all-consuming, extremely stressful job, mentally, emotionally and physically, and a job that often goes on for many, many years. Perhaps your wife is exhausted, overwhelmed, depressed, frustrated, doesn't know how or where to get help?
Have you tried printing out any of the postings here for her to read, ones that you think might be of help? I wish you all the best. Lynn

Lynn,

I was not trying to make light of the caregivers role…

neither role is desirable…

neither role is enviable…

neither is a winner…

one has more urgency to the person living it…and that I am thinking causing alot of the frustration and anger and misunderstanding between the two…I am thinking and attempting to understand where the anger comes from….urgency

Please understand, Craig, that this disease doesn't just happen to the patient. It happens to the whole family. This is also happening to your wife. The world you built is crumbling around her and she is looking at caregiving that will eventually take over her whole life. Caregiver burden is a real and very serious medical diagnosis.

This is what she needs to understand. She needs to know that her world will change even more and just how it will change. And then she owes you and herself the honest assessment of her ability to rise to the challenge.

You fear there will be no caregiver if she left. Rest assured that there will be someone, even if you have to pay for the care or move into assisted living, which could really help both of you. The community of others both with the disease and caregiving could be a true support for both of you. And if your wife accepts the challenge of caregiving, remind her that we are always here, we know what she is going through and we'll help as much as we can.

Please try to encourage her to learn all she can about the disease and caregiving. When she has a good understanding of what is happening and what will be needed, talk it out with her and remind her that she needs to be honest with you and with herself. I hope at that point she is ready for the challenge. But if not, you will know it is time to look for help in other ways.

And she should hear from someone that's been there that though this is the toughest thing she'll ever do, it is also incredibly rewarding. I doubt you'll find many on this forum that regret staying with their spouses and seeing them through this.

Do try sharing some of this forum with her. I hope she will find it useful. I know it will help her learn about what's coming.

You are a blessing, Craig. Don't ever doubt it.

Kate

Kate,
thanks…
there is hope..
it is just me…
I am working on me…
my wife is working on us…

For a few years (before county budget cuts) we had a weekly visit from a nurse. Once she said to me, "I love seeing you and your husband interact. You treat him with respect." I thought this an odd comment. How else would I treat him? Didn't she see that everywhere she visited?

But then I realized that not all couples treat each other with respect even when both are well and fully functioning.

I have heard a good friend agonize over how her mother treated her demented father, and a coworker echoed a similar story. I've seen posts about this, usually from a son or daughter wanting to improve their parents' relationship.

You are right, Craig, few of these difficult-relationship stories would appear in forums like this, since the caregiver would generally not be participating. But they definitely happen.

Do I think a relationship can ever improve after one partner gets a dementia diagnosis? Incurable optimist that I am, yes, I do. The younger the couple, the more hope I'd have. It is not as likely that a couple in their 80s married 58 years can overcome life-long habits of relating to each other as it is for a couple in their 50s to do so.

Hugs to you both,
Jeanne

Hi, Craig.
It's reassuring to hear (read) that you are working on you and your wife is working on the "us." That is as it should be. Roles are reversing. Where it appears that you did a lot of the "us" work during the knight-princess stage of your marriage, it sounds like your wife is seeing that the "us" work is now demanding her attention.
You are moving from the knight-princess stage to the queen-wounded king stage. This is where she gets to show her strength, show that she is strong enough to protect the kingdom. Let her. Encourage her. Praise her for each strength she shows. She needs to be nurtured through this just as you do. And you're still at a point where you can help her grow.

I'm glad to hear your optimism. Know that, at even the worst of this disease, there will be small joys and achievements to celebrate.

By the way, Craig, I'm from one of those families in which dementia seems to flow from one generation to another. It seems inevitable to that I will someday be in my mother's place. Your notes are helping me understand more and be a little less worried about when it will be my turn. Thank you.

Kate

Frank has declined in the last few months, his zyprexa was reduced to 2.5mg, but I didn't notice ANY change for about 6 weeks. I don't know if it would take that long to get out of his system or it's just the new normal. He wanders aimlessly most of the day, yesterday I was looking for him and he had fallen in the back yard, I helped him up, cleaned him up and put him to bed, 5:15PM, it's now 7:15AM and I haven't heard from him all night. I've come to think he is mentally exhausted. Nothing comes naturally, he struggles to figure out how to eat, what to do with the straw, how to sit and it goes on and on. Lately, instead of my being frustrated, I'm sad for him, I think he understands enough that he is aware of his limited abilities. I wish things could be better and we could be happy again but the only way it will get better means Frank will no longer be here.