Taking control of medication management - early stage

wizmo · January 1

Long story - mostly venting but all suggestions welcome.

Mom 85 has unspecified dementia; cognitive tests indicate Alz but amyloid PET scan was negative so could be vascular or other type. Mom has taken the negative PET result to mean Alz was "misdiagnosed" and therefore she is "well". Short term memory is in obvious decline. She has lived independently until now but failing on multiple iADLs. Her 3 adult children including me all live out of state; I am closest at 6 hour drive or 1 hour flying. During a brief visit I expected to be routine, I was alerted by one of her friends of dramatic changes in recent months. My wife suffers from EOAD, now 20 months in MC, so I have seen the full cycle and recognize many similarities in mom.

As I started digging deeper into everything I could see her medications were not being managed properly - total chaos of pill bottles left open, scattered in random places, abandoned pill organizer boxes partly filled and partly consumed from unknown time with unknown mix of pills, some supply bottles empty/missing and not refilled timely from pharmacy.

I immediately seized control by rounding up all supplies, disposing of unknowns, requesting missing refills from pharmacy and/or doctor, establishing new pill box organizer and refill schedule. Since I cannot be there continuously, short term get-well program is in-home healthcare (medicare funded) but they can only stabilize the situation and exit in 60 days with family / private provider to take over. There was already one incident she forgot having taken evening pills, comes to me with next day's pills in hand asking to confirm these are the right ones to take now. Obviously corrected her but if I were not there she would likely have taken double dose. I have no idea if this has recurred, obviously it could on any day.

One of my solutions was to put all the bulk supply/refill bottles in a locked safe that mom cannot open. Only nurse can access for box fills (biweekly), or unskilled caregiver (3 days/week) can open to retrieve pre-filled box (week nurse is not there). A hiccup in scheduling caused her to run out and be left with an empty box for 1 evening. She cannot fall asleep without evening meds (trazodone+gabapentin), called me in a panic at 3am asking for combo to the safe. I pretended to have forgotten it in my sleepy state. I told here it was not considered a medical emergency and she would be ok for 1 night insomnia. She was extremely agitated, used the extra waking hours to tear apart contents of many cupboards and storage areas seeking a potential stash of pills that never existed. She also is capable enough she called some emergency doctor who agreed to order 14 day supply of ALL meds for next day pickup. She cannot drive so has not collected, and I'm intending to call pharmacy to cancel this. Caregiver arrived next day to get normal box out of the safe and crisis over for next 7 days. Caregiver comment was a tornado had visited the house and was beyond the scope of her services. Sisters will visit next week hopefully to restore order.

Mom is insisting on having access to pill supplies, threatening to fire everyone involved. I have financial DPOA and secondary healthcare POA (sister is primary). Mom has not been declared incapacitated nor started conservancy process (way too soon), yet she is extremely vulnerable. I'm bargaining with her for some intermediate solution like having a spare 2 day pill supply or just the most important evening dose she can access if there is another hiccup. Problem with extras is she feels free to self-medicate in the middle of the night if she cannot get back to sleep. Doctors have been non-committal in most of my requests for family support, other than getting approval for the temporary in-home nursing visits.

Apologies for long winded story, grateful for any comments.

Anonymousjpl123 · January 1

I am so sorry about this stress - and for your wife and mom both coping with this horrible disease. Your mom is lucky you knew the signs - you very well may have averted disaster.

I think it’s an awful lot of work to have to manage meds with so many different caregivers and the lock box, especially from so far away. I totally get it and I’m glad you have siblings who can pitch in too.

The one thing I would say is that your mom will soon not be able to manage her medication at all. Is there possibility of having someone come twice daily to give it to her? I know sometimes it’s hard having DPOA and medical POA split, but I would plan for having daily med management at some point, probably soon. I know this is awful and probably ridiculously expensive. I wish I had better advice, but I would just say the peace of mind may be worth it.

ARIL · January 2

I am so sorry about this, and about the stress it is causing for you and everyone in this situation. You know already from sad experience: your mom’s days of living independently are nearing their end. I fear that the med management that requires her involvement is not going to work; it’s good you have the 60 days of assistance. In that time a new way forward can be charted.

