Honor Your Story

My husband and me on our wedding day.

We are hard pressed on every side, but not crushed; perplexed, but not in despair;persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.” 2 Corinthians 4:8-10 NIV

Talk about a caregiver! Paul went to all and any length to bring the Good News to the suffering everywhere. Even though the Holy Spirit was with him, challenges and even Satan were tormenting him. Of course, our Savior, did this too.

I have tears as I’m writing this. That’s okay. They’re healing. Tears sparkle. It’s okay to cry. It’s okay to remember someone we deeply loved. Feel the feelings. The anniversary of my husband’s death is this month.

We were deeply in love. We planned, in our 40’s, to move to rural Idaho because our kids were grown and doing well and we wanted to retire with high-desert, mountains, blue rivers as our playground. My husband was an amateur photographer, though quite good. Brian started a rock band in high school, studied and received a degree in music. He could play woodwind, brass, piano along with a beautiful baritone voice. Brian taught music at our little rural school. Football games and basketball games, he and the kids rocked!

We moved to a humble home in the country and gained two horses, two dogs, three cats and even more joy with our kids and grandkids.

One Valentine’s Day at work, I watched my colleagues receive beautiful sweet-smelling bouquets of roses and flowers. Me? Nothing. Then towards the end of the day, here comes my hubby with a smile on his face and a five-gallon rose bush. I was devastated! Seriously? A rosebush in a bucket? Where’s my bouquet? My husband saw the disappointed look on my face and said, “I want you to have roses every day, not just for a few days.”  I still have that clove-scented rose bush which flowers almost every day, spring through autumn. Bittersweet.

Then the diagnosis… “Parkinson’s,” they said, because Brian’s walking was a tumbling forward as if he couldn’t catch up with himself. Stiff. Sometimes painful. No tremors. We were relieved because it wasn’t terminal. It was manageable with medication. Our plans for retirement were still to be realized. I could help with the driving, camera equipment and be the main bread-winner. We had hope. We had love. I didn’t drink. Maybe some wine with friends or family on occasion.

Then Brian displayed anxiety, depression, saying inappropriate things at work (and fired), walking getting worse with paralyzing freezes at the grocery store, falls, pain from contracted muscles. Trips to the emergency room for panic attacks and falls. One zero-degree night, he ran out into the yard ripping off his clothes because he could not breathe. He could, but panic attacks feel like that. I could not sleep. On alert. I drank.

Then he fell… heart-thumping crash in the kitchen. Head wound bleeding profusely. “I need help,” he was sobbing. “Please don’t call the ambulance! Please. I want to stay home, our home.” I cleaned his wound, steri-strips, got him to sleep and then I drank. Would others think he was abused? He looked so weak and beaten. Then I drank. Lots.

Then I called Idaho Home Health and Hospice… The next day with a mother of a hangover. A healthcare worker arrived who took one look at Brian’s wound and foggy confusion. An ambulance was called.I was tired. I was empty. Frazzled. PTSD-like. Frightened. Brian started having delusions right then. Started taking off his clothes. His speech unintelligible. The dog was licking his head furiously trying to fix the unfixable as the ambulance was en route. After the ambulance left, I guzzled more booze. Lots. His daughter witnessed all of this with amazing acceptance. She was covering the night shift so I could get some sleep. We cried. Embraced. Choked down more whiskey, believing the whiskey would soften, if not eliminate the nightmare. Brian would never walk through our front door again.

Then another diagnosis… Lewy Body Dementia. Neurologist and family doctor agreed. Some mental tests. “He can’t be home.” “Life-threatening tragedy” will happen to Brian or me. “You can’t provide 24/7 care. No one can.” Stopped at the liquor store on the way home and stocked up. Lots because it will be at least seven to eight thousand a month for care. That’s not counting medications, physical therapy, wheelchairs, specialists, and such.

Then I visited the care home… Almost every day. Brian lived there until hospice. Brian would yell my name and was not comforted by my presence. Other visions? No recognition. He became paralyzed and could not swallow much. I hand fed him gently wiping food and drool with crushing heartache. Where is dignity? Where is God? Where are my friends? The care workers had to lift him with a special lift to bathe him. Bedsores. Splints and casts for contractures. There was more. But…Then I drank when I got home. Lots. Whiskey and water. Saltwater. Tears that sparkle?

Then hospice… And I drank from a “hidden” bottle while comforting my husband. His head rolled back and forth from who knows what. Agitation? Thirst? Angels waiting? Drank waiting for courage to comfort his daughter too. His breathing was absent for a minute–deep, raggedy sighs and absent again. Gurgling. Is he still with us? I lay in bed with my husband a day before he died listening to his sporadic breathing and gently holding him, horrified by the mottled appearance of his legs, hands and ears. Active dying. I’ve seen it before. It was hard then, but this was my soul mate, the love of my life, our golden years. I was exhausted, in pain with anticipatory grief. Afraid as I watched the Healthcare Money Truck take most of our savings and retirement. Funeral plans. His clothes don’t fit him anymore. New ones? I’m still here. How do I go on? With what? For what? God, I’m ready to go too because I can’t do this anymore. Please, God, provide someone to care for the horses, dogs and cats. And then I drank. Lots and lots. Blackouts and pass outs would not come. Vomiting did. I’m still here.

