Working my Pathway, having just completed level one I had only peeked at the next step and contemplated tonight to be for whatever was the first required speech.
That is as far as my planning for toastmasters got.
You see it was a rough week since we last met and a hard week before that.
There was no great traumatic crisis, just a series of seizures over a couple of days and signs of further descent into dementia-like cognitive loss my loved one is experiencing.
You see my role has changed from husband to caregiver, hers from my always vibrant, positive, adventurous, independent, self-reliant, brilliant, and loving partner to my Loved One my Care-ee as I have coined the title.
I titled this a hard week caregiving.
So what is caregiving?
What does it mean when someone says they are taking care of mom, dad, or their spouse?
In truth, I believe it to be one of those experiences that defy description because words have not been created to express the particular emotions and experiences, and events a Caregiver has.
Maybe I can tell some of the generalities by comparison to being a parent. Caring for a person, Loved One as many support groups euphuism for one’s wife, husband, or parent, is in my estimation, having never had children, like being a parent only in reverse.
You start with the person you had hoped your child would be and go backward.
Newborn babies are totally dependent on their life but grow and develop their life skills and become autonomous and independent people.
Alzheimer’s Dementia reverses that process, one seemingly small quirky thing leads to another, it will seem so benign but like a cancer for which there is no treatment sooner or later, it will become apparent. As a child learns and becomes self-sufficient, a care-ee loses each skill and trait, becomes an expert liar deceiver to hide their shortcomings as it moves forward.
Every person’s path is different but some of the things a caregiver and care-ee face are:
The loss of friends and family support and contact. Sadly over time the quirky, cooky, sometimes inappropriate behaviors, fear of the unknowns result in even your best friends pulling away. You realize so and so did not send you an invitation, or went to a concert and never mentioned it.
Being socially ostracized both become lonely bringing its own depression and despair. Maybe people don’t realize caregivers can and need to be out with people by themselves, and the care-ee is ok.
30% of caregivers die before their loved ones. The emotional, financial, and physical stresses are overwhelming.
For the majority, burnout is common leading to high blood pressure, hypertension, obesity, depression lack of self-care, poor general health, and even suicide.
That is far from a complete inventory.
A caregiver has given up their life and time to be the caregiver much like a mom, a parent, does for their child. Each phase brings a time that instead of giving freedom or task and passing a milestone on the way to self-sufficiency, that you must take away restrict your loved one from an activity till even the most simple things like what clothing to wear or grooming needs prompts.
Remember when you had to be reminded to put shoes on, comb your hair and brush your teeth, now you have to remind them the same ways.
Caregiving is a very personal experience, and nobody wants to listen except maybe other caregivers, you do have to be one to know what it is.
The support groups, online blogs, and pages bring some comfort but also an ominous foreshadowing of the stages to come. The euphuisms that try to soften the harsh realities like “transition” or “earned their wings”.
You do not put them in a home you transition them to it.
Anything to describe the madding perseverations or obsessive behaviors, that leave you seeking respite care and a vacation day.
That too comes with odd emotions.
What was the hard week?
Epilepsy, her nemesis since her preteen years, the result of a traumatic car accident that took her mother’s life. It has been controlled most of her life but never completely.
As aging through menopause worsened taking her away from a career in retail management, and photo lab supervisor to being disabled.
She suffered a few seizures, a couple of weeks ago, three that we know of, one I was with her.
Think of witnessing your most loved person uncontrollably thrashing and distressed, the seconds seem like minutes then they settle into a semi-conscious postictal state you believe it will be ok now.
There is not much you can do for someone suffering a seizure, clear their path, get them safely to the ground, do not hold or try and restrain them, and be near but not crowded when they are emerging into and from the postictal state. Your thought will run the course of, is this it, what more can I do, you remember she does not want to be resuscitated, or “saved”, you ask yourself, can I do that, do nothing? You tell yourself you must, that was your promise to her when she was all there, it was the promise all along during your adventures and fun times, you must honor it now.
The seizure passed and in the days to come a few new or unnoticed before quirks, or behaviors and things forgotten have emerged.
What changes will it bring to the day-to-day, what tasks of everyday life will I have to assume and provide for?
Our home is becoming more like a nursery full of safety features. Maybe it will soon be time to put locks on doors and drawers, get rid of more breakables and sharp objects. How do I restrict her phone? These and more questions race when you notice a descent into the abyss of dementia, maybe I can breathe a little if we plateau and I can adjust to the newest stage of purgatory.
That’s a hard week in caregiving.