Is going to bed at 1PM considered Sundowners?

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Dad is almost 95 and lived alone until his stroke on May 1st. I was in the process of getting him in home help a couple of days a week until he became adjusted and then I would add more days. The stroke facilitated 24hr in home care. The stroke was mild, but the dementia seems worse. He says his back hurts and insists on going upstairs to his bed around 1 PM. He gets totally undressed and will stay in bed the rest of the day. The aides I had seemed to allow this. He waited for Saturday to come to go to 4PM Mass, but mostly he says he isn't up to going. He knew yesterday was church, so at 1 AM he was up and dressed for church! The new aide talked him into going back to bed for a few hours. At 2 PM, he insisted it was time for church. His neighbor picks him up at 3:30. No amount of talking to him convinces it is too early, then he gets nasty. Is going to bed in the afternoon considered Sundowners?

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Dad goes up to his room. First it was his back hurting so he had to rest. Offered Tylenol he refused. Does he sleep while in bed? No, he just lies there naked. No amount of coaxing will bring him down to eat. 1 AM is the magic hour. He wants to eat. The aide took food upstairs to him. No, not hungry. Lately around 1 PM states that he needs to go upstairs due to his foot hurting. Refuses Tylenol. If the aide doesn't take him up, he sits on the chair lift until they eventually take him up. Doc today said he's no longer suitable to stay at home. He could give him meds, but they are mind altering. It will put him to sleep and he'll sleep all night, but it won't solve the problem of going upstairs so early. He is adamant about going. No, he never napped before and he doesn't sleep now, he just lies there for hours. Waiting for his elder care attorney to return from vacation and we'll discuss options. For those who remember me, I have the son who has a mortgage on dad's house, so that is a problem as well. I never argue with dad, I try to placate him. The next week should tell what happens.
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If your Dad's stroke was in May, it may take six or more months for him to get some sibilance of normalcy. My Mother, 104 yo goes in and out of these symptoms that you describe. If we tell her she has a doctor's appointment or that a company is coming, she often will get up before daylight. She always naps in the afternoon after lunch. This is common in the elderly. My grandmothers did it too. The trick is to get them up before dinner & get them cleaned up to come to the table and keep them up for a few hours. Allow him to go back to bed any time after 9 PM. This keeps the days and nights straight. Insist that the caregivers follow this schedule and don't allow them to take the easy way out. Mother's caregiver was letting her sleep most of the day because it was easy for her until I put my foot down. Now we have a schedule. It's like a babysitter, you are the boss so set the rules.
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When my late mother was still alive and living alone in her home (her DEMAND), she would get agitated over, e.g. incoming mail. She just couldn't handle it anymore, albeit easy as it was. However, did she ask for help? NOT!
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Regardless of the source of the dementia, dementia is another planet. You have to join them there. They aren't coming to your planet. You have to say and do whatever it takes to keep them safe and calm. And I mean whatever it takes.

There will come a point where you will need to go look at dementia care facilities. The nice words for it are "memory care". These places are amazing. They offer a different program than a standard nursing home where the people are just not trained to deal with dementia, especially in the advancing stages.

I have found that getting mom to see a geriatric specialist made a HUGE difference in her care. He caught onto things immediately that her past GPs had missed or ignored. He straightened out her meds and took some away from her. We had her meds put in the lockbox service, so she could no longer pick & choose what colored pill she wanted ad-hoc. A nurse delivered her meds on time every day which fixed a lot of problems at that time. Mom had been taking whatever, whenever, which means she may or may not have gotten the right things during the day, or had taken too many. So dangerous.

Memory care facilities are built with the advancing dementia patient in mind, and their programs and activities are structured for that. The OT & PT is structured for that. The building is built for that. A lot of times the elder will behave better for "authorities" than us, so they don't have the same issues with the elder that we do. And the facility can handle pretty much anything that comes up. Dementia is full of surprises along the way.

Having my home preserved as my sacred, quiet getaway is so important to maintaining my sanity that I was totally willing to spend every penny there is for mom to be in memory care.
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Yup. Things go haywire at 95. Your dad's inner clock is confused. But you indicated that he lived alone prior to the stroke. Do you know if part of his daily routine was to take a daily nap at 1pm?

