My father is in his 70s and is hiding his insulin dosing from his caregivers. He’s giving himself too much insulin at times and sometimes forgetting the steps to use his insulin pump. He’s clearly trying to prove he can still be independent.

What suggestions/protocols do you suggest we put in place for insulin dosing and the caregivers?

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I agree with everyone here who says he should not be administering his own medications! You need to take away his access - despite any argument from him. He is not in charge any more!
Any concern you have about letting him feel good, and feel independent should be replaced by concern that allowing him to continue like this will result in serious medical complications!

Figure out a way to hide the medications from him, that is accessible by a caregiver to administer. And keep a chart, indicating what was given and the date and time. Keep in mind, if you are hiring CNA's for his care, there are legal limitations regarding who can administer medications. His family may take charge of it, but when hiring outside help, only a trained medical technician or nurse can do this.
Helpful Answer (1)
Reply to CaringWifeAZ

Talk to his doctor. Ask the doctor to put him on a daily dose of a combination insulin 70/30, 50/50, or some other combination of short-acting and long-acting insulin. His caregivers should then test his blood sugar before every meal and at bedtime to make sure his blood sugar levels stay stable. Ask his doctor for a sliding scale coverage of short-acting insulin that his caregivers can use when his blood sugar levels are not optimal. Then, lock up his insulin so only his caregivers can get to it.
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Reply to Taarna

Lakegirl2: He should not have access to his insulin since he is unable to dose himself CORRECTLY. Inform his physician posthaste of this situation.
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Reply to Llamalover47

He likely needs 24/7 care.
He shouldn't have the insulin.
Someone needs to give to him.

Some caregiver agencies do not allow their employees to administer meds.

Yes, he will continue to behave in ways to feel independent - and maintain the independence he either feels he has or is in the process of losing. He can be doing both at the same time.

What I would do:

* Talk to him. Ask him how he feels (about decision making / losing independence / keeping-hanging on to it)
- Give him a forum to vent and discuss how he feels.

* Take charge. Clearly, he cannot manage this area of his care need himself.

* Expect he will 'kick and scream' or react in anger, disappointment, and try to convince you "Yes, I can do it myself." Rather than say "NO YOU CAN'T ... perhaps say xxx will ASSIST you to get you stabilized ... or something.
- It is often a dance between managing care / setting boundaries and showing compassion, not arguing. This is (from my experience) 'learning as you go" - While I studied with Teepa Snow (dementia on line webinars for 2 years, it is a different scenario when actually working / being with a person.

"Book" study 'helps' understand that the brain is doing what a brain does when the cells die. In person, it requires boundaries and compassion(ate care) and thinking on one's feet in the moment -

This is WHY I love this work with clients and my family-companion of 20 years - it can be challenging and yet requires 'compassionate thinking' on the spot.

When asked a question I don't know how to address, I have often said

"That's a good question, I'll have to think about it ... and get back to you."

Perhaps Try the: 'just this time" so he doesn't feel this is a forever change. Although it will be. He cannot do this himself.

Just be sensitive in how you convey this change. If he thinks a door is left open for him to manage doing himself, he may respond better / feel differently in the moment. And, the key is IN THE MOMENT. All this is always in the moment.

He won't be happy. Do not take it personally.

If caregivers administer, MAKE SURE they will do what is necessary and not be bullied or intimidated by him / his responses.

Gena / Touch Matters
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Reply to TouchMatters

At the risk of sounding morbid, perhaps the father does not want to go to his death with dementia, becoming completely dependent on others, and is consciously or subconsciously letting high dose, too much, take him sooner than later. Forgive me; just a hunch. The suggestions to place him where his meds are monitored sounds best.
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Reply to Santalynn
Debmiller May 2, 2024
SannaLynne, Me thinks Advinn is confusing his/her personal issues and projecting on you.

I don't know much about diabetes, but it sounds like dad's needs for help are changing. You or another responsible caring person needs to spend some time with him to bring his care up to a level that matches his changing needs.

I had a relatively minor wakeup call regarding med management with my husband this week. He has a "bad back" that flairs intermittently. One morning he told me he got up and took the "blue pill". That was Naproxsyn, which he is not supposed to take. Tylenol only per his doctor! And, I have no way of knowing for sure what or how much he took.
Thanks to this post, I am going to get a lock box for all of our meds.

