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My parents are 87 yrs old with dementia living at home. I’m their daughter who lives across town, I go over to visit every other day. I organize their pill boxes weekly. Sometimes they forget to take their meds and I give them a hard time about it.


I discovered hidden in a cupboard wrapped in tissue, a few days worth of both parents meds. Of course I was puzzled and upset. Are they giving up? Tired of taking these meds? I have not approached them yet. I need advice on how to handle this difficult situation! Thanks. ACM. (Only sibling in town )😬.

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I don't think it's anything as straightforward as your parents wanting to give up or being tired of taking meds. I think the culprit here is their dementia. People in certain phases of dementia are know to hide their things, stash them away for whatever reason. That the pills weren't just tossed into the trash (which be much easier to get away with from the prying eyes of their adult daughter) but placed in tissue and hidden away in a cupboard leads me to think it's the dementia. They probably don't remember hiding the pills.

This is going to be another hurdle for you to jump. I wish I could tell you how.
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It might be time to realize they can not live alone, at least full days.
Forgetting to take medication, not knowing what to do with the medication, being confused as to when and how to take it is the tip of the iceberg.
What else is going on that you are unaware of?
Does the stove get left on?
Does either of them wander? A walk around the block now might not be a problem but what happens when one or the other can not find their way home?
Does either of them drive?
A caregiver, or "companion" might help during the day if they do not need "hands on care" a companion can not give medications but they can remind, put the medication in front of them and watch that it is taken,
Are they safe in the house? Or is it time to consider Assisted Living that may transition into Memory Care?
Is there Adult Day Care in your area that they could go to a few days a week? That would keep them occupied and socializing. Some Memory Care Facilities have Day Care..with the hope that if it came to placing someone you would select that place since the person would know the staff, the facility and the routine.
I would not quiz them about hiding or hoarding the medications as they probably have no recollection that it was done.

By the way you might want to discuss with their doctors what if any of the medications can be discontinued. Given that they both have dementia, a condition that will not get better and is not curable, maybe some of the medications are not necessary any longer. Is a medication for lowering cholesterol doing either any good? if they are taking medication for the dementia to slow the progression, is that doing any good (if it ever did)? I would discontinue any medications that are not actually needed. But do so under the direction of the doctor, some have to be withdrawn slowly.
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This is a red flag, a sign that they are no longer capable of living alone. If they were in AL, their meds would be distributed to them, no not taking them.

Actually some people with dementia hide the meds because they are afraid of running out and they think that they will die if they don't have them.

Most likely they have no clue where they put them.
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How advanced is the dementia? Could they have devised to stop taking meds or is this more a losing/hiding/misplacing things? Are there other things missing? My dad takes what my brother terms a “stupefying” number of meds, many of which we’d like to see discontinued as they’re from an army of specialists that admit they have nothing to offer anymore but sure keep him coming back. My dad won’t stop any of them, though he says he knows many who have stopped the meds and say they feel fine without them.
See if swallowing pills has become difficult, if there are side effects you aren’t aware of, anything like that. Maybe they are just tired of taking meds and not seeing or feeling any benefits. And maybe the dementia is causing more issues than you’ve seen before
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Anyone has a right to refuse medication. I would first ask them if that is their choice, or if they forgot. If they simply forgot, you may want to take steps to make sure their medication is taken. I would notify their physician if they have decided not to take it. You should be informing your parents on what the reasons for the medication and what could happen if they do not take it. This information can be given by their physicians.
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ArtistDaughter Oct 2019
Depending on the degree of dementia they may not be able to answer the question, as they do not remember what they did or why.
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This is a sign that they are no longer able to self administer their meds. I, too, carefully filled my dad's pill box each week and he would randomly take pills from the box. He couldn't remember if he'd taken his meds for the day, or maybe he'd take Tuesday's meds on Monday and then on Tuesday figure he'd already taken them, or sometimes drop them and they'd be on the floor so he'd "borrow" a few from a different day. And this was during a time when he managed to be in his own home, cook simple meals, and take care of all of his ADL's except keep track of medications. I tried giving him a reminder each day and that didn't work as once we hung up the phone he would just do the same thing. Unless you can physically remove all the meds (I had hidden all my dad's except the ones in the pill box) and have someone administer them each day all the admonishments and reminders to your parents won't help.
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If I found meds wrapped in a tissue in a cabinet the first thing I would think is that they need additional assistance in taking their meds. Sorry this happened but I am glad that you discovered it.

