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 )😬.
"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.
"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!)
"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.
"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!)
"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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
I'm sorry that you had to quit your job to care for them for that will hurt your own retirement.
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!
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?