What can reasonably be expected from family?

Type 1 & LADA
, , ,
1

I’m wondering what folks on here with littles reasonably expect from other family members who spend time with your kids.
My parents were here for my older son’s 5th birthday party. We had to run some errands and so we asked my parents to watch the kids for 1 hour while we picked up groceries. I gave my mom very simple instructions:

  • If he wants a snack and he’s not low, give him no-carb or low-carb snacks such as cheese, egg or almonds.

  • If he’s dropping low, follow the instructions on a printed card, give him one glucose tab, wait 15 to 20 minutes and if he is not rising or plateaud, give another one.

  • Do not treat highs; we will take care of it.

My mom has taken care of Samson more than a dozen times in the past on five or six separate occasions, though we always have frustrations with her level of care. One time we told her explicitly not to worry about highs because his openAPS will deal with them – she called me in from a spa as an emergency to tell me he was high, even though we are able to see his numbers. On several other occasions she over-treats lows and does not follow the instructions about waiting 15 to 20 minutes for glucose tabs to work, giving him 3!! glucose tabs in quick succession. Every time we have a talk with her about how frustrating it is, and then she either makes excuses about the instructions being hard to understand or says “it’s better if she’s not in charge of Samson’s care.”

Well, this time my mom panicked for whatever reason, and when he was 137 diagonal arrow down, she gave him two glucose tabs, a bowl full of cashews, crackers and blueberries – and only texted us with this information well after the fact. When we asked her why she did this, she didn’t explain and just said she thinks it’s better she not care for Samson – which hurt our feelings because she can’t selectively exclude one child from affection/care because he’s more medically fragile Our kids need to feel like their grandparents treat them equally as much as possible, and marginalizing Samson for his diabetes makes me really upset.

We were pretty upset. We had to cut our grocery shopping short and go home to bolus Samson immediately. She tracked none of the carbs and so we had to guess exactly how much he ate. He spiked to 250 before a big birthday party (luckily we carpet bombed the high with a bunch of insulin and he spent the whole party between 125 and 150, so it wound up okay). I am still upset with my mom.

I am wondering whether it’s fair for me to be upset though. I mean, theoretically, she has no legal or moral obligation to take care of our kids for any length of time. Many grandmas are the type who just want to see their grandkids well-behaved at holidays and then hand them off once they start acting up.

My mom is not a stupid person. Until about 8 months ago she was a programmer and business analyst with a defense contractor. She is smart and not physically or cognitively impaired. That is why it is so frustrating – it really seems like she is almost deliberately sabotaging the process or just not listening to our instructions. WE have childcare workers at daycare who literally are wiping butts, staunching nosebleeds and tying shoes for 12 other kids per teacher and they can still follow the three-step instructions we use for treating lows. Yet my mom seems to not learn from each time she sees our kids (she saw them last less than a month ago, and was responsible for his lows twice on the last trip – on a one-block walk around the neighborhood). What makes it even more galling is that my dad is a Type 2, so she is already caring for a person with diabetes and this should not be so incredibly foreign and frightening. What makes it even more sad is that my MIL – who is not necessarily good with numbers – has figured out through sheer love and devotion how to treat Samson. She gives him boluses, counts carbs, treats lows, and does everything needed to keep him healthy so that she can spend time with him. We feel safe when he is in her care. We don’t expect her to know everything or to never make mistakes, but just to try and follow our instructions, to check in with us, and to do her best.

Anyways, I’m just wondering whether other folks expect any proficiency in care from their extended family?

On one hand, I get it: My parents paid their dues with me. On the other hand, I don’t really rely on my mother for anything – we are financially independent, I certainly don’t talk to her for my emotional needs and I haven’t even talked to her about the stresses of daily diabetes management. She is not someone that I turn to for anything really.

AT this point, there are just a few things that would be so helpful to us – watching Samson for an hour or two here or there so that my husband and I can leave the house together sometimes, or being able to watch Samson when I go into labor so I don’t have to give birth all by myself without my husband. We do not have any evening babysitters and finding one is going to be very tough. It could be years before my husband and I are able to leave the house together except with family. It just feels like this is the one thing that we would really benefit from and that she could offer as a mom, and she just doesn’t seem interested or able to step up. I know it’s selfish to expect anything, but it really does make me sad.

