Hey guys - I am guessing some of you have gone through something similar with a relative and might have some good suggestions. One of our friends has a parent with mild dementia who also has insulin dependent Type 2 diabetes. The parent’s caregiver (other parent) is in the hospital and the prognosis isn’t all that great, meaning that our friend is trying to help their parent set up a system but is struggling. The diabetic parent ended up in the hospital last week due to an insulin overdose and in the last couple of weeks has also messed up basal and bolus insulin. They aren’t in financial shape to afford a facility and they have too much to get much help from the state, soooo…we are working hard to educate our friend on how to manage diabetes, but would love your help on suggestions on what has worked in similar situations you might know of. Any help is appreciated i.e. books, sites, strategies, etc. Thanks for the help.
Wish I had better advice for you, but options are limited without substantial costs. Perhaps the best is setting up for friends/neighbors to share the duty of doing the insulin shots with a central coordinator. Alternative is a form of concierge medicine with an LPN or similar that could do it. All of this is predicated on a routine meal schedule with no/limited snacking. The dementia angle, depending on the severity, makes either problematic.
My mom had a stroke and dementia and was fortunate my dad did everything possible to keep her “home” but finally he couldn’t do it by himself. They were in a CCRC at the time and he had to move her to the skilled nursing portion. They saw to all medical needs and they’re contract limited the costs, but still ran thru both of their portions of longterm care insurance over a five year period (I assume you friends don’t have it).
Sadly I agree with @TomH . I tried to take care of a T1 friend with Dementia with the help of several neighbors and close friends of his. It worked for a short while, and we were able to utilize a version of XDrip with a CGM and a follower program at least until he became violent towards others and eventually towards himself at night. The Dementia is most likely going to be the major hurdle, especially as it continues to progress. Sorry I don’t have any better suggestions.
Story time:
I have an aunt (by marriage) who had a stroke while pregnant due to the fertility drugs. The baby made it through okay, but my aunt’s stroke happened in a region that controls self-control among other things. She ended up being an adult sized three year old who was obsessed with food.
My uncle tried to care for her at home. He installed a lock on the fridge. His sisters all took turns coming to sit with her all day. He had to install locks on all of the doors that could only be unlocked via key from inside bc she would break out and make a run for it to the county road to hitchhike if she didn’t like whichever sister was babysitting her. That became the mark of which sister was the least annoying…i.e. who didn’t induce the stroke patient into hitchhiking or calling the police. That happened. More than once.
So she ended up being put in a facility once she became too dangerous for the little kids in the house. And then got moved to a less nice facility bc she was stealing too many trays of food from other patients and threatening people.
ANYWAY…
Are they able to meal prep for the week and box up each allotted meal and snack, labeled with the corresponding dose? Can they call and spot check throughout the day for how it’s going? If the person uses insulin pens, could they put pen needles in a timer driven pill box that opens up at each pre-set time with a fresh pen needle as a reminder to dose and eat?
So sorry to hear about this. I always kind of worried about if this happened to me down the road. Definitely a tough confluence of conditions.
Thanks @TomH, @elver, @T1Allison we are going to try and work with our friend to create the most workable plan, understanding that this is a difficult situation. If anyone else has any thoughts, please do share them. Our friend has been thrown into the deep end of a situation and has to try and make the best of it.
What about frozen lean cuisine or Atkins meals? The advantages obviously being ease of prep and all the carbs, etc are listed.
When I was basal testing and bolus testing all over again when I was troubleshooting my podding, I had prepackaged everything for ease of counting. My fridge and cabinets looked like I was running an illegal daycare in my house or something.
Would a timesulin pen cap or similar help to track last dosage time/dosage? It’s not infallible, but it might help. You can still get them shipped to US or find them on EBay, and the batteries are actually replaceable (even though they claim otherwise)
Yes, the timesulin cap sounds like an excellent idea, and the frozen meals makes sense.
Is there a cap anyone knows of that connects to the internet, i.e. a caregiver not at the house would know if they took insulin?
