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!

@khjalmarj , I am a retired nursing faculty. When I had students in nursing homes on rotation, there was only one doctor, a geriatric specialist, providing all of the general, total physician care. Occasionally, residents were sent to specialists for specialty care. The specialist would then “make recommendations to the facility doctor to WRITE THE ORDERS”, This meant the house doctor had to
[1] understand the recommendation,
[2] agree with the recommendations,
[3] concur that the recommendations were within the scope of services of the facility,
[4] be willing to support & protect the recommendation to the nursing home police {NHPD} (satire because there are Federal Long Term Care regulations down to things like men & pocket knives or residents & caffeine containing coffee or tea)
[5] monitor the ordered recommendation and
[6] support the facility care staff carrying out the ordered recommendation. As in, Mr. Keith’s CGM is different from his finger stick the NHPD requires for his insulin. What do we do?

The regulatory world for long term care is a disaster in the USA.

My recommendation is to arrange to die in you home. Arrange your finances to have inhome care and stay away from facilities. My father liked to do intricate wood carvings. Because of the dangerous items rules & their interpretations, he was striped of his carving knives and his pocket knife. I went to war to get them back. All I got from the facility, the state NHPD, & even the OIG of HHS CMS was the flushable fecal residue of safety.

Stay home.

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Keith @khjalmarj, it may be good that you are looking ahead but “things” change at care facilities - ten year staff retention [other than owner/operator] is not realistic. I’m familiar with the capabilities of a couple of facilities and there are significant talent differences; I expect even five years from now that more of the staff will know pump and sensor technology. One of the reasons I began using Control IQ was to make it easier for those close to me to provide assistance [fewer guesses and calculations] as my eyesight and fingers deteriorate; my wife and I are somewhat older than you.

J @987jaj has it correct when he said WRITTEN doctor orders, covering as many contingencies as possible, is a necessity. I suggest that if you and your wife can narrow down possible facility options, that you begin volunteering at chosen facilities so that you might become familiar with ACTUAL , not “brochure”, capabilities.

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Hi Keith @khjalmarj, I second J @987jaj. My husband manages several adult day centers. His company employs several nurses to give out medication. From a diabetic perspective, it is a nightmare. And I am MDI. There are so many different aspects that determine how much insulin I give myself. Nurses must follow the explicit written instructions of the doctor. Instructions that cannot encompass the entirety of my decision making process. Nurses will use my insulin to carb ratio, but will not take into account how tired I am- or how stressed. Nor are they allowed to if it is not written in your folder and signed by a doctor. All medication is stored in a locked cabinet - even if you can give yourself your own insulin (which won’t be allowed) you cannot have it on you. I told my husband I am aging at home - and I am only 47!


@khjalmarj , @Dennis , I went back and checked some notes about nursing homes and assisted living facilities (LTCs). I went back to the Federal Law governing LTCs. Any LTC administrator will cringe if you say OBRA’87 or 42CFR 483 Subpart B or any of a few other subparts of that section of Federal Regulations.

I went ratting about in regulatory matters and citations. CGMs are not permitted in Medicare participating LTCs even though they are FDA approved for insulin dosing, they are not CMS approved.

In my quest, I found buried deep in some notes an issue demonstrating the lunacy of the LTC regulatory environment since OBRA’87 was permitted to develop a choke hold on the LTCs of the USA. In South Carolina a resident complained the water was not hot enough for shaving with a blade razor. The state agency contracted to perform survey’s to Federal OBRA’87 standards said the man should not have been shaving with a blade razor as it was UNSAFE. The man’s family continued the complaint of “resident abuse” by alleging the state agency, DHEC, was the perpetrating party by not allowing the man to shave with hot water and a blade razor. During administrative hearings, six blade using men from a jury pool were asked to prepare water for shaving. After the six prepared their water, a nursing home inspector declared all of the water was TOO HOT for safe use in an LTC by Federal standards.

Because CGM technology is not in the regulatory world at the present time and the nature of regulatory atmosphere, @Dennis has good wisdom, volunteer and learn.

@homeschoolingmomof5 , thank you for sharing.

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I have a friend with T1D who has been living in a CCRC for the past 10 years. Initially, she was able to do infusion set changes herself however over time she ended up paying a CDE to help her with those set changes.
About a year ago, she was moved to skilled nursing for various reasons (she’s now 89), And the nursing staff there was unable to deal with infusion sets. Now she’s on MDI which the nurses are taking care of. At this point my friend is unable to deal with any of the technology involved with infusion sets, etc…
I’d like to add that this CCRC is considered one of the best in our area.

