Strong, healthy, and 52—not the typical stroke risk factors. Forever etched in my mind is that morning I discovered my husband with active stroke symptoms, bracing himself on the kitchen counter and falling into the chair I shoved under him. I’m not sure why I identified this as a stroke, but apparently, something I read in the past flipped a switch. I asked him to smile for me. He responded with teeth clenched, “I can’t.”
Fast forward . . . 65 days in the hospital and rehab, in-home rehab, outpatient rehab, 18 months later. He has made progress, but when damage to the brain is involved, some things can not be recovered. He can walk slowly with a cane, has no use of his right arm, and his expressive speech is very limited. We daily play 20 questions to discover what he wants to tell me or what he needs. He isn’t able to show empathy or much emotion, and his desires need immediate attention with no consideration for others. He isn’t willing to go out socially, even to watch our children’s activities. Eating out or a movie isn’t even worth a thought. We no longer sleep in the same bed.
The acceptance of my hard-working farmer, now spending his days in the recliner watching TV and his iPad, has not come easily and I’m not sure it will ever fully develop. All that I am grounded in has been tested. My faith, my relationships, and my outlook on life have all walked on a thin line since June 5, 2020.
A group of wives of stroke survivors that I am a member of, all relate to the fact that unless you live this life 24/7, you are unable to grasp the significant effects it has on the spouse. I actually felt a sense of relief from the guilt I carried when I read about ambiguous grief.
This is defined as grieving someone who is still alive.
Again, to most this will seem very abstract. But to a wife whose husband is forever changed, this is very real and concrete. The memory of something very funny and frequently talked about is no longer there. They may do things they never did before, or not do things that seem logical to do in a given situation. They may say things they wouldn’t have before, or not be able to say your name and I love you.
I have taken on the caregiver role, am learning to manage the farm and its finances (with help from our sons), teach each day, perform repairs around the house, and handle all other normal life duties. It is a lonely life. I never knew the feeling of love can change so drastically but still remain in an altered state. My role as a wife is overshadowed by my caregiver role, exhaustion, and the absence of communication. It is difficult to attend social events alone and witness couples interacting. Joy is challenging to find.
I have learned to feel everything I need to. I brush guilt away because although I detest that this happened to the man I love, it happened to my life, too. I have been fortunate to have several women who have been through this reach out to me and validate my emotions. The following poem came flooding through my mind one morning when I woke up and I could barely write fast enough to capture it. No writing has ever flowed that easily for me.
I hope my sharing will touch someone and ease the burden they carry in whatever way they need.
Every morning when I open my eyes,
I face the day with dread.
The list to do, I never complete, no adventures,
No conversations, swirl in my head.
My heart races, my body aches,
I feel like I can’t breathe.
My thoughts fast forward to bedtime tonight,
When I can be at ease.
My family, my friends, even doctors,
Have no understanding of my thoughts.
Ironic how MY new health issues and stress
Are what HIS stroke brought.
I’m 53 with hopes and dreams,
This new life is not what I planned.
But the next maybe 30 years
Shatter on the ground as I stand.
I put on my happy—correction—content face
And go about my day.
When others ask how things are,
“OK” or “Fine” is what I say.
Frustration, sadness, depression, anxiety, hopelessness,
Exhaustion are really how things feel.
Their comment, “He looks good!”
Causes questions like, “Is this real?”
Is looking good the goal of life?
I ponder as my migraines rage.
Because my husband is trapped in his own body,
In an Aphasia cage.
I search for and question God,
my faith quivers with each word.
I’ve prayed and given it all to God,
But feel as if my pleas are unheard.
My friend has such strong, unfailing faith,
Despite trials in her life.
I lean in hoping that this conviction will flood me
And take away my strife.
I’ll continue on the path we have been sent,
And fulfill my matrimonial vows.
And somewhere along the way I pray
For my spirit to once again be aroused.