How to handle progressive Sundowner's?

This is so familiar. When I was staying with my Mom while my Dad was in hospital two years ago when he broke his neck in a fall, I was made aware of her sundowning. Later, I found out from my Dad that it had been going on for a while (he never told me). It was a shock. The stress of my Dad and her not sleeping well I am sure contributed to her sundowning. The first episode I saw was the worst - she didn't know who I was, she thought her sisters were her daughters, she believed her parents were still alive, she didn't know where my father was, she wasn't even sure they were married....it was just awful. Other episodes were just confusion, usually looking for her parents or wondering where people were, they were just in the house for dinner (they weren't) and they left and didn't say goodbye. It's sad and upsetting to say the least.

What I tell my Dad to do now is to keep the house during the day as bright as possible. Leave lights on in the living room, theirs's is usually dark during the day because of the side of the street they are on. When she starts with her confusion, try not to yell (ha), stay calm and just play along but try to divert her attention to something else. Watch a favorite show, try to suggest she do a puzzle, something. I don't know if that works, I just think he's exhausted and sad and doesn't know what to do. Neither do I.

I really feel that getting good rest and good nutrition would be key for her but she gets neither. She refuses to sleep upstairs in the bedroom. She HAS to stay downstairs so she can keep an eye on things. So, all night she snoozes but has to check the boiler, the outside lights, the doors....all night long. My Dad told me she doesn't even change her clothes to put on a nightgown "just in case". The doctors are really no help either.

I'm afraid it will not go away, you can check on sites to try to get suggestions as to how to help, but it's really trial and error. She's also on Lorazepam, I don't think that it's helping much. Sometimes I think a little bit of a tranquilizer would help get her some rest, but I'm more afraid of her falling so that is not an option. I just feel so bad for their brains, how awful this must be.

I wish you much good luck and prayers to you and your LO during these difficult times.

Ah, sundowning. Each person acts differently and no solution works every time. My mom is currently crying nonstop for 1 to 2 hours during her sundowning. Everyday I get this. She’s on Lorazepam several doses a day, but it doesn’t help until bedtime when she’s ready to drift off. There’s no perfect solution—I’ve tried them all. I dread, dread, dread that time of the day, but there’s nothing I can do except watch the clock and pray that bedtime comes fast. It is so very difficult for your LO and for you.

Imho, it's very tough. You should never respond in kind to her questions - "I just told you that" since they cannot help their illness. Prayers sent.

I feel your frustration. I have the same situation with my husband, at least for the past 4 years. His sundowning starts at mid afternoon and lasts until he goes to bed about 8pm. He wants to call his mom, and go home, and other behavior including talking to people who are not there, etc., etc. . If I tell him he is already home, he'll say he means the other home. I tell him there is no other home and for the moment he is OK, but 5 min later wants to go home. Lately, he wants to home in the morning. Trying to reason or explain won't work - he forgets what I said anyway. So sometimes I say 'can we go tomorrow instead' and make up a reason why (weather, I'm too busy to drive him right now, let's have dinner first, etc.). Some days are milder sundowning than others...I don't know why, perhaps he is more tired or bored. Sometimes a distraction or redirect works - going for a drive (going for a walk would be nice but he can't walk very well), watching TV, phoning a relative to have a chat, or suggesting we take a nap together first. I've accepted that sundowning (part of a bigger issue of dementia with him) is a part of our daily lives; unfortunately, it doesn't get better. We just have to be better at managing it (and, more importantly, our own stress level). Sometimes by the end of the day, I'm mentally and physically exhausted though. I wish you the best - stay as calm as you can.

My answer to "I want to go home or "where will I sleep tonight?" Even though my mom had lived in the house 40 years. I'd say Look around mom we moved all your things here. Or what do you need? I'd point out her furniture that hadn't changed in years. Often she would realize & settle down. But often at dusk or just before, I would turn on lots of lights. Sometimes I would pull out a crossword puzzle & try & get her to sit beside me and do it. I had some luck with playing old songs and getting her to sing along- she knew all the words. Some nights nothing worked.

