The Silver Lining of Caregiving
Many of you know Abby, the fun-loving genius, behind Midlife Crisis Nut. Whether she’s sharing her ideas for a successful marriage or blowing midlife cliches out of the water, she’ll have you laughing until you’re shooting wine through your nose. What you may not know is that Abby’s life isn’t all humor, wine, and parties. She spends her days taking care of her mom all while juggling small children, husband, and home. Read her story here and then jump over to her site and laugh until you cry!
My story as a caregiver started twelve years ago. It was when I lost my dad to a sudden and dreadful disease, and my mom found herself unable to cope with grief and being on her own. As usual, I gladly took on the role of her guardian and sole caretaker. Something I was used to from quite early on, due to the complex nature of the relationship that we’ve had. I was traveling back and forth between the continents, with her spending most of the time with our starting out family.
The process reached its peak two years ago when my mom was diagnosed with a double brain tumor. Situated on the skull base, difficult to reach, one giant, the size of a tennis ball, the other on the eye nerve. Having received a call from the hospital, I was very much aware the situation was beyond critical.
I took the first available plane and was there with my mom within two days. The sight was not for the fainthearted. When I found my mom in the hospital she was walking down the corridor aimlessly, heavy on steroids, talking without end, completely not herself. Since the skull base tumors are considered the most complicated to treat, I didn’t hesitate to take her with me to France (where we moved six years ago) and proceed from here.
Within days, we found the best and most experienced brain surgeon our new home country has to offer. Mom underwent surgery two weeks later. The surgeon was completely honest about the outcome. In case she survived the 12 hours long surgery, she would most probably be blind, paralyzed and needing constant care.
As most loving daughters would, I didn’t accept this shattering prognosis. I saw my mom getting out perfectly healthy, smiling with no sign of blindness whatsoever. I swore to myself that I would never let any doubt fill my heart. That I would never give in to the idea that something could go wrong. What followed, challenged any expectation of mine.
Due to post-operative complications, she had to be put into an artificial coma for a few weeks. She was intubated, barely alive, half-paralyzed and not responding. Yet, I’ve spent every day by her side, never abandoning. I was driving back and forth from the countryside each day to talk to her, to hold her hand, to wait for an eyelid to open. And so it did, after almost a month. She came home with us and started a long process of recovery and physiotherapy.
The process of recovery in cases such as this one is a very long one. I mean you cannot (as I thought previously) expect to have your scull opened, your brain played around with for hours, and think you’ll be yourself ever again. There were diapers to be changed, meals to be prepared and fed with a spoon, liquids to be delivered as gel due to airway obstruction, drugs to administered every few hours, exercises to be done, depression to be lifted, questions about mixed up time to be answered every five minutes, trauma to be healed, memory lapses to be explained, night terrors and night walking to be attended to, doctors to be visited every few days, blood work done, IRMs performed, and so the list continues. My mom hasn’t been herself since her new beginning. Yes, she’s walking now, talking and most importantly able to see, but there’s the aftermath of brain surgery. I’m not fooling myself, she’s dependent on help for the rest of her journey.
I mean don’t get me wrong. I’m beyond happy about our miracle and it’s a miracle in every sense of the word, as you can imagine. I have a mom who’s clearly alive and doing better with each single day. Except, it’s really hard sometimes. Due to the fact that we live in a foreign country I can’t rely on any help, or nearby relative to call for comfort or support, when it all becomes too much and the weight of being a 24/7 caretaker starts to take its toll.
I mean, there isn’t a single second in the day when I’m alone, as my mom can never be left unattended, otherwise she’s completely lost. We do groceries together, we pick up kids from school, we spend the whole day together until very evening. As a result, we don’t even dream of going out as a couple, my husband and me, because we would have to arrange for a sitter to take care of my mom and the kids (and not many people are willing to do that). Any writing, or any important for my mental being things, I can only do between 10 pm and 2 am when everybody is asleep. I’m exhausted full time, with my health starting to deteriorate with every step of the way. I’m too exhausted to be there for my husband and my very young kids (my son was three and my daughter seven when it all happened) who need my attention desperately at this early age.
Yet, it’s not all hopeless, gloomy and without prospects, as it might sound. Despite the hardship of caregiving, in my heart there is a feeling of gratitude, joy and happiness. Beyond a shadow of a doubt, there is a silver lining to my story: I get to see my mom walking, laughing, breathing, living, and I wouldn’t exchange it for anything.
This is a new series that I would love to continue. To be able to do that I really need your caregiver stories. Whether you are a long distance caregiver or one in the next room your story is important and I would love to spotlight them here! You can send your stories to me at: Rena@thediaryofanalzheimerscaregiver.com