Pumps in assisted care

I need some info from those of you who are in, or at least familiar with, retirement communities, especially those that offer assisted living.
My wife and I are starting to look into such now, about 10 years before we expect to actually make the move, partly because we have no children or nearby relatives to do it for us; so we’d better know what we’re doing before we have to do it.
My question to the reps we’ve talked to: is your medical staff acquainted with insulin pumps, and when I’m no longer able to do it myself, can they replace my infusion sets every three days and my CGM every 10 days? One rep said she didn’t know, and would find out and get back to me (this was several days ago, and I’ve not heard from her). The others all assured me their staff was competent and could do this; one told me they had 2 or 3 people on pumps, and the nurses/doctors were taking care of things just fine.
But the marketing reps tend to be more positive than is perhaps warranted when confronted with detailed questions like that. So I’m turning to the experts. Are any of you familiar with the setup in a multilevel community for us oldsters? Is the medical staff familiar enough with pumps, etc., that you would or do trust them to take care of yours? (When we’re closer to a move, of course, I plan to talk to the heads of the medical staffs themselves, but not yet).
Of course I plan to keep doing everything myself until my hands fall off or I forget how to do it; but I think I need to consider the possibility that I may not be able to do it until the end, and prepare myself for that. I’d hate to go back to MDI.
Just for the record: I’m 75 now, in pretty good shape physically and mentally, and plan to stay in our (very nice) apartment for quite a few more years. I’ve been T1D for nearly 62 years, and on a pump for over 20.
Thanks for any suggestions or advice!
–Keith

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I am 81 years old and hope to never be in any of the nursing/assisted living communities. Sorry to be blatantly negative. Mother was in one for 6 years. All went well as long as she was able and in control of her medications and what she ate. It all fell apart when her cognitive powers deteriarated at age 91. She died a year later. She did not have a pump. However, no one, including the doctor who attended her knew anything about diabetes. My non-diabetic husband was in a facility for 14 months before he died at age 92. I often saw residents line up at the nurses station before mealtime to get their shot of insulin. No attention was paid to matching carbs they would ingest. No one was on a pump. The health workers in these facilities know nothing about diabetes management and simply follow a doctor-mandated insulin quantity. The doctors know little to nothing about diabetes management either. I was appalled at what I observed. Luckily, my daughter moved into the other house on my farm a year ago and I trust her implicitely. Do not believe them when they say they can manage your pump and CGM. Make them prove it to you with a demonstration. With the many different pieces of equipment and apps available, even my CDE of over 20 years has trouble figuring out how my Tandem and Dexcom work. I would not depend upon any of them. I wish you luck.

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I have been a type 1 for 63 yrs and am 71. I think about the problems, that come with living in assisted care, at times. My parents, who were both fairly healthy, lived in assisted care for at least 2 yrs. I was there with them almost everyday for several hours a day. I wasn’t impressed with the nursing care at this upscale facility.

I have never used a pump and I hope that I will be capable of giving my own insulin for many years to come. The thought of living in assisted care is frightening.

I wonder if you could hire a diabetic educator, who has knowledge about your pump or is willing to learn, to come and help with your pump. Maybe the nurse on staff at the nursing home could be taught how to help you.

Once I lose the ability to figure out my insulin needs, I hope that I will be able to find someone to help or maybe I will just figure that I have had a good run and call it a day. I have almost always been my own diabetic doctor and I don’t know who I could pass the responsibility of taking care of me on to. It is a scary future. Our son would be willing to help, but he certainly couldn’t be expected to come to the facility several times a day to give me insulin. He could change a pump and a CGM though.

I find it much easier to just not think about it and hope for the best. As the years pass, I will be forced to make some decisions. It is difficult when we don’t know what the future will hold.

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I don’t have experience with this or the current state of facilities, but just want to point out how quickly our technology is evolving. We’re very close to our first commercial fully-closed loop pumps. Meaning no more bolusing, no figuring out pump settings, etc… I imagine the first models will be rough, but I would expect pretty spectacular results in the next 10 years or so. While I wouldn’t want to be in someone else’s care right now, in the time frame you’re considering, it should be a very different and promising scenario.

Installing sensors and infusion sites is easy. Any caregiver can be trained to do that. It’s what to do with them that’s the troubling part, and that’s what the forthcoming innovations will alleviate.

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You paint a much rosier picture than I see Robyn. In ten yrs Keith will be 85 and I will be 81. Ten yrs goes by so darn fast. I hope that you are correct and the technology will be greatly advanced and easy to use.

At least by that time, I won’t feel I will need as tight of control as I have now. I just don’t want to develop diabetic neuropathy.

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I know that I have a different view than most, so tak this with a grain of salt.

I don not want to live in a vegetative state. I also don’t want to live in a way where all my needs and decisions are made for me.

I plan to go out like I cam in, in a screaming blaze of glory.

Seriously though, I want to live on my own or with my spouse as long as we can, and then walk off into the sunset and commune w nature.
Nothing about respit care or palliative care or even retirement life is at all palatable for me.

