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My husband and I have tried everything to help my 90 yr old Alzheimer’s father from wandering and waking every hour at night. His dr. gave us a prescription for Trazadone (did not work). Used soothing music and aromatic scents (diffuser with lavender oil). CBD oil. Meletonine. Exercise him during the day. He does katnap during the morning because he does not sleep at night. We installed a camera to catch him. He wakes up throughout the night seeking the bathroom though he uses depends. Some night he strips himself. He can get to and use his bedside bathroom chair, sometimes he goes back to bed but most times begins to wander. We do not lock him in his room and he opens his bedroom door and wanders through the house turning on lights. When we get up to get him back to bed he says he doesn’t know what he is doing. Since we have a bell on his walker and the camera we hear him and jump up and tend to him and get him clothed (because he sometimes strips himself) take him to the restroom and guide him back to bed till the next hour. He does not have a UTI per doctor. Needless to say we are getting no sleep. We just don’t know what to do and feel this is how it’s going to be for him and us. No problem with him during the day. I know this is called sun downing and did my research but geez who can go on without sleep. In a months time he has slept a 4 hour stretch three times. I also have learned that everyone is different and what works for one person does not for another. I’m trying desperately for what may work for him. Just not there yet. Would appreciate any suggestions.

I would speak with the doctor about the trazadone. There are other medications to try. As with all things such as this, even with chronic mental illness, it is a matter of trying different medications to see what will work. Sometimes it is a cocktail of medications that includes low dose anti depressants. Problem is that things that work with sleep and relaxation can have bad repercussions on ability to safely maneuver in the world without a fall. Speak with the doctor. At the point he or she says we have nothing else to try I think you are going to have to consider placement for your own sanity. I am so sorry you are going through this and it sounds as though you are doing a lot. Be certain he eats meals earlier in the day so the digestive progess is not at work at bedtime. Just so sorry and cannot imagine another answer. I hope others can.
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disgustedtoo Jan 4, 2021
Personally I am not a big fan of medications, but sometimes it is necessary, not only for the person, but for those who care for him/her. We had to use an anti-anxiety with mom when she had her first UTI in MC. It was the lowest dose. Yes, there can be increased falls due to using these medications - the doc who Rxed this refused to renew it. Mom had a few tumbles in her time at MC, but NEVER when on the medication. I had to argue with the doc to get the Rx, only as needed, and for the most part, we didn't need it again. Subsequent UTIs resulted in nighttime bedwetting, not the severe sun-downing she had during the first episode.

If nothing can be found to help him sleep longer periods through the night, safe-guarding everything you can think of in the house would be the first step. Locking up cleaning products, unsafe utensils, etc and ensuring there's no access to outside (keyed deadbolt), removing stove controls and/or locking the controls (microwaves have had this feature a long time, newer stoves, washers, dryers also have these now), etc to protect him (and you) from doing unsafe things, why not just let him wander? Sure, he strips. Doesn't hurt anything. If he eliminates outside the bathroom, that would be a problem, but wandering about the house and turning on lights doesn't hurt anything. It might disturb your sleep, so if that continues to be an issue, trying medications until you find something that works might be the only solution other than finding a place for him.

If nothing else works, it might be best to find a safe place for him. Wandering within MC units may be acceptable, but if he wanders into other's rooms, they will want something (Rx) to help prevent this as well. Thankfully my mother never really had an issue sleeping, so that's about all I can suggest. Sleep is important for all, so hoping you can find a good solution!
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Unfortunately he needs supervision during the night now.

One option, hire a over night caregiver. The carer would be responsible for attending to Dad during the night and getting him back to bed. This will get expensive.

Another option, is one of you changes your sleep schedule and stays up all night, or you alternate. Just as people do with a young baby. It does not make sense for both of you to have your sleep disturbed.

This is one of the situations that for some families leads to a parent being placed in a facility where 24/7 is available.

