A Day in My Life as a Caregiver
Guest Blog Post by Todd Henderson
Recently, I decided to write about my life as a caregiver. I reasoned it would be cathartic for me and hoped it would be helpful for other caregivers. I randomly picked today. It turned out to be a doozy.
And We Begin
At 3 a.m., my son Tyler (not his real name) pounds on my bedroom door asking for a kratom drink (more about that later), coffee, and his daily spending money. I stay in bed. At 3:15, 3:45, 4, and 5:30 a.m., he pounds again. Three hours of sleep for me. Probably none for him. Not good for either of our mental illnesses.
I’m the father and guardian of my 33-year-old son Tyler who lives with a serious mental illness (SMI) – schizoaffective disorder. This disorder involves schizophrenia and bipolar disorder, along with psychosis (hallucinations and delusions), mania, and depression. Simply put, it causes significant life-long functional impairment.
To complement things, the doctors have identified he also lives with antisocial disorder, anxiety, and anosognosia. Anosognosia is a neurological condition that prevents individuals from recognizing or perceiving their own physical, cognitive, or mental health impairments.
It’s the perfect storm. Psychosis, depression/mania, and denial combined with a complete disregard and violation of others’ rights, especially mine.
As for me, I do my best to live with bipolar disorder. Although lately my depression has increased significantly, which equals decreased effectiveness as a caregiver.
My Small Town/Rural Town Journey with Tyler
During our journey together, Tyler and I have lived in small, remote, rural, farming towns in North Carolina and Florida. They’re not the corn and beans towns of my upbringing. Instead, crops ranged from blue crab and shrimp on the remote islands of the Outer Banksto citrus and sugar cane on the fringe of the Everglades totimber and cattle on Florida’s Nature Coast.
In rural areas, finding a psychiatrist or therapist is virtually impossible. Some towns do have a visiting psychiatrist and therapist who come around once a month, but appointments are booked three or more months ahead. If someone is plunging deeper into depression, three months is an eternity. So, in the long run, they must travel 60 or more minutes to get care. That’s an entire day off from work. Eight hours of income lost. But that’s what we had to do.
Continuing with Today
At 7 a.m. I walk my dog, Zelda. I leave behind Tyler’s meds and 15 dollars on the kitchen island. Then Zelda and I headed out for breakfast and some peace at my favorite breakfast place where – on a rare occasion – I find a willing ear.
Mostly my friends are caught up in the latest White House scandal or argument with their landlord or tussle with their neighbor. So, I end up lending my ear and hold onto my daily challenges. Honestly, who really wants to talk about mental illness?
After a couple of hours, I returned home welcomed by:
“Unlock my credit card.”
“Get me a f…ing kratom.”
“Get me f…ing cigs.”
“Unlock my credit card.”
“It’s my money.”
I asked him to take his meds. “No!” He hadn’t taken them for 18 hours. His psychosis is increasing dramatically. He talks to himself into the afternoon. “F…k, dude. F…k, dude.”
As always when I return home, I assess the condition of the apartment. I find that Tyler took my clothes out of the washer during the wash cycle and put them soaking wet in the dryer. The dryer motor burned out. He did not acknowledge his error or explain it. More expenses on top of other carelessly broken items, like two 55-inch televisions. What a day this is shaping up to be.
The Role of Personality in Mental Illness
By now I’m sure it’s clear to you that Tyler is an extremely persistent person. Relentless, in fact. He’s been this way since he was very young. Persistence can be an extremely useful trait. Tyler’s grammy used persistence to become a successful swimming coach and community leader. But, for a caregiver, it’s constant hell.
He also has the uncanny ability to focus precisely on want he wants at any given point in time. Giving in to him is a big mistake because he will try again.
One cannot underestimate the link between personality and mental illness. The two are joined at the hip. And negative traits become exaggerated.
Phoning Others
While driving to Walmart, I call a few numbers in my contact list. Most of them are happily retired. Living with bipolar disorder and caregiving, retirement will never be an option for me. Honestly, I resent this, but it is what it is and I accept it.
I call hoping for a listener, I finally get through to two. They dance around my efforts to talk about Tyler. As always, I acquiesce and listen to their picture-postcard stories. Of course, they have their own priorities. They do not have the time or, possibly, the interest to listen to my caregiver challenges. Honestly, I think they’d rather not know about Tyler.
My Health as a Caregiver
My mental and physical health have always been a priority. As I said earlier, my mental health has taken a nosedive recently. My physical health has as well. My doctor asked that I have surgery in the near future. However, it requires two nights in the hospital. I can never be away from home longer than eight hours and certainly not overnight. It’s just not going to happen.