I don’t mind if others want that, but I do not. Looking for the exit if it ever gets like that.

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The one person who I knew was in an assisted care facility and had a pump was not able to keep it. That is not a final word, just the way it was for her.

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I am 72, have been a T1D for 50 years and just (as of June 1 of this year) moved into the independent living section of a continuing care senior community. That means, it’s a lot like being in an apartment now (with some meals and housekeeping thrown in), but if/when I need more support, there is assisted living, memory care, and skilled nursing. At this point I’m fully capable of managing my pump and CGM … so I can’t speak to how that will be handled. Certainly the mechanical aspects of sensor changes, cartridge and infusion set changes, etc would seem to be a comparatively simple mechanical exercise … check with me in a few years to see if I was severely deluded on this score.

A couple of comments:

In many parts of the country, it is not uncommon to have a 5-8 year waiting list for the better facilities. If you are looking at a place that DOES NOT have a waiting list, I suggest you find out why …

Any of the “continuing care” style facilities have a minimum health requirement before they will accept you. While being a T1D or T2D typically WON’T disqualify you, unexpected health changes CAN preclude you from moving into a continuing care facility. Of course, there are assisted living, skilled nursing, and memory care facilities that will still take you … if they have room.

Just as everyone’s T1D is different, we each have a different view of how and where we want to age …

Note: despite living in an “old folks home” in NM, I spent the first 3 weeks of this month in the Galápagos Islands, spent last weekend in Seattle, and drive to Coronado, CA tomorrow … I certainly don’t view myself as being warehoused …

Happy aging, my gray-haired friends.

John

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I don’t have anything constructive to add, but I am 35 and do not have children. I think about this a LOT already. I know the landscape will change in the next 50 years but it’s nerve-wracking. Thank you for bringing this up!

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@Allison1

Here is my prediction: even if there are not things like widespread beta cell transplants or other “cures”, I predict that long before you are eligible for senior living CGM sensors coupled to integrated dual channel glucagon/insulin pumps will be so good that even assisted living will gladly support them in the same way that they support hearing aids, walkers, and scooters today.

In my case, even in independent living we have an on-site nurse in the evenings just in case of an emergency. I think that I need to be proactive and go talk to this person now, long before I need help (I hope …). in hopes of familiarizing them with my pump and CGM so that is is not such unfamiliar “techie stuff”. My guess is that type of grass roots education in LOTS of senior living facilities will be helpful in getting this stuff more gradually accepted and supported in these facilities.

I applaud you for thinking about these things when you are still young. You would be surprised to know the number of people that are older and more infirm than I who choose not to think about options for their living situation …

Stay safe all.

John

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Marketing reps… I’m in marketing so I can say this… promise you the world to get you to sign. They’re doing their job to get you to sign.

Regional healthcare disparities in the US are sadly real. It’s better if you’re in a healthcare hub vs rural area, but still, there’s ongoing issues with care.

Twenty plus years ago when I was caring for my elderly grandparent in a mixed facility (long term care and ‘rehab’), the care level was poor in a ‘new’ facility. This was in the Northeast, well-off area/population, and next to a major teaching hospital. The building had all the glossy marketing features (dining facilities, nice furniture, etc.)

I’ve watched two friends move their parents enter into similarly structured apartment/care facilities. (They’re expensive!) The main benefit I’ve seen is when they developed friendships with other residents. It was like a typical neighborhood—and neighbors looked out for each other especially as they entered end of life care.

The shortcomings, though, come with what healthcare will look like in 10-15 years. Hiring and maintaining good staff is the ongoing cost that these facilities manipulate for their shareholders.

Since COVID and the new employment issues, I cannot even imagine how they’re adequately staffing.

When I was hospitalized two years ago, there were a lot of rote behavior around diabetes (major hospital with a leading diabetes research program), short staff days, and other gaps in care. Knowledge doesn’t trickle down to the day to day staff. There are always some who will be better than others. Mistakes happen.

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It is rather humorous that I still think of 80 as being so old. I have to remind myself that I am almost 72, and that 80 isn’t far away. I also think of 70 as being old, until I remember that I am over 70.

I know some 80 yr olds who are just fine. Some of my neighbors on their 5 and 10 acre plots of land are doing very well and are in their 80’s. I need to readjust my thinking about age. If I keep exercising and eating in a way that best suits my diabetes and body, I should be fine for quite awhile even though I have spent almost all of my life with type 1 diabetes.

I can’t foresee the future, but I am going to quit thinking that it has to be bad once I really get old. My future was supposed to be dire from the age of eight.

My life has been fairly difficult for different reasons, but I have handled it so far. As long as I can still think clearly, I will be ok. If my mind goes, keeping my glucose levels in range won’t be that important to me. If my husband or son die before me, I will worry a lot more about getting older and will have to rethink my future.

