251.→Husband Journey: How to be a Hero
Friends, many of you have told me that I am your hero! That I inspire you. That I give your courage. That you can’t believe I am going through the second major loss in my life since November when my 102-year-old mother passed.
And that shortly after, Robert had his first major fall and has not been home since. You’ve followed my blogs. You’ve left comments privately and publicly. You don’t know “how I do it.” Here’s a window into my world:
Prepare yourself by losing your first spouse at age 26 after years of his illness, his going in and out of the hospital. You’ve been married for seven years. You never would have believed he would become so ill.
Lose your best friend in a freak accident. To wit: she went to Australia on vacation, and was killed by a parked car that was rammed into her by another car as she stood at a corner waiting to cross the street, minutes after her arrival.
Lose two physicians, one to a heart attack, then, the one who bought the practice to suicide.
Lose several other friends to weird demises: one stepped into the water at the shore, was bitten by something and dropped dead in front of her children. Another did away with herself, a colleague suffering from mental illness.
Lose your father. I looked in the bathroom mirror and talked to him, forgave him for a miserable childhood, told him I knew he’d be going soon and I’d be alone to deal with it to help my mother. Two days later my mother called me at work: my father, age 78, had a stroke in the shower. My mother was 72. I had to leave my three year old, fly down to Florida. I watched my mother at my father’s bedside; he was on life support. She spoke to him, she covered his shoulder. Then I went in and spoke to him. The machine he depended to keep him breathing was fixed to his mouth. I heard the air rushing in and out. I watched after it was shut off from the doorway. His back turned blue. Learn grace from mother.
Survive cancer, lose a part of your body you’d never imagine you’d lose.
Be a caregiver to a mother for over ten years, doing all the paper work, years of spending entire days on the phone advocating and screaming. I documented everything. (all on these blogs) I had no help. I was beyond stressed. And, as a result …
Deal with years of migraine manifesting itself in the occipital lobe. Learn to deal with the subsequent vision loss for periods at a time. Get migraine vertigo and spin out of control like a rocket dropping, free-falling in space. Stop driving lest you have a serious accident.
Try to explain to those people who don’t get it that this is not a floater in my line of vision.
Deal with the loss of the 102-year old mother who survived Covid and went bonkers.
And simultaneously, deal with a spouse for almost ten years who was beginning to display soft signs of major issues to come, and then, about five years later, the major signs began to manifest.
Observe spouse losing his ability to maintain balance. Observe him falling face down in the street, using a rollator and leg braces: they thought it was his legs failing, due to the misdiagnosis of a sham neurologist for 18 months.
Constantly feel unsafe with his driving; he was losing control of his legs.
Go on vacation, three years ago and learn, and deal with his fall in the bathtub. Learn from a worker at the hotel because he didn’t want to tell you, that he fell in the breakfast room, holding onto a table, and the whole thing came down on him.
Vow you would never go on another vacation if you could only get home safely: have a major vertigo issue at a farm stand on the way home. You get home. You never go on another vacation.
[Watch a spouse fall apart, piece by piece, day by day for those ten-ish years, however, he would take me to the store to do shopping for my mother and help to deliver it. He would drive us to her appointments. He would take me to my appointments. He insisted he could continue to do the food shopping. Toward the end he couldn’t get from the check out to the car.]
Get lost in the endless tangle of healthcare and aid. No sooner do you finish shredding eight huge cartons of your mother’s paperwork, begin on a new stage of life: obtaining help for your spouse. Again, spending endless hours on the phone, with elder care lawyers, obtain five years of paperwork in hopes of protecting assets, spend thousand upon thousands of dollars to do so and then unwind it, change it, to apply for help with nursing home bills.
Fill up the cartons you just emptied.
So, here is my daily routine. Think of it as a cycle that never ends:
Wake up. Go to the bathroom. Go back to bed, pull covers over head. Toss and turn. Try to set a daily intention. Go back to bathroom. Retch over sink for about five minutes until the feeling passes: what is in your stomach, coming up are the held-back tears that became the post-nasal drip of the night.
Look in the mirror. Don’t recognize yourself.
