No worries! It was a MLH diary when my dad was so ill. It’s definitely helpful to share!
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This isn’t about my parents.
But my daughter needs us her parents to get genetic testing for her embryos. When we went to the genetic counselor, she only saw the need for my husband to test because of his increased risk for cancer. She didn’t see any need for me to be tested
I talk to my daughter and she is insisting that both of us be tested and it needs to happen now.
I call the geneticist and she will call my daughter to see exactly what we need to do.
The problem is that we aren’t sure and the genetic counselor isn’t sure. And we are playing a big game of telephone.
My point is that everyone sometimes needs to cut out the middleman (us and @compmom) and explain exactly what is needed.
And I second the need to sometimes needing to type these things out. And that they are confusing and complicated for everyone.
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@compmom you are further along in your Mom’s journey than I am with my parents, and I find it really helpful to hear what may lie ahead for our family. Please know that your posts are very welcome.
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Yes Gabapentin is a ‘schedule one’ drug - meaning have to be counted between people carrying the medication lock box of these drugs – and any missing is lots of agency involvement (and government involvement). Wasn’t getting signed off for her. Why someone wasn’t giving her meds is terrible!
Glad some have some additional recommendations for you.
My question is how can they administer Ativan (also schedule one controlled drug) and not see that the Gabapentin and Tylenol had not been administered? On electronic medical records, this would show up; if you have a written log on schedule one drugs, the patient information would have both Ativan and Gabapentin information with the patient’s written records which should be sectioned together with the patient name.
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The hospice meds are separate from the assisted living meds. My mother has a lot of locked boxes in her room. Also the aide seemed to think the nurse gives gabapentin and the nurse thought the aide. Seriously. At this facility Gabepentin is given by the aide so not treated as a schedule one drug. Lunesta is the schedule one drug given by the nurse.
I have a hospice box and the facility has a hospice box so duplication is a risk I have made an effort to avoid and firmly requested they do the same. I have also asked, in writing, that they call me before administering any PRN or hospice drug.
@gouf78 I get that you were serious. At one time the facility made me take my mother to detox. Her dementia caused her to measure and/or count wrong and she was out of control drunk. After that the facility would only tell her that she was allowed to drink in her room. They put it on me to tell her no with a threat of having to leave. I tried nips, I tried diluting, I tried non-alcoholic gin and as dementia worsened I took her to stores looking for gin- when I knew the stores only had beer and wine. She slowly forgot about this option and for a few years went to the “pub” here. They asked me what to do and they dilute it 50:50 with water and give her a second glass of water so she has something to do.
While it seems like a good idea to give her a drink in bed- one of life’s comforts- it will raise the whole issue again. She will get angry that it is only one nip or one drink. She will start demanding more. It will be a nightmare.
Right now if gin motivates her to get in the wheelchair once a month, that’s great. I have a feeling even gin isn’t going to do it now!
Also @gouf78 she does not have an IPhone. She has a little red Jitterbug flip phone. She really cannot learn a new phone. The Jitterbug emergency button cannot be disabled.
@deb922 the middleman issue is exactly why I call the pharmacy directly and go over meds once a month. I don’t trust anyone! The last week certainly demonstrates why.
I
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Just for clarity–Gabapentin is not a scheduled (controlled drug). Its main use is as an anticonvulsant but is also used for nerve pain.
Ativan is a schedule IV drug.
The schedules go from schedule I (no prescribed use–think heroin), and then II (strong narcotics with highest abuse potential) down to IV .
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Actually it looks like you can disable the emergency call on a jitterbug also. Maybe this will work…
To disable the “CALL 5*” button you need to disable the “Lively” app on your device. Follow these steps from your home screen: Select “Options” > “View Phone Settings” > “Android Settings” > “Apps” > scroll down and select “Lively” > Select “Force Stop” and then “Disable”. Once that is complete simply restart the device. After it boots back up, test the CALL 5* button and now it should no longer do anything. If you receive any Android system updates for your phone, I recommend following these steps again incase it reverts it to default settings.