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The first thing I will say is the 3 days change for infusion sets is to sell more infusion sets. Use them until they are empty. That will save many changes. My endocrinologist has never said anything about scar tissue, which is what the pump makers use for an excuse, and when you are ordering new ones they ask how often you are changing and no matter what you say, they are ok with it. Second, there are so many varieties of retirement communities, you will have to tell them what you will need, and they will tell you if they can do it. Lastly, it sounds like you are counting yourself out for being able to do it. You have taken control of your diabetes by getting a pump. Don’t count yourself out this far in advance.One more thing.The company that tells you change them every 3 days uses me to survey things they are working on. They are testing 10 day infusion sets and sensors and saying in the scripting that it helps with scar tissue to leave them in longer.

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I’m glad you asked this question. I too wonder what it’s going to be like when I’m older and having a pump. I’m 53 now, and worry what it’s going to be like if someone else has to take care of me. My husband somewhat knows things, but the pump, no way. Does your wife take an interest in your care? I know I need to make a plan if something would happen if I can’t. Maybe that is what you need to do with your wife.

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I am 67, a retired nurse and Diabetes Educator, T1D >50 year, on a pump since 1984. First of all current pumps, approved in the US need to be changed every 3 days because the insulin loses potency. If I go longer, I can see changes on the 4th day, and significant highs by the 5th day. In Europe there are pumps with more airtight designs that can be worn for 10 days but I do not know what research is revealing about the condition of infusion sites. That said, I believe forming a relationship with a caregiver, who will agree to train someone else before stopping care, is your best bet. The individual doesn’t have to be a CDCES (Certified Diabetes Care and Education Specialist) but that does assure you of someone who knows what they are doing. Starting before you need the person gives you time to evaluated the relationship and each of you to learn from it. In assisted care or a nursing home, this person could act as the patient advocate who is responsible for the pump. In assisted living, there are some great options for active living & an individual who assists with T1D would be well worth out-of-pocket costs. In my practical look at my decisions, if I was in a nursing home, I wouldn’t care who was taking care of me, my quality of life wouldn’t be worth caring about.

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I just want to add that our FDA takes years to approve change but insulin infusion will include systems lasting 10 or more days in the next few years. Susan

Hi @Shenry and thank you for this information. I remember keeping my infusion set on place for 7 days my first several years on the pump (I started in the mid 90s). I can’t say can’t say I noticed a difference in performance after day 3 but I may never have made a connection. I “followed orders” when a doctor told me to switch every 3 days to avoid scar tissue, but I did think of it as a “6 of one, half dozen of the other” kind of situation: that leaving it in for 7 might cause more scar tissue in that area but would leave more locations to direct from, while leaving it in for 3 might decrease the likelihood of scar tissue but would cause more to build up when it finally did. Hmmm🤔.
Not to doubt what you are saying but I do find it interesting that now insulin can be stored at room temperature for up to 30 days once it is opened (that may depend on the brand). I started on insulin in 1963 and we were taught to keep mine refrigerated so that’s what I have done for all those years until recently when I switched to Omnipod - I carry my “working bottle” with me now in case I need to start a new one while I’m out. Any bottles in not using remain in my fridge.
Thanks again for the info!


How have you been on a pump since 1984? I was diagnosed in 1983, and I don’t ever remember learning anything about a pump back then. Please let me know, I’m curious about that. Thank you, Melinda Selander

Melinda @selander41169, insulin infusion pumps have been in existence since the 1970s. I was told about them at that time but declined - they were bulky and not to my liking.
I continued with injections and decided in 2004 that it was time for me to try a pump.

Dorie, the 28 day limit for an “active” vial of insulin to remain guaranteed effective, refrigerated or unrefrigerated, applies to all analog insulin formulations. On the day I began using my first pump, the Medtronic adviser told me to never put cold insulin into a pump reservoir; this caused a delay while the nurse attempted to warm the vial I had just removed from the refrigerator.

The insulin “deterioration” factor is, as we all have read, included on the flyer packed with all Lilly [and at least Novolog] analog insulin that states insulin ai a CARTRIDGE should be discarded after seven (7) days.

Thank you, Dennis! Greatly appreciated.

@808IUFan , the three day is an infection control philosophy nothing else.

That’s not what they say in their documents and on the phone. I have used the same infusion sets for 5 or 6 days at a time for 30 years and nothing negative has happened to me.


Larry @808IUFan, as we all know, each of us is different and infection incidents differ depending on how clean a site is when a sterile catheter/cannula is inserted; the three day limit is most likely a manufacturer/distributer" CYA safety" at behest of legal-beagles.
Look at just two government agencies: FDA suggests two days while CMS (Medicare) will provide only the number that requires [at least] three day average usage.

Like you, I’ve kept very accurate infusion sets in me for a week without infection.

DISCLAIMER: I an NOT suggesting or recommending that anyone follow my horrific ways.

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Now it is time to get this conversation BACK ON TOPIC; these recent bits are leading the conversation away.

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Thanks for all your important information. It is easier to deal with insulin at room temp for 30- days after opening or beginning use. This is true for all insulins as far as I know.

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