Beautiful article in the New York Times about the singular pain of losing a spouse:
http://www.nytimes.com/2010/04/06/health/06cases.html

When we marry “till death do us part,” do we really expect to be parted by death?

Thanks for sharing! Good article.

Like so many others who lost their spouse this past year, I am getting through a year of "firsts." Father's Day was hard for the whole family.

I read an article in a hospice newsletter (unfortunately, it was a hard copy) that used a phrase that expresses how I feel:

"Whenever we experience a loss of someone we love, someone who was so much a part of our life, we have to cope with 'the perpetual presence of the absence.' Everything we do, each activity we once shared, reminds us of the person who died and reaffirms our sense of loss. Every activity once shared becomes an occasion when we experience that perpetual presence of the absence."

Though I often surf the forum, I don't often share; many times I think of something to share and decide that from where I am now, my thoughts are irrelevant.

I always pray for all of you still coping with "Lewy."

Joy

When we marry, we become one, so the loss of a spouse is a loss of part of the whole of 'us'. Even though my husband is still alive, we have lost much of who he was and a goodly part of that whole, already. I am sure that the finality and completeness of this loss is much more painful after the spouse dies but, for us, the grief has been felt for years.

Oh Joy - Glad to see you post. What a fitting phrase. Yes...the firsts are difficult to handle. I too just went through Fathers Day...and two weeks ago his birthday (that one was really hard) and yesterday was my moms birthday (she passed away 11 mos. prior to my hubby). This was an emotional month .

I also check the site now and then but don't post much anymore. It saddens me terribly to relive the awful parts of the disease. My heart aches for each and every one and their LOs. I wonder how we can we make it easier for those who are still on the path? We can't, but we do understand how they feel, what they are going through so I think its compasisonate to let them know we are still lurking in the background...supporting, feeling, praying for them.
Just posting a phrase like you just did...helped me...and perhaps others.
And yes, while some are experiencing the grief and sadness for many years...the grieving when they pass is different. I think its the finality of it all.
Difficult to put into words.
Good thoughts to all of you wonderful care givers. Remember...HE brought you to it...and HE will get you through it. HE will.

Dianne, what would be helpful to me is to know what things you wish you had done for your LO that you didn't, or things you wish you'd done a little differently. Thank you.

I really enjoy reading everyone's posts, no matter where you and your LO is on this journey. It just makes me feel better and more connected because there are so many who are/were dealing with dementia and it makes me feel not so alone. My sister doesn't get it, even though it's her father too, my husband is supportive but he doesn't get the relentless sense of responsibility, sadness, frustration, etc. that I feel almost all the time. My kids sort of get it, but then they can walk away from it because they are young and still in that invincible mindset, plus mom (me) is taking care of everything.
Anyway, I'm glad those of you who haven't been on much lately have posted. Thanks, it really helps! Lynn

Dear Pat:

Because Charlie only lived for two years after he was diagnosed, he did not get to the point where he did not understand what was happening to him. His personality was such that he made the best of where he was, he did that his whole life. As his abilities declined, he just enjoyed what he could do instead of being miserable over what he could not do. He could not lead the physically active lifestyle that he preferred but we did the things he could do. He forgot how to play cards but he could give the answers to the crossword puzzle when I read the clues. He couldn't play sports anymore but we watched everything on TV. We enjoyed reminiscing even if Charlie didn't remember things just right. It was not punishment for me to spend ever increasing amounts of time with him and I took him wherever I went. He never cared one bit that he was the only male present, he just made friends.

We were blessed with a caring family doctor who always sent Charlie to a good specialist when needed. The neurologist that he recommended not only knew about Lewy Bodies Disease and helped both of us understand what Charlie was experiencing, but he also accepted and considered our personal input. He was willing to evaluate Charlie's condition and prescribe drugs and dosages in accord with my report on how it worked or didn't work. This neurologist found and continued to consult with someone in a research study on Exelon. He listened to Charlie and agreed that his mental function improved and was maintained by dosage amounts not tolerated by other patients. In fact, at Charlie's death, he took four times the maximum recommended amount of Exelon. That certainly would not be good for most people. The part of this disease that I could not tolerate was the hypersexuality in Charlie that became unreasonable. Seroquel and several other meds (which I have now forgotten) had no effect on Charlie. Although risperidone worsened the parkinsonism, it worked to moderate the sexual activity. It did not eliminate Charlie's sexuality, but mercifully it controlled it.

