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Caregiving During and After Surgery

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sgerrard:
This is an invitation to Rich, Chris, Dave, and other recent caregivers, and any other caregivers as well, to comment on what it is like. In particular, during the week leading up to surgery, the day of surgery itself, and the weeks after.

It seems to me it has been valuable for the caregiver to join the forum, or at least visit a little, as well as provide the requisite updates. I would like to hear more about it, and I think other pending caregivers would too. We get little pieces of it here and there, but it might be useful to have a topic on the subject as well.

Steve

vossman:
Becoming a care giver has been one of the most challenging, scary, and rewarding moments of my life as Anissa and I make this journey.  I have to say that I write this so that it may help someone else who travels this unexpected journey and that it may help in some way.

Our journey began in mid-February when Anissa got the call from her ENT that they had "found something" on the MRI.  Anissa called me and told me that we need to go to the ENT office as soon as possible so that they could go over the results with us.  I have to say that my drive to meet her at the ENT office all these different scenarios went through my head.  I just thought to myself what in the world could they have found?  When we met at the office Anissa tried to tell me what she knew, but we really didn't understand all the terminology and so we ended up just waiting for the doctor.  Nothing had prepared me when he said that Anissa had a tumor in her head!!  My heart just sank and then all my emotions came to the surface and my eyes welled up.  Of course at that point then the ENT asks "do you have any questions"?  I just remember asking "how do you remove the tumor"?  I have to say I got extremely scared when they said that they drill a hole in the scull to get the tumor out.

From that point I think the shock and scariness sets in and you go into finding all that you can about AN's.  I remember coming home and Anissa and I getting our computers out and just started researching all we could.  I have to say for us that the shock hit me first just thinking about everything.  I was a river of emotions and felt very weak, but wanting to be strong for Anissa.  That was one of the hardest parts for me was just knowing that I need to be strong for Anissa, but no being able.  After a few days I was able to get over the shock and just started focusing on the next step, which was our appointment in Salt Lake City.  After our appointment is SLC Anissa and I were at least able to focus on the surgery date.  I guess when your in the process all you have to look forward to is the next step of the journey.

During this time Anissa found this forum and began telling me about all of you folks and how supportive you were of her and her condition.  I have to say that this forum was invaluable as we proceeded along in this process.  From that point we were focused on getting through this and getting on with life.  Even though we were focused we still had the fear of all the what ifs -- Are we choosing the right treatment?, are we choosing the right doctors? etc. Therefore this process made us do some things that we have needed to do for a long time.  Anissa and I had put off doing our wills and all of that stuff that a person really never wants to deal with, but we knew with traveling and having four small children that this had to be done.  After working through these things and deciding on treatment we could move forward with peace and confidence knowing we had chosen the right treatment for us.

Once Anissa and I had things in order we made the journey ready to put this behind us.  The day of pre-ops went well and we were able to meet up with Patti, Andrea, and Denise from the ANA forum in SLC, who had been in contact with Anissa.  Their knowledge and experiences were very helpful to us and they were able to discuss some of the expectations.  With that meeting it sure helped us prepare for the days ahead.

The day of surgery was probably the most stressful day that I have ever had.  Anissa went in at about 8:30am and I had to say my goodbyes and give hugs.  They said that they would update me every two hours and that we could wait in the waiting room.  That waiting is just something that I don't care to do ever again and I'm sure that my body doesn't need that again.  Every time the phone would ring and they said they had an update for Anissa I think my heart would about pound out of my chest.  Fortunately I was able have internet and I was able to update Anissa's status with new reports on her progress every two hours.  It was great to be able to write down what I was going through on this forum and having you folks respond to the updates with encouragement and support. By the way THANKS AGAIN!!  That eleven hours of waiting was brutal, but in the the end everything worked out well and Anissa did great.

I did take that advice everyone gave and did try to rest as much as I could while Anissa was in the hospital because she was in good hands.  Once we got home it has been an adjustment but we are doing well.  Thankfully Anissa's Mom has been here during the week to help around the house and that allowed me to get some other things done.  With four small kids and trying to keep them occupied so that Anissa could get her rest has been a definite challenge. The kids are adapting knowing that Mommy needs her rest and thankfully Anissa is making big strides to a great recovery!

Although this journey has definitely changed our lives it has also brought us closer together and has made us stronger.  There are so many things we took for granted before, but now we cherish.  The best advice I can give to future care givers is to use this forum and prepare yourself with all that you can for the journey ahead.  For Anissa and I we had to focus and stay positive as best we could and never let that seed of doubt take over.  Anissa and I both have a lot to live for and we drew upon our faith, love, and this forum to pull us through.  My hope is that I can "pay it forward" and help someone else along the way.

Chris

suboo73:
Rich,  Thank you for your insight into caregiving thru AN surgery.   :)
Pretty amazing experience, isn't it, getting your priorities in order (like the wills) and having such a positive attitude.
As one of MANY in my family caring for my younger sister, who had elective hip replacement in 2000, i can tell you i learned a lot, too.
(Her 1st surgery did not go well, and she later had 2 more...)
What i only understand now is - i wish she had had a place like this forum to go to...
When things were not going well, she talked to us and the docs - but i can see how this type of forum would have been so helpful.
I learned that caregiving is stressful and you do have to take care of yourself.
Thank you, again, for sharing your experience with us!
Sincerely,
Sue

leapyrtwins:
Great topic, Steve.

Being the one who was asleep during the surgery, I'm anxious to read the perspectives of those who weren't.

Chris' response was very interesting; can't wait to read more.

Jan

ppearl214:
Thanks Steve for starting this!  I have to chime in and watch this carefully for one reason.

I am now the caregiver for my dad for a different situation (non-AN).  It is VERY valuable to me to learn about being a caregiver for one that is loved dearly and what all (emotionally, physically, etc) others have endured in their Caregivers role.

Chris, thank you SO very much for sharing this with us... I have learned from it... trust me.. and hoping other Caregivers chime here soon. I need a crash course....

Phyl

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