Medical journal articles are finally starting to criticize the substandard care that type 1 diabetics receive in hospitals, since they are assigned to wards according to what has brought them into the hospital, which is not always diabetes related, so the doctors managing their insulin often don’t know the first thing about type 1 diabetes management. As many of us know, even endocrinologists have little understanding of the daily management of the disease, and nothing to compare with their patients’ knowledge, if the patients have had the disease for a while.
But what is going to happen to us in nursing homes, where we will probably have no authority over the management of our disease, where the gerontologists who visit us once a week will know nothing about type 1 diabetes, and where the generally careless treatment of patients may well prove lethal for us?
For example, my father spent the last nine years of his life in an expensive and thus supposedly high-quality nursing home costing $10,000 a month, and the care he was given was disastrously poor. I once even caught the person distributing pills to the patients just randomly tossing them in the cups without knowing or caring who was going to get which one. So what will happen to us if our blood sugars and hypoglycemic episodes are being managed in such a setting?
Yes, it’s substandard. I had to fire an endo who had hospital privileges at one that my regular endo didn’t have, so i could have an inpatient surgical procedure done. That bozo would have screwed me over big time with his inept doctor’s orders for the administration of my meal bolus. A large bolus coming LONG after I was given a meal. I had to discuss my firing of him with the hospital administration. AARGH!! I live in a city of a million and there are only 3 decent endos here. The others that I know about, or have gone to, or blah.
@Seydlitz makes an important point, What happens to us when absolute control is taken away from us. What kind of care will we receive from poorly trained caretakers that have little or no knowledge of diabetes treatment.
The nursing home is not the only place where we may not receive the best of treatment, think of those confined to mental institutions or those incarcerated in penal institutions. Any confined population can and most likely will be subjected to poor treatment. Even a short trip to the hospital is often a risky proposition, a place where the best and brightness medical professionals can be found. The risk to diabetics comes not from malice but rather from those that do no understand the realities of living our disease.
What can we do, I think little in these situations, Our best hope is that those that love us, our families, will advocate for our care. Now may be the time to start teaching them what we will need.
I am currently spending time educating my adult daughter so that she may advocate for me in an informed way. I think the reason for poor diabetes treatment in the hospital and other institutions is the woeful ignorance and incompetence of the care-givers. These deficits can be remedied, it just means that we, as a society, need to address this perilous situation.
I wouldn’t trust an endocrinologist to dose my insulin in a hospital, much less hand my diabetes treatment over to a minimum wage nursing home staffer!
I often think about this as well. I more so think about hospital stays though, for me personally at this time in my life. When I was diagnosed, the hospital I was receiving treatment at was okay. They kept me alive, started me on insulin, diagnosed me correctly, but even just the short amount of time I was there and had learned quickly how insulin worked (by my own research), they did it incorrectly. Except for one nurse, who was the kindest person, and she knew how to treat me properly. They would try and give me a bolus with an older insulin right when food came, or long after. My BS was in the 300’s still the entire time I was there. As soon as I left, I got it under control that same day.
I HATE the thought of having to be in the hospital now. I don’t want to get stuck in an even worse situation than one I ended up in the hospital with.
Even doctor’s appointments that involve my diabetes give me anxiety. Nurses don’t know jack crap about Type 1, and I can have a good doctor that listens to me, but treatment goes through channels of other staff and I end up getting an ignorant letter from the NP telling me to check my sugar more often, even though I told the doc I check up to 15 times daily. (This happened at my last appt when my A1C went to 7 instead of being 6.8 like last time. I have an appointment this week, and I’m assuming it will be around 7.7 since I’ve been sick. This should be fun )
I truly wish that we could pick and choose our care takers if we are under such circumstances. It makes me want to be an advocate in hospitals for others with T1D. I have a Bachelor’s Degree in Healthcare Admin.; maybe I should get certified to be a diabetes educator, or some type of advocate so I can help others who have no one. It really makes me scared for any T1D needing hospital or nursing home care.
I recognize this is a legitimate issue. If I reach a point in a nursing home at which I am unable to determine Lantus from Humalog, then I’ll likely do my best to overdose on one of these and call it a day…
Depressing? Surely… but I have no aspirations to die with missing limbs.
I have been to the hospital in an inconvenient moment. I’m convinced that emergency room staff are completely incompetent when it comes to well-controlled diabetes. Nursing staff would likely be significantly worse. The lack of control and inevitable complications is simply not something I’m willing to endure.
I’ve read about a type 1 diabetic in a prison where he said that, given the ignorant management of his disease allowed by the institutional authorities, he wound up with an average A1c of 18 for the duration of his stay. I imagine it won’t be much better in a nursing home.
I once went for blood work at my gynecologist and received a phone call at work stating I need to rush to the ER. I was terrified and didn’t pay attention to the details. Come to find out it was for my a1c of 7.2. The NURSE sent me. My doctor was livid… 7.2 was great compared to the 8.0 I had prior. I used to work for them too. The doctor (gyno) actually no longer let his nurse check the bloods after my incident. And then what will happen when I’m old & grey? Scared me so bad. I thank God my husband can fight for me but he’ll be old one day too lol. So I will teach my children (when I have them)
The nurse probably didn’t realize you were a long time diabetic. She probably thought you were un-diagnosed and headed for DKA. Either way that must have been an extremely stressful afternoon.
I’d hire a good nursing student to hang in my house and work on homework before I’d go to the nursing home. Even a good home health aid. P.S. My firefighter friend used to warn me that she saw epileptic diabetics in nursing homes and group homes and that I needed to watch my ■■■ so I didn’t end up there. It’s scary.
This also a Type 2 issue. I was in a rehab center short term after surgery. My GP (did not have an endo then) wisely set my MDI insulin lower as he knew I would not be allowed to set my own doses. He said the rules they operate under were very different than the hospital I’d been in for 3 days. He wasn’t kidding. I was able to keep my meter but my insulin had to be “turned in”. I was running too low one day but still had to have the amount prescribed. Had to drink 3 cups of OJ over the next few hours. I can hear some if you saying you would NEVER let your insulin out of your hands. It was nerve wracking but I was not able to refuse and just go home. Luckily it was there only four days. Now I have a pump and can’t imagine what that will be managed in a nursing home setting. On day one, Friday, a nurse said “their” doctor would be changing me to a different insulin on Monday. I spent the weekend planning and hoping I’d be strong enough to pitch a major hissy fit over that. Thankfully I was able to head home Monday evening. Having had this experience I am better prepared to ask the right questions if I have surgery and post op nursing home
A friend of mine has said he will never go in an American nursing home. He plans to move to Mexico or Bali and hire his own live in nurse til he dies. I used to chuckle at this but maybe he’s onto something…
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