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My wife will sleep just about the whole day, in spurts of naps of two to three hours at a time. Then she is awake just about the whole night, keeping me up with her. Of course I do not have the chance to sleep during the daytime with all of the chores that need to be done. Is there a way to get her back to a normal day/night schedule. I recall that we went through something like this with one of our children, but that was different and it was a long time ago.


The second problem is associated with the first, in that keeping me awake at night is related to, what I think is hallucinations. She insists that there is someone in our house every night. I have to go around the house and find this imagined person: looking in the closets, under beds, behind curtains, everywhere. After searching, to satisfy her demands, and confirming that there is nobody in the house except the two of us and our dogs. She will say, "You don't believe me." She cannot be convinced that we are alone, I've tried everything I can think of to overcome this, without success. Tried telling her that the dogs would either let us know if there was someone here, or that they would protect us if there was. Told her that I found him and chased him out. Even opened the door and made sure she heard me telling the person to get out and never come back, told her that I saw him driving away. All to no avail.


Any suggestions for a solution?

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Yes. Call your wife's doctor immediately and discuss the fact that dementia has fouled up her circadian rhythm. The Sundowning is agitation related and normally responds well to calming meds like Ativan. The goal here is to get DW on a different sleeping pattern and to keep her agitation at bay, whatever it takes.

I suggest you read this 33 of booklet online about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:

https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

As her condition progressively declines, you need to look into hiring in home care or placing her in Memory Care Assisted Living. Oftentimes, dementia and AD behaviors become too intense to deal with alone at home. Don't become a statistic where you die from stress before she does! Recognize you need help and hire some.

Good luck.
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Fred3202 Apr 2023
Thank you for the response and suggestions. I do have the book you suggest and have been reading it. My son also gave me a book, entitled "The 36 hour day" which is also helpful. I've only been dealing with this for a little over one year. The sun downing events are fairly new, about one month. I was hoping someone who had delt with this imaginary visitor and had dealt with it successfully might pass on a way to overcome the stress it brings on both of us.
The MD has prescribed a calming med this week, my wife has had only three applications of Trazodone with no discernable affect - have been Advised to continue, to give it time. As i noted in another note - I'm my own worse enemy - just do not want to give her up after 69 years. Thank you again, very appreciative.
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The only solution I can come up with is to place her in a facility, there are people awake 24 hours a day.

You cannot continue to live like this, what will happen if you die, what are your plans for her?

I am a planner, I do not like making important decisions in an emergency mode as the decision will not be addressed with facts in hand.

Might be time to get her situated now, you can visit her during the day and get sleep at night, she will not get better, she is on the downward slippery slope of dementia.

Sending support your way.
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Fred3202 Apr 2023
Thank you for the reply and suggestions. Apparently I'm my own worse enemy. My Baby Boomer kids have been telling me the same thing. However, as wrong as it may be, I've hesitated, till now, to even consider memory care. My son and his wife have convinced me, if not for my welfare, for theirs, if the time should come when I'm not round to do what I'm currently handling. So...this weekend we are beginning a search for suitable facilities, that I approve, to put on a list for them to select from when the time comes. So a plan is in place. Wills, POA, etc. are in place, have been for a long time. I just want to delay the placement process as long as possible, but I would like to alleviate some of the problems, if possible - and there have been some good suggestions to try. Thanks again for your support.
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To help with sleep patterns, you can also come up with activities for her during the day to keep her awake and burn mental and physical energy. We had my Aunt fold a large stack of kitchen towels, sort poker chips by color and sort a large bag of plastic utensils. If appropriate, we also had her cut up vegetables. She liked to look at cat books and was willing to read out loud to us. She watched DVDs with the closed captions on so she could read the dialogue. Your wife will have abilities and preferences so just keep working on finding what she is willing to do. We were able to take her off Tylenol PM for a long time after we started the "activity" routine.

At the predictable sundowning time, we would turn on all the lights where she was (and walk paths to bathroom and kitchen). We'd take her out to the mailbox, play a game with her (and not get hung up with the rules), etc.

