June 25, 2012, is the day that changed our lives forever.
That is the day, the day that I brought my husband home after seven weeks in medical facilities. It took that long from time of diagnosis of Syringomyelia, the spinal cord surgery, and intensive in patient rehab. Seven weeks of worrying, hope, faith and a lot of hard work for my husband. We were homeward bound. It was close to the sensation I had bringing my newborn son home. That “now what do I do, alone!”
They sent him home in a wheelchair, with a sliding board. Kind of a wing and a prayer for as much as I knew what was to come. I don’t even think the word caregiver was even familiar to me at the time, at least not in my vocabulary. We drove up to find a wheelchair ramp, wrapping around to the side door where there was only sidewalk before. Now came the first test; get the wheelchair out of the trunk, help (watch in terror) as he used the slide board to transfer from the car to the chair. Then we proceeded up the new ramp and into the house.
I looked around; everything was the same as before he left. Now how do we navigate? Please someone help me. How will he get in and out of bed, the bathroom/shower? How do I keep him safe? Where’s the nurse!!!
He was still very weak from the surgery but optimistic. He would use the magic board to get in and out of bed; I held the chair and my breath. Once he was securely sitting, I had to pick up his legs for him and place them on the bed. Then I would breathe a sigh of relief that we accomplished all this safely. All the simple daily tasks had to be rethought. Changes made accordingly.
I lived in constant terror of him falling with all the board transfers. I could not let him out of my sight; I could not stop myself from hovering. I slept when he slept (back again to the baby!) and spent my days exhausted. The three-day a week outpatient physical therapy routine began; this was our life.
Caregiving, chauffeuring, cheering him on during therapy, doctor appointments so bountiful I had to make a spreadsheet to keep up; and fighting many a battle with the wheelchair; this was our life. I mean it was our entire life. We were filled with hope that now that the pressure was off the nerves that he would walk again. He was determined. When he wasn’t at therapy, he was exercising at home.
It broke my heart to see him work so hard with such small progress.
Fast forward to today. A lot less hovering, my husband has become very independent. He needs a minimum amount of assistance from me on most days. He’s still determined to walk, but as of yet cannot even stand on his own or even with a walker. We have discussed the possibility that this may be it and acceptance is coming. The hope is dwindling, the smile faker; but still we keep going. Our life together is more “normal”; we just do and go with the wheelchair.
The miracle? I’m still praying.
A year ago today, frazzled and flailing, after helping hubby to bed, I ventured out to my computer. Being a great believer in the resources afforded us via the internet; I got online and started to search. I needed to find some place for information, for support, for guidance through this new reality. I can’t even remember what I searched for, or how I began.
All I know is somehow, somewhere out in cyberspace, I found Caregiving.com. I explored, I read in amazement so many stories, so many people in similar situations. Tentatively I signed up and typed a few sentences. To my surprise within a very short time I received a kind, reassuring note from Denise welcoming me. She asked me to write a little background and thus my first blog was born!
With that brief exchange I found a lifeline; a community filled with love, comfort, support and advice. I was not alone. Wonderful strangers would become friends, a safe haven to come and share victories and defeats. Today I want to thank Denise, for being there for one of the lowest times of my life and welcoming me to this community. And to all of you who have been kind enough to share and are still helping me to learn and grow into this new role. I don’t know how I would have gotten through the last year and all of its trials without you.
Bless you all.
- Epilogue 2012: Diagnosis, Displacement, Departure (caregiving.com)
- Life After Caregiving: An Update from Roaringmouse (caregiving.com)
- Depression and Caregiving (caregiving.com)
- Back in the Saddle (caregiving.com)
- In Ten Words, How Does Your Caregiving Day Start? (caregiving.com)
- Caregiver Becomes the Caregivee (caregiving.com)
- Dead or Alive (caregiving.com)