Brush teeth gently, as you have been told that two of your once-perfect lower teeth must have been traumatized in some way, maybe by braces, and have been showing signs of resorption: They will have to COME OUT and more teeth may be affected. But don’t worry, you are a candidate for implants.
In the back of your mind you are trying to juggle the notion that a recent MRI of the breast has displayed a currently benign condition which has to be addressed by surgery within three months as this condition can change. Prophylactic, they say. A three-part deal.
What part of the body do you deal with first?
Try to begin day. Open door, take in feral-cat-feeding-dish and The New York Times. Hang blue plastic wrapper over back of chair. Do the mini word puzzle. Wash down a handful of vitamins with a Metamucil cocktail. Wander house because you have no appetite. Get involved with some kind of mini project.
Force feed yourself breakfast or lunch.
Deal with the phone calls from nursing home. The mail arrives. Cringe. You don’t know how to do a lot of financial stuff that spouse used to do. Make call after call. End up crying. Call friend who runs over with lunch and helps for hours at a time. She’s been through it, she knows.
Sometimes you sit in front of the computer for hours and pour your heart out into a blog. It helps.
By some miracle you’ve made it to dinnertime. You either make it and distract yourself for a while, or collapse, give-in and order it. You may end up spending a sizable amount of currency having food delivered. You have no choice. Your brain is fried.
This is the best time of the day! You’ve hopefully eaten. You’ve forgotten, for a while, what is going on in your life, you look forward to cleaning the kitchen and making things neat. It’s the only control you have in your life. It is soothing.
The best part: the phone stops ringing. You can’t address anything anymore, worry anymore, think anymore. But wait! the nursing home sneaks in a call in at 9:00 pm to tell you that spouse has a urinary tract infection and they are putting him on antibiotics.
Go back to watching, Orange is The New Black. Feel like one of the prison inmates serving an endless sentece.
At about 11:00 pm, begin to feel exhausted, like you have a hangover. Take three Charlotte’s Web Gummies:
Sleep, Recovery, and Calm; or maybe double up on Calm because your heart is racing again.
Go upstairs, walking next to the track for the stair lift that spouse used for about two weeks.
Nightly ablutions. Those teeth hurt when you brush them. Wash face. To hell with night cream.
Nightly ritual: get into bed, work on Kindle word game until eyes begin to close. It’s about 11:30. Fade to black.
If you are lucky you sleep through most of the night. If not, you are up at 3:00 am and rehash the need to send the email to the home that there are items missing from spouse’s room. There is an issue with the elder attorney. You think about how you need to make appointments: Teeth or breast. Pray teeth stay in mouth for a while, you’ve made it thus far. Then the What-ifs: What-if? Can’t sleep? Go downstairs. Have a yogurt. Watch more of Orange. Have more gummies.
The Marvin Gaye song you posted earlier on Facebook plays nonstop doing an earworm performance.
Wake up. Restart process. Ask yourself, “what day is today?”
Tell self that despite it all, you are lucky to have another day.
📌The series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey
The previous post is here
The next post is here
I’ve told you before and I’ll tell you again you’re the strongest lady I know sweet Sue. ❤️
I can honestly identify with what you go through although all of my issues are mine, no longer anyone’s caregiver. Of course you are a hero and inspiration. You have been a role model to all that deal with family illness and/or our own. May G-d bless you.
Love,
Valorie
Sue,
You are more my hero than ever before now that I’ve learned more of your story. You are a renaissance woman with all your interests and talents despite all you have been through. You are incredible! I do identify with much of what you are going through presently. And you do it with such grace. Sending love. Your ‘Lainie
You are the fearless woman! And yes, an inspiration.
Through your description of your day and what your day is typically like, I feel your pain, your sadness, the loss, and the gradual process of loss that you’re now experiencing. How you share and explain is heart wrenching. I am in tears, but know that I have great admiration for you, for your strength and your love and devotion to the people who have been so dear and important who are no longer with you. I send my love to you!!!!
❤️ Jackie
Heartbreaking, everything you are going through, and all that you have been through. Sending hugs through the tears…
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wow! it is so hard! I can’t imagine! Sending light and sleep good vibes!! ❤️