A few years ago I tried to manage a PWD’s meds from multiple states away. I hired help; I got friends on the ground to promise to go and assist; I went myself every few weeks. I walked into situations not that different from what you describe. I looked into devices and lockboxes… I wouldn’t say all this failed entirely, but it failed mostly. I’ll spare you all the reasons why—it’s enough to say that there were always too many moving parts, and I could not control the actions of other people.

My parent WD has been in MC for 20 months. As you know, that is not a perfect scenario either, but the meds are done right, every day. I now can sleep at night and do not wake up in a panic.

You are carrying a lot. It is my impression that you are thinking remarkably clearly and acting compassionately. Your mom needs a different situation with consistent care and someone else managing the meds. You know that.

Feel free to vent. We are here for you.

Quilting brings calm · January 2

Have you considered switching her to a pharmacy that will do the blister packs? These are pre-packaged with the date and time of day to take them printed on the packaged group of pills. So she can just tear off ‘ Friday 1/2/26 noon’ and take whatever pills are in there. This won’t work forever, but it’s a start.

psg712 · January 2

What a dilemma. I too tried to manage my mom's situation from a distance. The only thing that worked for her safety and my peace of mind was moving her to a facility close to me. Since you have been through it with your wife, you know the process. Would she be able to move close to your sister with the healthcare POA? You already have a heavy load.

JulietteBee · January 2

I am experiencing the exact same thing. My mom however, is arguing vehemently that she IS taking her meds every day as ordered. As dementia causes loss of reasoning, she fails to understand if a 90 day supply of a once per day med was filled in July, there is ZERO possibility she would have over 2 dozen pills still remaining in early December.

I physically cannot go over every day, twice a day, to give meds. I set up Alexa with reminders. She forgets to follow through on Alexa's messages. Her PCP agrees she needs help coming in at least twice per week. Mom declares she needs no help.

I told my DM that if I have to have another talk with her about meds being forgotten, I am hiring someone without further discussions with/input from, her.

As adult offsprings, we have to now accept that we are the only adults in the room. The room is filled with our charges who have reverted back to being rambunctious preteens. 🙏🏽

H1235 · January 2

If there is a signed DPOA I’m not sure why conservancy is necessary. If she is not capable of managing her medication and tore the house apart looking for pills, I would think she is not competent. Since she is not capable of recognizing her limitations she could easily put herself in danger while alone in her home. Taking too much medication is not to only danger you need to worry about! She could start a fire on the stove, fall down the basement steps, let a stranger into her home, decide to climb on a chair to change a lightbulb, what would she do if there was a fire. The DPOA should allow you to get her into a safe place. In my opinion she is not safe where she is. I have attached a staging tool. Notice that at each stage it gives a recommendation for care.

DBAT.pdf

alzheimers-dementia-home-safety-checklist.pdf

Anosognosia and Dementia - AgingCare.com.pdf

DJGS · January 2

My mom is vehemently opposed to anyone helping her with meds. The meds are the last bit of independence and it’s now being taken away from her due to accidentally taking too many pills. Some caregivers have to deal with taking car keys away but managing their own meds can also be a source of independence similar to driving.

It’s a constant battle and I too, am looking for suggestions to calm the situation and prevent the daily fights.

wizmo · January 3

Thanks all for comments. This hiccup was a bad night of insomnia and will soon be forgotten. I realize it's going to be increasing supervision, some direct from family and mostly remote+hired. If she or any of us could move, we would. We have always planned for her to age in place. She has hired help 3 days/week and they monitor/record compliance with meds. She should never get more than 1-2 days off and I'm told that is not a huge problem; it starts to get bad if she stops taking some of them for 3-5 days in a row or double-doses. As needs increase we'll be going to more days, more hours, someone there to administer meds directly, 24x7 for safety. Then at some point in-home staffers will say they cannot handle it 1:1 and it will be placement. Or she will die from a heart attack tomorrow and we will have different problems.

jh40926 · January 5

There are these amazing med wheels that distribute with timed alarms and are locked so over dosing would be extremely rare. Your loved one might hate it at first but it's a much better option than having meds forgotten or overly accessible. Ours has a morning and evening alarm for doses, works great. Can order on Amazon easily. Good luck!

Taking control of medication management - early stage

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