5 Likes
2

@TiaG, first I’m sorry to hear about this experience. At least she didn’t over correct THE OTHER WAY (giving too much insulin resulting in serious injury to Samson).

For this very reason, my wife and I have no life outside of our children. We don’t ever leave our children alone with anyone else…either she, or I are at home 100% of the time with our children. We don’t trust others. I know this isn’t practical for everyone, but this is one of the biggest reasons for us, not to allow anyone else into our lives as far as from a “caregiver” aspect. We have relatives that visit all the time, but we just never ask them to be involved because we expect that they will…get it wrong.

To this, I would only say that Diabetes, to us, isn’t “so” confusing anymore…at least the underlying concepts, definitions, practices and procedures, etc.,…but to those who do not LIVE diabetes on a daily, 24/7, 365 basis like we do…it can be overwhelming and very confusing. Although I don’t think changing the POD/CGM or counting carbs is hard anymore…my family members look at me when I do these things (carb counting…easy peasy) and they just have dropped jaws over how “hard” they perceive this to be. Because we live it 24/7, things become easy for us, but visitors (yes, family are really only visitors unless they live with us)…these things can be very complicating.[quote=“TiaG, post:1, topic:840”]
Well, this time my mom panicked for whatever reason, and when he was 137 diagonal arrow down, she gave him two glucose tabs, a bowl full of cashews, crackers and blueberries – and only texted us with this information well after the fact.
[/quote]

I think in her mind (because of her lack of understanding about BG’s)…she reacted with the best of intentions. Because she doesn’t understand the inner workings, she reacted incorrectly…but I feel she probably acted in what she felt was Samsons best interests, because she loves him.[quote=“TiaG, post:1, topic:840”]
I am wondering whether it’s fair for me to be upset though. I mean, theoretically, she has no legal or moral obligation to take care of our kids for any length of time. Many grandmas are the type who just want to see their grandkids well-behaved at holidays and then hand them off once they start acting up.
[/quote]

I think it’s fair to be upset to an extent, but acknowledge that she just doesn’t understand Diabetes like you do. Even simple instructions can be confusing…no matter of an individuals “secular education” level. I would really try to explain WHY things are important, what things mean…how to break down why certain treatments are preferred above others in each circumstance and go at it from that angle. Not sure if you’ve done this or not but if I knew nothing about Diabetes and someone gave me blind instructions where the life of a child was concerned, I’d probably be freaking out too. If she doesn’t understand WHY food or tabs are necessary when there are lows…explain why they are important…what’s going on in Samsons body during those times, etc., You indicate she’s intelligent so after a thorough “class” on the basics, I would think she’d be able to make better decisions in the future?

Hopefully you all can work through this and find some happy medium.

3

First, sorry to hear about this experience. No fun at all.

My advice would be to remove access to the data for the temporary caregivers. Ask them to watch you son, and if your son is acting really strange, call you. That way you can monitor the bg from afar (I am assuming you have remote access to CGM data) and manage it.

I would ask that they refrain from feeding him anything other than the no-carb stuff.

We aren’t quite in the same boat, since our son is older, but we don’t put any burden on anyone else. We tried initially, and it caused confusion and worry in whoever’s house he was at. Now we just say, if he isn’t making sense, call us, if we don’t answer call the paramedics if he passes out.

3 Likes
4

Maybe your mom is…afraid of diabetes, especially hypoglycemic events. I sure know I was when first diagnosed so I generally overtreated lows, even for a while after getting my CGM. It takes a lot of calm and patience to wait for the quick carbs to kick in and maybe when she doesn’t see the CGM turn upward right away she panics. Perhaps a visit with your CDE for some “training” might help? Sometimes an outsider can better help a family member, in my experience.

2 Likes
5

@TiaG Unfortunately, I think that it probably within everyone’s best interest if you abide by her wishes not to care for Samson.

And I don’t think it’s because she doesn’t love Samson or love you, it’s more likely an irrational fear that she has that she’s going to screw up badly. As a grandparent myself I cannot imagine that she would not want the best for all of you.

My mother was the dearest, sweetest woman you could ever meet. But when I was diagnosed, if I had followed her direction I would probably be dead by now.

