Hello. My 86 year old mom was diagnosed with probable alzheimers disease almost 4 years ago. She is still living independently, with help from a pharmacy that delivers her medications daily, a neighbour friend and a paid caregiver who visits her daily.
So far I believe she has been safe, but lately things seem to be getting a little more concerning. She has had more frequent incidents like losing her credit card (much later, finding it hidden away in an old wallet), burning her food in the microwave (I know this happened at least once), and setting off the smoke alarms in her building by burning a candle down into it's setting which began to smoke (an old christmas decoration-probably not made to be lit)
What worries me the most now is that she seems to be waking during the night frequently, thinking it is daytime, getting up and eating, dressing and going out into her building lobby. The reason we found out she was doing this is that she has been calling her neighbour and caregiver at odd times during the night thinking it's day time. Last night she called me at midnight. She thought it was noon and she'd gotten up and dressed and had eaten her lunch- was planning to go out to the lobby for coffee (some of the residents gather for coffee mid-morning each day) I told her it was midnight and she was surprised. I asked her if she looked out her window and saw it was dark out and she said she did...but she didn't seem to connect that dark means night time. I'm starting to wonder if she is doing this every night. Since she lives alone, it's so hard to know what is really going on.
I don't know what to do now. My gut tells me she needs more supervision, but my heart breaks thinking of moving her away from her community and her boyfriend who lives there too. He has been a wonderful support for her, but I'm thinking she may need more. Thanks for reading. Thoughts?
My dad has been mixing up day and night for several months. He has driven to meetings in the middle of the night that were going to be the next day. I can't comprehend how someone can recognize day and night when it is pointed out to him but not understand it at other times--that's his vascular dementia. I have since taken away his car (he thinks it is at the dealer's being fixed) and am planning to move him to an assisted living residence. Without a car, he has gone walking at odd hours (but not usually at night since it also gets very cold). Does he need more supervision? Absolutely. I'm not as worried since he has no car, but eventually, he could be lost and alone out at night.
I would look for options available in the community to help your mom, including at night. Social workers and dementia experts might be helpful.
Lola, it is always difficult to move our loved ones with dementia but your Mom is NOT safe where she is. Night wandering is typical of dementia. They do not have the concept of day and night. She also doesn't have a concept of staying safe in the building. Next time she may wander out of the building and become lost. It is a serious issue that needs to be addressed NOW, today. Don't depend on the cold to keep them in. My dad eloped from his AL and was found walking down the middle of a busy street at 6 am with it 13 degrees outside and no coat on. We were lucky he was not hit by a car and killed as happened to a lady here in my town recently. She was left alone for the son to go fill a prescription, wandered out of the house, and was hit trying to cross an interstate. A couple of years ago a gentleman wandered away from home and was found 2 days later in a wooded area miles from home drowned in a creek. This is not to scare you but to let you know how important it is to make sure your loved one with dementia is carefully watched.
Most dementia patients wander away at some point and become lost. Many times it is just to the lobby or just down the street but it can be disastrous. Follow your gut on this one. Until you can find placement, you might want a 24 hour sitter with your Mom. Yes, it is that critical.
Son, I am glad you are progressing towards placement for your Dad
I think she is probably reaching moderate stage like this. This is the time when full-time caregivers are needed. Sometimes she may need overnight caregiver. Try home care first before you move Mom to a facility. Indeed she would be confused with day and night.
She also has sundowning syndrome: she would be afraid of darkness at sunset and she would be anxious at sunset. Probably the caregiver or family needs to make sure she feels comfortable at sunset. Turn on the lights in the house so she feels secure and bright. Don't make her stay in a dark room. Leave the night lamp on and etc. Draw the curtains at night if it is dark outside, esp. in the winter.
Later she will go out and get lost if no one is near. So make sure she doesn't go out alone.
Eventually she will need 24/7 caregiving and then you can consider a facility if the family cannot offer home care.
Thank you for your kind replies. I would like to do what I can to keep my mom in her own home as long as possible, even if that means having a sitter at night with her. She is still very physically capable, still taking care of her ADL's, preparing her own breakfasts and lunches. She eats dinner with her boyfriend most nights and he takes care of preparations- they mainly eat frozen food they heat in the microwave.
She seems to do quite well as long as her routine stays the same. The pharmacy delivers her morning meds and helps her take them, changing her exelon patch too. She goes out for coffee after breakfast to the lobby where a few of the residents gather, then back to her suite and has lunch then her companion comes by for a couple of hours. She takes her for walks and assists her with various tasks like grocery shopping. Later in the afternoon her boyfriend comes over and they have dinner and play cards or watch TV. I think she goes to bed quite early, depending on how late he stays. I know he's not there at least one evening a week and I'm not sure how she spends her evenings alone. She still likes to play games on her computer- solitaire or scrabble, although when I was there the other day she seemed to have forgotten how to get the scrabble program going.
I've found she has trouble if she is left alone for too long, so we have been trying to visit her on the weekends to break up the days.
I will look into finding a speaking clock that can tell her the time as well as day or night...I've been told I might be able to find this online. It's worth a try, although I'm not sure she will remember to press the button to get the response.
