Hi,
My name is Wendy and I am the primary caregiver for my husband. He has "end-stage" COPD - which is chronic obstructive pulmonary disease - a horrible deteriorating illness. I have to watch him die. It doesn't get any worse than that!
So, I have created this site "Caregiving is NOT for wimps" to share my experiences with others who find themselves in the same situation.
Caregiving is demanding, draining and sad. I did not want this (neither did he!) It is upsetting for the patient (family member) to be sick, depending on others for basic care.
It is not fun for the Caregiver - me - to have no social life and having to watch someone I love go down the drain. It sucks!!!!
One thing I keep asking myself is "how did I get here?"
Who knows? This is life and the sooner I accept it, the better.
But, in the meantime, I need to vent. I need to hear your stories. I have joined support groups and they have proved a godsend. Connecting to others is a way of sharing our burdens, our grief and our joy. Yes, joy - somewhere in all of this (they tell me) is a gift, a blessing in disguise). Well, let me tell you, it's time to take off the disguise.... and find the blessing.
This is my first post - I'd love to hear any other Caregivers. I know you're out there.
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6 comments:
I am not caring for a loved one with an illness, but a babe with bad reflux. So I don't know exactly what your life is like, as my babe will heal. But I do feel the pain of seeing a loved one suffer- not pleasant!! It's a wonder we're not all alcoholics and druggies!
Speaking of..... i need a glass of wine!!
I had forgotten to tell you about this little freudian slip or whatever.
On John's death certificate the doctor had written in not very good hand writing
"Chronic Destructive Pulmonary Disease".
I thought "Ain't that the truth?" Much better than obstructive, it gets at the core of the whole thing. Of course he really did write obstructive. I think we should change the name, though. Then it covers the scarring and the other too, plus what it does to our lives!
Judy
You are sooooo right on! I have often "misheard" Destructive instead of Obstructive!
I enjoyed Brenda's comment about needing a glass of wine! I almost thought I was a little excessive until my father-in-law mentioned that he & the Mrs. enjoy a glass or two before their afternoon nap everyday. I'm only 99lbs soakin' wet so two will do! But it does take the edge off an unbearable day-to-day struggle watching a loved one slowly deteriorate. We do everything we can as caregivers and often feel that it's not nearly enough, so we need to do things for ourselves to survive.A bubble bath, a facial, a tan @ the tanning salon in winter. And lets not forget to get some exercise which always gives us a litte more energy and helps reduce stress so we can sleep better!
Thank you for creating a place where we can share and vent. I am trying to deal with my 71 year old hubby and his denial of the long term condition of COPD. Being an emotional eater, I have gained all the weight he has lost. What I wouldn't give to trade weights with him(he is at 122 while I struggle at 195). Also, he is very frustrated by not being able to take care of things around the house, but he comes up with these "things that need to be done" and I end up being the one to "do". Glad to find folks who "get it".
Oh Fran, I truly understand! I so wish I could exchange weight with my husband. He's down to 115 lbs. fully dressed!!! And I have put on all his wt. We joke about trading bodies - that's about all we can do.
My hubby (64) was also in denial at first. Like I said - he used to take off his 02 cannula and bop around as if nothing was wrong. Now he can't - in fact sometimes he wears 2 cannulas; the portable one and the regular one.
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