I agree that the anxiety and paranoia can be discussed with her doc regarding meds. Her dementia prevents her from being able to bring herself to a calm mental state on her own due to her broken brain. As she loses her abilities of reason and logic, no amount of pandering to searching the house for invaders will convince her, so try redirecting the conversation and distraction through a different activity. It is difficult to "ignore" a LO, but you can try it to see how it goes. Dealing with dementia is all about being flexible and creative problem-solving.

I wish you success in getting her on track so that you can get your rest!
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Fred3202 Apr 2023
Thank you for the suggestions and support. I'll try to come up with something to distract her from the TV, which has become her favorite pastime, and is what occupies her in between daytime naps. She is 87 YO - old movies and TV shows are what she has become addicted to. The MD has prescribed meds that are supposed to calm her and help her sleep at nights, just started it this week - no good results yet. Thank you again for the great suggestions,
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Fred,
Good for you for being willing to check out a place with your children.

Please know that many times, MCs have wait lists. If something were to happen with you, your wife could be left without the proper care. Your children may not be able to step in, 24/7.

Perhaps getting the ball rolling now would be a relief for your children, and for yourself. You could be just a well-rested husband visiting, instead of a worried, sleep-deprived caregiver. 😀
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Why don't you take her to an Adult Daycare Center, where she will be kept awake from all the activities they have going on? They are open 5 days a week and you can keep her there up to 8 hours a day. The center feeds folks breakfast, lunch and a snack, and they always have fun things going on to keep the folks occupied.
That might be worth a try until you can find the right Memory Care facility for her.
Also as already mentioned, yes your wife is now suffering from sun downing. It's so very common with folks that have dementia. I'm hoping the medication her doctor prescribed will be helpful in calming her fears and hallucinations.
God bless you for taking such good care of your wife. Just make sure that you're taking just as good of care of yourself.
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I don't know how this just popped up now in my feed.

I have a few suggestions about managed care and I do hope that you take it seriously.

1) If you would like to, find a place that has both independent living, assisted living and Memory Care. That way, you can stay in the same facility and make it easier for you to visit

2) In my Mom's MC unit, there is a room that is occupied by a husband and wife where the husband is memory-impaired, however, the wife is not. The wife eats with the husband and takes the husband out for trips. The problem is that everyone else on that floor is memory impaired, therefore she basically has no friends other than the caregivers. However, he is a large guy so she always has help available for taking care of him, 24 hours a day.

3) If you decide to stay in your house while your wife is in managed care, please make sure you have hobbies and friendship groups BEFORE she leaves. Because of the loneliness, it is very easy to be a victim of fraud or for you to do something that would breach an ethical boundary.

I wish you well in the next step of your journey for yourself and your wife.

P.S. I second the senior day-care suggestion, if anything just to keep your wife's mind active and to give you a break. It did not stop my Mom from getting up every 1.5-2 hours throughout the night. However, she got a lot of laughter from watching what was going on with the other people and her brain was kept active with all the different activities ("games") that they did.
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Hello. Please ask the doctor to prescribe something else if the trazadone is not working or increase the dosage.
It does not work for a lot of people and doesn’t put them in a deep sleep.
Look up Lunesta or something like that. We give 3mg to my father and it works and no grogginess.
Dr may say the it makes them a fall risk but I think they have to say that and that they’re is low risk of that. Worth a try.

Wish you luck in your journey friend.
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Hi Fred, you have received good suggestions so far regarding meds, daycare and placement as long-term solutions.

In the meantime, my suggestion is for how respond to her claim that someone is in the house. Have you tried agreeing with her? Tell her yes, your son / daughter in law / a friend / relative is visiting and is doing something (make up an activity) in whatever room your wife thinks the intruder is in. If she asks to see the visitor, just say yes she can in the morning or later. Right now, the visitor is going to sleep / take a shower / doing something.

Maybe you can also tell her the intruder is actually a police officer you called earlier to come guard the house for you while you and your wife sleep. The officer is going around the house to make sure there's no intruder.

Saying yes and agreeing with her might calm her anxiety down. Instead of "no", change it to "yes later."

Good luck to you.
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