I had lots of support from family and friends. They listened and learned about "Lewy" along with me. Charlie could understand a lot of the explanations from doctors and my research and, rather than being upset, it seemed to comfort him that his experiences were "normal" for his condition. He was relieved that the Capgras and sexual hallucinations weren't real; the miracle was that he could accept that these were not reality. He would describe what he "saw" and ask if it was real or not. His dreams were the hardest for him to accept that it was just a dream, that it didn't happen.

Probably one of the most important lessons for me was to take care of myself. Most caregivers will have permanent physical problems from the escalating physical demands of caring for a disabled loved one, especially if the LO remains at home. Many of us do not have medical backgrounds (and I was so grateful for the sharings from those that did) and it is a challenge to really understand what we are trying to learn. My family role has always been that of caregiver and advocate. Up to the battle with Lewy, my body took whatever abuse I did to it and bounced back. I'm sure my age is a big factor in some of the irreversible physical damage. That is the one thing that I know I would have done differently: I would have hired some help.

The things I miss the most about Charlie are his unfailing humor and boundless love. The two years between diagnosis and death were a "long goodbye" and the grieving process began well before his death. Caregiving demands take over everything (our minds and bodies are too tired to waste energy on big emotions) and when death removes those responsibilities, life gradually moves on and the roller coaster of emotions eventually slows. In the midst of the intense caregiving, I seemed to be in a box, unable to go back or to move forward. The box is gone now but it has been a challenge to regain life's zest and be excited about the future. I've never been where I am now nor felt like I feel now.

I'm grateful for a relationship with the Lord and I'm trusting Him for direction and leaning on His strength. He sustained us when Charlie was with me and I know He will not desert me.

With love and lots of prayers for you all,

Joy

Joy, thank you so much for the eloquent response, not just for me but for all of us who are dealing with the challenges of a Lewy LO. My husband is probably more progressed in the disease than your husband was but I try hard to find things for him to enjoy. His constant delusions make it difficult for him to focus on anything else for long. I do have a caregiver coming in two mornings a week from 8 to 12 and it's really made a difference between being at the end of my physical, mental and emotional rope and adjusting to the ever-increasing demands of the caregiving role.

One bright spot in this whole process was that my husband came to know the Lord. I believe He used it for that purpose--I never believed it would happen, though I prayed daily for it. He also used it to forge patience in me. As an RN, I am used to taking care of the physical needs but the dementia threw me for a loop, It's hard for me to 'go with the flow', wanting everything 'just so'. But with His help, and the help of all the wonderful people on the forums, I'm learning.

I pray that the Lord will make your path plain and give you peace in your new-found freedom. Thank you again and God bless you!

Joy - what a wonderful family, and what a wonderful relationship you had with Charlie. Thanks for writing such a touching response. Lynn

Joy
What a beautiful article. Thank you so much for that. I know I will refer back to that article you wrote from time to time as our journey progresses.
Thank you
Mary

Isn't it awesome when God brings roses out of ashes? And thrilling when we recognize His handiwork? How wonderful that Derek found the Lord in the midst of this destructive disease.

Charlie grew up in the Baptist church, but he accompanied me to daily Mass during his last two years of life. He came to love our priest, who loved Charlie in return. Father visited Charlie during the two weeks before he died when he could no longer attend Mass. Father celebrated Charlie's funeral Mass as a non-Catholic and Charlie is buried at Immaculate Conception. It comforted me that the church was almost full with the many friends who loved Charlie and rejoiced in his deliverance.

The most we can do for loved ones is to love them, whether they know it or not. Love and compassion are so strong in this forum, it is surely what draws us here. Although we are unlikely to ever meet, we are equally unlikely to ever forget each other.

May God continue to bless us all.

Joy