Saturday, December 25, 2010

Sundowners on Christmas

That Lizzie refused to believe today is Christmas was no surprise to me because she hasn’t recognized days, dates, birthdays, and/or holidays for a couple of years now. What DID surprise me is that today was a rather good day for her in that she was agreeable MOST of the day.

For starters, I awoke at 7:30 this morning ... a real treat for me because it meant I actually slept through the night for over 7 hours. WooHoo! When I realized the time, I sprang from my bed and went directly to Lizzie’s bathroom to check the floor. ALAS ... it was DRY ... dry for the first time in two weeks. Next ... check the bed. Dry again and thank you, Lord God Almighty! You see, for two weeks now, for some unknown reason, either Lizzie is drenched or the bathroom floor is flooded either in the middle of the night, or I find it in the early morning. (More about this in another post.) I think I was actually smiling with joy as I skipped to the kitchen to make my coffee.

She was happy when she got out of bed around 8:30 and made it dressed and smiling into the kitchen on her own today. I thought to myself, “WOW ... a GREAT gift!” Lizzie seemed to enjoy sitting at the kitchen table folding newspapers and pencil-drawing on advertisement cards most of the day until ...

Around 4:00 the agitation began. “Come on, honey, let’s go.” “Stop it!” “We can’t sit here all day.” “Where are you twin sister?” “We gotta go NOW!” Well, OK ... it was time to depart to our cousin’s house for dinner anyway, so off we went and she calmed down.

Once there, all was well as many people were around, and the kitchen entertainment kept her engaged. No sooner had I expressed, “Today isn’t so bad ... Maybe I CAN do this after all” when she began the agitation again with very similar words but with increased vengeance. If you have never witnessed an AD patient make this instantaneous switch in mood ... it is both truly fascinating and sad at the same time. It’s like a Dr. Jekyll and Mr. Hyde show at their best. By the time we got home, she was shivering and crying “Hurry, I’m cold. Hurry.” Once in the house and all toasty warm, she initially refused to take her nighttime medications, and when she finally did, it was because I stood beside her and put the pills in her hands one at a time and helped her drink the water. All the while she repeated, “I know what I’m doing. Don’t tell me what to do.” “You want the pills, you take the pills.” (That one made me laugh.)

For those of you who don’t know, this is the Sundowner’s aspect to Dementia and AD. It’s called that because the patient makes a distinct shift in mood around the time of day that the sun goes down. “Sundown syndrome is a term that describes the onset of confusion and agitation that generally affects people with dementia or cognitive impairment and usually strikes around sunset. Many people, though, use the term to loosely describe increased agitation and confusion that can occur anytime but may be more noticeable in the late afternoon or early evening” (from This all has to do with the internal clocks being off-set as the brain tries to keep up with everything, but it can’t because the brain is breaking down!

In these twin sisters’ lives, Sundown Syndrome is making Lizzie a most unhappy person, and for me ... living with Lizzie has become a life of anxiety and no-peace for me each and every day in the later hours of the day.



This has been the quietest Christmas Lizzie and I have EVER spent together, and I believe it to be a true gift from God that she is doing well this morning!

My LUV and thanks to my readers for your comments which I treasure and which have inspired me this morning (as I read them for the first time) to update the events in our lives most recently. I will do that later today.

May God bless you all this holiday, and may we all remember the reason for the season!

Friday, October 15, 2010

Friday, February 5, 2010

Down Syndrome and Alzheimer's DIsease

In a recent study at Washington University School of Medicine about Alzheimer’s Disease, it is suggested that Down Syndrome patients who live to middle age or older have reduced incidence of cancer (if they have AD).

Well … did you know:

Genes for Down syndrome and Alzheimer disease share the same chromosome 21.

Down syndrome, artery-clogging cardiovascular disease, and possibly even diabetes, appear to share a common disease mechanism with Alzheimer's disease, Dr. Potter and colleagues at the Florida Alzheimer's Disease Research Center, USF Health Byrd Alzheimer's Institute, recently reported.

People with Down syndrome, also called trisomy 21, develop a syndrome of dementia that has the same characteristics of Alzheimer's disease that occurs in individuals without Down syndrome. The only difference is that Alzheimer's disease occurs much earlier in people with Down syndrome; patients with Down syndrome begin to have symptoms in their late 40s or early 50s.

Most (and maybe all) people with Down syndrome develop the brain changes associated with Alzheimer's disease. However, Alzheimer's disease is not more common in individuals with intellectual disabilities from causes other than Down syndrome. An estimated 10%-25% of patients with Down syndrome have Alzheimer's disease at age 40-49 years, 20%-50% have Alzheimer's disease at age 50-59 years, and 60%-75% have Alzheimer's disease when older than 60 years of age. Alzheimer's disease decreases survival in people with Down syndrome who are older than 45 years of age.

Hmmmmmm .....