1 Like
6

She’s actually had a very extensive explanation several times. When we “quiz” her she understands it all in theory perfectly. And we are always available by text. That’s the thing. In this instance I had literally just texted her and said “in five minutes you may give him a glucose tab.” She ignored my text and then just did whatever she wants. Honestly I think it’s some sort of panic disorder or anxiety problem that she never got treated.

We have a whole slideshow we’ve prepared for caregivers and she’s seen it. She’s also asked a lot of smart and nuanced questions. Before we left we quizzed her on what to do – she answered correctly.

I agree that we need to be cautious and maybe the sad answer is that no, we never leave our kids unattended with them. But to me, spending one-on-one time with grandparents is both part of bonding with them and a sign that Samson can do all the things that other kids do. If we can’t ever leave him with other caregivers, it makes him more sheltered than I’d like him to be. Also, it makes it tough for us to see her and my dad – my husband already gets really frustrated with her quirks and the opportunity to leave with me is one of the few things that will convince him to visit. If he feels like we’ll have to spend 24-7 in their presence he will probably never want to go!

7

Yeah, I totally get that! Even our father-in-law, who is an ER doc, panicked the first time he treated Samson’s lows and force-fed hi two glucose tabs. I know I did – I thought my heart would explode the first time. I expect stuff like that! Everyone panics the first time and I actually find it suspicious if they don’t, you know?

But I expect it like four or maybe five times and then you get the hang of it, especially for the very mild lows (or not lows—137 is not low and he never got below 100!).

I mean, I still hate lows. I got super nervous the first time I saw a number in the 40s!! So I totally understand and sympathize. But at some point you have to adapt, right? Like with enough practice it shouldn’t be as scary??

That’s what is so weird with my mom. Each time she watches him she does not seem to gain any more confidence or skill. She has watched him actually now many times. We’ve done the thing where she’s in charge of his numbers, I’m in another room and she can come check. We’ve done walks around the neighborhood where he’s a block away. We’ve done grabbing coffee in the place next door. Somehow none of these incremental steps seems to build on one another.

8

I think, as others have expressed…she’s just panicking. If you don’t live it 24/7 you just won’t be able to respond adequately. Unfortunately, diabetes isn’t like riding a bike. It’s more like learning Chinese…if you don’t speak it every day, you just forget and panic when people start asking you questions in Chinese so you start mumbling like an idiot.

We plan to become “less protective” of Liam when he’s able to “self manage”…before then, his life is in our hands, and we refuse to let anyone else …potentially take any blame for any negative consequences for any actions that may occur as a result of some action taken.

9

For us I think that seems like a recipe for burnout and ultimately poorer care for Samson. I think that’s the thing. I can see we need some outside help. And I really do feel sad about the idea that Samson may simply have less of a bond (or even any exposure to) my parents because they treat him like a burden or a fragile china teacup.

I guess we can always pay someone for babysitting, which is fine if we can find that right person. But it’s just hard to imagine a paid caregiver having more vested in his treatment than my parents or my husband’s.

10

@Chris, that’s an idea, especially for short outings. I guess we could also run him a little higher (with a target of 150) when he’s in other folks’ care too.

But what do you do in the instance where he says something like “I feel low?” Our kid can’t really feed himself glucose tabs in a self-regulated way, so at that point that he’s low, my mom or any other temporary caregiver would still bel required to give him a glucose tab and take some action. Calling the paramedics for a mild low does not seem like an optimal solution either.

11

I agree completely, also know that self regulation of candy around diabetics and brothers of diabetics isn’t something that often happens (even at older ages) :slight_smile:

We had problems not dissimilar to yours when a caregiver wanted access to the data and wanted to micro-manage my son’s care. We tried it once and it didn’t work for my son or us, so we shut off access to the data. When the caregiver see’s him acting funny she calls us, we check the bg and advise what to do. Also when out, my wife or I check every 30 minutes and would text the caregiver instructions.

We only wanted her to call paramedics if my son passed out, which has never happened. (fingers crossed)

12

I guess we could try that with my mom. WE would probably check his numbers every 5 to 10 minutes though :slight_smile: The tricky thing is that she may not even follow instructions given by phone. At least in this case she didn’t. But maybe that will relieve her anxiety. It almost seems like she’ so overcome with anxiety that it short-circuits her brain function. So if she can’t see the numbers she won’t be able to worry?