Can you arrange for a week or two of respite care? That would allow you and your hubby to catch up on your sleep and look at your options for moving forward when well rested. I know I do not make good decisions when I am exhausted.

I can understand why Dad is looking to use the toilet during the night, instead of wetting his Depends. I am quite certain (with no scientific proof) that the part of our unconscious brain that wakes us up during the night to go pee, is very different from the part of our brain that gives us the same message during the day.

Your sleep is important
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There are several main reasons why a family places a LO in a care facility: wandering by the LO; no sleep for the caregiver; safety of the LO and family. Your dad exhibits all three of the reasons. Trazodone is mainly an anti-depressent drug but is often used off label for insomnia. Often, however, trazodone runs its course and is no longer effective for sleep. Other sleep aids may work but the problem is that the part of your dad's brain that controls his circadian clock has been damaged and nothing may work. He doesn't know night from day.

There are so many things that can go wrong with someone living with AD while still at home. Wandering is a critical issue. You've been very creative and have done some things that alert you to his getting up and that seems to work now. However, your alerts are after the fact, meaning he's already up and wandering before you're aware. There's a chance he may want to go outside some night at 3 AM. Locking the exterior doors may seem like the solution but it didn't deter my wife. She went out the window! Obviously this is a safety concern. Another could be that he turns on the stove burners and walks away. This is an issue not just for your LO but for the whole family. My wife turned all the burners of the stove on ignoring a plastic container sitting on one burner. And certainly I don't have to comment on your loss of sleep. Many of your concerns are the premise of the book “The 36 Hour Day”. Although there are only 24 hrs in a day, being a caregiver for someone with AD seems to require much more. The book is considered the bible of caregiving. You can find it at your library or purchase a copy from Amazon.

MC facilities these days can be very attractive, comfortable places. The staff is trained in AD care and certainly you will feel a sense of relief. I would suggest touring some.
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Juneaz99 Jan 3, 2021
Thank you for your information. Very helpful.
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I’d argue against memory care. Staff might be trained to deal with wanderers but have any of you observed how the staff actually handle wanderers at night? I have. My husband was in an MC for two months and I requested to be there at night time on 3 nights at the beginning to observe how staff handled wanderers. Evening shift was VERY skimpy - 2 aides for 15 residents. No need to have more since most residents slept at the time. I observed the caregivers also dozed off too. For wanderers, the aides let them roam in their underwear/diaper and then take them back to the rooms after a while. I sat in the dark observing what happened and took my husband out after two months. There were other egregious problems too that made me decide to take my husband home.

Now, back to the poster’s question. I agree with the suggestion to hire a night caregiver to watch the father so that you and your husband can sleep. It is also MUCH cheaper to keep him at home. Your husband is a saint to share this responsibility during the day because it is a lot of work.

RE medicine, my husband is on Seroquel to treat sundowning and wandering. It works fine so far, but I am ready to switch him to another drug if needed. Keep looking for the right medicine.

Good luck.
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PaulBern Jan 3, 2021
FANTASTIC further details by "Worriedspouse" and I too was VERY upset by the irresponsible conduct and/or lack of action by night staff!
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I was 24/7 for my wife, a super sundowner! The following worked for me but I admit it took a lot out of me and that is: There was only one door to her/our bedroom, I put a small rug up to the door, pillows on the rug, my head right up to the door and of course light blanket for me. Impossible to get out of the room without my "knowing" about the effort to do so.

This solved the wandering problem,

Paul
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AnnReid Jan 3, 2021
I slept on an air mattress on the floor next to my mother’s bed for 9 months, but as I’m sure you know Paul, I didn’t actually “sleep”, gained 60 pounds, became hypertensive, almost divorced, and my oldest kid lost a year of college.

Other than that, the solution worked fine until the day she slipped on the bed sheet and landed on top of me. By the Grace of God, neither of us broke, and there was a place for her at the excellent residential care center 5 minutes from my home, where she lived in well fed supervised socially stimulated comfort for the next 5 1/2 years until peacefully checking out at the age of 95.

