I think my wife with severe MS is exhibiting Sundowners. Any advice?

My God, I'm so sorry you are going through such difficulties with your wife. I can tell you that my mother was MUCH worse after her recent hospitalization, mentally, and even seeing mice running across the floor. She did improve quite a bit after a couple of months back in her room at Memory Care Assisted Living. I found this article for you in hopes you can glean a tip or two from it. It has to be posted in 2 parts due to character limits.
Best of luck to you.

10 Ways to Manage Sundown SyndromeHow dementia caregivers can soothe anxiety in the evening

by Amy Goyer, AARP


If your loved one has Alzheimer's disease or another form of dementia, you may be seeing changes in their behavior in the early evening — a phenomenon known as sundown syndrome, sundowners or sundowning.

It's a symptom of dementia (and some other conditions, as well) where this time of day can trigger sudden mood swings, anxiety, sadness, restlessness and energy surges, increased confusion, hallucinations or delusions. These may lead to pacing, rocking, screaming, crying, disorientation, resistance, anger, aggression — or even violence.

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For some, the behavior soon abates. For others it continues, flipping their sleep schedules so they are wide awake all night and sleepy during the day.

There are many theories about why this happens. It may have to do with the dimming light, extreme fatigue, hunger, thirst, pain or discomfort or hormonal imbalances as the sun goes down. Evening and darkness may tap into fears of being unsafe and insecure. Whatever the cause, seeing their loved one with these symptoms can be a nightmare for family members.

My dad has Alzheimer's, and we first noticed sundown syndrome when he was in the disease's moderate stage. His questions about "What's the plan?" or "What should I be doing?" and a sense of urgency that "We'd better get going!" increased around 5 or 6 in the evening. As the disease has progressed, his symptoms have improved, and I think that's thanks at least in part to a variety of techniques we use on a regular basis.

Some tips for managing your loved one's sundown symptoms:

1. Observe and minimize triggers. Watch for nutritional triggers and adjust eating and drinking schedules (like limiting caffeine, sugar and liquids later in the day). Does the home become more chaotic in the evening? Are too many people talking at once during mealtimes? Is the TV or radio on? Is there a change in caregivers that leads to more confusion? Is extreme fatigue setting in as evening approaches?

2. Maintain routines and structure activity. Maximize activity earlier in the day and minimize napping (especially if your loved one isn't sleeping well at night). Try to reduce challenging, stressful tasks around dusk and at night. Keep to a regular daily routine: There's security in the familiar.

3. Simplify surroundings and adjust sleep environment. Too much sensory stimulation can cause anxiety and confusion, worsened by changing light. Try to minimize physical, visual and auditory clutter. At night, keep the sleeping room calm and cool (experts often suggest a temperature below 70 degrees), dark enough (try light-blocking curtains or an eye mask, plus dim night-lights for safe navigation).

4. Distract. Try to draw attention away from troubling thoughts and anxieties by diverting or redirecting to favorite activities, foods, animals and people that calm your loved one. Maybe they are soothed by watching a favorite TV show, taking a walk, snuggling with a pet or reminiscing. My dad loves to listen to The Lawrence Welk Show; giving him earphones directly to the TV (to limit other sounds and amplify) is almost always an effective distraction.

5. Adjust light exposure. Some experts theorize that our hormones and body clocks are regulated by exposure to light and that when light is limited it throws us off — similar to seasonal affective disorder SAD

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 If adequate exposure to direct sunlight isn't possible, try a light box and use bright lights in the room. As it gets dark outside, increase indoor lighting. In the winter when days are shorter, I often turn on the bright back porch lights that are outside the window by the table where we eat dinner, which helps prevent Dad from thinking it's bedtime too early.
6. Play music and calming sounds. We use music throughout the day for Daddy — instrumental music as he wakes up, sing-along favorites or show tunes to activate, and calming music when sundowning sets in (try solo piano or classical guitar, or create a "relaxation" channel on Pandora or another music app). When he becomes anxious, my sister and I start singing his favorite songs and he joins in (a great diversion). Playing nature sounds like rain, ocean waves or just white noise all night helps him fall — and stay — asleep longer.

7. Use essential oils. Lavender, rose, ylang-ylang, chamomile, blue tansy, frankincense and other essential oils can be calming. If you want to encourage waking up and activity during the day, try citrus such as grapefruit, lemon and orange as well as bergamot, jasmine, peppermint and rosemary. Test which scents your loved one responds to. Essential oils also can be used for aromatherapy (we use lavender oil in a diffuser for Dad, but you can also put some on a cotton ball and smell it or mix some with water and spray it in the air). They can be potent, so be sure to use appropriate amounts and dilutions.

8. Give healing touch. Never underestimate the value of a hand or foot massage to relax tense muscles and increase feel-good hormones. When Dad was at the height of sundowning, we prepared a warm footbath with herbs and essential oils and soaked and massaged his feet every evening, which eased him through the transition incredibly well. He has always loved having his head rubbed and scratched, so doing that immediately calms him. He also gets a professional massage once a week, which helps on an ongoing basis. A loving hug can be physically calming and emotionally reassuring for your loved ones, breaking the cycle of anxiety.

9. Try acupuncture. Acupuncture has been used to treat anxiety and depression for many generations and is increasingly being accepted by Western medicine. I started taking my dad to acupuncture several years ago to help with grief, depression and anxiety, and have been pleased at how the sessions relax him. They start with a short massage to calm him (very important), and he generally sleeps through the treatment. Talk with your loved one's doctor about this option, and find an acupuncturist who understands dementia.

10. Use herbs, supplements and medications wisely. Ask the doctor about medications, such as antianxiety drugs and antidepressants that may help with symptoms. Be sure to ask about and monitor possible side effects that are too often incompatible with dementia (a geriatric psychiatrist is an excellent resource). Also consider and ask about herbs and supplements, such as lemon balm, valerian, chamomile, kava and holy basil. There are many supplements that claim to be calming and stress-reducing, including melatonin, magnesium, and B, C and E vitamins. Keep in mind that a brain with dementia may react differently to certain treatments.

Managing sundown syndrome requires creativity, flexibility, empathy and strong observational skills as we try to determine what triggers our loved one and how to address the behaviors. No two people with dementia are exactly alike, so be prepared to test different approaches. Some may not work, but others will, and even a little bit of success can greatly ease your loved one's anxieties, as well as your own stress.

The only thing that helped (and only temporary) was to avoid anything in the afternoon that isn’t a very strict routine.
even a phone call would set my Dad off.

all doctors visits were scheduled for morning. Afternoon was just his coloring books, a little daytime TV...early dinner and hopefully fall asleep watching Ellen.

this did not prevent the sundown syndrome from appearing...just delayed it. Sometimes long enough to get him into bed.

As I read these answers that are expressed so well, I realize how much there is to learn about all types of dementia, including ALZ. Thanks to all who share their experiences with others that don’t know where to turn next.