My wife has mid stage dementia and has only had one of these. I didn’t know how to handle it so I called 911 and had them take her to ER for observation.

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Those are great answers! Let me add this:

If the sundowning manifests in a violent manner, particularly if you are not capable of gently controlling her, then you really need to consider whether it's time to look into a secure nursing home -- for your safety and hers.

But if she is NOT violent, please be careful about calling 911. I did the same thing in the beginning with my mother, and discovered that involving the police can lead to involuntary psych admission or having her taken charge of by Adult Protective Services (I was able to prevent these, but the threat was made).

You may NEED that kind of intervention -- but you want it when you're ready, not when some outside authority decides on it for you.

Keep an open mind, though -- the authority might be right.

Even if your wife has not yet shown any tendency to wander, please go ahead and put alarms on your exterior doors, and even some interior doors if she shouldn't be in the kitchen, for example, or if you don't want her to go up or down stairs. You can get very inexpensive stick-up alarms on Amazon -- but please don't trust the adhesive. I affixed mine with lots of clear packing tape, at the TOP of the doors -- hard to see and hard to reach.

Finally: please be aware that even a mild Urinary Tract Infectiion (which is common in the elderly) can wreak havoc on the mind. It seems counterintuitive, but the effect is very powerful, and can cause bizarre, violent behavior. It's vital to diagnose, cure, and prevent UTIs, or she could be presumed more demented than she actually is -- which could lead to needless confinement and over-medication.

All good wishes to you and your wife.
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disgustedtoo Aug 2019
Whenever I read issues like OPs and see the UTI comments, I try to chime in. Early on when I read posts about UTIs causing all kinds of odd behavior and wreaking havoc, I was skeptical. Not anymore.

Our mother lived alone when the dementia started. In the early stages it was okay. One of the things we had done was installed cameras in/outside the main door and downstairs. I can only guess that her nightly behavior (started slow, became every night 1-1.5 hours), which I described as OCD was some kind of sun-downing (check door, dishwasher, LR and repeated over and over and over before bed. She did not continue doing this when we moved her. Although she hounded my YB to take her back to the condo, for the most part she is a quiet person who sits reading the magazines and sale catalogs for hours on end. Enter the dreaded UTI!!! To make matters worse, on a Friday night, no access to the doctor we had then until MONDAY! Their outgoing message gave a number at the hospital to call - USELESS, they could do NOTHING for us.

We had to resort to medication as she would, every later afternoon.early evening, even during the course of the medication, become like a raving mad woman. She insisted she had to get out and go home, that she had guests coming. She would try every door to get out, setting off the alarms. This went on for hours (they called me to come up, like I could do anything about it??) until they finally could get her back in her room with a magazine.

The solution was Lorazepam, the lowest dose. It was just enough to take the edge off and not dope her up. She does NOT get this everyday, only with the UTI. We have it written up 'as needed' - the nice thing about this med (and likely other anti-anxiety meds) is it does NOT take days or longer to build up in the system. First time/every time, within about 10-15 minutes she would calm down. Not too much longer after it would be near bed time so she would go to her room and go to bed.

So, definitely be aware that UTI can and do wreak havoc and it can look like sun-downing. IF it is just plain old sun-downing (no UTI), there are ways to gently distract the person - refocus them onto something they enjoy, redirect them to activities that might keep them occupied. IF these don't work, you could try the anti-anxiety meds.

Typically sun-downing happens later afternoon/early evening, but not everyone is the same. Look for patterns in her sun-downing - same time of day? same trigger(s)? Figure out what activities can distract her and change her focus onto something she likes. Turn on lots of lights in the evening - they suspect it has something to do with the time of day (mom's 'OCD' was later in the evening, like 830, 900, 930 - just before bed) and if so, having more light on helps to simulate daytime - can't say if this works or not.

What not to do - don't try correcting her if she is saying/doing odd things. So long as it isn't a danger to her or you, remain calm and try to redirect her. Never argue or try to reason with dementia - you won't win! Physical restraint should only be used if she might get hurt (or cause hurt.)

Make a list of all the things she likes to do, TV shows, reading, eating anything special, playing cards, etc and try to get her interested in one (or more if necessary) activity (try them all if you have to) - gently coax her to join you in one of the activities.

In your spare time, look up all you can about dementia - they typically list symptoms and how to deal with them. Not everyone experiences them all and not everyone follows the same time patterns, but the information is useful for you.
Try to anticipate it. Make sure she's hydrated and rested. Provide a snack like a cookie or two or some fruit, whatever she'd enjoy. Cut down on the stimulation around your wife (TV, radio, visitors, etc.). If there's something she particularly enjoys incorporate that as long as it isn't too stimulating or frustrating. Keep yourself calm and relaxed, nervousness and anxiety radiate off people and your wife could pick up on that.