Always important to realize that in dementia/multiple issues care, ONE SIZE (or one solution) DOESN’T FIT ALL.
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Im not going to be much help because my 96 yr old Dad is also up all night and he sleeps off and on all day.

He has a Cathiter and gets a UTI every 2-3 months so be thankful your Dad is not Catherized.

My Dad always wants a snack at night like a muffin and milk anywhere from 10 PM to Midnight.

I think it would be safer for him and you would be able to get a little more sleep, if you lock him in his room at night so he can't wonder thru the house.

Tell your Dad every night after he's in bed, that his bedroom door will be locked til in the morning.

At night before bed give him a snack and or you might try some warm milk or warm tea called sleepy time.

Prayers

My Dad gets a 3 mg of Melatonin but he doesn't take any other Sleep Rx's.
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disgustedtoo Jan 4, 2021
Locking someone in their room is likely not a good answer. In the event of emergency, it could be disastrous and could result in legal issues. ANY kind of restraint is discouraged.
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Wandering behavior with dementia is certainly a big problem. You have already been quite resourceful in tackling it. You might find some further helpful suggestions in the book "Dementia and Wandering Behavior"--especially Chapter 7. The authors are Nina M. Silverstein, Gerald Flaherty, Terri Salmons Tobin (published by Springer, 2002). I should think either Amazon or www.abebooks.com would have a copy.

You are quite right that everyone is different. My wife, now 11 years into Alzheimer's and age 84 did wander a little, but she now sleeps well. Everyone is unique. You need to work out shift arrangements so that all caregivers get enough sleep. Getting in someone at home to be a night sitter makes a lot of sense if you can afford it financially. I agree with the advice that carehomes seldom look after wanderers well. Home care make sense, but you do need to look after yourselves, too.

Love and Prayer
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My dad was wandering at night, too. Dr gave him Seroquel. Still does. Dad would get up at night and eat almost a whole loaf of bread. I put "hook" locks on all exterior doors up high. Locked doors w keys going up/down stairs. I started sleeping in the den, so as to keep him out of kitchen. Would give him a few crackers instead. This was a phrase that lasted almost a year. I wish he could wander now. He is wheelchair bound/ bedridden and non verbal now.
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How long are you going to permit sleep deprivation?