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I’m an audiologist and from what I understand, in general, workers in health care facilities are not great with hearing aids - so that doesn’t make me feel any better! :wink:

One thing that has not been mentioned in this thread is that Medicare doesn’t cover your CGM and pump supplies if you are in a “facility.” Every three months when I get my supplies I have to certify that I will be using my supplies in my home and that I am not in a facility. I don’t know what the definition of a facility for Medicare is. Whether it is just skilled nursing facilities or whether it includes certain levels of assisted living.

Like others my aim is to stay as healthy as possible and be able to care for myself….

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My husband has some of the best aids made, but is still almost deaf. It runs in his family. The adjustment has been hard on both of us.

So having read this thread, doesn’t @Laddie 's post actually answer the OP’s ask?

To me that would infer as a generality that most facilities are not equipped to handle pumps and cgms per Medicare standards.

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My mother and her huband are in a multilevel “community”. I helped them move there. It was their choice, their selection, but either they waited too long between when they chose and when they were force to move., or they weren’t looking very carefullly. They live in a town near Knoxville. They could have moved anywhere and afforded it.

I have T1D, they don’t. I live near Chicago. I couldn’t live in their town if I didn’t have T1D. The people are nicer, friendlier, better neighbors than mine. I understand why they are insular. I don’t resent it and I could adapt to fit in. I already need more than their island can provide.

I need a higher level of avaiability , reliability, and depth of medical services than they have. Compared to communuties in my area, buiding hygiene and maintenance were mediocre every time I was there. How routine accidents like falls were handled is below what I would expect here - living at home. I continue to live where I do becasue I’m a 5 minute ambulance ride from, not a good, a highly-rated, medical center and within 10 miles of every specialist medical service I might ever need.

At my mithers’ facility the people who provide the different levels of care - independent living with on-call assiatnce, assisted, and nursing are completely different groups and none of them are direct employees or members of the “community”. They are outsiders who work there.

To different degrees that is true of all “assisted living communities”. They aren"t communities. They are businesses -extended eldercare housing with outside contracted services. They can be managed to provide high quality service or high returns to sharholders, both or neither.

You need to think bigger. These communities don’t exist in vaccuums. Who provides their services, who is their backup?, who well do they work together?

Would you trust your doctor and staff to manage your pump if they were doing it 24x7? (If you wouldn’t, you need a different doctor). Who do they trust?

Doctors see the outcomes of their patients treatments living at home and at assisted living facillities. Ask your endiocrinologust and other doctors which ones they would move ther insulin pump dependent mother and father into if they were senile.

My wife and I have been checking out what’s available by us. I know what level of care I’ll need during 10 years from now. I don’t see it there. We’ll downsize and hope.

My diabetes educator and my endo have little experience with how a hybrid closed loop pump can work when they are working well. They were startled when they saw my A1C at 6.7 before I started a CGM, freaked when my last A1C was 5.3. Because of my age, their experience with people who are barely in control, and their perception of my age, they still want my A1C to be higher than my pump is designed to provide to “protect me”.

These are conscientious people with good credentials and experience, the ones who soft-sold me in using a CGM and pump instead of BGM, MDI and Humulins. I did it only because I thought that 10 years from now the tech would be much simpler to use - nearly idiotproof.

I think it will.

But I also think that even if it’s a “fill it and stick it on” system, the practical knowledge of average caregiver will lag the practial knowledge of the average PWD who has used that system for more than a year. And their well-meant caution and assumptions will have worse outcomes for pump using PWDs than experienced pump users who could do it themselves.

Today, if I couldn’t manage my pump and CGM myself, I’d rather be on MDI and fingersticks.

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I expect hospitals to be using insulin syringes and glucuometers for a lot longer than 10 years.

I’m an engineer and have been hearing “just 10 more years” for 40 years. I know the tech. I don’t expect anything spectacular besides hype to drive up new public company share prices, to come from this tech in the next 10 years.

It’s not evolving. It’s all re-engineering what’s already known and available. ICR and CF aren’t rocket science. Neither is a pump or the chemical reaction of a glucometer. It’s repackaging.

Fully-closed loop tech has been in use and is free to use. It isn’t availabie commercially, because it can’t be sold as FDA approved equipment. 95% is simple code developed not by the pharmaceutical, pump or CGM makers but independently by T1Ds using “obsolete” pumps and a DIY interface to smartphones.

It won’t be available commercially until after it can be monetized, made proprietary as incompatable hardware sets, and put through FDA trials that prove that the proprietary clones work. Then it will be ofered in many systems that are purposely mutually incompatible. A handfull will be approved by the FDA because the trials can be fiananced. .

The packaging will result in multiple incompatible systems with different enough details and “new” features every 2-3 years that no one who isn’t using a system will know it well. (Think Tesla, Ford, Hyundai and VW “driver assist”. )

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Add to that all the legacy misinformation that will still be circulating in the community from those that should know better and being bolstered by those not in the community who expostulate misinformation out of ignorance.

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If I believed in conspiracy rather than self-interest and incompetance, I might believe that the FDA was working pharmaceutials and Medicare to rid of as many PWD as possible faster.

The inertia and idiocy in applying well established basic science and existing hardware to diabetes management is literally killing us slowly for profit.

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