Follow
Share

My husband is 71 and was diagnosed in 2019 with “cognitive impairment”- the neurologist suggested further consult/testing to determine type of dementia. My husband would not go any further-and believes he is just fine. In the past 3 months I’ve noticed more short and long term memory loss, difficulty with his words, dates, and even telling time. Sometimes I must remind him of the names of our children and granddaughter. He has some anxiety and agitation. He has a 20 year history of a-fib and sleep apnea which I feel could have initiated the dementia. I am retired and this COVID thing has been exhausting. Any suggestions on getting at least a full night sleep? I try to keep him up at least to 8:00pm.

My mom (89) has mild cognitive decline but she does this. She has never been a good sleeper and she takes pride in only having to sleep a few hours a night. She will wake up at 3AM to go to the bathroom and instead of going back to bed, she'll make the conscious decision to get dressed and start her day instead.

Well, she needs more than that; it's not unusual for her to fall asleep as soon as she sits down in her recliner right after breakfast. Sometimes she'll even fall asleep at the breakfast table! I'll wake her up and suggest she go in and lay down for a while but she won't; She'll go in, sit down in her recliner, turn her TV up to blaring so no one in the house can think straight, pick up a book and start reading, then fall asleep in minutes.

When she wakes up she's disoriented and not sure what time it is so she wants to start her day again. I have to lock her meds up now because I'm afraid she'll try to take them in the middle of the night and again at breakfast or forget she took them at breakfast and take them again in the middle of the morning.

I lived through the night time wanderings with my dad. We had to put locks on the cabinets and eventually on all the external doors. We forgot about the bulkhead, and he went down the cellar stairs "to fix the furnace" and went out through the bulkhead at 4:00am. It was 10 degrees out in February and he had no shoes on and only a bathrobe. We found him standing in the snow, just a few yards from the edge, looking out over the frozen pond. My husband saw the motion sensor lights were on when he woke up to use the bathroom.

My recommendation is to put locks and alarms on the doors and cabinets now, before you think you need them. Use your imagination to think of all the things that could possibly happen. I would do it sooner rather than later.
Helpful Answer (1)
Reply to Seaglas415
Report

Did you try giving him melatonin before he goes to sleep. This is a safe and natural sleep aid with no side affects. You will have to experiment with the dosage. Start with 5 mgms if that doesn’t work you can gradually increase it up to 10 mgms. You can also go to bed earlier so that you get more sleep.
Helpful Answer (0)
Reply to JPC2842
Report

Imho, his dementia IN CONJUNCTION with his sleep apnea have no doubt caused his circadian rhythm to be disturbed.
Helpful Answer (0)
Reply to Llamalover47
Report

While you can and he believes he's competent complete forms for the future. The first prescription we got for Aricept prompted our Pharmacist (who've known for years) to get us both to do the paper work so our children and/or family would know what we wanted.

We got wills updated, pre-bought cremation for us both etc. My husband takes his clothes off and on throughout the day. If we wants to sleep in his soft pants or jeans, I'm not arguing. I simply have him remove his belt. I also give him Melatonin and we stay up together - I push for 10:00 pm. It takes me at least two hours to unwind and get to sleep.

Now, he's getting up way early but he jut sits in his recliner - although I imagine he will wander. I have locks to activate when that happens. I also have a Smart Watch from Verizon which will track him using I Phone.

Make sure he is using his CPAP, we have dark curtains so he doesn't wake at dawn. We used Tylenol PM for 18 months but he wanted me to increase it to 3 tablets. So I went to Melatonin - he takes 10mg. We also cuddle while we watch TV which seems to calm him down.

The doctor has him on Trazadone at night. Warm milk has helped, soothing music, and we do use a white noise machine. We also take an afternoon nap together, for 45 minutes approx.

