Parents caring for the parent support thread (Part 1)

Parent Cafe
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My daughter, now 28, has had type 1 for 24 years. Talk about brittle: she had to be tested every hour before the pump and CGM and I (then she) got up at 1am and 3 am. When she is in the hospital I have to stay with her 24/7 because not a single medical professional- nurse or doctor- knows anything about managing type 1. One ICU nurse confessed that to me and said that in 30 years of working in the neuro ICU, she had never had a type 1.

Meals are late, meds are late…and one nurse said to me “Oh, she only needs insulin when she eats right?” Against my instructions they had not reconnected her pump after a procedure!!! I have endless stories…

What happened with the omitted insulin? Did he get high?

Glucagon takes awhile to work so always call an ambulance so IV sugar can be given. That works instantly.

I didn’t trust the medical staff, doctors and advance nurses, in an ICU and medical floor at one of the top hospitals in the world. Sorry, but I cannot imagine trusting an AL staff, especially with all the agency LPN’s in and out.

Maybe a doctors algorithms work for him and things are relatively steady. My kid has never been able to be treated with algorithms- she is too variable.

You could consider a pump or more likely, since the Lantus is working, a CGM which has alarms and reduces or eliminates testing. You can have the alarms on your phone, with a graph of blood sugars and arrows indicating up or down or even. The nurses could also have the alarms on their phones or IPads. There is an alarm for high, low, very low, and “no data” which means interruption in signal. Dexcom is the accurate one, don’t use Medtronic.

This is a very dangerous situation. I would do something asap.

(I do wonder how he fared with omitted insulin. My kid reached 450 the other night when her pump tubing got blocked and she was in a concert for a mere two hours. Two hours! She had to use so much insulin to get down that despite our best efforts she was 40 before we stabilized her. I went to pick her up to help her. Omitted insulin is a serious thing, potentially life-threatening.)

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@surfcity- sorry for the need to navigate this problem. I have no knowledge of diabetes protocols, but as far as an omitted medical management routine/medication, that is extremely serious. Interestingly, national newspapers have recently had articles about the reduced staffing at skilled nursing facilities on the weekend, including many circumstances where the care does not meet the required criteria. Residents’ high needs do not evaporate on Friday and return on Monday, but the staffing patterns can be set up to work as though that is the case. I know your father is in AL level of care, though the point stands that they made a commitment to provide this management to him. Link to NYTimes article: https://www.nytimes.com/2018/07/07/health/nursing-homes-staffing-medicare.html

Great that the nurse owned her error and stated that she would report it. That seems a good starting point. I would then finesse a care plan meeting that included some higher ups (nursing manager for facility, in-house docs if applicable, an administrator, quality assurance staff member or resident ombudsman type, whoever you think could be helpful and accountable). A “how do we all have peace of mind going forward?” discussion that would be a way to gauge what is realistic to expect, what is being done differently given this potentially life threatening mistake, etc. For me, it would be a way to assess if this level of care, as well as this facility needs to be re-thought. Those who know diabetes better might already feel that the error itself is enough data to make a determination. If indicated, there are licensing boards that this can be reported to if you wish. Of course, mistakes can happen anywhere. Some places have fewer of them and better methods for avoiding them in the future, as well as a higher commitment to remedying systemic breakdowns. I like to address medical quality assurance issues as I see them. Even if I am “done” with a place, it can help others to speak up.

All the best to you and your family.

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My FIL was taken to the ER this morning with a very low heart rate. Of course, H and I are in the middle of our post-work/retirement celebration trip.
He’s 91. SIL says, via daughter, that they’d like to put in a pacemaker. Any thoughts on it? Is the surgery rough? He’s had multiple episodes requiring his nitro pills (up to 5 pills, I think), so it could be a benefit.
H and SIL have had agreement of don’t ask/don’t tell when it comes to their parents’ health while on vacation. I’m the go between & will have to decide whether or not to tell H.

I have to accept that this is not how my sisters and I worked with our mom in her decline and it’s how the ILs deal.

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Here is one thing to think about regarding pacemakers: They might be the only thing keeping a person alive at a time when that person would prefer to not be alive, but many physicians are reluctant to turn them off because the result will be the patient’s death.

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@SOSConcern

ever since his brain injury he has been back on a sliding scale. It gets tweaked periodically. His days are very similar in terms of “exercise” (he uses a walker and mostly walks to meals and activities) and calorie intake. The last time he had a low, he’d been at my house for a meal and of course I cook much more healthy and low-carb than the AL (fish, salad, roasted veggies. I should have made him eat a few slices of bread!)