Good luck and please share this info with anyone else you know that has a Jitterbug and wants this annoying “feature” disabled. *Note: Only follow these steps if you want to disable the "CALL 5" button on your device. Do not follow these steps if you prefer to keep the one-press call to 911 or call service (if you subscribe to is). see less
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Don’t be concerned about the ‘play by play’. Many of us have been through the scenario. I fortunately had DH as a sounding board. It’s a tough journey with your parents (or anyone). This board is full great listeners, as well as wisdom.
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Just one more suggestion I found about the phone…bit more low tech.
So my mom also hits this button due to its location. Now this isn’t for all but you can put a piece of foam backed tape over it to stop the calling. It’s the type you use to hang pictures that can be removed. Take paper off one side and stick it on. Test another button first. Just a small piece. Remove anytime they are alone. Not saying it’s always safe but until these people move the button it’s an option. Too many calls to 911.
An aide (non-licensed person) cannot legally give a schedule (controlled substance) drug in many states (IDK a state where it is legal, but it may be in your state) - IDK if your state has laws with assisted living to include ‘trained aides’ for meds that pass a test to be able to do this duty. I know there are training programs for some routine meds to be given by aides, but not schedule (controlled) drugs if Gabapentin is a high enough level ‘controlled substance’.
When this is all over, I would definitely investigate and review with an attorney. You might be able to find enough ‘fault’ to get repayment of some months of her stay during these ‘mistakes’.
An attorney in your state, as well as your own knowledge, can put together what ‘wrongs’ are ‘punishable’. Sometimes it takes a facility their pocketbook to take better care of their residents.
But I also get it that this is assisted living, your mom is a ‘pistol’ and it seems you have to be very involved to get the best care for your mother.
Hang in there!
It must vary as well by facility, in terms of who can stay in assisted living, when things like dementia come up. My mother in law lived in a CCRC , moved from independent living to assisted living When she developed dementia, the facility was very firm with the family that she could not stay in assisted living. She moved to their memory care unit, which provided her with more supervision and support.
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Yes you are right (I edited my other post) - it is a scheduled drug but not a 1; I think it might be a 3 (or maybe a 4 if as you say Ativan is a 4)- but in our state these scheduled drugs are handled similarly in a facility - but some of the rules with assisted living in various states do differ.
Gabapentin is a controlled substance in some states (removed from controlled substance in others) - yes it is used for nerve issues, seizures, and other uses. It is locked with narcotics in skilled care/rehab facilities in states where it is a controlled (schedule IV drug), counted between nurses as they change shifts and go through the medication sheet logs (or if on electronic medical records for this - go through the logs there). This has been true in health care in Alabama. If the counts are wrong for Gabapentin (if still classified as schedule IV like Ativan), it is handled just like if Oxycontin was missing.
Rapidly getting off Gabapentin can cause health issues “Do not stop taking this medicine suddenly, even if you feel fine. Stopping suddenly may cause increased seizures. Follow your doctor’s instructions about tapering your dose.”
With research I have found that in some states Gabapentin has been reclassified as Schedule V - so that may be the case in this lady’s facility/state.
"Gabapentin is not a narcotic. It’s not classified as a controlled substance in most states. (Kentucky, West Virginia, Michigan, Tennessee, and Virginia have reclassified gabapentin as a Schedule V controlled substance). "
Things do change. I am BSN/RN but now retired.
Aides give gabapentin here but both nurses and aides seem confused about this and so neither noticed the omission until I asked about it. There can be withdrawal and it needs to be tapered but at least my mother was at a low dose.
I asked the charge nurse today if my mother got gabapentin last evening (because she woke up at 1am) and the nurse said “I have no way to access that information.” I asked what dose Tylenol she has been receiving (before the 8 day omission that has brought back pain) because the doc ordered 2,000mg and I had worked with hospice to reduce it to 1,000mg daily but maybe that never happened. Again, the charge nurse did not know and could only find a record of the dose in early June. I rely on the pharmacy most of all for dose but they don’t know what was administered!
This is an elegant, expensive place that a lot of wealthy folks from north of Boston go. It is smallish with 68 residents. Understaffed and the aides are not treated well (they have told me on occasion- we are like sisters! I am discrete.) Aides are paid by task, not time, and we are charged by task, not time. So if someone says “Do you want a shower” and the resident says no they can walk away quickly and the pay/charge is the same as if they spent time. I don’t blame them for not spending the time. It’s a bad system, with good people (aides and nurses).