Then he died… He was 66 years. Eighteen months after the real diagnosis. And I drank. Lots. At the funeral, at the community bar, at home, in the front yard watching the hummingbirds, in the shed with the horses. You could’ve set me on fire with one quick match. I drank during the holidays, wine with my bath, whiskey in my morning coffee. Never spilled a drop. Merry widow?

Then I isolated… No phone conversations. No community bar. No family. No holidays. Tons of chick flicks on TV. My new love. Whiskey.

Then I quit drinking… For four months or so. Then I resumed drinking for a couple of years. Slept in my husband’s shirt night after night sniffing the collar, trying to catch a tiny scent of my husband. Dog cuddled. Ate my tears. The visions of the suffering my husband endured always woke me. A shot to go back to sleep.

 Tried dating. Gave my horses to the local kids because I couldn’t quite afford them or take care of them any more. And I drank, bottle behind my back as the kids gleefully walked the horses to their new home. Every time the kids rode, they’d stop at my house showing me what they learned. One wrote me the most adorable thank you note with a picture of one of the horses on it. I still cherish it.

Then I quit drinking again. I sought spiritual quit lit like a starving person. I recommend Breathing Underwater, Richard Rohr; the Pastor and the Prayer; Ragamuffin Gospel, Brennan Manning. All of these authors are Christian and struggled with addiction. Brennan Manning has passed but his words and grace soothe and give hope.  I visited grief counselors, BOOMrethinkthedrink.com, Celebrate Recover, prayed with begging or take-me-now prayers. But it’s very important to contact a professional, whether a pastor, counselor, or a trustworthy person who has been a caregiver. And lost. Addiction with grief needs extra special care. I pray my story encourages and comforts.

Then transcendence… During my reading one night, a word jumped out at me: Transcend: a: to rise above or go beyond the limits of b: to triumph over the negative or restrictive aspects of: overcome. Definition from Merriam-Webster Dictionary. I can do this with the help of God and others. I am doing this even though my heart and mind haven’t got the memo.  I can transcend.

I have been transcending since September 13, 2020, one day at a time. Grieved the past while using it to help others by writing a devotional for dementia caregivers, blogging with dementia caregivers, writing articles about dementia caregiving (one comes out in May).  And I’ve had my butt handed to me on many occasions. Brene Brown, in her book the Gifts of Imperfection, says sharing vulnerability is quite the risk! Even a grieving widow has her butt handed to her with a bow on top! Some won’t understand. Some won’t like you. Some will ignore you. Some will gossip. Some will try to use you. Telemarketers anyone? Yeah! Let’s add that to the drinking, financial woes, and grieving. I’ll just put a bow on top and call it a gift. A crappy gift! A hurtful gift! Judgmental gift! Watch me use it for my growth and others’ growth. Transcend.

Met a fellow who was widowed too, and we help each other, care for each other, love each other and our kids. Listen, really listen to each other’s stories. Vulnerability.

Grieve the past but live in the present. Grace helps tremendously. Our motto. That was then. This is now. Another motto of ours. Now is very different than my past life, but it is just as fulfilling. Promise. Hope. Peace. Joy. And sober. Transcend.

I give myself permission to cry when anniversaries of loss come, after all, tears sparkle. I forgave myself for my survival mode drinking. “Who wouldn’t be in survival mode?” A veteran with PTSD gave me that gift. When I allow myself to cry and feel my feelings, a new insight, treasure, gift comes into my life, sometimes quickly and sometimes agonizingly slow.

 A rich, full life has pain, challenges and lessons.  It also has joy, growth and love. Transcendence. It’s a journey. It’s a process. I have a place at Life’s table. Booze does not.

And I cried today. That’s okay. Something new will come. Tears sparkle. Tears clean the conscience. A gift.

I’ve told you one of my stories. Would love one of yours.

Author of Meditations and Encouragement for the Caregiver of a Loved One with Dementia

Published by Barbara Hinther

Barbara Hinther author of Meditations and Encouragement for the Caregiver of a Loved One with Dementia and What About Me, God. Time to share what she has learned and hopefully, others will know they are not alone. This too, shall pass with beautiful, yet painful, lessons. Barbara lives in a rural town in Idaho where all is community. Bless everyone in the community for their support and their never-ending let’s pitch in attitude! She worked in marketing for over 30 years and volunteered with the Idaho Youth Ranch and St. Vincent’s de Paul Thrift Store. Then her hardest job ever was caring for her husband who died from Lewy body dementia and needed her full-time care. Feelings of abandonment were constant. Life was very difficult for a while, but love, faith and hope will overcome. Let the adventure continue!

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