A stroke (vascular) escalates dementia. There may have been other 'silent' strokes before and/or after the one you noticed in May. It gets harder to move around at that age, so they don't want to. Then there's arthritis that adds to it - causing pain. Pargirl offered some good suggestions. I did similar redirection with my mom. Otherwise you get into an explanation game that frustrates those involved.
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No matter what it's cause or when it happens or what you want to call it, it's hard to see. You don't want to argue because it's like arguing with a 3 year old, you aren't going to win. I learned a long time ago to go on this journey with them. If they say its time to go to church or work, don't argue and tell them "you haven't worked in 25 years"......redirect them. "Gee, the car is broken and I will have to have it fixed before I can take you" "Jim, is out of town and can't come get you", I will call your boss and tell them you will be late or not in today." Anything to let them know that it will be taken care of. sleep walkers can't be awakened due to violence sometimes. This is kind of like the same thing. You have to redirect them. I didn't quite understand if he lived on his own with 24hr help all the time. I hope so. I know it's nice to have them in their own home but as someone else said, it might be time for him to go somewhere else so that they can let him get up at 2 a.m. or they know how to redirect him better. My mom was a pacer at night before she became wheelchair bound but that's what I loved about her facility. They would let all the pacers (sundowners if you will) to pace the halls. It was great because although it had different hall ways they all lead back to the nurses desk. Anyway, sometimes you just have to go with it and let them do what it is they do. At 95 if my back hurts and I don't want to get up I'm not going to dementia or not. :)) Good Luck and God Bless
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My father also had a stroke, has residual dementia, and lives independently with some assistance. Time has become an abstract concept and so appointments throw him off. He is so worried about missing them that he will get ready hours or even days ahead of time, then will get upset when it doesn't happen until the actual scheduled time. So, we try to take things on a daily basis. He has a calendar with everything written on it for the week, but, at his request, we still talk about the schedule for tomorrow before he goes to bed, first thing in the morning, and even midday, so he knows what to expect. Routine helps keep him on track. Companionship helps. Physical activity - however minimal - and time outdoors help with mood, a feeling of productivity, and a feel for the season. Some days he will go back to bed (usually depending on weather) and he often naps in the afternoon, but he sleeps well at night. In his case, I would consider going back to bed at 1 pm on a regular basis to be a sign of depression.

DavelFM, thanks for the informative article. I like the idea of personalizing care for the dementia patient to allow them to have control over their daily lives and I always look to minimize drugs.
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I do the same thing OzarkOily with my mom who just turned 95. They become very combative with trying to get you to understand the world they live in. I find it easier and less stress to just agree. There are times when I agree that she gets upset because I don't have an opinion. I stay away from the medications and just let her deal with what is going on. My mom's sundowning varies from one day to next as to the time and how long. The information provided by DaveIFM was very helpful and I plan to share it with her caregiver. I just hate that this always happens when my caregiver is not here, I might need to change her hours because my mom is at a more relaxed and sleepy during the time she is here and becomes more active and alert when she leaves. It's just hard from day to day to get a handle on how my mom will react with each day. I could write a book. The doctor tells us me and my husband are doing a great job in taking care of my mom but often reminds us that our health is also important. I send my mom to respire care for a week every other month so that me and my husband can get away or just do nothing. She complains but we know she is in good care. We use the same facility each time. My mom has it good but has no idea that she does even though people constantly tell her how blessed she is. Oh well didn't mean to get off the subject but just wanted to share some things with my Aging care family.
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Thanks everyone for your helpful answers. I was able to get him an appointment with his doctor for tomorrow morning. Hopefully he can either alter his meds or give him something to help. I'm afraid his next step is a facility where there is structure. Will let you know what happens at the appointment.
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Oh, also, just as someone else said...it's their reality. With dementia their perception of reality is skewed. You & I know that its dark outside & not time to go to work....and that they haven't worked for 25 years.....but in their reality, it's light out & they're gonna be late for work. No amount of arguing is going to change their mind because, to them, their reality is right & *you* are the one that's mixed up & confused. It may sound terrible but sometimes you just have to lie to them. I call it "bending reality" so I dont feel bad lying. Anyway, what I mean is, "Oh, hey, Pop, I forgot to tell you your boss called while you were asleep & said there's a power outage at the mill (or wherever he worked) & they haven't been able to restore power so he's wanting everyone to stay home today." Or, in the case of the church issue, "Oh, sorry Dad. I got a call from the rectory & Father Francis (or whomever) is ill & Mass has been delayed a few hours until another priest can come from (insert a nearby town)." By the time he gets to Mass he will probably have forgotten that Father Francis was supposed to be ill & won't question it. If he does, "Oh, well, he was feeling better so he decided to do his own Mass." On the surface lying to them sounds & feels awful but it's actually just going along with their reality & it results in less stress & emotional pain for them...and ultimately you, too.

As for his complaints of pain, the stroke may well have altered his perception of pain. Best you can do there is offer Tylenol or other pain reliever, hot packs or maybe gentle massage of the area.
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