His endo says it’s not so much age as having had T1 for so many years that makes him brittle. He’s had it for 55+ years.

@compmom I have found that the LPNs at this place are pretty well versed in T1 diabetes. Their last place, not so much. At that place, they ended up telling me that we should only have RNs treat him, so when we moved to a smaller AL, it was mostly LPNs including the DON. I raised a stink and then gradually found out that while there is an RN on site, the care is usually always given by LPNs.

I guess he was okay with skipping the Lantus. That is better than skipping Novolog. He was on the pump for years until his brain injury and now it is not safe for him to wear it because he could dial up a dose on his own and forget. People have mentioned CGM to me and I do recall asking the endo about it but he must have discouraged me because we did not pursue. I think the thinking was he still needed a nurse to interpret and treat anything and they are right there to do the blood sticks. But I guess a CGM would catch the “silent” lows or middle of the night ones.

Dad can routinely test at 200 or more before meals. They are not as concerned about that because he is 83. Obviously a younger person should try to maintain much better controls. Before his injury dad was like a computer, keeping his sugars to a very even state and eating properly all the time. It’s probably why he has no kidney, eye or heart side effects so far.

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@travelnut - good points. I have been wanting to have a little meeting because my mom NEEDS a break from dad much more, but every time I take her out to lunch or shopping she is so worried about him. I try to tell her that the staff will find him and bring him to lunch and do his meds even if she has gone (and that has been the case, they log every resident at every meal) but I would like to hear in more detail how they would handle mom being gone for an entire day or what would happen if she were hospitalized. She spent one day in the ER and I called and the staff checked on him every couple of hours.

@zeebamom - I really feel for you. We have a good friend who is a geriatrician. He says the worst thing for him is when family members ask “is there anything more we can do for mom/dad?” because there is ALWAYS something else the doctors can try. The difficulty is do you really want to try everything and are their unintended consequences of trying everything.

I am not giving advice but I have read stories similar to @rosered55 that sometimes pacemakers keep people going long after everything else stopped functioning. And given the opportunity, who is going to be able to tell the docs to turn it off? I would ask what would happen if you decline the pacemaker - what can be expected? How is his health otherwise - a vigorous 90+ year old it might be worth it. If he is already bed ridden and failing, it might not be the best thing.

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Yes @surfcity running in the 200 - 300 ranges are typical on some of my residents, and they really do look to see how ‘stable’…tweaking the insulin. Having a ‘low’ in there is where we react to get the BS up…

Hope you can stay calm and just keep and eye on it and also get the feedback from the facility. Checking with your parents - although they may not be able to tell you exactly what is going on, just pray that you will pick up when you need to look closer at their situation.

As a new clinical instructor, I had hospital orientation yesterday. We had a hand out which gave these reasons glucose results may be lower than expected:

high Hct
hyperglycemic-hyperosomolar state
severe dehydration, abnormally low blood pressure or shock
water or alcohol remaining on the puncture site
venous/arterial whole blood not tested withing 30 minutes of collection (in the hospital they draw a stat BS for the lab to test, sending a tube of blood to the lab)

At our facility, we give the resident food/drink and retest the BS with the glucometer. Have not had a resident test low for some of these more serious conditions…

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SOS was the training for generic “diabetes” aka type 2 or did it include type 1?

I can see the argument about age and less worry about complications, but people don’t feel all that well at 200-300.

I would look into a CGM. That way you can manage from afar.

The school nurses always had me manage from afar. They said they couldn’t manage it and they were right. They were BSN’s.

Is your Dad really type 1 or is he a type 2 taking insulin?

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that was the handout we got with the session with their glucometer system. they didn’t discuss handout content.

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most of the residents have no idea what their BS will register. They often do not feel any different with varying BS levels. that is a bit surprising to me, but it is what it is.

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SOS what was the title of the handout? I am not undrrstanding /)

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@zeebamom my friend’s family has longevity, Dad got a pacemaker and when he had Alzheimer’s it was nearly impossible to get agreement on stopping the pacemaker. They had had conversations, the siblings were in agreement that Dad would not want his life artificially prolonged, but it was rough to get it to happen. Perhaps there should be some discussion about the what ifs, what if we want to turn it off?