I can't say I'm the best care giver, but I'm doing my best and that is what I am responsible for (my best). Take care and stay safe.
Helpful Answer (3)
Reply to LNReason
Report
juliea4cm Apr 18, 2021
I was told by a doctor that Tylenol pm is very bad. Only use the regular one.
(0)
Report
If you find out, please let me know! God bless you!
Helpful Answer (1)
Reply to purplebadger
Report

DonnaMaria, I can empathize. My husband goes to bed at 4pm. He is ready to start his day at about 11 pm. I'm ready to sleep at 11pm. There is no way to convince him that darkness equals night-time and he should be asleep. When he gets up he goes into the kitchen and makes toast and coffee. Most of the time he will then come back to bed. I turn the TV to the Family Entertainment channel and go sleep in another room. My DH will stay in bed until morning wacthing TV . And I can get about 6 hrs.
I often take a nap when his caregiver is here. Until your husband goes into MC, you will need to sleepwhen ever you can. Sending you a big hug, because it's a rocky journey we're on.
Helpful Answer (4)
Reply to Maple3044
Report

I would speak to a doctor to see if something can make him sleep through the night. And why are you keeping him up only until 8 p.m. -- make it more like l0 p.m. You have to have fest and sleep and taking care of him with this behavior will get worse and worse as time goes by. Either consider a caretaker or placing him. He is slowly killing you and that must not happen.
Helpful Answer (4)
Reply to Riley2166
Report
purplebadger Apr 16, 2021
Preach! 😊
(0)
Report
My father did this. Once he went to bed by 9pm, woke up at 11pm, dressed, shaved and drove downtown to an appointment scheduled for noon the next day. It never occurred to him during that time to wonder why it was dark outside. He did wonder why the door to the place was locked. A security guard found him but didn't bother to call anyone or make sure he got back home safely, which he thankfully did. There were also times he had an appointment at 10 am but was up and ready at 4am. It was due to his anxiety about being late. I have no good answers except maybe alleviate his anxiety (put clothes out the night before?) as best you can. An anxiety med might help, melatonin might help. Time is one of those areas that becomes a struggle with dementia. You can set all kinds of clocks but at some point the understanding of what it means disappears. I encourage you to get a copy of "The 36-Hour Day". There is a section on restlessness and anxiety. This book is full of useful suggestions for coping.
Helpful Answer (5)
Reply to Invisible
Report
donnamarie58 Apr 16, 2021
OMG-are stories are so similar. Although my husband has not yet attempted to leave the house; I am sure it’s only a matter of time. For now, I can redirect him to get undressed and go back to bed. Only to have him up and dressed two hours later. He has a digital dementia clock which shows the day, time, date, and even the time of day; but, he has totally lost the concept of time. Of course, it is worse when he has somewhere to go the next day. Attempting to take one day at a time and just be ready for anything.
(4)
Report
See 1 more reply
Good morning,
I am so sorry you are going through this. Just a little background on my situation. I am 43 years old and my husband is 67. 7 years ago next month he had a massive stroke, with right side weakness, the right upper arm is dead, he uses a hemi-walker, can't speak. He refuses to take his medications and keep his doctors appointments. He had a heart attack in 2018. He is picky with his foods, sleeps all day and has fallen several times. Then in the nights he wakes up like every hour to 2 hours and puts the TV on loud. I am at my wits end. I can't sleep at nights. Getting him to go see a neurologist is like I am trying to move a mountain. It's a roller coaster of emotions for me. We were finally able to get help with aides through Medicaid last November. He got approves for 7 days a week, 11 hours a day. Mostly an aide is there when I am at work. He sometimes refuse to do anything like eating or them changing him. Once I enter the home, it's like his angel(me) comes to his rescue. Once at 1:00am in the morning, the alarm went off and I heard the door opening and I was terrified someone was coming in on us. I rushed to the hallway and it was him going through the door. It's like I will be in a deep sleep but somehow I am tune in to his sounds and calls, which causes me to jump out of my sleep.
Sorry for venting. Caregiving isn't easy. Hang in there and seek all the support & help you can get. You are in my thoughts and prayers.
Helpful Answer (4)
Reply to mandypear
Report

I have the same problem with my husband. I had an alarm system put in and I set it every night before we go to bed. If he opens an outside door, it sets off the alarm. (Before this, he went outside wandering in the middle of the night a few times.) Last week, I started hiding the coffee and putting a lock on the refrigerator doors, so that he can't make breakfast at 2:00 AM. Every night before bed, I remind him that he cannot open the outside doors and he cannot have breakfast before 5:00 AM. Sometimes this helps, but not always. I'll be praying that God will help us both to think of creative solutions to these sometimes overwhelming problems!
Helpful Answer (3)
Reply to WearyJean
Report

Let him do as he pleases.

