I found a few days worth of both parents meds wrapped up in tissue, hidden!! I organize their pill boxes. How to approach this situation?

Sounds like the Dementia could be Getting Worse, And if Anything would Happen and you Knew about it? Adult Protective Service would Intervene. You don't WANT that. Arranfe to try and Get Authorities to look into this now, They Need 24/7 Care, Not Living There. God only Knows what NEXT they will Do.

Jenluck says:

"After filling the box, I also locked up the rest of the pill bottles to ensure they were safe and not messed with. "

IF any containers are left in the home with these (or other) parents, they NEED to be locked up. Taking too many is just as bad or worse than missing doses!

I also locked up the containers. Her plan does the 90 day supply and I didn't want her to have ANY access to them. But I did want them at her condo, so that in case I couldn't get there to do the locked dispenser refill, YB could. It was under the spare BR bed, and if she happened to see me go there to open it, she would chastise me and say that was YB's stuff!!! She had no clue what was in the box.

LauraJMT says:

"Deep in a closet, I found a shoebox, and that shoebox was stuffed with every single missing med -- and I do mean stuffed!"

Oh how this brings back memories! When clearing out the condo, in the kitchen drawer I found TWO plastic bags, one large, one small, wrapped with elastic, stuffed FULL of pills! Every color in the rainbow!

No idea how long she collected all these, or what/who they were for (suspect many were from dad when he was still alive.) Perplexed as to why she would even WANT to save all those! We had already switched her to a timed locked dispenser, with daily aides to check she took the ones presented for the day. The remaining containers were locked up. She may have started these collections long ago, or may have started in the early stages, before I realized she had an issue, but the quantity and the types (not all were like the ones she takes) say this collection was done some time ago.

Again, save them for what purpose? It wasn't like anyone could tell what or who they were for, there were so many different kinds! I even later found some fentanyl patches in the washer/dryer closet that were for dad (passed in 2008, certainly long expired at that point!)

staceyb2 says:

"What is with the Wrapping of things in tissue paper and then hiding them?"

Yeah, what is with that!?!??! Our mother does it ALL the time. I have referred to her as the "Tissue Monster!" She goes through so many tissues and napkins. She will even snatch paper napkins away if staff is clearing the tables after meals!

When clearing out her condo, I found so many tissues, in drawers, under the pillows, under the bed, in pockets - you'd think there was a run on tissue and she needed to have some for any occasion! It might be left over from depression era, but well before dementia she would stash extra napkins from fast food places and carry tissues all the time. With dementia, it seems even worse.

In MC, this proved to be very expensive - they had ruined her hearing aid when it went through the laundry with her sheets/bedding. A new pair was purchased (she only used one, so I kept one as a spare - we only get reimbursement of some of the cost every three years!) Sure enough, about 2 months later, the new one was MIA. I WAS angry - with the first one she was still more or less able to keep track of it, but over time not so much. We didn't ask them to manage it (at some point I did request they change the battery every 2 weeks, per provider suggestion, but despite giving them batteries, nope.) With the new one, it is chargeable, so I DID ask them to keep the charger and "manage" it. She kept taking it out, so the suspicion is that she did this during a meal, wrapped it into tissue and that got tossed. They refused to help cover the $400 replacement cost, but now will take it away if she takes it out. At this point, at 96 with dementia and limited hearing anyway, it isn't likely I will purchase another for her. Perhaps cough up the $400 to have a spare - maybe. Maybe even $800 to have 2 spares.... Certainly cheaper than buying a new pair.

jkm999 says:

"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 they are on camera, there is no way this method will work, as jkm999 realized! Our mother would call me every day or every other to request a ride to an upcoming appointment (she lived by the calendar at that time.) I got tired of the calls, so asked her to get a pen/pencil and write down next to the appt that I would be coming to take her. Yup. No, not Yup mom, DO it while I am on the phone. Yup. No, NOW!!! I want to HEAR you writing it down!!!

Going forward, I made sure each appointment was marked with who would be taking her (usually, 99.999% of the time, me.)

However reminders, either on the phone or on paper/calendars don't work for taking medications (or many other issues!)

Grandma1954 says:

"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,"

Someone DOES need to observe the pills are actually taken. The timed locked dispensers are good, to a point. It does allow you to see if any days were missed, but it does NOT allow you to know if the pills were taken out and tossed or hidden, nor does it ensure that each parent took their OWN meds! Either OP needs to go daily, not every other day, to watch the pills being taken OR OP needs to hire an aide to do the observing. If the second option is chosen, do get the locked dispensers, clearly marked as to which one is for each parent and set the timer for when the aide will be present. There can be multiple settings for each day, if some are taken morning and some at night. DO understand that the aide CANNOT handle the medications - the suggestion above was to have the medication placed in front of them. Aides cannot handle or dispense meds, but they CAN point out that they were not taken and coax the person into taking them... Now that I have written all that, I did point out to another comment that there is no way unless someone is there that you can be sure one person isn't taking the other person's meds. If the timers go off and the pills are taken out before anyone is there to observe/oversee, you will have no way of knowing if the pills taken, if they were taken by the right person or if they were tossed or hidden. Quizzing them won't help. The dispenser and oversight is the only way, unless one places them in AL.

and

"I would not quiz them about hiding or hoarding the medications as they probably have no recollection that it was done."

No quiz, query, accusations, arguments. You have to be the "adult" here and treat this just like kids taking medicine - you can't rely on kids knowing/doing the right thing, or being totally honest sometimes!

Time locked dispensers, clearly marked with their names would help, however it does sound like the point has been reached where someone will need to be there at the time the alarm goes off and the meds for the day are presented. OP goes every other day - can you go every day, at a prescribed time, to watch the meds being taken? If so, skip buying the dispensers. You would dole out and lock up the meds. If you can not go every day, can you hire an aide who can observe (they cannot handle or dispense meds, only watch/point them out.) This is what we started aides for - one hour was the minimum, but other than the meds, mom didn't really need any "help" yet, so I didn't really care what they did for the rest of their hour.

With 2 taking meds and having dementia, without monitoring you can't tell if they take the meds, if they take the correct meds (their own), if they toss or hide them. It is time for some intervention.

Depending on their levels of dementia, they may need more help/observation than you realize. Can they afford AL? Can they eventually afford MC? If yes, start checking out any local places, and when narrowing down the choices, do put higher preference on a place where they can transition to MC in the same facility.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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...

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.

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.

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.

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!

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 🤗

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.

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.

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.

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!

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.

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.

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.

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!