Posted by: thedianestory | April 3, 2013

From Mom

April 3, 2013

When I asked my mom to post about supporting me through endometriosis and what it is like to be a caregiver for an ill daughter, this is what she had to say….

But first, a note to mom:

Thank you mom, for ALL you do for me. The sacrifices you have made are great. The attitudes from people you deal with who don’t “get it” are abundant, and your kind, loving attitude doesn’t stop.

Most always with a smile on your face, you carry on and do all you can to encourage me. I love you for that. I have no clue what I would do without you nor how I’d have made it this far without your love. Thank you for loving me mom, even when the pain spikes and I’m being unlovable. ;).

I love you to the moon and back!

Love,
Di

And now, in my mom’s words….

How do I start?

The impact it has on my life is the following:
Always being there as a support to my daughter. Feeling helpless that I can’t do more to make it go away.
When there is a day that she feels like getting out we try to do that. We may plan on doing some fun shopping and then it is cut short due to the pain becoming intense and she needs to go back home to rest or go to bed for the day. Even on trips she may sleep until midday before she has the energy to be able to function. We just try to enjoy the time while we have it.

To those who may be just starting down the road of supporting a loved one with a chronic illness, my advice is to be supportive and enjoy times that you can do things. Learn how to be an advocate in the medical part of things and pushy when need be. Seek out advice as to doctor references to help. Try to have a good support group to help with things when you as the care giver can’t do things. It is very hard when you don’t feel well and your loved one has this disease and can’t do much.

It is very hard when you can’t do much to help your loved one and then you get comments from people who have no clue what is like to be a full time care giver. So as I stated above it is good to have a support group but it is hard to find that because most of the time it is your friends. Life becomes difficult when you ask for help and you can’t get it.
Today’s world is not like it was 20 or thirty years ago – people are too busy to care about each other. This is even true in some of our Christian communities.

In short to wrap all this up; be supportive, encourage the one who is ill and also try to help the family any way you can. Make sure to call the person who is ill and ask how they are doing – don’t just go through the person you may see all the time. This means a lot to the ill person to call them personally.
I pray that one day my daughter will be well and can live out her dreams. We know it is all in Gods timing and not ours.
God Bless, Love Mom 😊

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