Sundowner's Syndrome

I am working on the Alzheimer’s environment that will work for both of us. I have been blogging about simplifying our home—de-cluttering and making order—a place for everything and everything in its place—and less junk, junk-bunkers and stuff. Things need to be where my husband expects them to be. The garage sale is coming.

There is more to this needed environment than just order, however. Light is needed. I read that light is also important for the Alzheimer’s home.  According to Paul Raia, vice president for clinical services for the Alzheimer's Association of Massachusetts and New Hampshire,

“Alzheimer's patients at mid-stage of the disease need 50 percent more light to see at the same level .of acuity because their retinal function goes awry.”

See Link for above quote. Also Bob in the ALZ Reading room wrote Link .

Yesterday going into the late afternoon DH was a little agitated about a phone call. We went to the Hillsborough County Fair and he calmed down. We were outside and he had plenty of light.

One day last week at sundown time I called my husband to say I would be home late. When I got home, hubby was furious with me. He said he didn’t trust me and if I ever did this again (come later than expected), he would divorce me! I soon suspected my loving husband was having a sundown meltdown in a dimly lit room. “How would you do without me?” I asked sticking to my guns that I had indeed called him to tell him I would be late. Alzheimer’s caregiver training has made me almost innocuous to such charges.

The next day I asked him if he would ever divorce me and the answer was “No, of course not.” He had no recollection of the previous night. This Saturday morning my sweet husband is again watching "Fireproof", the DVD about saving a marriage. We both have been known to cry near the end of it.

Since DH is very conscious of having too many lights on in the home to save our electrical bill, I was not sure how to approach him about needing more light in the family room where he watches TV much of the day. However several years ago we had an electrician install three ceiling lights over the family room couch so we would not need lamps to supplement the ceiling light/fan which is usually not on. Now DH was using only one dim middle light while watching movies because two of those lights were burnt out and they hadn’t been replaced—a difficult job to replace because of the covering. (My sister-in-law says that she puts smaller bulbs in her ceiling lights so she doesn’t have to put that problematic covering back.) Too little light is what DH had—ready for sundowner’s effect.

So this week I purchased three new 5-year ENERGY SMART GE lights for track and recessed lighting to put up. I am keeping the receipt for five years. Packaging says it will save us $120.  Ironically it was near the end of the day (sundowner’s time) and my husband got the ladder out of the garage to install two lights which he did—and I wanted three all three lights installed. The light bulb cover was difficult to install after two new lights were put in. The middle light which still worked was not as bright and I told him we needed to replace that middle light also. (You don't see that light on now in the above picture.) DH got angry with me. I kept repeating my reasoning to him:

1. The lights would match in brightness;
2. They would all have the same five year warranty.
3. I did not tell him the third reason.When he turns on this unit, it would help with his suspected Sundowner’s Syndrome. There would be three bright lights.

We started to argue about replacing the middle light—“Please do it for me” I begged. Reluctantly he unscrewed the light in the middle, but gave up totally frustrated as part of the bulb got stuck in the socket. I said we would finish this another day, seeing we would get nowhere and that the chivalrous man he is, he would not accept my trying to get on the ladder to do this. Later while he was sleeping I tried but couldn’t complete the task. I will get our carpenter James to put in the center light and fix those coverings. I already called James to tell him about Sundowner's, etc. Since hubby spends a lot of his day listening to movies in this location, his phone is nearby, a bright room might means less sundowner’s meltdowns.

So what is Sundowner’s Syndrome? This definition link provides a definition:

Sundowner’s Syndrome is the name given to an ailment that causes symptoms of confusion after “sundown.” These symptoms appear in people who suffer from Alzheimer’s Disease or other forms of dementia. Not all patients who suffer from dementia or Alzheimer’s exhibit Sundowner’s symptoms, however. Conversely, some people exhibit symptoms of dementia all day which grow worse in the late afternoon and evening, while others may exhibit no symptoms at all until the sun goes down. Sundowner’s Syndrome largely remains a mystery to medical science, although there are several theories about why these symptoms begin at night. More and more studies are being conducted to try to determine the exact cause. In the meantime, some doctors believe it’s an accumulation of all of the sensory stimulation from the day which begins to overwhelm and cause stress. Some speculate that Sundowner’s Syndrome is caused by hormonal imbalances that occur at night. Still others believe that the onset of symptoms at night is due to simple fatigue, while some believe it has to do with the anxiety caused by the inability to see as well in the dark.

How can Sundowner’s Syndrome be treated? With good light and the training of me, the caregiver. Linda from the blog Early Onset (links at the right) wrote me about Sundowner's and my dealing with it:

I hope you find the following information helpful. It is "how to respond to behavior" from my Alzheimer's In Service program for health care workers:

• Remain flexible, patient, and calm.
• Respond to the emotion, not the behavior.
• Don’t argue or try to convince.
• Don’t take the behavior personally.

Last night I heeded her advice. Linda also said to consult the doctor about medicine.

When this third middle ceiling light is installed I will report back here. To be continued . . .