February 26, 2014

What is a Caregiver?

There is this issue that has been bugging me for awhile. It is that I feel I am not seen as a caregiver to my husband.

It seems that people think of caregivers as those who tend to the elderly or children.

I get a newsletter from the chain of clinics my family sees doctors at. In it I've seen a blurb about a support group for caregivers. Looking closer, I see that it is specifically for those who care for someone who has Alzheimer's.

In the waiting room of my husband's cardiologist he picked up a copy of the American Diabetes Association magazine. Looking through it on our way home, I noticed in the table of contents an article "for caregivers". I flipped to the page number and read the words "caregivers of children with diabetes".

And I thought, "What about me?"

Is a wife who is there for her husband through all of his health problems not also a caregiver?

Because let me tell you, I am indeed a caregiver to Mark.

Each time he needs me to run upstairs to get something because his legs are too tired.

When he needs help redressing his surgery incisions.

If his blood sugar is low and he needs something to eat.

When he had bypass surgery and they discovered infection surrounding his heart, I had to be taught how to give him IV antibiotics through a port in his arm.

Back in 1996 when he got a kidney and pancreas, his transplant coordinator turned to me and said, after hearing that we lived together, "Congratulations, you just received a transplant too."

And when we very first moved in together in 1994, I learned how to give Mark insulin injections in his arms, so he could sometimes not have to give them to himself in his abdomen.

Through surgeries, infections and hospital stays, for nearly 20 years, I have been helping my husband manage his health problems.

If that's not a caregiver, I don't know what is.

Would I not benefit from a support group or helpful information in a magazine article?

Or is it that the vows "in sickness and in health" mean a spouse is merely obligated?

These are the things I felt until I recently turned to Google to investigate. I found:
So OK, there are some resources out there. I feel relieved by this, but on the other hand, I wonder why I had to go searching for them. Why has no one with Mark's dialysis clinic or his endocrinologist or cardiologist or, or....ever pointed us in any of these directions?

I feel it just goes to show that taking care of the WHOLE person/family is NOT happening.

Like, no one seems to think my children will need any counseling until it falls under the umbrella of bereavement.

Why does their dad have to be dead before the situation looks like something that might need attention?

These are obviously open-ended questions. I don't expect anyone reading this to have the answers.

I just wonder if this is yet another healthcare hurdle, you know? I wonder why I had to seek out counseling for myself. Why, when my primary care physician prescribed an anti-anxiety medication for me, did he not also insist I get into counseling?

Why do I even have to wonder?

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