Sunday, June 29, 2008

Where are all the resources for spouses?

I see loads of stuff for parents of kids with diabetes. I see loads of stuff to support families of compliant diabetics. But where are the helps, the supports, the suggestions, ideas for spouses and adult children of non-compliant diabetics?

I have read thousands of webistes that tell you what to do to get better if you are the diabetic. But nothing that tells you how to live with a person who doesn't follow those suggestions.

I've read all the books written on this subject (I think) and only one barely touched the subject - and it was written for adult children of non-compliants (don't ask - I wouldn't remember the book!)

I've read so much about how to prevent diabetes as well.

I've also found frightening little about ESRD - from the standpoint of family life once that sets in, caregiver help, etc.

I've read lots of stuff where they tell the family to be supportive of the diabetic person. Tells you to change your own diet to match that of a diabetic, to only stock the foods they will eat in the house,

that all assumes that the diabetic will be compliant. I see no reason to give up chocolate any more. I gave it up for 7 months and he simply went to the store and bought candy and cookies whenever he wanted them and ate them in front of me!

So, where is the support for families of non-compliant diabetics? Anyone found it yet?

6 comments:

AmyT said...

Well, I've done my best by offering a forum for partners and spouses to share their experiences...

Have you visited the Diabetic Partner Follies at
http://www.diabetesmine.com/category/personal-stories/the-diabetic-partner-follies ?

I agree there could be much more. Maybe you should kick something off.

Best,
AmyT

Shannon said...

Maybe there are other spouses who are thinking the same thing as you.

Many of the support sites were started by diabetics and the parents of diabetic children.

Do you have the energy to be an advocate and start a place (whether online or in person) of your own?

I go to a support group that was started by the father of a child with diabetes because there were no groups in our area.

I think you would make an excellent leader of a group for spouses.

Caromora13 said...

You raise a good point and I don't know any resources such as what you ask specifically for diabetics. However, I believe it is similar to living with any kind of addict, for that is what I believe non-compliant diabetics are.

I have three adult diabetic children out of my five children and have a similar situation with a non-compliant diabetic daughter, although not as difficult as your situation because she does not live with me (although I have raised her 3 sons and still am raising her youngest who is handicapped).

My 45-year-old daughter, who was only diagnosed 10 years ago, refused to follow any laid-out diabetic plan...and, in fact, found that she could feed her life-long anorexia by eating to KEEP her blood sugars extremely high, which of course melted the fat and muscle off her until she became skin and bones. The result was nearly a complete shutdown of her organs and she has now been on kidney dialysis for the past 2 months. She is not a candidate for kidney transplant, either, so this is a lifetime change for her. If she stops dialysis, she will die...plain and simple.

For me, I have spiritual resources...and along with that, I've attended Al-Anon meetings for spouses, children, and parents of addicts, which was very, very helpful...and even more helpful, meetings of various Codependents Anonymous groups.

I would highly recommend checking out these kind of groups in your community for yourself...AA is one place to start. They usually have lists of resources or meetings for the other kinds of groups.

I've read where you do take care of yourself by occasionally going away, and I think it is wonderful that you do that. Finding a local group where you could go weekly, or more often if needed, to vent and to receive support from others, even if it is not specifically focused on diabetics, is another way to take care of yourself.

Best wishes,
Carol

Diabeteswife said...

Wonderful responses! Shannon, today, not a good day. I'm beyond exhausted. But maybe in a fw months I would have the energy. I do have my art groups and although we don't talke about diabetes, I have tons of support from those dear women, on a near daily basis.

amyt. I have been to your site many times. But I never knew there was a forum! And I still don't know how to get to yours - is it on the list on the right? I do click on them from time to time and for some reason, I never see much from spouses of non-compliants. If someone could point me in a direction - I'd be happy to share!

Carol - I have a delima for you, so I will write it in a blog, stay tuned!

Anonymous said...

I found one resource on
'wife of a diabetic'! You put into words that I am so discombobulated I can't verbalize like you do. thanks for sharing; I'm neck and neck with you......

Widow of Diabetic said...

Dear WD and others

I've never heard of any resource for the caregivers. And if you are a caregiver for a non-compliant, the medical folks look at YOU like you're the bad guy-at least that was my experience.

My son is still struggling to forgive his father for the anger (during lows I'm certain) and verbal abuse while he was growing up. He is now 22 and only remembers the bad....very little if any good associated with his father. One particularly bad day when our son was in his early teens, his father pushed him to far and tried to physically intimidate our son...he forgot the kid grew up...he was the one on the ground and my son had massive guilt about bullying 'a cripple'. Even now after my husband has been gone for over 3 years...the emotional wounds are still deep. If only there were a way to make the non-compliants understand the damage they do to those that love them most.

WD - the blogging you do to vent your frustration is - in its own weird way - a help because you read and know there are others. This is not something You've done wrong, its a result of an insidious condition dealt with poorly by a loved one. Your blog is an emotional safety in numbers if you will.

ESRD is not kind to diabetics, particularly non-compliant ones. Transplant is an answer, but if they catch wind that the patient is non-compliant, questions will be raised as to whether it is 'worth wasting' an organ on someone who will not follow a strict regimen after surgery.

I wish all of you in the middle of your experiences luck and pray for you all. I miss my husband but not his condition and all of the baggage that came with it.