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Lola.. new is not user friendly for a dementia patient. Learning takes short term memory. You are right in that she will probably not remember to hit the button to hear the sounds. Forgetting how to use technology is problem in the id stages of dementia. Computers, cell phones, remote controls, and cordless phones are all relatively new inventions. They will quickly fade as the memories regress. So I am not surprised that she is having difficulties with the computer and that tells you that she will have difficulties with a new clock.
From what you say she is functioning on familiarity with where she is. She has a routine and they do better on a routine. But when there are periods of confusion or delusion that create an unsafe situation we have to rethink and reconsider. A night time sitter might be a good answer for a while. But knowing she is up wandering around at night is a reason to be concerned for her safety.
I would suggest that you research places that you might want Mom even if you do not want to mover her there today. Usually it is a crisis situation that causes a move to a care facility. You need to know what is available and what you want for your Mom before the crisis occurs. You need to know the availability of placement as well. If you make a decision now, then you will not be caught in a position of not having adequate time to find the right place if a crisis should occur.
I would also suggest that you test her ability to know what to do in the case of emergency. Set off the smoke alarm and see if she knows what to do. My guess is that she will not know to leave the house without prompting. Routine works well when life is routine but in an emergency would she be able to think her way to safety?
What kind of trouble does she have when she is alone too long?
Oh my gosh. She needs 24 hr watch right now. She is 86 with Alz, and has those symptoms, she should never ever be left alone not even for 5 minutes starting now. My father is now in stage 7, and its hard to realize that they need full time care when they are still waiting on themselves, walking, etc...but believe me, she needs someone just to be with her, a companion all day and all night. The last thing you want is for her to be so confused that you can't find her or she gets extremely frightened in a certain situation being so confused. Leaving her alone for ANY length of time is the worst thing that can be done. PLEASE get her someone now that can live with her. I can't beg you enough. Im one who knows.
I am new to this and live in the UK, my mum has just begun to ring me in the night. I dont think she actually dresses etc, but over here you can get technology called just checking which using door sensors etc allows you to see how the person is moving around thier home and at what time, it can alarm and text you if the person opens the front door in the night. it allows you to see patterns, you can also get Ipad accessories at the apple store that you can set up in her home and actually see what they are up to! Human rights issues ! Anyway, i am working an idea where we have a screen which displays in words what time of the day it is, i.e. it is two in the morning so snuggle down and go to sleep, it will also play my voice telling her that. It will be activated by just moving a mouse. I am building it, it may not work, but she seems quite happy when i have told her what the time is and what to do. She is ok generally we are at the begining of our journey but i am trying to be innovative about tackling it!
StarshineGirl- Just Checking sounds amazing. I looked it up. I sure wish we had something like that here in Canada. It would be so helpful to be able to track my mom's movements during the night.
Update: I took my mom back to the gerontologist last week for a check up. Last time we saw him was a year ago. He said that he thought the exelon patch was helping her and increased the dose to 15mg. Recent studies have shown an increased effectiveness at a higher dose, so we'll see how it goes for the next 6 months and follow up with him again in the Summer.
He advised not to be too overly worried about the night waking at this point. He stressed that it's important not to get caught up too much in the "what ifs", as serious incidents involving dementia patients don't actually occur that often. (if they get lost, someone redirects them or takes them home, etc) My mom lives in a safe area (lots of seniors live there and people are aware of this) I have her enrolled in the Safe Home program for people with dementia (she wears a medic alert bracelet for this)
I am going to try caling her each night before she goes to sleep to remind her to take her medication. She takes a low dose of zopiclone, but often forgets to take it. I'm hoping that by reminding her, she won't wake up as much.
I do appreciate all of your input. This disease is tricky to navigate and we all need as much help as we can get!
Welcome Starshinegirl. I will be in your country Friday as my daughter will be married there Saturday. Your idea is interesting and I would love to know how it works. In the early stages it will probably work well. It also depends on the loved one and how the dementia displays itself. Mom lost her ability to understand spoken instruction early. If I said "Get in bed" she would just smile, look at me, and nod affirmatively. What she was really saying is "I don't have a clue what you are saying!" But if she saw me turn down the covers it was a clue to go to bed. Yet my Dad could follow such simple instructions until close to the end. Each is different and you need to know the abilities of your loved one.
One big problem is the lost of the understanding of numbers. Those are an abstract concept. Subtraction of numbers is one of the questions used to diagnose dementia on the MMSE. They lose the meaning of numbers. It's 2AM means something to us. It may mean nothing to our loved ones with dementia. They might just understand "night time" or "sleep time" better than what 2 AM means.
Also know that the sleep cycle (Circadian Rhythm) is easily disrupted in elderly dementia patients. Melatonin, a natural occurring hormone that we all produce. It tells us when it is time to sleep. As we grow older the amount of melatonin that we produce is reduced. It is also known that melatonin is reduced even further in those with dementia. Melatonin is much misunderstood in that it is not a sleeping pill. It does not put you to sleep. It can be used safely in the elderly to enhance the natural circadian rhythm. If given at the same time, every night, an hour or two before bedtime, it can help some elderly dementia patients return to a normal sleep cycle.
My question is, what do you do when you know Mom has gone out the door?