I would be concerned if any other pills were not taken and or stashed elsewhere or even thrown in the trash. Could be a red flag, don’t you think?

Are they alone in the house? No aides helping you? Maybe it’s time to have someone with them or if possible they could go into a facility.

Best wishes for you and your family.
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Everyone should have an emergency stash of meds, for a disaster, or for when the pharmacy does not have the medication.

Everyone has forgotten to take their meds on occasion.

If you lighten up a bit, stop giving them a hard time about it, you can more easily deal with the meds without becoming puzzled and upset.

Get a special bottle for them to place their missed meds in, and say you will deal with it later.

Your discovery may be an indication they need calls for medication reminders. Or a higher level of care.

Do you have any indications that they may be giving up? Make sure you are not jumping to conclusions. Make sure you are not burning out caring for them. Use the caregivers on this forum to talk it out, as a sounding board, and as a resource for ideas.

All aging parents would be so lucky to have a daughter care so much about their welfare and daily activities. Keep doing the good job that you are doing!
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NeedHelpWithMom Oct 2019
Good idea but some elderly people can barely afford their required meds, let alone buy extra without insurance.

Plus how do people get extra? A script is written for a specific amount. Insurance approval is needed. I have had a pharmacist sell me a few pills when needed before my script was approved due to an insurance issue. Is that what you are referring to?
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They each have alzheimer's / dementia, right? They have declined some more. I went through this with my mother and ended up putting her in a nursing home. I think the time has come. Even having an aid in the house did not change anything. She would ask my mother if she had taken her meds and the dementia would lead mom to say yes, when she had not.

I'm sorry that you had to quit your job to care for them for that will hurt your own retirement.
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Please don't "give them a hard time". You have said they have Alzheimer's, so doing so will make them anxious and worsen their condition quite a lot often enough.
The first thing to do is to speak to them calmly, gently, quietly and with much love. "Mom, I found yours and Dad's medications wrapped in some tissue, and not taken. Can you tell me about that". To be frank, were they attempting with rationality not to take them they would have disposed of them in a manner in which you would not have found them.
You have said that you feel it is a possibility they have given up. I think the more "likely" explanation is that this is "the disease". And they may not be able to stay alone safely and with assurance that their pills are taken at this point. I shudder to think you are the only sibling in town. You go now every few days. It may be, if you cannot enlist help, that you are down to once a day, and that all pills must BE once a day meds (which means trip to doc if they are more than that).
I think the main thing here is that the two of them may soon not be safe alone at home. I shudder to think it and I know you do, as well.
Start with finding out if they are in control of this. Only way to know if they even know the answer to that is to gently ask them. Do not SCARE them. Simply ask them. Good luck. Update us if you will, as I am so curious is there is a rational explanation.
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We were using those weekly pill boxes fro my mom as well, one for morning pills one for evening but she got to the point where she would get too confused about the time of day or forget if she had taken them or not and not know what day it was, causing her to double dose or forget all together, though we quickly started checking in to resolve that. Anyway a few times she would put the pills she wasn’t sure if she should take or not “safely away somewhere” in an effort not to waste them and I suspect hoping she could hide it from us that she might have missed or was confused about her pills. The management of her meds was a real sticking point with her, she held on to that tighter than driving. Anyway we solved all of that with one of those round auto pill dispensers, I got it on EBay at a big discount from new but it would have been worth the $60 or so new too. It gives access to her morning pills at the time we choose but prevents her from getting to any others so its easy for her to tell if she has taken them or not (it has a blinking red light and beeps when it’s time too) and there is no chance she will take the wrong ones at the wrong time, she loved it from the get go! We also have a camera set up over her Medicine table, all her medicine lives on that table (she’s diabetic too) the pill dispenser and a glass she pours the pills into and swells them out of the glass (she had a habit of carrying them around in her hand for a long time otherwise) so either my brother or I can remotely check in and see if she has taken her pills and shot and call her to remind her if she hasn’t, it has worked really well for us and allowed her to stay in her home longer than she would have been able to without the oversight. Eliminated the fighting and tension as well, the power struggle over independence/dependence, we have learned to be less challenging and get out concerns across with more humor which gets her cooperation rather than heel digging on things, she still feels the independence of control over her life with a little assistance (a little, hahaha) anther than feeling like we are simply taking control away. It’s been a process and it’s an ongoing one but we have all learned how to adapt to the new challenges as they come up better than we were, it’s so much less stressful.
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What is with the Wrapping of things in tissue paper and then hiding them? My Grandmother with Dementia used to do this too, and I have heard it time and time again here on the forum also! Whether it be pills or their hearing aids, jewelry, money, or silly little things like children's bubble gum toys (that was a favorite of my Grandmothers), and always hiding them too! For you it was their medicine, but now that you have found this "trick" of theirs, always be sure to double check the balls of tissue paper you find, as you never know what you will find in them!

