Tag Archive | dementia

Stuck in Oz

Dorothy was so eager to get home! All she could think about in Oz was getting home to Kansas. While she appreciated the friends and support she found in Oz, her heart was set only on going home.

“There’s no place like home. There’s no place like home. There’s no place like home. There’s no place like home!”

What if the Ruby Slippers hadn’t worked?

There are no Ruby Slippers for my father. My father is stuck in Oz! He wants desperately to get home. But his Kansas is not an option. It is cost-prohibitive to have someone care for him full time in his home, and he requires 24/7 care. Family is not an option either, as his mental conditions include anger and abusiveness. He suffers from dementia and from cognitive disorders caused by microvascular damage to hundreds of blood vessels in his brain, caused by multiple mini-strokes. All he knows is that he wants to go home. Yesterday!

He is instead in a lovely Veterans Home, a spacious facility with his own room, delicious foods, caring staff, and fun activities.FullSizeRender

There is a garden there, with flowers and vegetables. On the patio of his wing there is a lovely planter box waiting for its first plants.

“Let’s plant some chrysanthemums!” I suggest.

“No, I want to plant things at home,” Dad replies. He misses his 3/4 acre with its many nut and fruit trees, ample space for garden and flowers. He wants to tinker on his own property, his own yard and house.

The Veterans Home staff let us know that he needs to have hope of going home, even if it is not a viable option. His mind does not reason logically. He needs hope of getting home, home to his Kansas. So they let him know what he needs to do to go home. He needs to be able to get into his bathtub by himself. He needs to be able to take medications on his own. Dad is content to work on improving these skills, with the goal of getting home. He is happy and patient with his progress, and participates in activities.

It reminds me of my Aunt Grace. She lived in a nearby care facility. Every day that I visited her, she was so excited: she was going home! Her son was picking her up that very afternoon! She was packed and ready to go! And so it went for her, day after day after day. Hope kept her happy and cheerful. She was going home! And finally, she was allowed to go Home. Home to her beloved husband, who departed this life decades ago. Home to her other loved ones on the far side of the veil. Home to health and a perfect mind. Home to the true Kansas.

I have also wanted to go home to my Kansas. When I found out that my first husband, father of our three children, had been living a double life and not the person he pretended to me to be, I wished I could go back! But there was no Kansas for me to go back to. I was also stuck in Oz, in a land not of my choosing, three children with me. When I remarried, the situation for me was much harder, and I wanted still to get back to Kansas! But Kansas was in the past, and I couldn’t get back there, no matter how I tried.

So after raising the three children plus one from the second marriage, I left and began my own new adventures. I no longer want to return to Kansas. That is only a dream of what might have been, a fantasy of lost opportunities and hopes.  Instead, I have my own corner in Oz. I’m finding new friends, new dreams, new opportunities. I’m at home in Oz.

Hopefully my father can come to terms with living in Oz, since this will be his home now. He can’t understand it, but hopefully he can enjoy the time granted him. Even if it is in Oz.

Forgiving Father

My dad is seventy-six years old. He currently resides in a rehabilitation center, where he’s been regaining strength in his arms and legs to hopefully live on his own again. This week the staff there informed us that living on his own is not a viable option for him, because of his cognitive difficulties. He has dementia. This is only one problem of many.

Dad struggled the past fifteen or so years with the sensation of having bugs in his skin, crawling, itching, and hoping someone could verify their existence. He thought he got the bugs from some kittens he had at the time, which all died soon after he started itching. Dad went to dermatologists, emergency rooms, physicians, and psychiatrists repeatedly over the years hoping for relief. Blood tests and examinations found no markers for parasites of any kind. Dad went to all lengths to kill the bugs he thought lived inside his skin. He put Lysol in his bathwater (don’t do this!), scrubbing at his skin for hours every day. He refused to let family members touch him, for fear he was highly contagious. He tried swimming in the Great Salt Lake, hoping the salts would heal and disinfect. He insisted on a blanket covering car seats he sat on, requesting we wash coverings as soon as we got home. He wiped off chairs in his house before we were allowed to sit. He withdrew from grandchildren, terrified they could catch parasitical bugs. Despite being told by dermatologists that he was safe to be around, or to swim with, Dad held fast to his fear of being highly contagious.