You'll come to learn what works and what doesn't and if you come across something that is very helpful keep it in your back pocket and only bring it out when all else fails. You don't want your wife to associate it with stress and anxiety. For example, a woman I knew loved ice cream so her family would give her ice cream to soothe her in anticipation of sundowning. It helped. But daily ice cream treats became habit and un-special and just part of the routine. It ceased to help with her agitation anymore. Once that happened the woman's daughter only brought out ice cream once in a while. It became a special treat again.

If you can begin to anticipate the sundowning you may be able to bring her through it through soothing words, touch, and a calming presence. You're not trying to prevent it necessarily, just get your wife through it.
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Every individual is different. When my DH had sundowners it was him not recognizing me. First, I decided before that started that it was ok if he didn't know who I was. The way I handled it was to turn on the lights and stand in front of him until he could focus on me and know who I was. Believe it or not, just giving him the time to look at me worked most of the time.
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My mother has dementia and had sundowning episodes practically everyday for two years until recently becoming bedridden and even today she mentioned something about walking home. It was always the same. She would want to go home and thought she could walk there although her house was 30 miles away from mine. Sometimes she would want me to drive her there and would be very demanding and angry. One time during an episode she started hitting on the glass panes of my door and I was afraid she would break the glass and hurt herself. She had also picked up a shoe and was threatening me with it. I called 911 too because I didn't know what else to do. They took her to the ER and ran a few tests which were all negative. I called her doctor and he put her on risperidone which helped tremendously. She still had the episodes but was nicer and usually a car ride and an ice cream cone were a good distraction. Best of luck to you. I used to dread this time everyday. Sundowning is very frustrating and hard to deal with in our loved ones with dementia.
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Check out the Alzheimer's Reading Room on the Internet by Bob DeMarco. This site has a wealth of information and personal experiences that helped my family with my dad‘s journey into dementia. Don’t count on doctors to help you. Investigate yourself. Lots of information out there on this site and others so many people going through the same thing you are trust me. Patience kindness and redirecting. Prayers for you and your wife.
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try using a good lavender essential oil roll-on. We use it on my mom who has had some bad melt-downs... usually about 3:30-4pm for us, if we use the lavender roll-on -swipe up and down the bottom of the feet as that's the most absorbable skin on the body - and at the base of the big toes. Within 15-20 min you should see a noticeable difference. You can also apply to pulse points on wrists and across back of neck. We also apply it before bed to help her sleep. We've used it for almost 5 years and it really helps - my sister and I use it as well - I use it every night to help me sleep better
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MaryKathleen Aug 2019
Be careful. Two of my family members are allergic to Lavender.
For five years, every single day, I walked mom in the park and she could go over a quarter of a mile. That really calmed her down. She eventually needed more complex walkers, but I kept her going as long as I could. Raining was no problem--I just took her to an enclosed public parking lot and did the walk there. I forgot how many steps it takes to equate a quarter of a mile, but I counted the average length she could tolerate and count every step while in the enclosed parking lot. Be mindful it took over a 1-1/2 years to build her up so she could a quarter of a mile.

Basically, I kept her up during the day so she slept at night. I also gave her coffee during the morning which helped keep her up and going daytime. Despite having Alzheimer's disease, sundowning was not a problem with me. There were rare instances she got an attack of "crazies" at night -- I gave her simple cough syrup with dexamethoraphan cough suppressant. She takes a teaspoon of that she's asleep within a half hour. That cough suppressant was enough to get her to sleep so she never had a single narcotic...her whole life.

BE SURE YOU HAVE A BED ALARM! I use a floor mat. As soon as she steps on it it would go off loud. I also employed a fall mat. Most falls happen while trying to get out of bed. This prevents serious injury. Do not assume she won't get up because he might. KEEP DOOR ALARMS ON!

You can buy good quality floor alarms and fall mat on Amazon. They are worth every cent.

Mom is now bedridden at the final stages of Alzheimer's with a feeding tube.
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You can't talk any sense to a person with dementia when they are sundowning, the only you'll accomplish is to anger them and bring a whole lot of stress on yourself. Your reality and her's/his are not the same. Yours don't matter. Hers does. The best thing to do is to Join Her Journey. If she says the sky is red, it's red! Join her journey and slow re-direct her to something else. Calling 911 won't help the situation, you can easily handle it. Yes, you can do it :)
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Obviously, everyone is different but, for my Mom, the worst time was the few hours before, during and after dinner. I found that distracting her by just talking (about anything) and/or putting on some of her favorite music (old hymns) would settle her down faster than anything else. She was still very confused but it calmed her down. I never had to worry about her wandering so I'm very thankful for that.
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Dont take it personally. Humor and lots of prayer.
Distractions put on their favorite music, tv show, giving anxiety and night meds earlier.
It is impossible at times and we are thin on patience. I would not be able to have done it without Grace.
A good cry releases the stress and it probably time for a break before the insanity it all consumed you.
Great question.
That's my 2 cents..
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