I published “The Timeline Part 1 – The Stroke” on Aug 12, 2017, six months after the event. Now, four years after J’s Feb 11, 2017 stroke, I have finally written a Part 2 – The Aftermath. This isn’t a continuation of the timeline, just a jump ahead to the current state of our world. It’s meant to help readers make the leap from the original event to the present time.
February 11, 2021 Marked Four Years From the Stroke
Four years since J’s stroke, and what an unprecedented four years it has been on so many levels. Yet, while the political, economic, and health issues that have complicated the past four years will hopefully soon subside and life will revert to some type of normalcy, J will continue to battle the stroke’s lasting neurological effects for the rest of her life. This existence will never feel normal to her or to her family and friends. I’m not trying to be sensational … I’m simply sharing the reality that we all need to accept and what we grapple with every day.
Balancing the Past with the Present
The most difficult thing I deal with (and I suspect I can speak for J’s family and friends) is not wanting to lose sight of the vibrant, active, empathetic, compassionate, smiling J who could fill your heart with love. I see that person every time I look at one of the many pictures of her scattered around the house. Still, those pictures harbor a dark side by making it ever harder to accept the injured J who is so limited in her movement, speech, and emotion. Her heart is still the same – it’s the stroke’s injury to her brain that’s the problem.
And now after four years, her progress towards some level of independence comes in tiny steps, as the normal aging process works against her to take its toll. We continue to look for activities, assistive devices, and support programs that give her a semblance of independence. Independence is critical to maintaining her identity and sense of self, as the last thing I want is for her to feel that she is simply a patient and not a woman, wife, friend, and mother.
The Impact on Our Family
This past January, our daughter turned 13 and ran headlong into the wall of typical teen issues complicated by all the related pandemic/school issues. Thankfully, she has picked up one of J’s best qualities – resilience. They are both survivors and I’m certain that their shared character trait will strengthen their relationship over time and reinforce their love and support for each other.
As for me, I’m using this anniversary and the renewed hope of 2021 to set straightforward goals for the future:
1) Stay healthy and able to support J and our daughter as long as possible.
2) Help our daughter mature into a strong, independent, successful individual.
3) Maintain the best possible quality of life for J and ensure her long-term care.
4) Be grateful for how good our lives are compared to so many others and pay it forward when possible.
5) Build a plan for a comfortable, sustainable retirement (someplace warm).
Piece of cake, right?
But What If Your Partner Doesn’t Share Your Goals?
It’s not clear what J’s goals are for her life. She has trouble verbalizing them, assuming she is able to formulate any, and she fluctuates between apparently satisfied with the current situation and saying she “wants to be gone.” We’ve worked through these dark moments before with the help of therapy, medication, and family support but it’s not that difficult to understand why it keeps rearing its ugly head. J went from being a totally independent, headstrong, well-educated, positive individual to someone who has lost control of her life thanks to the blood that pooled in her brain. This isn’t something you recover from easily or even at all.
I love stories of people who are able to overcome horrific accidents and events, or traumatic brain injury, and I want nothing more than to have J emerge as one of those stories. Her brain, though, doesn’t appear to have the connection to her body that would allow her to relearn all that she has lost or feel all that she used to feel. I look back at the past four years and I have many regrets about what we could have done differently to assist in her recovery. I’m trying to keep us both positive by thinking about what we can change going forward and how we can develop a common vision.
The Aftermath is Continuing
There is no ending to our story, and I don’t expect one for a long time. Each day reveals new strengths and weaknesses, and provides new opportunities and threats. Each day is a challenge and a blessing. My daughter complained to me that I have a bad habit of lecturing her while I’m driving — a dangerous behavior. She may be right, but I did correct her by stating that I don’t lecture — I impart wisdom! And that is what I hope to with my continued efforts with this blog. Caring For A Spouse is meant to give hope and guidance to others in our situation based on our experiences and knowledge. Please share with family caregivers and thank you for reading!
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