Saturday, January 28, 2012

Another letter from John that really made me think......

He said,

"My kids are used to her testing and needles and know if mom is low they need to get surgar..."

I had never even considered how it must be to be a child and have a mom who you have to care for.  My mom always cared for me, not the other way around!  And how frightening it must be when mom passes out.  Geez!  I have such a needle phobia (and my own mom was a nurse) I simply can't imagine having needles all over the house.  I know it's not just John's's hundreds if not thousands of other kids who live with a diabetic parent that have to go through this.  Childhood should be a time to play and be a kid....not a time to care for a sick parent, that's for sure!

i keep thinking back to the move "Steel Magnolias" where the little 2 year old was sitting there crying his heart out when dad came home and found mom passed out.  As a parent, that has to be the last thing on earth that you want to happen.  So as a diabetic parent, how on earth could you be non-compliant?

Yet I understand that there are those spouses and parents who are non-compliant for their own reasons.  It's just so hard for me to understand why.

John said,

"But even for me after 10+ years of this, you just start to get worn out, That is when I searched for a support group for diabetic spouses and just found information on how to support the diabetic.... Your blog was the only source that I could find were someone anyone can relate in someway anyway..."

I think all of us have been so disappointed in support groups.  They really do just tell us how to support the diabetic.  And I have to agree.....I'm beyond exhausted from this disease....and I'm extremely healthy.  The last 3 years have been beyond stressful here with hubby's heart attack in 2009, triple bypass in 2010 and double spinal fusion surgeries in 2011 with 8 dialysis treatments to get his kidneys functioning again.  No one should have to go through that much care-giving on top of the normal everyday diabetes caregiving.  And I wake up some days thinking that I can't move....I'm just that tired.  

Yet, if I went to a counselor, they would just tell me that my role in life has changed and I'm now a "caregiver".  So yes, John, I truly understand - there isn't much (if any) support out there for those of us who's role has changed......against our wills....and in an untimely manner.  (I'm not ready to be this "old" when I'm still this "young".)

So, while John's life is much different than mine - I don't have kids, I don't work....and I do have time to write about this disease, he probably doesn't.  He has TWO full time jobs (work and home) and I'm surprised that he's had time to google and find my blog.    But I can relate to that as well.  When my hubby was so sick....I really had no time to blog. It was just short little bursts, not feelings, fears or thoughts.  When I go into times of 100% caregiving, there is just no time for anything else and I am truly grateful that I am retired because I know there are days when I could not go to work.

John, again, I just wish you the best.  I hope you will keep writing and sharing and that maybe others who read this blog can write in their suggestions.  I know it really helps to know you are not alone and that there are other spouses going through the very same emotions that you experience.



1 comment:

batgirlnj said...

What I find so touching about your post and John's post is that you mention being a normal diabetes caregiver for your partners. Even when I was non-compliant my husband never allowed himself to be my 'caregiver'. As long as I am physically functioning and there are no other issues like you have had to deal with, then there is no reason for anyone other than myself to care..for myself.

Other than complications, diabetes should not affect your lifestyle in many other ways. There is nothing that I depend on him to do for me. I should say that I am 44 years old, so that might make a difference, however I cannot imagine my husband needing to change even an iota of his lifestyle to take care of ANY of my diabetic needs.

If I did not tell you that I was diabetic you would have no idea. Our relationship is one of married 'partners' and definitely not one of my dependence on him. He did go to the diabetes classes given at our local hospital so that he would understand the disease better, and what is going on in my body, my feelings, my actions, and what he can do in case once in a blue moon, I was incapacitated and he would need to administer a needle or something else.

John mentioned that he has only found support groups out there and that's all that there should really be. In my opinion there shouldn't be groups for partners as caregivers, because most diabetics shouldn't ask their partners to be their 'caregivers'. But, I guess this all ties into the denial by the patient.