Are There Specific Resources That Would Help More Grandparents Take An Active Role?

[BettyB]

I've been running the Grandparents' Track at the Friends for Life conference for the last couple of years. It's grown dramatically each year and is going to be even bigger this summer. I have been checking out this Forum as a way of making sure our sessions are as helpful as possible. I'd appreciate hearing about tools or strategies that helped you build either your knowledge or confidence to "jump in!" For those who are newer to this challenge, what information would have been most helpful when your GK was first diagnosed? I'd like to develop a resource for families that would help more grandparents be more involved from the first.

[EmmasPapa]

I'd like to develop a resource for families that would help more grandparents be more involved from the first.

Great to see your post here! I am the grandparent of a 3 1/2 y/o that was DXed at 9 months. My wife and I try to stay involved in her care in a constructive yet unobtrusive way, and to treat her just like we do her non-D brother - with whom we have a very close relationship. Fortunately for us, her parents are our best resource. They have been very supportive of our efforts and keep us up-to-date on details concerning her care.

Since becoming a member of the CWD Forum, I have developed an interest in the dynamics of the relationships between the parents of D kids and the extended family. I realize that the reading of this forum is largely anecdotal evidence, but I am struck and disturbed by the apparent lack of family involvement - particularly by grandparents - that I read about here. I am sure that many families have great relationships but my heart goes out to those mothers and those children who do not receive the support they need and deserve.

I sincerely hope your efforts will help to educate the extended families on the importance of their involvement. Not just in D care, but in every day, loving human care.

We will be unable to attend the Friends' Conference this year, but we hope to be able to attend one next summer.

Good luck, and please don't hesitate to email or PM me here if I can be of any assistance.

[BettyB]

Thanks! Boy do I share your concerns. In my experience - both as a clinician and in working with families at the CWD conferences for years now - a close, supportive relationship like you have built in your family is the exception, not the rule. What I'm most interested in is how we can make that more common! I keep coming upon three key issues - one is communication (families who communicated well and didn't have power or boundary issues before the diagnosis seem to do better, others need to build those skills AFTER the D bullets start flying, which is tough); the second is fear (fear is appropriate - the trick is finding a way to keep going and build confidence in the face of fear instead of letting it be a barrier); and the third is knowledge and skills (there are certain things Grands need to know and be able to do to stay in the middle of things - different skills make different levels of involvement possible). What I'm hoping to hear from the folks in this forum is what worked (or didn't!) in communicating, overcoming fear, or building their knowledge and skill. The things that were part of relationships like your own - and the things that were missing where things haven't turned out so well.

And for an old girl new to this, what's "PM?"

[EmmasPapa]

And for an old girl new to this, what's "PM?"


:)PM stands for Private Message. If you want to send me a Private Message, which is kinda like an internal email, just click on my name (EmmasPapa) in the upper, left-hand corner of this post, and select "Send a private message to EmmasPapa." If I am on-line, I will get it instantaneously. If not, I will be notified the next time I login.

By the way, I think this thread is very important for the "Parents of Children" forum members to read and should be transferred to that forum - rather than remaining here in the Grandparents forum where it won't get as much exposure.

I don't know how to do that but I am going to reference this thread in a new post so that more parents can learn of your efforts.

Thank you!

[jules12]

I am not the grandma - but my mom doesn't do computers very much so I thought I would provide you with our experience. My mom says her biggest fear is making a mistake that will hurt my son. I keep having to reassure her that even if she does make a mistake (like I have done), we check his bg regularly that we will catch it. In the beginning, she would call me at every check when she watched my son. I would provide her with lunch or breakfast counts and usually packed those meals so she wouldn't have to do any calculating. We keep a low box as well as a snack box at her house. In the box, I have snacks that I have written the carb counts on very large (small print is hard for her).

We also had a learning curve because all she new about was Type II. She kept wanting to feed him sugar-free stuff or quit making those homemade cookies we all love - we have since changed that and I have converted several of her recipes so we now know the carb count.

