It is not Coy -- it is the disease: autopsy results.

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I just received the autopsy results for my husband, Coy. I may want to share more details later, but for now I'll quote one line from Dr. Boeve's letter:

"I know your challenges with Coy were enormous, but as we are aware, these challenges reflected the neurologic disease and not Coy, the person."

Throughout our long journey I often reminded myself, "It is not Coy saying/doing these things. It is Lewy!" (He had Lewy Body Dementia.) I think that is a critical distinction for anyone caring for someone with dementia. If your loved one seems changed, it is a neurologic change -- not one she or he can help, and not one you caused. For example, if your loved one was usually very considerate and now is extremely self-centered that is probably a result of the pathology in the brain.

Whatever the cause, you must still protect yourself from abuse and protect your loved one from dangerous behaviors. But I think it is emotionally much easier when you realize the enemy is the disease, not this person you have loved and who has loved you.

Of course, some people were just plain nasty all of their lives, and we can't blame that on the dementia that they developed later. I'm not trying to say that all older people would be delightful dears if they didn't get dementia. But if your loved one has changed for the worse since getting dementia, it helps to recognize that the new behavior is not a reflection of their true self. At least it helped me.


My condolences on the loss of your husband. I know you have been caring for him and your mother. Your numerous contributions on this site have been greatly appreciated. You are an amazing person. Best wishes to you if you chose to take a break from this site. Thank you for your insights.
jeanne, we knew it wasn't Coy except maybe when he was being sweet. I admire that he faced his disease with the grace that he did. I know he wasn't given a choice and we probably didn't hear the worst of it on the group. I thought he was a mighty big man though to have a symptom and say it was the Lewy, while others may have become angry. You were a lucky lady to have such a good man in your life for so long. I know it is even harder on you now because of that. I don't know about others, but I find giving care brings me closer to the person, like becoming more of a part of the person -- hope that makes sense. I don't know what I'm going to be when my mother dies, because I am her caregiver now. It seems it would be far more difficult with a husband you loved.

Are you still working from home? or do you go to an office now? What I am hoping for you (and all of us) is that good things are down the road. We just have to get through a rocky patch first.
Oh Jeanne, I am so sorry for your loss. It's unusual for me to be at a loss for words, but I truly am tonight. I will pray for you.
Oh jeannegibbs. I'm glad you have confirmation on his diagnoses. I also felt my mom had Lewy body dementia. Try now to concentrate on all the good memories of Coy.
Dear Jeanne, My sincere condolences for your loss. I hope you take some time to heal and 'disengage' from the caregiving lifestyle and will enjoy getting back to normal. We have all appreciated your many insighful and knowledgeable contributions to this forum. We hope you choose to stay with us in the future, or at least pop in for a 'cameo' once in awhile.
Dear Jeanne so sorry for your loss, you have been an amazing inspirational friend to so many of us here and I pray you continue to send us your support...
Condolences jeannegibbs. I have thought of you often and hope you will heal and get to do whatever your heart tells you.
I am so sorry, JG. I can understand the emotions of someone who deals with a loved one's complete personality change from disease, and how emotionally wrenching that really is, especially if they were the warm, kind types before... Again, I am so sorry, but the way I see the world, your husband is in a place that is his OWN idea of happiness and heaven...I believe we all go to our own special places of peace when this life is over. I believe we will know all that was, is and ever will be. I believe that we have free reign to visit every single creation that the One has created, and there are endless worlds and people and all kinds of interesting creatures to meet. To me, death is not the end. It's the beginning of a glorious adventure. *hugs*

I'm so glad to hear your words again. You are at the end of the road I am just beginning with my husband. As I see it, you hated the disease, but never stopped loving your husband. That seems hard to me, but with your example, I will try to do the same.
I am so sorry for your loss!! From losing my dad from dementia and now having my mom live with me and have it I have learned one very important detail that not many mention.We started grieving before out loved one was gone because we had been losing them piece by piece for years.I hope you take all the time you need,and I am praying for you.xx

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