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Oh I see. The handout made no distinction between type 1 and type 2. Ugh. They are two totally different illnesses.

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The cardiologist we saw with my 93 year old elder said his job was just to help us keep elder out of hospital and no invasive of heroic measures.

He encouraged elder to continue taking his one heart medicine and walk/exercise as he was comfortable. He made an appointment for 3 months out to recheck but said we could push it another 3 or more months out if no changes.

I’d not want a pacemaker at 90+; bodies are NOT meant to continue going forever, especially once minds have wandered off, as often happens as folks age. If the person is sharp enough to handle his own care and insists on having a pacemaker, I guess it could be done but I certainly would NOT encourage it.

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I appreciate the comments on pacemakers. The pacemaker isn’t going to happen; better to pass at home than in surgery. Totally agree. My daughter kept me informed into the night here.

FIL has been on oxy and fentanyl patches for awhile due to a fall and presumed (more) broken vertebrae. He has osteoporosis and has had several breaks. The patches were a recent addition and SIL and H had been talking before our trip to get the meds reduced as he seemed better. This all started with FIL could wake up properly and had a very low HR.

The IL live in a fairly well-regarded AL facility. There’s been some turnover in nursing staff, including the head nurse leaving to help family and take a job closer to them. ALL meds are adminedby the staff. When FIL was checked out in the ER, they found 3 patches on his body. All were removed.
By mid-afternoon, he was awake, coherent, and chipper. Although the docs say the meds didn’t cause the issue, I remain suspect. The family at home will meet with palliative care today.

The AL is freaking out, as they should be. They will self-report to the State and are doing a thorough review of med procedures as well as going through all records and files and questioning all staff, even those who have left.

Pretty scary to me, and operating from a distance w/o being able to tell H what’s going on is really, really tough. We’ll be gone another three weeks and on 10/1, S and BIL go off for another of their six week trips. In the interim, there has to be a big discussion on what don’t ask/don’t tell really means. Our daughter is taking on a lot -other daughter having her anatomy final, so was kept out til that was over in the evening.

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IDK if the variability with BS changes or acts differently with type 1 or type 2 DM with older adults. Certainly one generally suspects that type 1 (especially in young and active years, and especially during puberty and other changes with hormones etc) is more ‘brittle’. Some type 1’s are, and some lesser so. I had a close friend die at a young age due to DM type 1 complications, and she was a brittle diabetic. Another friend died from complications of DM type 2 at age 60 after a short non-related illness.

The low BSs are the ones that need action to increase the BS value, or if something else is going on get that addressed, so they can be dangerous w/o proper assessments and quick intervention. In the hospital, have to report to MD if below 40 and above 400. A fasting BS for an adult on these glucometers is 70 - 100.

I do sympathize with those managing seniors from a distance. One desires quality of life. Frustrating.

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@Zeebamom, Oh my, the medicine patches being all over his body, that’s crazy. People tell you to put your parent into a home and think that it will make everything all right for you, but there is still a great deal of monitoring and chances for many things to go wrong, just like if they were in their own home or your home. It’s so rough.

I can totally relate to the trip thing and asking a lot of your kids. We were on a trip when MIL broke her hip. Part of our trip included excursions off grid, out of cell phone range. We got a call just as we were about to leave cell coverage, like 5 minutes later and we would have missed it all, that she was back in the ED, having broken her hip days earlier and been sent home, but was in too much pain. Whatever the first Tx decisions were, they were not working and it was family crisis time.

We had to make a special effort to get back into cell range twice each day, finally cancelled our excursion on the second day, in the mean time our DD, late 20s, was a champ. She communicated with the grandparents and the docs and was successful in getting MIL admitted and into hip surgery, the ED wanted to send her home and that was not working, but it was a tough fight. MIL was much more comfortable after surgery and that also qualified her for rehab, which made all the difference as FIL and full time caregiver just could not care well enough for her with the broken hip at home.
DD is in the medical field so that part was less stressful for her than the average kid, but still having to fight those fights, talk down her Grandfather from his wild emotions, arrange to connect with us twice a day, it was rough and yah, our trip was ruined.