Now she has progressed so that she is more comfortable figuring the carbs for some things - she still prefers that I check them. I don't have to do as much prep work before coming to her house - I think it helps to ease her into it.

She didn't like giving my son shots - only used the novo-jr pen but did do that - she loves the pump but she cannot always do more complicated things with it (too much like a computer).

I am so thankful my Mom is there for me and willing to help out. Many of her friends said they would be too scared to take on that responsibility. I wish she wasn't as fearful about making a mistake. I think easing her into it without information overload really helped. I hope this is the type of info you are looking for.

[Sallysweets]

I think the biggest thing that helped my parents jump right in and help my daughter was I had them get involved in all the training and education sessions we attend. Also one of them always goes to the endo with us. We are considering getting a pump and I am having them look over the information and they will go with us to the training sessions. They have always been a big part of my daughter’s life and I don't want that to change just because of diabetes. I guess with my parents we feel knowledge is power and that is what makes them comfortable.:D

[CAGrandma]

When my grandson was diagnosed at age 2 I was lucky (?) that my daughter's family was actually living at my house for awhile. And since my granddaughter was all of 1 week old at the time it was obvious that my daughter needed help. But I do remember holding back from the diabetes care at first - I didn't want my daughter to feel that she had to focus at all on teaching me, or on explaining/justifying herself to me.

Fortunately we got past that quickly. It really helped that I always went to the endo appointments and she made it clear to them that I wasn't just there to babysit the kids, but that I was part of the team too. We always counted carbs together - she said she liked having another adult double check her numbers, so we both learned together. She also had me verify the amount of insulin in the syringe she prepared, and then when I started giving injections she verified mine. I think the double checking routine was very helpful - lots of review and less worry about making a mistake. Now, 3 years and a pump later, we'll still do that sometimes.

[Brensdad]

Thanks! Boy do I share your concerns. In my experience - both as a clinician and in working with families at the CWD conferences for years now - a close, supportive relationship like you have built in your family is the exception, not the rule. What I'm most interested in is how we can make that more common! I keep coming upon three key issues - one is communication (families who communicated well and didn't have power or boundary issues before the diagnosis seem to do better, others need to build those skills AFTER the D bullets start flying, which is tough); the second is fear (fear is appropriate - the trick is finding a way to keep going and build confidence in the face of fear instead of letting it be a barrier); and the third is knowledge and skills (there are certain things Grands need to know and be able to do to stay in the middle of things - different skills make different levels of involvement possible). What I'm hoping to hear from the folks in this forum is what worked (or didn't!) in communicating, overcoming fear, or building their knowledge and skill. The things that were part of relationships like your own - and the things that were missing where things haven't turned out so well.

And for an old girl new to this, what's "PM?"

Might I suggest a 4th key issue? It seems that there might be some physical limitations as well. I'm not referring to my dad (Emmaspapa), but grandparents might face physical limits to caring for D grandkids such as poorer vision (which hampers their ability to draw up accurate insulin doses) and poorer hearing (that limits their ability to hear pump alarms).

I would suggest that technological innovations be discussed in-depth as solutions to these issues. For example, my dad can't hear Emma's pump alarms, so when she stays with him, he wakes every two hours to look at it (aided by the light he wears on his head).

It would be neat to find practical solutions to these problems using technologies that weren't necessarily developed for these applications.

[EmmasPapa]

It would be neat to find practical solutions to these problems using technologies that weren't necessarily developed for these applications.

Excellent suggestion - even if he is my son.:)

[BettyB]

Might I suggest a 4th key issue? ... physical limitations.

Great point. I'll add a chapter on Barriers and include these issues. Geography is another one. When families don't live close by it takes extra effort and creativity to be involved and build the familiarity and skill required for everyone's comfort.

The specifics you've provided about the adaptations your family has come up with are just what I'm looking for. Hope others will do the same. I've had grandparents who used syringe or pen magnifiers (originally intended to help older folks drawing up their OWN doses) to help them draw up a GK dose. Has anyone tried that? Was it helpful? And now I know what the "headlight" is for. Cool.