The repeated questions might continue a long time or just periodically. In order to save your sanity.....do not give detailed answers, answer in a mild tone, never say I just told you, stay calm and not angry. Remember it’s because the brain is broken. I handle it with each repeated question as if 10 different people walked in the room one at a time and each asked me the same question. If that occurred I would have no problem answering each one of them. This is how I handled it with Mom years ago and now my husband. Many times you can just say, I don’t know. I will check on that. When he gets upset or confused I respond with, “That’s OK”. I find I say it often throughout the day.

I found cutting out caffeine and cutting down on sugars has been a big help, for him to be calmer. In order to keep things calm I do not try to teach him/give him instructions. They can not learn or understand and it causes anger and frustration.
Less words from me is a big help for both of us.

Personally I am not a proponent of medication, however for the short term (sometimes these "behaviors" do pass, but there's no time line - it is different for each person) you might want to consider trying some medication.

As usual, the first question is has she been tested for UTI? A culture is better than the dip stick test. Blood work is important too, as it can identify other infections that may be impacting her, or imbalances in her system.

I was a skeptic about the UTIs when I first joined the forum. Mom never had the traditional sun-downing. She lived alone until we had to move her to MC (we tried aides, but she refused to let them in.) Months before the move, she DID develop an odd OCD behavior at night, just before bed, where she would check the door lock, side-lights, dishwasher and LR. We had a camera at the front door, so this became obvious as it progressed. It started out with a couple of rounds checking these things a few nights/week and eventually became a nightly marathon, lasting 1 - 1.5 HOURS! Once in MC, this seemed to stop. The only time she had "normal" sun-downing was when she got her first UTI at MC. Oh boy! She was out of control every evening and it was a weekend, so there was nothing we could do! I became a believer in UTIs and odd behavior (subsequent UTIs showed up as night time bed wetting - soaking!)

Along with the antibiotic, she got an Rx for an anti-anxiety. While these do have a fall risk, the mildest dose was sufficient and she NEVER fell while on it. It worked first time, every time, took effect in about 10-15 m and doesn't need to be weaned off when no longer needed. It was just enough to take the "edge" off and keep her calm. She was NOT doped up with it.

It may take some trial with medications. What works great for some doesn't work for others. Explain this to her PCP when you have the blood and urine tests done, and see if they have any suggestions for something that might help.

(While setting boundaries may work for some things, it isn't likely to help here. Even trying to distract or redirect doesn't always work. These techniques work for some dementia behaviors, but sun-downing is in a class all by itself!)

This is tough. Sundowner's is different for each person. There is no one solution. Unfortunately, it is likely to continue in the future. With my wife now 12 years into Alzheimer's I have built up a lot of experience but no solutions. Try some of these suggestions:
1. Distraction is worth a try, but the repetitive questions may simply continue.
2. In expressing the desire to "go home" your LO is trying to say they want to know where they are, how they can regain their sense of location and purpose. You can try to reassure them with talking about their present environment, both in the house and outside. You can ask questions about what they are missing or trying to find out what they are thinking and feeling.
3. Try to be as calm and relaxed as possible. If you become stressed your LO will become even more stressed.
4. Set boundaries--difficult to say what boundaries: times when you are in bed with door locked? times when you are out?
5. Get help from agency caregivers at certain times, perhaps in the evening when the sundowning is usually happening.
6. Try to find a rhythm of life that your loved one accepts with a set routine each day about when to get up, eat, rest, etc. For example, does it work better for your loved one to get up early or later? How much sleep do they need? Keep a notebook of sleep patterns (day and night) and what impact this has on the sundowning. As dementia progresses, sleep patterns may change.
7. Look after yourself. If you try to do this on your own, you will at some time burn out. When others around you are unsupportive, this has consequences both for you and for them. Perhaps outside counselling for the two of you would help. Involve friends and neighbors.
8. You might find it worth reading Chapter 4 about repetition in Judith London's "Connecting the Dots: Breakthrough in Communication as Alzheimer's Advances" (New Haringer Publications, 2009). She urges you try to find out what lies beneath the repetition--what is the person trying to say? Ask questions and see if you can uncover the hidden meaning.

I hope this is helpful.

Best wishes and prayers.