Dad thought anyone who disagreed with his self-diagnosis of bugs were in on a conspiracy against him. He also thought people were stealing from him. He claimed people were coming into his home, replacing his nice things with old versions. He had elaborate theories of why neighbors and others would do this, and stories of what they had done. He opened nearly half a dozen bank accounts, closing one whenever he thought it compromised and opening another. He hoarded possessions. He put multiple locks on his doors. One hospital psychologist told me in passing that Dad was paranoid delusional.

After my parents separated, when I was nine, Dad insisted on psychological examinations for himself and for my mother, hoping to prove he was a more fit parent and should receive full custody. Although my mother suffered from depression, the profile showed that my father had multiple personalities.

I didn’t learn this until I was an adult. I knew as a child that my dad was sometimes Santa, happy, loving and giving. Other times he was Mad Dad, scary and mean–to my mother especially, but also to my sister, brother and me. Dad grew up mainly in foster homes, Grandpa taking him at times until drinking and beating my dad, who was just a boy. It was the kind of home Grandpa grew up in, and Grandpa ran away for good when he was only twelve. Alcoholism went back to my great-great grandfather, with mean drunks, abuse, and divorce. But Dad doesn’t remember bad things he said, the beatings of my mother. He doesn’t understand why she left and destroyed his perfect family.

Now my father is not to live on his own, because it isn’t safe. Neither is it safe to have him in our homes. He still succumbs to temper outbursts. This crossroad is heartbreaking. I feel we have come around full circle. Where once we were dependent upon Dad for our sustenance, he now depends on us to manage his bills, his finances, help him get groceries, and now we decide where he will live.

He won’t want to be anywhere other than home. He wants to keep his house to pass on to my brother. He has no long-term-care insurance. He has some savings, but those could deplete over the years. There is no way that we can satisfy all my father’s desires: to be at home, independent, and in control.

This isn’t just about deciding where my father will live. It is about forgiving Father. It is about understanding his pain, his heartaches and fears throughout his life. It is about recognizing that Santa Dad is my true father, his true heart revealed. Mad Dad is his alter-ego, the suppressed side of fearful anger, the wounded inner child of generations lashing out. It is feeling his anguish, his desires to be a great husband and father, and how life screwed him over as a young child to the point where he couldn’t ever completely sort it out or heal. But he tried. He truly tried.

Santa Dad taught me to tell time, to dive off the edge of the pool, to ride a bicycle. Santa Dad taught me to stay away from drugs, alcohol, and tobacco. Santa Dad taught me to be a virtuous woman. He likened me to a butterfly, encouraging me not to let others rub off the pretty colors from my wings. Santa Dad lived his life for his children. He wanted to keep them safe, keep them healthy, keep them happy.

Father still loves our mother. Two years ago she dreamed about what he’ll be like in heaven, and that when he is healed she will want to be with him again. I too have hope for him to heal in heaven. When Jesus walked the earth, he cast out devils, made the blind from birth to see, cured leprosy, made the lame walk. I know He will heal my father: “He healeth the broken in heart, and bindeth up their wounds” (Psalm 147:3).

My parents both express desire to be together in heaven. I’ve told each of them my lifelong plan: that when they die, I will have them sealed together by proxy as husband and wife, and then I will be sealed to them, too (see Matthew 18:18). This to me is the ultimate forgiveness. That imperfect people, living imperfect lives, have hope of being cleansed, purified and healed in Christ, to live together as a truly happy family.

I not only plan where my father will spend the rest of his mortal days, but prepare a place in my heart for him in heaven. I have forgiven Father.