A Day in the Life

For my fellow dementia caregivers--a band of dedicated wives, husbands, daughters, sons, sisters, brothers, and friends, who toil mostly behind the scenes with little credit or thanks, doing it out of a sense of rightness and, if truth be told, out of love. This blog post is for you. 

A day in the life of a dementia caregiver has three distinct components: you physically care for your loved one in whatever ways he or she needs, you anticipate, and you remember. Sounds simple, doesn't it? But it's really very challenging. 

Many people wonder what you do when you care for a loved one with dementia, and the answer will vary from caregiver to caregiver. Some of us are busy helping with bathing, feeding, and walking, but many of us, especially those of us dealing with behavior variant Frontotemporal Dementia (bvFTD), also spend time dealing with bizarre, unpleasant behaviors. Usually that means we are cleaning up messes after they have happened because your bvFTD loved one can think up things to do you cannot imagine. 

A few years back, my youngest son and I had to apologize to store employees because Gordon, my formerly courteous husband, would fly into a rage at helpful, unsuspecting employees and swear at them using the "F" word. Then, of course, there are the money problems. 

Families caring for a bvFTD loved one often have suffered devastating financial losses resulting from the loved one's poor executive function and choices, which means the caregiver has the added stress of figuring out how to keep a house over their heads and food on the table. Scary.

In addition to the physical caregiving, there's the anticipation factor. It's all about anticipating what's going to be needed next. It's about helping with minutiae, the hundreds of things you and I do each day without thinking about, on autopilot, but the person with dementia can no longer do without help. For instance, I loosen the jars and caps I think my husband might use that day to alleviate his frustration because his grip is now weak. I put items he might use in exactly the same spot so that he can find them. And I've recently begun to help him with dressing. He's tries to put shirts on upside down and gets all tangled up, and then sometimes he needs help with buttons. We caregivers never know what the next day will bring. We may have several calm days where we are lulled into a routine, and, then, bam, something new pops up. As you might suspect, we don't get much sleep, always half listening, waiting for the proverbial other shoe to drop.

Oh, and then there are the doors being left open. Whenever Gordon goes outside, he leaves the door open, and he often leaves it open when he comes back inside, or he closes it with a beloved pet outside and doesn't hear it scratching or whimpering or meowing to get inside. I'm often searching for my very frightened cat or letting in my very puzzled dog, neither of whom understands what has happened. Dementia is hard on pets too.

Perhaps the most difficult job of a dementia caregiver is being the rememberer, the caretaker for the memories of the time before your loved one developed dementia. Somehow, in the midst of irritation, frustration, anger, loneliness, despair, resentment, pain, and confusion, an array of unwanted emotions that wash over us when least expected, we have to keep enough perspective to not let the spouse, parent, child, or friend that we once deeply loved and cherished be lost to us and to the world. We have to tell the first part of our loved ones' stories in addition to the last part. As Gwydion says in Lloyd Alexander's The Black Cauldron, "so shall I honor Morgant for what he used to be." Replace Morgant's name with our loved ones' names and honer them for what they used to be. Our loved ones did not choose this dreadful disease, so we must find ways to remember and honor our loved ones' lives before they developed dementia.

Wow, all that in a dementia caregiver's day, and I didn't even touch on the driving issue and taking the keys away, or the fears and reality of abandonment by family and friends who choose to be in denial or are scared or don't want to be bothered. And how about getting reliable respite time for oneself? Ah, there's always more to write, isn't there?

Big hugs to all my fellow caregivers,

Kate

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"Why Are the Seeds on Top of the Dirt?"

"Katinka, why are the seeds on top of the dirt?' asked Gordon with a puzzled expression in June 1983. We had been together as a couple for almost three years, and I was seven months pregnant with Amy. We were at the mountain ranch that would be our family home for the next twenty-one years, and we were planting a vegetable garden. Gordon had handed me a packet of seeds and said to follow the directions. Well, I did just that, followed the directions, which said "place seeds 4 inches apart." The look on Gordon's face was priceless. Then, he smiled, laughed, and hugged me close, and said, "I forgot you've never planted anything before. The seeds have to go in the dirt." Whereupon, he knelt beside me on the ground and showed me how to plant seeds. This is one of my favorite memories of Gordon and me together because Gordon did not tease me, put me down, or ridicule me. Instead, he was patient, kind, loving, and made me feel cherished.