As to "what to do", I doubt that there is much you can do except monitor them more closely, think reminder calls or some sort of alarm system, get a locked timed dispenser, getting additional in home care, or begin thinking of Assisted living for them, which will likely be financed by selling their home, unless they have well funded retirement income. I hope that you have POA for both Medical and Financial, if not do it NOW before it is too late!

Assisted living will be most helpful for you, in that they would be monitored and it would take a lot of of your plate in the everyday management of them, but of course you will still be involved in their care, but it would allow you to be their daughter again, and not their full time Caregiver.

I definitely would consider it, and begin the process of looking into it, as the sooner they are place in the downhill spiral of Dementia, the easier it is for them to adjust to their new surroundings. It is only going to become more and more difficult from here for you, medication mistakes are just the beginning! Please don't become another Burnout Caregiver as it will eat up your whole life, and that is going to become a repeat theme you will hear, here on the forum, we all want You to remain healthy in the Caregiver Marathon! Good luck!
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Your parents have Dementia. You will not be able to reason with them. Are the meds important? At their age cholesterol meds can be dropped. Maybe you are going to have to go everyday to make sure they are taking their pills. It may be time to be thinking about an AL facility. If they are not taking meds they may not be eating or drinking either.
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Judysai422 Oct 2019
Good answer JoAnn.
Also, a medical professional or social worker needs to determine whether they are forgetting meds occasionally and hiding to avoid being scolded or if they no longer want to take meds and should be evaluated for hospice. We also do not know if anyone has medical POA.
But at the very least, these folks should not be on their own...and it will only get worse.
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It does sound like you or an aide needs to be with your parents at medication time to make sure meds are taken. Hiding meds may be confusion or perhaps embarrassment at having forgotten them. They wouldn't dare waste forgotten meds by throwing them out, and they might also be saving some for later so they don't run out. Although I usually remember my own medications, I keep a checklist and will sometimes discover that I have forgotten something only b/c it is not checked off the list yet that day and I can take it right away. Your parents' Dementia might make a checklist useless. Someone there to supervise would be much more foolproof.
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Hiding things is one of the things my mom does on a regular basis. She hides my keys if I leave them in her sight, puts my purse in a drawer, her own things "away" in places they do not belong. For her it is safety that she is after, suspecting someone might take her things or mine. And when I ask if she knows where something is when I can't find it, she says someone took it. Hiding her pills is exactly what she would do if it was not monitored closely, as in watching her take them.
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If they’re not supervised, then there’s no way they will take their meds. They need 24/7 care. I have to keep going back several times some days to give mother her meds & I live with her & primary caregiver. When she used to understand, I was able to leave it for her & go out. That was 4 years ago...For you, it’s time to get full time care for parents. Hugs 🤗
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Oh boy, can I relate! I'm long-distance caregiver for a cousin with dementia. Until recently she lived independently, and the friend who was helping her out kept calling to tell me she'd lost her prescription meds and that he had to pick up replacements. This must've happened a dozen times in the last six months she lived on her own. Then, earlier this year, she moved into memory care, and I cleaned out her apartment. Deep in a closet, I found a shoebox, and that shoebox was stuffed with every single missing med -- and I do mean stuffed! She hadn't been losing them, she'd been methodically hiding them! (I was impressed, since by that point, she wasn't able to methodically do much of anything else!) In my experience, there's no way the person with dementia is going to have any real explanation for why they're hiding their pills -- they may not even remember doing it -- and there's no way you're going to be to reason with them about it; you are just going to have to find a solution to make sure that the meds don't disappear and that your parents take them. In the case of my cousin, it would have been to have been to have someone else hang onto the meds and give them to her each day at the prescribed time, then stick around to make sure she took them. It wound up being a moot point, because she went into memory care, but even now, the nurses on the unit tell me they have to watch her take them, or she'll hide them. If I had to guess, I'd say that on some level she's suspicious of the pills; she knows she's having trouble remembering, and I think she thinks the pills are controlling her. But that's just my guess; she really can't explain it. Good luck -- you have my sympathies!
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Mostly - stop giving them a hard time.