The Ugly Truth of Being a Caregiver
I dream sometimes that I can get a break from 24/7 caregiving. I long to go to bed and wake up when I want. I long for a relaxing day writing or a spontaneous day wading in a tidal pool. Instead, it’s a pounding on my bedroom door during the night. Fatigue. Anxiety. Intense sadness. Irritability. Hopelessness. Trapped.
And then work with left over energy.
I’ve also had bigger dreams. Last year a friend invited me to visit her in Spain. I had arranged for a friend to stay with Tyler while I was gone. Three months prior, the offer was rescinded. Anger built. No trip. No break. No options.
No me time, yet still alone. That’s the truth of being a caregiver.
Then guilt blossoms. I willingly fathered this child. I helped raise him. He’s mine. I love him unconditionally. I feel guilty having so many negative thoughts about being Tyler’s caregiver. I feel as though I should do so selflessly.
I’m supposed to be his champion. His guardian. His father. Yet I am incapable of doing so.
Don’t Forget about OTC Meds and Learn about Kratom
I hide in my bedroom for a few hours. Another knock on the door reminds me of Tyler’s addictions to over-the-counter (OTC ) meds, specifically antihistamine. He wants, “Eight dollars to buy some liquid Benadryl,” which he will pound down like a shot of whiskey. It reminds me that nearly anything can be addictive in the wrong hands. Are these choices he consciously makes? Does he have any control at all? I do not know. Choice or not, unfortunately he has these addictions. They exist and must be dealt with.
Speaking of addictions, back to kratom. If you don’t know about kratom, you should. It’s available at smoke shops and convenient stores in rural and urban America. It’s a legal opioid/stimulant. It comes in drinks, capsules, gummies, tablets, etc. It’s highly addictive and its use can result in psychiatric, cardiovascular, gastrointestinal, and respiratory problems.
Tyler’s body reacts to it by violently retching the opioid out. Still, he wants it. And since Tyler can walk three minutes to buy it, I’m powerless to stop yet another drug (along with spice, OTC medications, and alcohol) from destroying his life. Watching drugs rip him apart is almost as difficult as standing by while schizoaffective disorder does the same.
Fighting the Fight
As a caregiver, it all comes down to this – fight the fight. One moment at a time: Medication management, doctors, therapists, hospitals, therapy, and financial support. As well as nutrition and physical health. Persistence.
I have involuntarily committed Tyler twelve times in the last twelve months. Over his life he has been hospitalized 1,355 days.
Involuntarily committing someone (“Baker Acting” in Florida) is a serious undertaking. You choose to strip someone of their rights in hopes that they will be “stabilized.” “Stabilize” is the key word. It’s the hospital’s role to get your loved one just well enough to be released back to your care.
In the best-case scenario, the medical staff will discover that magic concoction of medications that will allow him/her to live symptom-free for a long time. This has never happened with Tyler and probably never will.
Tyler – with his severe mental illness – really needs a long-term mental facility where he is evaluated, and treatment regimens are “tested” and adjusted before release. These private centers are expensive: $15,000 to $35,000 per month. This figure comes from my extensive search of options in the Southeast. Free state hospitals exist and are a good alternative. However, wait lists are lengthy.
As his psychosis has increased over the last few days, hospitalization is inevitable. He progressively talks to/answers himself – for hours at a time.
Emotions
At the end of the day, I ponder. There are many opinions on the strongest emotions that make us truly human. Love, grief, anger, and so on. For me as a caregiver, fear and hope are my driving forces.
Honestly, I live in constant fear of what happens each day in our household. Is it another eviction or a financial hit? Maybe severe physical injury or Baker Act? Perhaps another call from the apartment complex about him “scaring” someone with his verbal outbursts?
I believe one can conquer fear with hope. I can make it through the darkest moments just by believing the next moment will be better. That’s hope and I can live with hope.
This is where I choose to end this day. With hope.
About the Author
Todd Henderson grew up in a small town in Indiana and believes he is the third generation in his family to be affected by mental illness. Generation after generation, Todd’s family struggled to access mental healthcare, traveling 60 miles to find therapists, psychologists, and hospitals. Often, help came too little and too late. Todd shares his family's history in hopes of helping other individuals and families.
Todd is also the author of a novella – Shifting Sands: His Hell. Her Prison. – which is a fictional account of a young family struggling with the father's bipolar disorder, severe depression, and substance abuse.