AdVinn, there are so many benefits to forum members beyond direct problem solving or advice to the OP!
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This is a No-brainer, the facility should be handling that and this column should not be or allow crowd sourcing for the medical field, motivation of the patient ok, But not.
The handling of the meds.
The handling of medicine. That crossed the line. Want to become an Angel of Mercy??
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Reply to AdVinn
LoopyLoo May 2, 2024
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If he has been managing his pump for a long time there could certainly be some “proving” or hiding going on but there is very likely some fear of not having the control as well. As a type 1 diabetic he I’m sure is all too aware of what happens and what can happen if his blood sugar gets extremely high or extremely low and making himself so totally vulnerable to caregivers is a very scary thing. If he has a CGM (and he should) I know my Moms at least sent reports to her endocrinologist so they saw if she was having highs or lows and would contact us about that or at least discuss it at her 3 month visits so I would urge you to contact his endo and let them know your concerns so they can bring it up with him as their concern and maybe brainstorm another safeguard.

I can tell you what we did progressively with our mom. She was a type 2 so a little different but she managed her diabetics so poorly for years that she not only had other issues as a result but it became necessary for her to be treated as a type 1. When she first got the Dexicom our lives and her management got much better because we were able to see her blood sugar in real time as well and could set notifications for highs or lows while we could still contact her to correct them. For your dad it sounds like this would be more of a back up for now but it would be his children following his numbers and reminding him rather than a non related caregiver and if it got too far it sounds like there would be a caregiver with him who could give him glucose for example, at your direction, if he wasn’t able.

By the time Mom got an insulin pump she wasn’t able to get into her phone never mind figure out a bolus. The Omnipod, which is what she had, at least required a code to get into the app so that made it harder for her since she her dementia was such that she couldn’t remember the steps. The pump meant she needed someone with her even more of the time too which wasn’t a bad thing but because we had the Dexicom info all the time we could see things trending in the wrong way and that made it easier to work with caregivers for us as well. Her caregiver would always call (me mostly) when one of us wasn’t around to go over what she was eating and how many carbs or how much of a bolus to give her and she felt comfortable with the fact that we were overseeing it and making the decisions. Yes this required one of us to be available for inputs but it made all of us more comfortable and it allowed for multiple back ups, my brother and I often consulted on what to give her. Maybe you can start to work into consulting with your dad on it so he can “train” you for when he is no longer able to do it for himself. One thing that did sell Mom on the whole thing was not having to prick her finger and give herself shots (which started to often miss) anymore.

Good luck this push and pull between independence and letting go is never easy.
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Reply to Lymie61

I have had Type 1 Diabetes for over 30 years and use an insulin pump and a continuous glucose monitor. First, giving up control of his insulin dosing may be very difficult and scary for him and he may have never been able to trust others to help him with that. If he has made it to this point in life as a Type 1, he has had to be extremely vigilant in taking care of this aspect of his life and done a helluva job. As for the pump, all the ones I have used can be locked to require a password. His caregivers will need to become experts in insulin dosing, what to do if he gets too much or too little, etc. That last part happens no matter how vigilant we is not an exact science. And finally, if he does not wear a continuous glucose monitor (like a Dexcom), medicare covers it, and he definitely should and have it monitored by a vigilant caregiver. It can help make dosing decisions, and may well save his life.
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Reply to Slavetomydog
TouchMatters May 2, 2024
Thank you very much for this. It is extremely helpful to all of us. Gena
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For starters, his insulin and all other medications should be kept in a locked strong box. People with dementia should not have any access to medications nor should they be reponsible for any. Someone should be giving him whatever medications he takes and doing his insulin for him.
Make his meds inaccessible and start administering them yourself or get homecare to come.
Helpful Answer (6)
Reply to BurntCaregiver

He cannot have access to medications any longer. His caregivers must provide medications at the appropriate times and keep them secured from him at all other times
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Reply to Daughterof1930

Someone with dementia should not have access to medications and should not be medicating themselves. If he does not have people with him full time that can give his medications and test him as needed, he should move to a facility where they have staff to do that.
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Reply to Jamesj

My dad was diabetic, I don't have an answer for you but I do hope you know how dangerous this is and has to be figured out asap
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Reply to Anxietynacy

Memory care is needed in a place where all of his meds are handled by the nurses and med tech
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Reply to MACinCT

I wouldn't assume he's trying to "prove" anything. Early symptoms of dementia can be memory loss, confusion, "stubbornness" (diminished logic and reasoning skills), and paranoia.

He now cannot be trusted to manage his meds at all, so he either needs an appropriate person to do this for him (a qualified in-home aid and the meds not kept where he can find them) or he goes to AL and pays for meds management service (which often is an "a la carte" extra expense). IDK how it would all work with an insulin pump, maybe he doesn't use one any more so that he won't overdose himself.
Helpful Answer (7)
Reply to Geaton777

With type I and a pump it is crucial to discuss this with an MD.
Go with your father to his doctor.
A failure to make the decision for more care (if needed) could result in death.
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Reply to AlvaDeer

If he cannot control his diabetes may be time for an Assisted Living wherevhis medscwill be monitored by a Nurse.
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Reply to JoAnn29

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