Does your H think it's time for a facility for your father?
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I used floor alarms. Once it is stepped on it will sound an alarm. Saved my mom multiple times. He will need 24/7 supervision and I got an electronic fence all around my property. When I accidently fell asleep during the day, the fence prevented my mom from leaving the property. That saved her too.
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It sounds like you’ve tried a lot of good strategies. Another thought is to try keeping him awake more during the day. My uncle would have some nights where he was up most of the night but it seemed to help if he was awake more during the day and if we found activities that would tire him out. It may take a couple of days of waking him (during the day) after he’s taken a short nap, and doing some kind of activity that keeps him awake. It may work to help you get better sleep at night. Good luck💕
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My father sometimes wanders now, and was waking several times a nite like yours. Since medical marijuana is legal in this state, our doc suggested we try equal parts CBD and indica heavy THC. It’s in capsule form and he takes two at bedtime. My dad has 24/7 help so is safe getting in and out of bed or chairs as needed. He now sleeps 4-5 hours at a time which has helped him and his caregivers. The only side effect is he gets hungry, but b/c he has cancer too, that’s been a welcomed event. The CBD is calming as well, so Dad isn’t worried about an event he’s missing or stressing over something else to the point he can’t sleep. We also had Dad stay up more in the daytime and exercise, but his nites were restless. For us, this has been a great experience. Good luck- no sleep is tough on everyone!
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My dad was given Seroquel and melatonin to get him to sleep 4-5 hours. At this time he was bedridden but would yell for my mom in the next room waking her. The combo did help him a lot. During this time he had 24/7 caregiving in his own apartment. Expensive, yes but well worth it for his last weeks. Then we finally started hospice.
Very hard time for you and I hope you get some relief and help.
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Part of the attraction of memory care or the dementia units of a nursing home are that they have locked units - the residents cannot get outside when they wander - and they have at least some staff overnight to attend to someone who is wandering. Frankly, letting someone wander around in the facility at night when they are restless and want to be up seems like a fine solution - but at home with only two of you and no hired caregivers, it's an unsustainable situation. My mother had Parkinson's dementia and she'd be up in the night but at the nursing home where she was they were able to talk with her, make sure she was safe and eventually get her back to bed. I was thankful that she had that kind of care.
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I’m going through the same thing with my mom! Trazadone has not worked for my mom. She is on a very small dose Haldol. My mom does the same thing. Wanders through night..strips clothes etc. I have caregivers there when I need a break. My mom is 91 and on hospice. We just need to get these meds working. So sad
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Petite1 Jan 4, 2021
Sometimes Haldol has the completely opposite effect. I believe it is called the paradoxal effect.
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If he can afford it, can you get an aide to sit with him at night (to give you both a break)? Being on call 24/7 is not sustainable.
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Your father may have Sundowner's Syndrome - the confusion and anxiety some seniors get as day progresses into evening. Usually consistent routines, turning on more lights in the evening, and anti-anxiety medications can help to calm this down. Being "up" most of the evening is NOT Sundowner's Syndrome but a disruption of the circadian cycle, or a sleep problem. Your father may have an enlarged prostate that is causing him urinary urges; have this evaluated and treated by a urologist. He may also be getting too much sleep in his daytime naps so his "sleep needs" are met during the day. Limiting naps to less 20 minutes may help. Also getting your father into the sun during the day to help him stay on a correct "day-night" schedule may help. As an RN, we used to give Benadryl at night for those with difficulty falling asleep. You can try this - with doctor's approval - or ask for a consult to a sleep specialist who can prescribe medications to help with his episodes of wakefulness during the night. If this seems like too many specialists, medications, and adjustments... some folks have found it useful to hire a sitter during the night who will help him with toileting and returning back to bed (so you can get a good night's sleep).
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I put full spectrum lighting near my parents's chairs so they would get "sunlight " during the day. Switch to regular light after dinner. I also put a little nightlight on a timer and told dad if the light was on, it was sleeping time. ( He would see 1:00 and think it was afternoon). I gave up on sleeping before 3 am when dad woke, I'd change the pad lining his diaper and get him back to bed, dry. Then I would get some sleep.