Regarding don’t ask/don’t tell. I totally agree, in large part, if there is nothing you can do from afar, then let that person enjoy the trip. DH and I were on a trip once and my Dad had to go to the ED, D1 was about 20 at the time, but she still figured out, take Grandpa to the ED, bring him home, acknowledge that there was nothing we could do from afar, insist no one tell us what was happening until we got home. I still appreciate her understanding of the big picture. Maybe have a follow up conversation with the siblings in law, everyone clarify, what would they want to know and what would they not want to know? Would anyone change their trip and come home if the person was dying? If they were admitted to the hospital? What about needing input on crucial decisions?

We had to intervene several times with FIL when the sib-in-law was abroad, I think we told them what was going on, but it might have been a report after the fact. We had things like multiple ED visits in one week, issues with the AL, moving him out of AL and into a B&C home, putting him on hospice and choosing the levels of care on the hospice form. I am pretty sure I did it all and just reported afterward that he moved and where, without going into the specifics. As in, it was not up for discussion, they chose to take a 6 week trip (our deal was that we would deal with MIL and they would deal with FIL) and knew how he was doing when they left. Of course they had had reservations for months and they had invited us to join them when they booked, good thing we did not! If you take a trip and are doing don’t ask/don’t tell, then also do not come back and second guess the decisions. For me, it meant I had to do all the work in finding the right home, etc. Luckily we had already done that for MIL and the same guy had another home available. But I would not have appreciated any suggestions that I should have done it differently after the fact. :wink:

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SOS: 400!!! That’s crazy!!!

Type 1 is an autoimmune disorder in which the insulin-producing cells are totally destroyed, so no insulin produced by the body. Insulin is needed all the time, for the rest of the person’s life. There is no connection to diet, exercise level, weight etc. and it cannot be reversed.

With type 2, insulin is still produced but there is resistance to it. Diet and exercise can sometimes have an impact on reversing it, meds are available other than insulin, and insulin is used by some.

Most type 1’s I know use a pump and a CGM. Hospital staff, again even an ICU at a top teaching hospital, won’t use the pump because no one knows how.

At any age, a blood sugar close to 400 or even 300 can cause diabetic ketoacidosis, which can cause vomiting and sleepiness, then coma. I would say 200-250 would be a cutoff for an older person maybe but most type 1’s are doing tight control and aiming for 80-120. They feel better and they live longer. But the danger of lows is everpresent.

Facilities don’t want to deal with the immediate hazards of lows. So they run people ridiculously high. This can encourage and prolong infections. It is a huge cop out. Legal liability should apply to highs as well as lows but they don’t.

My kid had a brain injury and pneumonia and they were running her at 300 if they could. And using increments of whole units (a pump can do .025 increments). They almost killed her. I finally got permission to manage her and put her back on the pump and ran her tightly and she got better. This is only one of many stories.

I think it is basically “ageism” to run an elderly person so high and say it makes no difference.

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Certainly MDs write more specific orders to be notified - those in our facility who regularly test high have sliding scale orders from 150 up to the 400 level…They have the correct level of monitoring with BS levels and also nursing assessment and PRN BS if needed.

@compmom you are looking at a specific person and what happens to them with their specific DM illness.

I am just telling you what it is for relatively stable diabetics that are in skilled care, and generally age 70 +. Almost all are Type 2 DM. Some have been diabetic 15+ years. I do know stable type 1 DM residents that are older. Everyone’s body is in many ways unique.

And the nurse assesses the resident and also asks how they are feeling. No S/S of diabetic ketoacidosis

We do not let residents run ‘ridiculously high’ - the NP reviews, and our doctor reviews, and makes medical management adjustments. These residents also do not have prolonged infections… We get additional medical orders when needed.

Each state has varying regulations for AL. IDK how well regulated some states are with AL. I just know how hospitals and skilled care/rehab are regulated in my state.

I do see how staffing at AL has much heavier M - F staffing. Skilled Care/Rehab has 24/7 with some heavier staffing M - F day shift. Rehab services (OT/PT/ST) are 7 days/week but more sessions and evaluations M - F.

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When I say they let my dad run high with his T1, it’s generally not in the 250+ range. His sliding scale only goes up to 250+ in fact. But before his brain injury, when he was on the pump and cognitively able to manage himself, he was very tightly controlled and only rarely had a lower reading.

Now, because of the total change in his activity level and nutrition, plus the brain injury, his numbers are much more all over the place. I don’t know that a CGM would be successful because aTBI often makes people ruminate and rummage around. I would worry that he would pull it out. He has hearing aids and he is constantly fiddling with them and they finally attached tiny clips and a cord to ensure he doesn’t lose them.