May not be best for bg control, but I survived 20+ years taking only Lente once a day. Tresiba would be better alternative.
Then maybe a single mealtme at largest meal.
My mom, also with dementia, 90 yo is type 2 but just oral meds. She uses a med dispenser similar to this on Amzn. Maybe put a note instead of pill in this, to remind to take pen injection and dose.
LiveFine Smart WiFi Automatic Pill Dispenser | 28-Day Medication Organizer Up to 9 Doses Per Day for Care Monitoring with Locking Key, Adjustable Light/Sound Alarms
Another helpful thing at my mom’s is a white board with key reminders of things for current week/month.
That is a pretty cool unit. Also thinking about a single dose of Tresiba with only one meal time dose a day might be workable. I need to gather some more info, and we are having a diabetic basics training session on Wednesday, so I can get more info.
Here’s another device I gave my Mom. A digital clock with time and other info.
Many variations on amazon.
So, my dad has dementia and has had type 2 for 25 years. He is on hospice care because of heart failure.
He no longer takes any blood sugar medication, whereas before he was taking several pills a day. We just decided that targeting an A1C was pointless in his condition, and funnily enough, his blood sugar actually improved to pre-diabetic levels, and more importantly he seems to be doing better just taking less meds – so good that he may get kicked off hospice.
Part of this is my mom is pretty diligent about giving him low sodium, low fat, kidney-failure and coumadin-friendly meals Which is a lot. But clearly some of it is just having fewer medications.
So my first thought is whether this person needs insulin to stay out of DKA, or do they just need it to keep their numbers in range? The A1C targets for a person who is over 80, for instance, are incredibly high, and it’s possible this person could get by just taking pills every day – something with less risk of hypoglycemia or at least dosing mistakes, which can be really devastating for older people who are already experiencing dementia.
Barring that, I’d wonder if he could get by just taking basal insulin by pen every day. If you get a wifi-enabled smart pen, the son can keep track of his boluses. You could also use FaceTime to do the bolus every day, to make sure it’s being done properly. (My dad can’t use a cell phone but he can answer a FaceTime call on an iPad.) His blood sugar will be too high. But if he’s over 75 and getting enough insulin to avoid DKA, it’s not clear that will shorten his lifespan or reduce his quality of life a ton.
Finally, I’d see if he can simplify or reduce any of the other medication this person might take. Someone with dementia will struggle with keeping track of lots of pills, and though each one might have a low rate of side-effects, if you’re taking ten, the odds are you may have some. And it just increases the risk of messing up something.
Also, I like the idea of microwave meals, but they should be careful to find some that have lower sodium and lower fat – My mom has found a handful at Trader Joe’s that aren’t terrible. I would say a big part of my dad no longer needing blood sugar medication is that he is now 100% compliant with a strict diet, whereas before he was more like 70%. I also subscribe to a salad delivery; I am wondering if there’s something similar with nutritional information, but for whole meals. This may be out of budget, but often these can be tailored; I found a list of diabetic meal delivery kits here:
All good thoughts Tia, thank you. We are talking live with our friend tomorrow, and everyone’s suggestions have been helpful in preparing my wife and I to provide proper information to our friend. I will give a general update as things go, so people can offer additional thoughts, or just learn more.
I don’t have any experience (as yet) with dementia, so do not have anything practical to add, but I hope all the fantastic contributions will help your friend, Chris. It sounds like a very difficult situation.
While not the aim of the thread, this has been helpful in id’ing ideas of potential use for many of us older folks, either for ourselves down the road, those we live with, and friends yet to be made. Thanks to all for the suggestions!
@Chris I was looking thru the latest Costco mag and found this: https://www.costcoconnection.com/connection/202201/MobilePagedArticle.action?articleId=1755838&app=false&cmsId=3980014#articleId1755838. I remembered your post and thought some of the apps/devices in it might be of some help for the situation you described. Hope something is helpful!
Thanks Tom!