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what dose of melatonin did you try? Most people respond well to melatonin in the correct dose for them. I started my H on 5 mg and had to step it back to 3 mg. But the have doses up to 10 mg.
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Can he get in any trouble with electrics or gas? I would just make the environment as safe as possible so you can sleep knowing he can't get in trouble. Locks as needed on the kitchen doors, doors to outside...
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Imho, you require sleep, else you'll be good to no one. Your father should not be catnapping during the day. Prayers sent. Possibly consider facility living.
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Tou can not continue on the path you are traveling. You need your sleep or you will be useless to even care for yourself. My dad did the same thing. He we scrimmage through his possessions, usually looking for his car keys, we had to take them from him as he was unsafe driver as well as would get lost going straight. One of the most difficult decisions I had to make is to realize I was not able to care for his needs with dementia. I finally researched facilities that could take care of him. Do not allow yourself to feel guilty for getting your dad the care he deserves and needs. He or others may try to put a guilt trip on you. You are not being neglectful or mean, you are being realistic
Best wishes
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My mother does the same thing. It's hard because you don't want to give them a sleeping pill that will make them groggy and fall. She goes back and forth to the bathroom every hour; takes off her pajamas; or sometimes gets fully dressed. My main fear was her wandering to the stairs. I installed a gate that she doesn't know how to open, that allows her to go back and forth to the bathroom, but not near the stairs. This has given me enormous piece of mind! I still wake up when I hear her, but I let her do what she wants. I no longer spring out of bed panicked that she is going toward the stairs. She pulls all her clothes out of the closet, goes back to bed dressed in day clothes. So what? She's safe. I couldn't find a tall gate, so I installed one about a foot off the floor. She can't slide under it or climb over it.. I also have a sitter come three nights a week. They are great at just helping my mother back to bed and letting me get some real sleep. I hire them from SitterCity. I actually get better quality sitters from there, than from those professional agencies who pay their caregivers minimum wage, then charge me $24/hr. The only difference is that SitterCity does not insure their sitters. I have had to let go of certain fears and concerns and trust God through all of this. But, I still have a camera on them and don't leave any valuables laying around.
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Here is what I know. When doctors prescribe melatonin.....they prescribe too much whether it be in or out of the hospital. When you take too much your body stops producing it on its own. Thats not good. Its impossible to cut a pill to get a much smaller dose. You should give this a try. You can buy it on amazon for 7.99. Zarbees childrens liquid melatonin. Start off with about .30 ml for a few nights. If you dont see a change raise slowly to about .35 ml or .40 ml. It is easy to get the dose you want because the dropper is marked but you have to make sure you get it all out of the dropper. You have to wait a few seconds in between squeezes so all the liquid comes down to the outlet of the dropper. Try not to go over 1ml. Most drs tell you to take about 3mg (notice I am talking ml and mg) The ml is because its a liquid. but the 3 mg pill is way to much and your body will stop making it on its own. The lower the dose of melatonin the better. If he is taking any now I would try to stop it for a week if you can before starting
this to kind of reset. Just notice........the bottle says 1 ounce = 30 ml. You dont want that as your dosage. You want to start at .30ml. (point 30) not 30. It is a very small amount of liquid. I put it in a tiny glass....almost like a shot glass and
then add a few swallows of water to that and stir it up good and have your
father drink it. It tastes really good. If I havent explained this good enough feel free to let me know. Please let me know if this works for him. Please give him a big hug from me.
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TouchMatters Jan 4, 2021
Actually there are pill slicers for VERY TINY pills. They 'all' fit right in the triangular corner. I do it.
* People lose Melatonin with age.
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medical bed, lowered so he doesn't fall out... guard rails, perhaps to try to keep him in bed... maybe not.. if there is a will, there is a way...
facility may be an option..
prayers are with you..
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I would suggest keep a medium light on during the night for him. I had a friend of mine, her dad had a similar situation as you.( The night light and the tv helped him tremendously ) I know every- one has a different s/s but I would speak to the doctor about his alternative meds for him. I can't imagine what you're going through. Wishing you all the Blessings in New Year for you and your family🌼 You're not alone. Please Take care of yourself.
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As others here have stated...there needs to be a schedule of awake time and asleep time. The same as adapting a baby. If left to sleep throughout the day with no stimulation, the end result is danger at night.

