The illusion of control

My art studio in Arizona got a major makeover last week – because it was the only thing left in my life I could control.

For those of you who haven’t been following my blog, here’s the backstory: my husband and I have been full-time caregivers to my 89-year-old father for about 2 years. He has Alzheimer’s disease and dementia. He’s required more and more care, to the point we’ve had to shut down the nationwide expansion of Paint a Scarf.

December 23 we boarded a plane in Phoenix for Dad’s final visit to the state he loves: Alaska. He spent Christmas with my brother in Valdez, where Dad pastored for nearly a decade.

We managed to get Dad back to his winter home in Phoenix January 5, and he immediately took a turn for the worse. Within days incontinence became the norm. Eating and drinking became more difficult than ever. He even grew disinterested in TV westerns, which had been his sole source of entertainment.

He would either fall asleep in his chair, or he would pace incessantly, shuffling with his walker through the kitchen, around the living room, and back through the kitchen. His goal wasn’t exercise; he was driven by an unseen force.

One night he shuffled for over an hour when I heard him cry out, “Help me!” I found him slumping slowly to the floor. He’d given out. David and I each grabbed an arm and dragged him to the closest chair, where he promptly fell asleep.

I finally realized David and I were in over our heads. We needed more than the occasional in-home helper.

The hospice social worker suggested we place him in a dementia-care group home near us. The home is immaculate and professionally staffed around the clock. The price was affordable. And they had an immediate opening.

We made the transition just in time. Dad can no longer speak clearly, walk, or eat regular food. It takes two people to move him from bed to wheelchair to easy chair in the living room. We visit him every day, but most days he doesn’t seem to know we are there.

Why had I waited so long to get extra care for Dad? Two reasons: foolish pride and a foolish vow.

Pride: I was going to be the good daughter who saw her father into the grave. I’d done it for my mother (albeit with the help of my husband, my Dad and 2 daughters). My pride temporarily blinded me to my father’s real needs.

The vow: Decades ago Dad took me aside, looked me in the eye and made me promise that I would never put him in a nursing home. “Of course, Daddy,” I replied, neither of us realizing what that promise would mean.

Last summer I envisioned myself as a successful business woman who also maintained a strong caregiving schedule that kept my dad whole and happy. I was certain I could do it all.

But after the New Year both my business and my father were falling apart. I swallowed my pride, broke my promise, and did what was best for me, my marriage, my business and my father.

I’m a puddle of relief and grief. Feelings wash over me like ocean waves. Sometimes I sense the change coming and keep my head above water; other times I’m blindsided by an emotion and under I go.

Now, back to the art studio.

The weekend before we moved Dad, I looked around for something, anything I could put in order. The piles of stuff filling the studio begged to be moved. So I started clearing and cleaning.

A day later I had a pristine, perfectly organized art studio. Marie Kondo would be proud.

I didn’t create any art for a week. I realized the purpose of that space wasn’t work; it was peace. I’d step into the studio and simply stand there, not touching a thing, drinking in the calm serenity for a few minutes. Then I’d step back into the chaos of my life and soldier on.

I finally started a project after a couple of weeks. It’s a silk painting of the Grand Canyon. Last winter Dad and I had dreamed of taking a drive to the Canyon together. We made plans, talked of what we’d see and do, but decided we’d put it off until Fall 2018. But fall came and Dad wasn’t well enough to make the trip.

I started the painting after we moved Dad to the care home, but I can’t seem to move forward except in tiny increments. Just like Dad’s life journey, I don’t know how or when it will end. The painting is an illustration of the grief I don’t have words for.

So every day I visit Dad, and I retreat to my art studio. And I wait for the end.

2019-01-23T05:39:53-08:00

8 Comments

  1. Cherie Blankenship January 22, 2019 at 10:07 pm - Reply

    I am so sorry that you and Dad are suffering. I pray that you will both find peace! Much love to you all.

  2. Betty Dye January 22, 2019 at 10:34 pm - Reply

    So beautifully expressed Gina. I am praying for you. 😘

  3. Janice Trumbull January 22, 2019 at 11:43 pm - Reply

    My heart weeps with you; the suffering you feel and the trials your dad, indeed the whole family, are enduring. Don’t let the whispers of the evil one overwhelm you! I know you are relying on the Great Physician and our Sovereign God for strength, wisdom and courage as you continue to walk this road. I love your open heart my dear friend. You know you have my continuing prayers.

  4. Suzi Merritt January 23, 2019 at 2:11 am - Reply

    Gina, don’t view it as the end is coming. What saved my sanity when caring for my aunt was thinking of it as a transition to a new beginning. One filled with Christ and health and joy waiting to begin for her. These final days will give you moments to cherish, moments you thought were long gone. You are sad to see him this way and it hurts for both of you but he’s so close to his heavenly reward and that is a blessing. Hugs to you and David as you go through this final stage of life on Earth for him. Always remember the bright light he is headed toward.

  5. Stephanie January 23, 2019 at 3:33 am - Reply

    Beautifully written Gina. So many in a similar situation. Your willingness to share will be a blessing to so many. Thank you! – Stephanie

  6. Jeri Green January 23, 2019 at 3:53 am - Reply

    I read your blog with tears and smiles…memories of the good times with your family are still so strong and yet, through your open honesty, I have cried with you as the end draws nearer…thank you for your devotion to your parents, the Lord will bless you beyond your expectations… 🙏🙏🙏💕

  7. Sandi Bentz January 23, 2019 at 8:20 am - Reply

    You are as gifted a writer as you are an artist. It reminded me of the scripting that God gave me when Jeff Hamm passed away. Psalm 27:13 & 14.”I would have despaired had I not believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; Yes, wait for the Lord.” Hugging you from afar.

  8. Ray Hustead January 27, 2019 at 9:14 pm - Reply

    Thank you. Gina for all your pictures and reports on Gene. It is wonderful how you have taken care of him, He was my dear friend, though I hadn’t seen him much for several years. We had several classes together when were in seminary, but it was not until we both were pastors in Fairbanks, we became close. The last time I talked to him, he was in Lynden, WA. I will miss him, but I know he is rejoicing for he closed his eyes as he went through that doorway, and when he opened them, He was in the presence of Jesus and Jane was there too to welcome him home May God bless you and comfort you as your family goes through this time of grief.

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