So I have been quiet the last few days, as I have been dealing with my overwhelm...my caregiver stress...my anger...As I write this late at night I have calmed down....but I am drained...emotionally spent....
Michael is coming home fromt he hospital tomorrow....and he will have to continue his IV antibiotics for the next 4 weeks....9am and 9pm.....And GUESS who has to learn how to do this sterile procedure on him? GO AHEAD....TAKE A WILD GUESS....
I addressed EVERYONE that I needed to....telling them that I did not want responsibility for this procedure...flushing a pic line that is in his arm...hooking up both an antibiotic bag and a saline bag...getting it to drip at the right speed...and then taking it out all while being sterile....
BIG BUSINESS our health care....things that use to be done at home by registered nurses are no longer found to be necessary....let the caregiver...the family member deal with the loved one ....
I was told..."take a deep breath dear...we teach people to do this every day"..."after all this is your loved one"... WHAT? I feel as if my words don't mean a thing....as if somehow I am less than because I do not wish to take this on....I feel guilty for not wanting to take it on...and yet....ONCE AGAIN....that does not seem to matter to anyone but me....
I have gone along doing everything that I have had to do...paperwork...Dr. appts...laundry...shopping...house disinfecting...yard work..bill paying...everything that has defaulted to me because of this disease....and yet....for whatever reason it is against the rules (and I do not know whose rules they are) to say NO MORE....I can't do anymore....
I wonder tonight why that is....because if I break....if I get sick...if I can't do this....Who will?
rambles from the shadow side of life...About living...about living with dying....This is where my heart will pour forth...this is where my shadow will be exposed...this is where I will cry...where I will laugh...where I will become one with that shadow of life...
6 comments:
whew.
talk about pressure...
talk about being stuck, hemmed in,
overdone...
and to feel like there's no relief.
i'm so sorry.
i could say oh you'll do it, you'll learn, and you'll become stronger...
but that seems to totally disregard what you have to overcome to do it.
i think maybe that's the key.
you will overcome what you have to to do it.
and you'll see that you did it.
but the thing you may not see right away is the part about overcoming all these very real
feelings.
the incredible digging you have to do over and over and over again.
nothing will be hard after all of this, pattie.
Oh Patti,
I wish I could help somehow. I totally know the overwhelmed feeling you describe. And the guilt.
Thanks for taking the time to write this post. I'm hoping that getting some of the anger out helps in some small way.
I believe we are all connected somehow. I don't know how, be there is a thread of love, or spirit, or light that we all have. I can't be there for you but today I will take extra good care of my dad - and myself.
And I will pray that you find some relief. Some time for a tall glass of iced tea with a sprig of lemon in it, or a hot bath with lavender oils, or a nap under your favorite quilt, or a big scoop of ice cream. I want to tell you to take time out for yourself, that the "shoulds" on your list will take care of themselves, that you need a break - you deserve a break.
But I know that words are easy to say. I know that even words that are true can rub a sore spot raw. And I know that you already know all the words.
Instead I send you a great big hug. It doesn't seem like much but I hope it helps.
Oh Pattie, I can't believe all of the memories and emotion your post brought back for me. I remember feeling the exact same way when I was told I would have to do all of this for my son. I am the least 'medically qualified' person you would have ever met. I did learn how to do all of it, I didn't like it, but I did it. It seems to add so much stress, stress that you don't need! I guess my advice to you is, if you aren't comfortable with doing it on your own, speak up. My son's insurance only wanted to cover the visiting nurse for one day, while she trained me. I insisted that they send her out a couple more times and then any time they changed anything. You might also want to ask about a portable IV pump, it's easier to set the drip. Some of my son's had to be run over a 3-5 hour period and it was a lot easier than using the traditional stand. A lot safer for the patient, too. No tripping.
It's the pits, having all of this put on your shoulders. You have every right to feel as you do. Please know that you are in my thoughts and prayers each and every day. I know you probably think you can't get through much more, but you will. You won't know how you did it, you just will.
Take care of yourself and take people up on their offers to help. I know that is hard to do, at least it was for me. Once I started to accept help, things got a little bit easier.
Please accept this big hug from me to you.
Dear Pattie:
I read your post out loud to my husband this morning and then I read him Deb From Denver's response.
We shed tears for you and we're lifting prayers for you and Michael.
We thought initially that the visiting nurse would come each day to help us, we were stunned when on her first visit she told us that was it, we could do this...
The first few days we made calls to the visiting nurse to make sure we were doing it correctly. The flow meter was not working for Dan, it was taking too long to finish the infusion, so we ended up counting the drips in 15 seconds and multipled it by the rate they gave us. Two hours ended up being better than three and a half. We never knew about the portable IV pump that Deb mentioned, sounds like a good suggestion.
After experiencing the expertise of the nurses in the hospital, all we could feel was: "How can they leave this up to us???" BUT, we got through it, somehow. Looking back it felt like our lives revolved around care giving, there was no time for anything else.
The difference is that we had each other. Deb makes a good suggestion of taking people up on their offers to help. Our son had very little appetite, but meals brought in by others nourished us.
There is nothing "fair" about this process.
We are praying for you and Michael and when you reach the end of your rope, it's apparent you are heard by a very caring blogging community.
Here's to making it through another day...
Pat Dalke
Pattie, I had a similar (much less severe) dose of this myself today at the ICU with my Mom. I was furious! I was grateful one minute, furious the next, laughing one minute, and crying the next. I was incredulous!! You want me to do WHAT to my Mom? What??? I do not work here, I am not trained, I'm sorry you aren't having a good day, or that you feel uncared for, or are unhappy with your life, or WHATEVER... (in this case the nurse's lunch which had to be taken right then... and then I saw her down the hall giggling with friends)! You get paid... oh I don't know $40-$50 an hour and YOU want ME to do WHAT? And you and the surgeon expect me to LEARN how to do this and that,and change the dressing everyday MYSELF?? One day you tell me my Mom is almost dying and the next day you expect me to transport her to another facility in MY car, with CLOTH seats, for an entire hour driving, and then want me to do what???????? Pardon me, I just haven't slept or eaten or quit worrying or praying for over a week, let me just jump right in there!
With my "little" troubles I simply cannot IMAGINE what you must be going through. What the heck is up with our Health "Care" these days? And THEN they'll charge us over $100,000 for the week, and I get to do their jobs, not cause further injury, AND clean up bodily fluids? So you KNOW I just took a medical retirement and I am not well myself, and you expect ME to do all of this?? I can hardly take care of myself right now!
SO sorry, I got started and couldn't quit. You are AMAZING! This is your HUSBAND. I cannot imagine. I am praying for you all and hugging you across the skies tonight. I hope you can "feel" it!
Love,
Sheila
P.S. CALL your darling Grandson! It will help! It always helps me to call Brock. It is such a relief and such a "shot" of love right when I need it. It gets me outside myself too. When you have to talk silly to them, you just have to giggle.
Deb's little angel Delainey cheers Grandma up everyday, I know!
Brock put on clean clothes and put on a tie the other day, picked a bunch of rhododendron flowers from the tree, and asked his big sister's friend Michaela to "get married"! I received the "wedding photo" a few minutes later, and the whole thing made my life that day so much easier and happier!
Love and Hugs, to you and Deb, because I know she'll be reading this too! (We've been friends for almost 40 years)! Anyone that can put up with me that long... well, you know.
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