Approach them the way you would approach a child - "it's ok that you forgot - please take your pills now, while I am here."

My father told me that he learned it's ok to miss them sometimes, just not often. He found out that he could easily go a week or more without some of the pills and no bad effects. Mind you, he took the pills daily, but who hasn't forgotten to take their vitamins sometimes.
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When my mom was forgetting, my sister picked up an automatic pill dispenser like this one - https://www.epill.com/epillstation.html
the alarm helped to remind her and they were automatically dispensed to the cup. One of us there at some point every day, but seemed to keep her on track for the times we weren’t there.
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Jenluck Oct 2019
We used a similar box for my mom when she was still living in her own and it helped tremendously. We would find pills all over the place, and find pills from multiple days missing from the pillbox. It was hard to know whether she had taken them or not. This type of pillbox helped because it only dispenses 1 day at a time. We also talked to her dr. about the meds she was on to take them all at the same time (vs. some in the morning and some at night) just to keep it simple. (Although, I know these boxes are programmable for multiple times of day too. It was just easier for us to manage).
After filling the box, I also locked up the rest of the pill bottles to ensure they were safe and not messed with. At first my mom was upset, but then she eventually forgot about it. I was careful to put them away when she wasn’t looking to not re-hash the argument.
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Oh my gosh - my mom did this all the time, attempting to "control" the cassette case. Not sure if you can amend this as I tried several times and my late mom would not listen. Some pharmacies have locking pill bottles. Perhaps you can try this.
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They know it upsets you, so they hide them when they "remember" that they forgot. It may be time to have somebody come in daily to help remind them to take their meds, bath, eat...
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If you can’t have them placed in Assisted Living due to cost or location (it sounds like it’s time) I would highly recommend that someone actually dispense their meds and watch them take them. There really is no other solution. Explain to your parents that you love them and that you & their doctors want the best for them.
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Diplomatically. I am sure they are really tired of the pills and being semi-micromanaged. Do not be a self-righteous nag, it will only add to the misery... and do be compassionate with all, especially yourself. Give yourself a pat on the back for being a consistent and good daughter.
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disgustedtoo Oct 2019
Certainly don't nag, accuse, argue, attempt to reason with them, but your comment almost seems to be suggesting don't worry about them being taken. Some are necessities and need to be taken every day. Our mom takes BP meds - if she doesn't take them, her BP goes sky high! One time she missed 2 days, just before a checkup and WOW was her BP up there!