I discovered my Aunt responds well to music and I have invested in Google Speakers throughout the entire home. I can tell each one to play different music and have Pandora stations that are perfect. I also have an old IPAD2 that is cracked but perfect for Bluetooth headsets which she will also use but sometimes removes.

In addition, I bought several "plastic dish wash tubs" from Walmart and I fill those with different "tactile" things. I purchased a hospital type rolling table (well worth it!) that I cannot live without and that goes wherever my Aunt is located. Although there are some baby type toys that I am now using, it keeps her hands busy. Sometimes it ends up on the floor but using extra chairs and tables, you can keep these tubs within reach. Just be mindful of when you must begin to remove small objects. My Aunt has begun trying to put some of the things in her mouth, even though she has just eaten and should not be hungry. I have now "baby proofed" her tubs for safety. I purchased a nice reasonably priced bookcase where I place all the tubs and store other larger toys.

My Aunt also loves her robotic cat from "Joy for All" and I will often turn it on and leave it next to her in her bed or in her recliner/rocker. It meows and does other actions which can be "silenced/muted" for when others are in the room watching TV or enjoying music and the cat will still do various actions similar to a real cat.

Hope this helps. My Aunt is basically awake for 12 hours and asleep for 12 hours with only occasional "cat naps" that I try to time and control (I also have cameras that view her when I am in my home office). If I did not wake her daily, she would definitely sleep all day long which is not good for anybody.
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* Cruel as it may sound, I would lock him in his room. Or try it and watch for a few nights and see what he does.
Perhaps leave something on the door knob to distract him from remembering he was headed out. Find a doll or something where you can record a message inside when it is touched "I want to go back to bed and sleep. I am tired."

I found easily: (You will need to figure out if your dad will destroy it - or perhaps even be afraid of it. This happens to be a bear. I am sure there are other types of figures or items.

Brand Bear Factory Material Plush
Plush 15" soft bear with 16 second recordable voice module
pouch in back allows easy insertion of recordable voice module
Lovable bear plays your voice message with every hug
PERSONAL Recordable Plush 15" Talking Teddy Bear
Brand: Bear Factory 4.6 out of 5 stars 773 ratings 50 answered questions. Price: $24.99 & FREE Shipping on orders over $25.00 shipped by Amazon.


























* Consider placement.
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My mom is on Seroquel (.5 mg) at night. She also walks 1.3 miles about 3 times weekly which makes her tired in the evenings.

I strive to not let her nap during the day at ALL. Keeping her busy helps with that. Our sitter plays Rook, puzzles, sweeps, and other light housework with Mom. They run errands like a Walmart or pharmacy pickup. They make a great team and Mom sleeps most of the time from 9 pm - 8:30 am when I get her up.

Her own sleep seems to affect her mood and the desire to wander as well. Is there a task or two he used to do that would really make him feel useful during the day? What did he do earlier in life?
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My dad had Alzheimer's and lived with me for 7 years. It is tough. I had the entire house double dead-bolted to prevent him from opening the doors and wandering. ALL doors had deadbolts that needed keys to open. Safety issue? - yes. One key was always taped on the door ledge (every door). Also, I had extra smoke and CO detectors installed; for earlier warning; in case of fire. He wandered throughout the house. So, I made sure there were no trip 'zones'. Since, I had 3 boys; we all made sure that ALL items were off the floor - as part of the bedtime routine. My dad would, very often, strip himself [sometimes start playing with himself] - all hours of day and night and often come down like that for our family dinner! My children understood, that grandpa was sick and didn't know what he was doing. I would handle those situations [funny in hindsight] by simply saying that we need to get dressed for dinner -- take him and dress him -- always change the subject [to anything]; and continue on as if it did not happen. My children learned that it is o.k. to get sick. Not all physical illenss can be seen. Mental illnesses {brain illness] causes a great deal of behaviour change. As long as no one gets hurt --- who cares!
YOU NEED SLEEP! An idea - might be hard to do - but - don't get up. Let him wander until - he will wake you up. My dad actually got into bed with me one night. I gently took him back to his bed, changed his bedsheets and depends
I did not even lock my bedroom door.
Like you said, everyone's experiences are different. My dad died in 2008. After I had him move in with me -- are some of the best memories that both I and my sons have. I know- hard to beleive. - At the time -- I would never had thought so!
I hope that you take care of yourself. that is the one thing that I wish I had known.
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InFamilyService Jan 7, 2021
What difficult but sweet and funny stories. When we can humor helps a lot. The memories I have caring for my dad his last year and long conversations sitting in the hospital, ER and rehab are precious. I actually learned some new things about my father's life. It was like a gift just for him and me. Not thankful for his suffering but he knew I was always there for him and it meant the world. Often I knew he thought I was his wife of 65 years and that was o.k. Its also so healthy for the rest of the family even grand and great grands to see elders "sick" and understand they need help.
God bless you and yours!
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