How to deal with sundowning that just got worse?

Here is a bit of advice on Sundowning copied from my book "Dementia Care Companion"

I hope it helps.

Sundowning and Nighttime Issues
Many of the symptoms of dementia tend to get worse late in the day and toward the evening. During the day the patient might be able to go about their life without too much difficulty, while in late afternoon or evening they may experience increased confusion, restlessness, and anxiety. This is known as sundowning because the confusion tends to intensify during the dusk hours.
Sundowning occurs mostly in the middle and late stages of dementia. The compounding loss of brain cells over time makes it harder for the brain to process complex visual stimuli, such as the dimming ambient light and the lengthening shadows at dusk. Destruction of neurons in the brain also disrupts the body’s internal clock, which regulates night and day cycles (circadian rhythms) and related physiological processes. The result is a variety of sleep disorders that reach well past dusk and into the night.
Most elderly people do not enjoy a continuous eight hours of sleep and may wake up several times during the night. For those suffering from dementia, these sleep breaks can be accompanied with confusion of time and place, restlessness, and other behavior disorders. For example, the patient may wake up in the middle of the night, get dressed, and leave home, believing that it is time to go to work.

Improve the Living Environment
·      Provide adequate lighting in the patient’s living environment. Dim light makes it harder to see things, leading to confusion and anxiety.
·      At the end of the day before it gets dark outside, draw the curtains and turn on the lights to make it easier for the patient to transition from day to night.
·      Ensure a safe sleeping environment. Equip the patient’s room for comfort and safety, including comfortable temperature, nightlight, and closed and locked windows.
·      Install safety features to alert you if the patient leaves their room. You can use motion detectors, baby monitors, or similar devices.
·      Pay attention to nighttime dangers. The patient may leave home in the middle of the night and not be able to find their way back. Or they may go into the kitchen, turn on the stove, and leave.
Refine Daily Routines
·      Organize daily routines with a natural progression from morning to noon, through the dusk hours, and into the night. By the time you help the patient to bed, they should be primed and ready for a good night’s sleep.
·      Schedule adequate physical activity during the day and prevent long naps. Long naps during the day translate to difficulty sleeping at night.
·      Keep dinners light, while lunches can be more filling.
·      Avoid coffee, tea, soda, sweets, and alcohol in the evening.
·      Limit sensory stimuli during nighttime. Watch out for loud TV, noisy children, and lengthy visits from friends and relatives.

Reduce Physical and Mental Distress
·      Watch for signs of physical and mental distress. Hunger or thirst, uncomfortable ambient temperature, fever, constipation, itching, and infection can disrupt the patient’s sleep.
·      Do not resort to force to put the patient to bed. Restraining the patient in any way and using force will make the situation worse and lead to more anxiety and even aggression.
·      Speak gently and make the patient feel safe. Say things like: “Everything is fine,” or “Don’t worry, I will stay with you.”
·      If the patient suffers from sleep apnea (a sleep disorder in which breathing stops repeatedly during sleep), consult with your doctor.

Cheeky79: Unfortunately you may have to consider managed care facility living for your husband where he would have a whole team of caregivers as his sole caregiver, you, is exhausted.

My mother (97) had sundowning that was atrocious. It would go on for over 2 hours and could erupt at any time of the night. Her anxiety was next-level.

The first thing I did was stop the MiraLax. Within 2 months, 80% of the sundowning had stopped. (This was 2020.)

I replaced the MiraLax with Milk of Magnesia and it's been a lifesaver. I give it to her when she hasn't pooped in a couple of days and it never fails.

Because she no longer swallows pills or capsules easily, I use a liquid magnesium spray called "Calm" which I apply to her lower back and her lower legs.

For those rare nights she is still unable to get quiet, I'll give her a melatonin gummy.

I also have Ativan which I hardly ever use - and then only a squirt in her mouth - because it wrecks her mobility.

When having early onset Alzheimer's, how does one qualify for hospice care under medicare? -Im going through this horrible disease with my husband as well. Im overwhelmed and had to quit my job to take care of him. It's heartbreaking how there isnt any support health wise and financially.

Talk to the doctor about medications to ease his anxiety.

Get a caregiver/aide to come in a couple days a week to help, so you can take a break. You need self care.

Medications may help him to calm down and sleep at nights.

I had to move out of the bedroom I shared with my husband, and started sleeping in the spare bedroom a couple years ago. He would keep me up at night and I find that he yells for my help when he sees me, but if I am out of sight, he is quiet and calm (well, sometimes).

In my case, my husband does not have a deteriorating condition, but suffered vascular dementia as a result of a massive stroke 9 years ago, so he has actually shown progressively increased cognition over the years - although to a very small degree. And is otherwise a healthy 63 year old. So I'm not dealing with a decline.

It is so sad to watch your loved one go through this. I wish you well.

You sound like you need help. Think about placing your husband in a memory care facility nearby. You can visit him and have time to yourself. Sorry you're having a tough time. You must be very torn apart? Even though you are still young, this situation is not sustainable. You are very dedicated, but think about the future before your husband's health become more dire.

When Mom's sundowning got bad we gave her 400 mg of magnesium glycinate.

I would say we got maybe 80% improvement. It has been so long ago (Mom had alzheimers for close to 20 years) we may have staggered the two pills. We may have also given 1 ea 200 mg magnesium glycinate at 2:00 and 1ea 200 mg of magnesium glycinate at 6:00 pm. Timing is something that you may have to experiment with. I believe there was a period when we
gave her both pills 2 each of 200 mg magnesium glycinate at 4:00 pm. Like I said, I'd experiment on the timing.

With the magnesium glycinate we got:

--about 80% improvement with sundowning
--she slept through the night
--it helped with regularity (make sure to use the glycinate version to prevent loose stools)
--she wasn't all drugged out
--it lessened anxiety, I'd say we got around 80% improvement

We had Mom on the magnesium glycinate for many, many, many years and specifically started it for the sundowning.

My wife's sundowning has gotten worse the past couple of months. Her Neurologist controls her Quitepine/Seroquel prescription. I contacted his office and and he called back and did a phone visit with us. Based on that, he increased her dosage by 25mg. That has made a huge difference. She's able to stay in bed most of the night and she hasn't cussed me out in a week now. She's still tormented by her delusions, but it's better. The way the Dr wrote the new script I have some flexibility to add another 25mg if needed. But, I'll hold off doing that until she starts cussing me again as she wanders through the house at night.

The point here is: call his doctor, PCP, Neurologist or who ever.

Time to speak to his doc, Cheeky. If you can't get a handle on some of this then taking care of him at home isn't sustainable; it would pass then into a 24/7 job requiring a team of caregivers in shifts. Not doable by one person.

So speak to the doc. Make an appointment. Tell the doc about the extreme agitation and upset that is really keeping his poor mind in a state of torment and the home in chaos. Tell him that if you cannot find some medication that could work you may not be able to go on. There ARE medications that can bring some peace in many cases. Time to try them!

I wish you the best and hope you'll update.

You can consider hiring aids from an agency to give you breaks throughout the week or in the evenings. It will be less expensive that MC right now.

Your husband will most likely go through a period of rejection or adjustment before he acclimates to a new person in the house. You can tell him the helper is there for you.

Care.com or browser search for ""caregiving agencies near me"

Ativan helped my mother quite a bit with the agitation she experienced with Sundowning. Speak to your DHs doctor about calming meds and sleep meds as well. You can also ask for a hospice referral from the doctor. Have you considered placing him in Memory Care Assisted Living?