My dad is 68 years old and has had T1D for 55 years. A few months ago, he had a stroke and developed vascular dementia from it. Overnight, he went from being 100% able to manage his diabetes to now not even being able to do a finger prick.
Since I work full-time, I need to find 24/7 care for him. It has been so difficult to find a facility that understands T1D. Most memory care places in my area only have residents who are 80+ years old, so they have never had a resident with T1D.
My dad spent a few weeks in an assisted living facility last month, and they were only willing to do sliding scale insulin doses for him. They also refused to allow their caregiver (non-LVN) staff to check his Dexcom readings for low blood sugar when the LVN staff went home at 8 pm.
Has anyone dealt with this before? Does anyone have advice on how to find a memory care facility or in-home caregivers who understand T1D? Thanks!
I haven’t had to address anything like this so I’m just brainstorming, but I wonder if there is something like a 504 plan for adults? An attorney specializing in elder and disability law might be able to help you. I’m in the DC area and we have one who helped when my mother filed for disability benefits for my sister, who is developmentally disabled. I’ll see if I can send you a private message with their contact info - you very well may live in another area but they may know of practices in your area that can help you.
@NatSWelcome Natalie to the Breakthrough T1D Community Forum! I can feel sincerely for the situation you are experiencing and don’t envy the challenges you are facing; Iv’e discussed this problem but I haven’t yet found any useful solution. I frequently visit a patient with dementia [who doesn’t have diabetes] in a care facility and have gotten to know several of the staff. My diabetes is just about fully automated with very little input required from me, I’ve demonstrated this to staff and been told that if I get admitted they would need to switch me to something simpler - like insulin shot at meals and occasional finger-prick for BGM. This delemer is not limited to extended care facilities, but is also noted in hospitals.
The concerns you open here have also been subject of conversation on the Juslin Medalist forum - many of us concerned about what will happen to us “in a few years”.
@Dennis Yes, it seems like whether my dad is in the hospital, skilled nursing, or assisted living they will only do a sliding scale insulin injection before meals. My dad has been having a tough time with it because he is so used to having his pump. I hope things will get better for T1D seniors, because this is going to become a bigger and bigger problem in the future.
Hi @NatS . My husband manages 4 adult daycares (centers) in our area. The nurse at the center checks the type 1 diabetics’ blood sugar frequently and administers insulin according to doctor directions (ex. If blood sugar is above 200, give x amount of insulin). My husband has learned from experience that they cannot help brittle diabetics. It takes too much time from the nurse and the results are unpredictable. I agree with everyone who has responded here, aging is a worry. I would never do well at my husband’s centers because I wouldn’t be allowed to have my insulin with me. It would be locked in the nurse’s cabinet. .
My recommendation would be to use an iLet pump. I have heard it is relatively automatic- just push a button for each meal. It links with the CGM and makes adjustments as needed - without a person pushing buttons. It should be easier for the nursing staff. I am personally on MDI (multiple daily injections), but my plan is to get the iLet pump when I get older and forgetful.
I hope this helps. I will pray for you and your loved one.
@NatS , in addition to the Beta Bionics iLet pump that Courtney @homeschoolingmomof5 mentioned, the MiniMed 78G [Medtronic] device when coupled with a CGM is designed to provide multiple small bolus infusions to maintain as level as possible glucose level even if/when mealtime bolus is not initiates by user. During development of the algorithm at the university this feature was tested on students with diabetes with what I understand were acceptable results - my information is hearsay / secondhand and not direct or “official”.
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