Here's another LBD caregiver blog I recently learned about:
http://thecaregivercalling.com/

The blogger is Pete. His wife Mary Ann has a diagnosis of Parkinson's Disease. Pete writes a lot about treating the symptoms of Lewy Body Dementia. I'm not sure when the blog began; I see comments dating to mid-2009.

Pete describes his blog this way: "Mary Ann and I have been married for over forty-three years now. For twenty-two of them she has had the diagnosis of Parkinson’s Disease. As anyone who has a spouse with a chronic disease understands, both have the disease. There are no longer just the two of us, but three, Mary Ann, Pete and the Parkinson’s. Since we can’t make the Parkinson’s go away, we have to decide what place it will have in our journey. Rather than fight it or concede to its rule, we simply live meaningfully and fulfilling lives in its company. With that said, there is nothing easy about living meaningful and fulfilling lives in the company of Parkinson’s or any other chronic disease for that matter. This blog intends to provide some practical tools for dealing with the daily challenges of chronic disease, as well as some ways of understanding the task of caregiving that nurture the spirit."

Much of the recent blog posts are about finding a good medication regimen, and then re-finding it when symptoms worsen or the medications no longer work. It's a constant struggle.

Here are a few excerpts that I found interesting:

"What seems different to me is that we appear to be losing ground at a pretty rapid rate by comparison to past declines. It seems that every few days something worsens. The changes seem too rapid to me to be a normal part of the disease process. In my mind the evidence still points to medication issues for the rapidity of the decline. The trouble is that there seems to be no clear and definitive approach to medicating those with a form of Lewy Body Dementia that produces consistent results. The same med can produce opposite results in different patients."

"...the use of various medications including Seroquel works for some and not others. There is no consistent pattern of treatments."

"One characteristic of forms of Lewy Body Dementia is that people can present with symptoms that cause Hospice or whoever is doing the medical care to suggest that the family be notified that the end is days or hours away. Then the patient can turn around completely for no apparent reason and return to relatively full functionality. With some folks in the online LBD Spouses group that has happened more than once."

Robin

Thanks for sharing this! The pastor expresses what all of the rest of us are going through. The entire time my LO has a good spell, I am on pins and needles waiting for a crash and burn. Our aide who comes in during the day will say that she is getting better, and we have to tell her to be vigilant because a sudden decline could occur without warning. Still, I am so glad we moved my MIL in with us. Even with the disease to deal with, it adds meaning to all of our lives.

I sure can relate...two weeks ago it looked like Tony was on his way out, not eating, oxygen level way down, gurling badly. Now for the last two weeks he has been better, nothing in his care has changed. Yesterday I began to see him slipping back again. I am just so glad that I have Hospice in the facility, as his comfort is their objective as well as mine.