You can wear hearing aides and if that doesn't work, It's fine for you to sleep in another bedroom.

You also should check the mattress out as it might be time for a new one.

GI've him a 5mg over the counter Melatonin at night or Valerian Root Pill to help him sleep at night.
Helpful Answer (1)
Reply to bevthegreat
Report

My Grandma has Dementia and was getting up at all hours of the morning and I am the care give her living with her at the moment. She has my Godfather, her son who also does a ton of care too. (Am lucky). We put all the clocks to the right time. I did it mostly for my sanity. But it did seem to help. Many of the old clocks did not automatically do daylight savings. The next step was to rain in the heat in the house. The old furnaces where kicking out a massive amount of heat making the house about 75 to 78 at night or day. We had to totally get new wall furnace in to do it. The broken one was from 1954. Because the best sleeping 💤 😴 temperature is 70 to 60. And for elders it is about 70 to 67. Now We set the house temperature not to go over 72 in the day and not to drop below 67 at night. She will get up in the middle of the night about 3 to 7. I am the most scared 😳 about this time of night because she is up and about and I am out pretty a sleep. The other things i do is make water with lemons so during the day she drinks more water. Because at night you need that water to clean your brain. At night during REM our body pushes water across the brain to clean it. Pretty 😎 cool. Another thing I do is I open the drapes. Oh Yes, sunlight; In the morning as much I can get in the house and less at night. This is where her and I have the biggest fighting. She hates it and I know getting Vitamin D is massive for sleep 💤. You need the Vitamin D to make melatonin. The last thing is phone calls, especially telemarketers and scammers. I am a demon 😈 😅 to those people. If I get a person I say that this house is on the National Do not call list. And We don't want you to call here again. And the other thing I do is ask what scam they are running and do you think I am on the the All American 🏈 suckers list. (This has stopped them in their tracks; My girlfriend did this for her Grampa and told me to do it. I do this. Because I don't want my Grandma up between 7am and 10am because these hours are normal sleeping hour for her and she has been sleeping like these for decades. She is 93. Plus I don't want her to fall getting the phone.
Please talk to a doctor about making big changes or change at all with a family members who have dementia; dementia and change is hard on them.
Helpful Answer (4)
Reply to Valk77
Report

When someone has dementia, you have to accept them for what they are, and it can change day to day. And it is exhausing. Some people with dementia don't know they have dementia. Your husband sounds like this type. My mother is too. Start making preparations for possible decline in his condition. If he's a wanderer and leaves the house, he might be a danger to himself. You'll need special alarms and locks. At some point you might have to consider bringing in aides to help. The other option is moving him (or both of you as a couple) to an assisted living facility. Does his doctor have experience with people with dementia? If not, it may be best to change doctors. The doctor should be a good source of information on your options for treatment and care. Also get connected with social services in your area. A social worker can also be a good source of advice. Make sure all of your paperwork is in order with POA for medical and financial decisions, a living will with his medical directives, a will if you have assets, etc. Banks and financial institutions often have their own POA forms and you need to be on file with social security and medicare as someone who can speak on his behalf. All of these things should be done while he is capable of signing legal papers. You may need an attorney to help with the legal documents.
Helpful Answer (2)
Reply to NancyIS
Report
donnamarie58 Apr 16, 2021
Thank you for your kind words and advice. Our situations are similar so I would like to ask how your mother agreed to a POA. Since my husband feels he has no problem he will get very upset when I mention the need for a POA. A few times he has already asked where I have “his” money. We always shop together so he has no need to carry money. He carries a bank card but forgets how to use it. I did put $75 in his wallet which has eased his anxiety. So, how can I have him agree to an meeting with an attorney?
(1)
Report
If you are not able to put him in a care facility, get a night-sitter, put an alarm on the bed, etc., I suggest locking the door to the room he sleeps in. This way, he cannot not wander in or outside the house dangerously and you can determine the a period of time to get some uninterrupted sleep before you get up and unlock the door. The worst case scenario could be if he needs to go to the restroom. You’ll have to pick which battle you want to fight (house on fire 🔥 or cleanup from an accident 💩) because it is an ongoing battle with many phases that you will need to learn about and get creative with. But this requires studying his habits/needs at every phase to avoid upsetting and/or traumatizing him. One thing that you ABSOLUTELY cannot do is continue to loose sleep. That can cause early dementia on you.
Helpful Answer (3)
Reply to TYYoung63
Report

