08/29/2025
As I see this on the news and social media, I see so many comments that make my blood boil! As someone living with a spouse with a brain injury that is very similar to temporal lobe dementia, it’s hurtful and offensive seeing comments like “she could have gotten a 24/7 caregiver” and that’s “so cruel”. I read a few comments just to see what the “vibe” was and then I scrolled on by.
Unless you LIVE WITH (and I don’t mean “unless you KNOW) someone with Suspected CTE, Traumatic Brain Injury, Dementia, Alzheimer’s or any other disease or injury that alters a person’s personality like Schizophrenia, Bipolar Disorder, or some type of Psychosis, you should really just SHUT UP AND DO YOUR RESEARCH!
Not only am I am RN of 32 years who HAS and HAS HAD blood relatives with these types of injuries/diagnosis, I am MARRIED to someone with Suspected CTE and to say it’s not a picnic is putting it lightly and making light of it.
EVERY SINGLE DAY IS A BATTLE. EVERY SINGLE DAY, MULTIPLE TIMES A DAY, THINGS HAPPEN- sometimes it’s just little snarky comments, whispered accusations that I call attention to and shut down. Sometimes it’s suspicious looks, a change in body language and demeanor, being watched/surveilled. Sometimes it turns into a full-blown yelling and screaming match with a whole different person who looks like my husband but isn’t. Sometimes it’s memory lapses and amnesia for hours or days- but I’m awake and aware the whole time that he isn’t.
KNOW THAT ONLY THE SPOUSE/CAREGIVER SEES THE REAL, UNFILTERED SIDE! AND OFTEN, IT’S THEM THAT IS THE SINGLE OBJECT OF THE PERSON’S ANGER, FRUSTRATION, SUSPICION, ACCUSATIONS, YOU NAME IT.
I don’t post our life to give false or fake representation of what it is. I post our life to show glimpses of normalcy, although sometimes that same day, all HELL may break loose. I post to show who my REAL HUSBAND IS, not that other personality that he fights so very hard to keeps subdued and hidden.
As I see him react to the many medications he’s on, see him stumbling and losing his balance-See him “zoning out” and staring into space, or see him falling asleep when he thinks he’s wide awake and “ready to hang”- I wonder, as any other person or family living with something like this, how much longer will I have HIM.
As I deal with my own health issues, which by the way, he has NONE other than the brain injury, I deal with unbelievable stress, anxiety, situational depression and fatigue, and anger, yet my mind and body PUSH ME to keep going as if I’m 20. Many times on autopilot, forgetting why I’m doing something, where I’m going, or why I am pulling into a certain parking lot.
BUT - God keeps me- Through the good times and bad, and yes, there are sometimes more good than bad and sometimes more bad than good. The “ME” in me tells me that I don’t have to deal with this, but the LOVE in me immediately shuts that down because I know God brought us together for such a time as this and that HE will continue to strengthen me during my weakness. HE will strengthen my husband during his weakness- Just as Jay’s amazing Neuro-Psychiatrist prays when we have an appointment with him. He pray for himself, he prays for me and he prays for Jay, holding our hand’s tightly in his.
TRULY NOTHING BUT GOD IS KEEPING ME. NOTHING BUT GOD IS KEEPING HIM. AND I THANK GOD FOR SHOWING US THAT HE CARES ABOUT US INDIVIDUALLY- HE SEES, HE KNOWS AND HE CARES AND HE PROVIDES PATHS TO HEALING AND SUPPORT AND HE MAKES EACH DAY NEW!!
Understanding Traumatic Brain Injury (TBI)
Emma Heming Willis is opening up about the challenges facing her husband, Bruce Willis, as he lives with frontotemporal dementia.