What prompted this memory? Recently, I read an article about dementia caregiving, and one of the suggestions is to "Spend time remembering who the person with FTD was." I haven't done this much because I find it very painful, but the point was a good one. If you remember your loved one before FTD (frontotemporal dementia), remember what you loved about him or her, it will help you to be more patient and understanding during the sad, lonely, frustrating days, weeks, and years of caregiving.

Soon after I met Gordon, I sensed he was special. The beginning, however, was not auspicious. He would chitchat, and I dislike chitchat because I find it pointless, plus I'm not very good at it. One Saturday at the office in 1976, three of us were talking about politics because it was an election year, and I asked Gordon a question. He replied with some cliched comment, and I looked at him and said, "If you cannot give me a thoughtful answer based on intelligent ideas, then don't bother talking to me about politics." He laughed uproariously and went back to his office. A few moments later, Gordon came back to where I was and answered my question thoughtfully and fully. 

 

From that moment on, Gordon only talked about real things with me--poetry, politics, saving the world, and so much more. Until FTD changed him, Gordon and I had many, many fun, spirited, deep, intellectual, thoughtful, sparkling conversations that went on for hours. One rainy day in January 1985, during our three day honeymoon, when I was seven months pregnant with Gavin, while it poured with no let up all day, we spent more than six hours engrossed in our discussion about the book A Passage to India by E.M. Forster and the film based upon the book. The hours flew by; it was pure heaven. At dinner that evening, we considered that afternoon to be one of our finest ever.

I think two happy memories are enough for this first remembering exercise the article recommended that we dementia caregivers do. More than two memories might be overwhelming because of the stark contrast between then and now.

I often wonder if there is any part of the Gordon I loved and married and had children with left, or is his essence all gone. Mostly, I think it is gone, but every once in a while, months or years apart, Gordon will say or do something that echoes the past.

This morning, Gordon said, "Katinka, good morning. How are you today?" This may not sound remarkable to most of you, but it was the first time that Gordon has said it to me, when no one else was around (with visitors in our home, basic courtesies sometimes kick in--it's a puzzlement), since August 2002, eleven long years ago. For a moment, it took my breath away, then brought a tear, then a smile, making me remember our mornings so long ago that often began with Gordon awakening me with a kiss and a bit of poetry. What do you know? A third memory. 

Take care,

Kate

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Home Is Where You Belong

In his poem "Death of the Hired Man," Robert Frost says, "Home is the place where, when you have to go there, they have to take you in." But that makes home merely a place of obligation, and a home is SO much more than that. A home is a sanctuary where you are wanted and are cherished, a place where you belong.

Regular readers of my blog know that I did not have a home when I was a child. I lived in a house, but it was only a building, not a home. My grandparents' houses were places of sanctuary, where I felt safe, but they did not quite make it into the home category.

My first hint of a home came with my high school boyfriend's family. The Millers cared about me, and I cared about them. They even wanted me to talk at dinner, and I did not have to fear being hit or having my head slammed into the wall. That was a new experience for me, and I did not know how to speak freely. Jim, my boyfriend's dad, teasingly told me that I could not come to dinner again unless I talked, so I squeaked out something, enough to get invited many more times. During those dinners, I felt as if I belonged, and it was a heady experience.

My next taste of home came with Mom Woosley. Her son and I danced for awhile with a love that ultimately became a lifelong friendship, and Mom Woosley became the mother I never had. She loved me unconditionally, and I was always wanted and cherished in her home. I was the daughter she did not have, and while I knew that I belonged in her arms and her heart, I always knew I was a guest in her home, a welcome one, to be sure, but, nonetheless, a guest.

Another glimmer of home came with my roommates Cath and Irma. We three worked in a factory together in our early 20's, and somehow we found each other and became roommates. We lived together almost four years, and we formed a temporary family bond. We loved each other, and, for awhile, we belonged together in our homey apartment, but we were really just marking time until we each got married and went our separate ways, and we knew it.