Is this a new thing? If so check into UTI. It happened to my mom a few years back, I had to put her back to bed and change her back into her nightgown. It happened on several occasions over a year. It was very exhausting as I work full-time. I now have mom drink cranberry juice and take a daily cranberry gummy. She sleeps like a baby now. Good luck
Helpful Answer (1)
Reply to Smschaff34
Report
juliea4cm Apr 18, 2021
The best medicine over the counter for UTI is D-Mannose available from Amazon.
(0)
Report
As we get older we need less sleep. Neurological testing: How many tests do you need to have for what you already know? Further any test is not going to point you to a cure. Alzheimer’s Disease never gets better, it only gets worse. It is just a question of how fast and how soon it progresses. You need to make adjustments and be creative to address them. No sooner have you addressed one problem, a new behavioral problem will arise, Take one day at a time. Sometimes problems need time for trying different solutions. Be careful with drugs there are side affects that are not helpful. There is no “magic.”
Helpful Answer (4)
Reply to Ricky6
Report

Ask neurologist for sleep medications or referral to a sleep specialist. There are medications to help people with falling asleep and others to help stay asleep.
Helpful Answer (0)
Reply to Taarna
Report

I have a friend who had that issue with her dad. She eventually got him on an antipsychotic of some sort (can't remember the name) which helped with "sundowning" which is what I think you are describing. If he continues to do this your only other options are a facility OR having someone come in at night as a "sitter". That is what she had to do with her dad until they finally found the right med or him.

You can't sleep with one ear open all the time! If he's in a separate bedroom then you can put in motion detectors and alarm his bed etc, but still you'll be listening for these monitoring devices.

If this were me and it was my husband, not my father... I'd be thinking about maybe moving to a shared apartment in assisted living. They don't charge much for the second person (you) but then you can be together but other people are around in case he starts wandering at night. And I'd choose one that also has a memory care in case he actually needs to go to that instead. It is so much easier to adjust to these places and make friends if you do it earlier rather than later.
Helpful Answer (3)
Reply to marydys
Report

You’re exhausted trying to care for him. You’re literally losing sleep.

Can you hire someone to help out at night?

Have you considered placement for him in a facility?

Best wishes to you.
Helpful Answer (3)
Reply to NeedHelpWithMom
Report

Dementia has ruined the retirement plans of so many young elderly. I certainly can empathize with your plight. All the difficulties you describe him having are typical of dementia. The issue with his waking up at all hours of the night is because his circadian clock has been compromised by the his dementia. My wife had similar symptoms. She would wake up at 2 or 3 AM, get dressed and want to start he day. Of course, if she was awake, I had to be up the same as you describe. She had no regular sleeping pattern. At times she never went to bed and would stay up all night. This can be a serious safety issue if your husband wants to leave the house at 2 AM.

You may be considering OTC sleeping pills for him, but that would be a mistake. ALL OTC sleep aids contain an antihistamine that can have a serious effect on people with dementia. OTCs such as Benadryl, Advil PM, Tylenol PM, ZZZQuil to name a few, all have negative consequences for dementia patients. His PCP may prescribe something like Ambien for sleep, but it's meant for short term use only. The drug trazodone is safer but hasn't been studied for long term effects. So ask his PCP about his sleeplessness and how it's affecting you.

His irregular sleep episodes and your lack of sleep, along with the less serious symptoms you described, can eventually test your caregiving ability. This is a good time to start planning for the possibility of placing him in a care facility. A frightening thought, I know. If that should ever happen, please remember you are still his caregiver, you are still his advocate.
Helpful Answer (11)
Reply to sjplegacy
Report
donnamarie58 Apr 14, 2021
Thank you for your kind words and advice. I am new to the website-it is nice to interact with other caregivers who have experienced what I’m going through right now.
(6)
Report
Ask a Question
Subscribe to
Our Newsletter