I do agree with others about asking the doctor(s) what meds can be eliminated, for instance cholesterol, as those may not really benefit someone with dementia so much.
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Looks like you need a different approach. I would take them to the doctor's appt. and stay there in the room with them, present the problem(s) to the doctor and seek assistance from him and his social worker, or assistant. They probably need to be in Asst. Living so that meds can be given under supervision. That will help you and them. Obviously someone is not taking them, and is either unaware of what they are doing, or is doing it deliberately. They are probably doing other things that you aren't seeing, but others are. Time for a live-in, or a different situation.
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Hello Acm
my friend has a med dispenser that tells her when to take meds
at certains times of day, if she doesn't someone calls her, not sure
who, if its the doctor or service of the machine.
Its good to ask them why, maybe they are experiencing so sort of
bad side effects from the meds
This would be something to ask their Doctor about.
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If they do this and they both have dementia, they cannot stay at home alone. I think you must find a way to place them. Financially, there are ways to do this but it takes time and effort to find the resources - but it can be done, I assure you. You cannot be there and they are NOT going to do what they should do. So unless you have someone watching them 24/7, it is not going to happen. You have to get them placed. Nothing else will ever work with them.
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disgustedtoo Oct 2019
Agreed they may need placement for other reasons, but before resorting to that, if meds are the only real problem, they would only require being there every day for long enough to see the meds taken. OP lives across town and goes every other day. If Op cannot go every day, an aide could be hired to "monitor" the situation. Using a timed locked dispenser along with someone who can check would work well. They cannot handle or dispense the meds, but they CAN point them out and remind them to take their meds (watch to see they are taken or report to OP if not taken.)
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Don't give someone with dementia any kind of hard time over something they've forgotten or misunderstood. It's a bit like giving someone with a broken leg a hard time for not keeping in step.

Almost anything could have resulted in these medications' ending up where you found them. E.g.

They have gone off the idea of taking medications, for some reason with a real or imaginary basis, but were reluctant to tell you about it.

They thought the medications should be put away safely.

One or both of them was feeling under the weather and they weren't sure about whether to take their meds and didn't know who to ask, so they came up with the hiding solution instead.

One of them thinks they should take their meds, the other doesn't, the one who does put them away for "later."

Create your own scenario - endless possibilities!

Ask them, nicely. If they can't tell you or don't want to talk about it, don't push them. If you have authorisation, call their doctor and/or pharmacist and take advice.

Incidentally... what were you doing in that cupboard, if you don't mind my asking? What sort of cupboard was it?

By the way, too; the trouble with all of these gadgets - dosette boxes, blister packs, pill reminders etc. - is that they assume too much. They assume that:

the person will hear the alarm
the person will connect the alarm with taking medication
the person will be able to access the box
the person will be able to manipulate the contents out of the box or compartment
the person will be able to fetch a glass of water
the person will not drop anything
if the person does drop one tablet in five, say, the person will know which one it was and where it went
the person will be able to continue the task to its conclusion

and if you ask me a frail, mentally frail older person cannot be relied on for any one of those things. I don't mean to be sweeping, I have met many very elderly people who are in full command of their prescriptions and doing fine; but once problems do emerge the solution is rarely as simple as a clever little gizmo.

Safe administration of medicines requires a whole training course of its own. If I were you, I should be inclined to talk this through with them and their doctor *anyway*, even if they do explain the recent tissue incident satisfactorily, because it is only going to get more difficult.
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I wonder: I bet they forgot all about the pill boxes, found them under a book or a newspaper, realised they'd missed some days, emptied those into a tissue and hoped you wouldn't find out.

It might be worth a moment's sober reflection that if they're afraid you'll be angry with them, they could conceal from you something much more important than this. Perhaps have a talk with them and give them a firm undertaking that you will NEVER be annoyed with them, but you will be worried if they're keeping information from you.
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Short of being in total control of their meds, down to giving them their meds everyday and keeping meds with you meaning they don't have access to them. Short of that, you can never be sure they are taking them.
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Both of my parents have been diagnosed with borderline dementia. I have them do their own medicine containers. I help correct them after they are done. I have colored medicine containers for each parent. Different colors for each day. Each day labeled Sunday through Saturday. Different colored container for each parent to avoid confusion. My mom has a container with springs to pop each container up to help with easier hand coordination. I praise them after they are done. I keep their containers on the dining table right where they eat. That way I can tell what meds they missed during what time of day. If they missed morning, I give it next meal time. If they missed evening, I just wait to until the next evening. Plus, I have them do brain and physical activities as well as adjust their diet and partially use the mind diet. I also, take them out once in a while to do something different and enjoyment. Hope this helps a little.
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disgustedtoo Oct 2019
This may work in early stages, but in reality how do you actually 100% know the pills were actually taken? Certainly you can tell if they have not been taken, but if they remove the pills and toss or hide them, how would you know? Even though they are color coded, how do you really know each took their own meds? Unless you are there to actually see them take each and every one correctly, you don't know.
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