Honestly a good proportion of the residents need memory care. I end up directing people to their rooms 
Memory care is only offered for the benefit of the facility in terms of liability: falls, wandering and sometimes burden on staff (Like my mother!). My old school sports coach is here and both she and my mother talked about leaving and going home, yesterday. My coach packed her bags and put them in the hall (sometimes she goes in the hall just wearing Depends). I joked with staff that they should get an apartment together!
Before COVID I was in the process of moving my mother to a wonderful memory care only facility that was, at least on the surface, very impressive. All staff trained, all activities geared to memory care, and the physical building design was also geared to dementia. Now that COVID restrictions have eased (if not COVID itself) my mother’s health is too far gone to move. They would not accept her. This AL is committed to her at least because she has been here 7 years.
I would absolutely document everything (with date) - like the head nurse not having access to what medication (under their control) was given or not given. You can probably go back through your CC posts and put a lot of information together.
But I would wait to do anything about it until you mother is not longer there (when she is deceased). Then I would ‘suspend’ any automatic payments to the facility and talk to a great lawyer specifically who can handle this kind of an issue. A strongly written letter by an attorney may have you save some money in the end, and they may consider the billing ‘paid in full’.
Miraculously, with restored meds, got her down to the pub for gin, then outside where we watched two hawks and babies flying around. She had ordered dinner in bed so I brought it down to the garden and she had a “picnic” in the light breeze. This happens rarely and is already a nice memory.
At one point she asked me when I decided to move here and I told her I didn’t live here. She has these moments and then she knows who I am.
The hawks were beautiful.
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That’s wonderful!
This may not apply but it’s a heads up for anybody dealing with this.
Something I was very glad to know ahead of time was sometimes a person will “rally” in their last days.
I actually called all my family members and informed them that dad was going in the next few days so show up now or never. They all showed up (also a miracle!). And then he spent three days “holding court” as I call it. He had a ton of energy, was very alert, ate, drank and listened to all the stories being told by family in the room. And told a lot of his own stories. It was great.
And then the energy disappeared and so did he. But it was a gift.
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This happened with my mom, as well. It was such a blessing to have her more fully aware for a short time.
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I have heard this from friends, and it was part of the training for volunteers at our local hospice. Of course it occurred to me today I also know that tomorrow she will be exhausted and barely able to talk. That happens after the rare times I can get her out. But that is a longstanding pattern at this point.
Agree. My father had what came to be named the “dress rehearsal”. Blood counts deemed 24 hrs or less terminal, what no one, never mind him in failing health at 92, could overcome. “Tell cross country sibling to take the red eye and let him know he may be too late.” Hospice rallied, music played, sib and I said everything we needed to. We sat vigil. My father perked up, was more alert than he had been in months. He told animated stories again, in spite of severe memory loss. After 4 “festive” days, puzzled Dr re-did blood work. All relevant numbers had improved significantly. “Rarely happens.” He was still a frail old man, but the count down clock was re-set. My father died a month later after he told me how glad he was to be where he was, closed his eyes and was done 3 days later. Told sib no need to travel. It had all been said the month before and father was currently non-responsive.
My take away: when the time feels right, consider creating your version of a dress rehearsal. Say it, share it, put favorite music on and see if your loved one responds. bring a nibble of a family favorite, laugh. If nothing resonates, that’s okay. It’s bigger than all of us. A few special minutes can mean a lot.
Best to everyone here. Your efforts are remarkable and impactful.
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Just a personal story–Many times dying people see or talk to loved ones who have passed which can be disconcerting or comforting depending on how you interpret it. My dad had a few hallucinations in his final weeks but was totally “with it” at the same time to the point you wondered about just everything. It was all so real. During his final “rally” with everyone in the bedroom talking he said “Mom (my mom) just peeked in at the door but she left.” My heart jumped. That would be her. A couple days later he announced she’s come in the room and now at the end of the bed. And at the risk of sounding crazy I knew she let us have the extra time with him before coming to get him.
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