In that instance her instruction would be: Call if you have any concerns or he’s acting strange. Then follow the instructions we give you by phone.

13

That would lead me to only let her watch your son with someone else’s supervision…

14

yeah that’s not possible for most of the time. My dad is there, but we all just tacitly agree he doesn’t have the cognitive function to monitor his own diabetes safely, let alone my son’s!

I think it’s worth a try though where we’re literally just outside in her backyard or something, as a test, to see if she is capable of following instructions on the phone if the numbers aren’t there.

15

Baby steps. We do this all the time! When family are visiting and we’re sitting outside…a family member is in the house (or can be) with the receiver and just lets us know if a number crosses a certain threshold. It’s something they can handle and we still have a bit of freedom…even if it isn’t really away from home…but away from Liam and allowing others to “be involved” even if to a small (yet helpful for us) extent.

(BTW - they don’t know it, but we have a phone and have the numbers ourselves outside with us…they just don’t know that.)

16

Ugh, @TiaG,

This is heartbreaking. I love that you are reasoning through it and trying to discern what feels entitled and what feels reasonable. Whatever is reasonable to expect, this situation feels worthy of grief that your mom is unable/unwilling to lean into the situation and to care for Samson in a way that offers you respite from the relentlessness of his disease. I loved the characterization of your mother in law being willing to press forward out of sheer love and devotion.

And, yes, in theory she has no legal or moral obligation, but is this really how we want to be as parents? Caring for our children or for theirs out of some contractual relationship completely divorced from our heart-level connection to their needs? It seems to me that this is less about what she is actually capable of (which seems to be a lot) and more about what she isn’t willing to do. And that is all sorts of maddening.

It seems that she has communicated clearly in her words and in her sabotage of Samson’s BG management that for whatever reason, she is unwilling (or if I’m being generous, unable?) to take this on. That’s the rub. We’ve experienced something similar with 2 family members. One who, though devoted in other areas, is completely unhinged by our eldest daughter’s feeding tube and unwilling to learn it. The other with a parent almost wholly disinterested in our children. Both are heartbreaking to me at different levels. The one for the unwillingness to offer respite to us, the other for not caring to really know the grandchildren. It communicates desertion. I don’t intend to imply that I’m not a big girl who can handle things with or without support or even that I’m entitled to a certain about of care from grandparents. And yet I know for sure and certain that this is not the sort of grandparent that I hope to be.

You’re doing the hard work of sorting through this. And I think your mother has communicated her intentions and desires clearly. For me, this would require some working through emotionally and would also mean that I would not trust a child with this person, however much my own justification of my parent attempted to give her the benefit of the doubt “but she’s so smart, she has x degree, she is capable, we are capable at training her, etc. etc.”

Also, loved this idea for other potential care-takers.

Ultimately, this.

1 Like
17

@TiaG, my mother came to stay with us a couple of weeks in February, and she stayed with my son a couple of times over that period while we were out of the house.

Obviously, we don’t have the same problem as you do, because my son is much older (12) and largely able to take care of himself. My mother is older than yours (she is in her late 70s). She lived through several local wars when we were growing up (Navy brat, African naval bases), had no problem walking around armed under her raincoat in troubled times, rode motorcycles with my father, and managed medium sized organizations for many years. So you’d think that she would be able to oversee my son. But she isn’t (

Even though he can take care of himself, she called us multiple times for no reason while we were gone. We had briefed her multiple times, left her simple notes – my son can take care of himself, after all. But she is in a tizzy the moment anything happens, and just cannot make simple diabetes management decisions.

After reading your post, I am realizing that our mothers are, for some reason, panicking with diabetes, despite their competent background. It must be a psychological issue for some reason.

So, possibly, what your mom is saying about not wanting to take care of her grandson is due to fear of not being able to take care of diabetes issues. I know mine is afraid of it now. For my mom, I think it may change later, if she spends more time with us and the boy – so that she can see exactly how things happen.

When they were growing up, diabetes was almost a death sentence. So they must freak out more than we do.

1 Like
18

That is a fact! Many doctors even stated this to patients at diagnosis. Things have changed, but that mindset is still present in some of my contemporaries.

3 Likes