My brief, first marriage was a mistake, but a mistake that I do not regret, for it led me to my life today. Sadly, my first husband and I did not have one moment when we felt at home with each other. But we figured this out quickly, realized we should not have married but just been friends, and parted amiably, so amiably that my future children called him Uncle Mitch.

Then in 1980, Gordon and I fell in love. The first weekend we went away together I felt something I had never felt before--I felt like I belonged with Gordon and he with me, felt like I had known him forever. Everything was easy; it was as if we were the missing puzzle piece in each other's life. Slowly but surely, we made a home together, a home where we could be ourselves at all times and feel we were wanted and cherished by each other, a home where we belonged.

Our love produced four very wanted and deeply cherished children, and our home was filled with love, joy, and laughter for many, many years. At long last, I had my home, we had our home, and I was grateful every minute for it; I never took it for granted. We six belonged together.

The fascinating thing about a home is that it can withstand the slings and arrows of the outside world because the love inside is armor for the home. It is when the slings and arrows come from the inside that a home can crumble because you cannot have armor on the inside to protect you because interior armor would stifle the vulnerability that is necessary for love to exist. We must be vulnerable to experience love in all its simplicity and glory. So, when a home is attacked from the inside and crumbles, it must be rebuilt on the back of broken dreams. That is what happened to our home when dementia and schizophrenia, both relentless and insidious foes, made their appearances. We four mentally well family members had to create a new kind of home, a home that had lost its trusting innocence in the power of love, but a home that still chose love as its core. We four made a new home, a good home, a home where we belonged, but a home tinged with memories of our lost home.

People say that home is where the heart is, but that's a bit too glib. What if your heart is in several places? Now that my children are grown and with partners, my heart is in different places (except for those joyous times when we are all together). Can I belong in three places, or will I always be a guest in their homes, as I was in Mom Woosley's home? Or worse, an interloper? And what of my missing son? Part of my heart is always with him. So where is my home now? Do I have one?

If home is where you belong, where is your home if you don't really belong anywhere anymore? When your spouse is gone, when your house that was your home is sold, when your children are grown and on their own, where is your home then? A question for the ages! It seems that I must broaden my perception of what a home is, or at least what mine shall be, and figure out a new way of belonging.

Take care,

Kate

"Greater Love Hath No Man"

Easter is a special day. It celebrates the purist love known to man, the love of one human choosing to die for another. I know there's debate about whether the story of Jesus rising from the dead is true, but there is no debate that I can find about whether Jesus chose to die for us, in fact, there's much historical evidence to support this, so Jesus' choice is what I want to focus on in today's Easter blog.

Stories in books and movies celebrate the person who chooses to die for family, friends, or strangers. Why do we celebrate this? Because we all wish we would do the same thing, but we know deep down inside that we probably won't. Self-preservation is strong in most of us, but self-preservation is not held up as the human ideal; rather, it is often represented as cowardice, and we scorn the person who grabs the life preserver out of another's hands.

Jesus said, "Greater love hath no man than this, that a man lay down his life for his friends." (John 15:13) and "Love your neighbor as yourself." (Mark 12:31). But the important point isn't that Jesus said the words, it is that he lived them. He did lay down his life for us, not knowing for sure that he would rise from the dead, and he loved us, his neighbors, more than he loved himself.

I find it telling that Jesus did not ask us to do as he did and love our neighbors more than ourselves. Perhaps it is because he knew that that is too much to ask from us; perhaps Jesus knew we would have a difficult enough time loving our neighbors at all, so asking us to love them as much as ourselves was the task he presented us with, what he wanted us to strive for, because he knew it was the one we could achieve.

Long ago, perhaps forty years ago or so, a friend and I were discussing Jesus' words and whether they had any value if Jesus was not, in fact, the son of God. I'll never forget my friends words, "Sure they do because how Jesus taught us to live is the best way to live. The world doesn't run well at all when people put themselves before others." Ah, a light bulb moment.

And so simple too. If we were all willing to die for one another, and we were to love others, friend or foe, acquaintance or stranger, similar or wildly different, as much as we love ourselves, the world would be, quite simply, a heaven on earth because no one would strive to be more than, to have more than another.

And maybe that's what Jesus was telling us before he died for us. The secret to making our world a heaven is in our own actions.  We act like Jesus, and we create a good world for everyone. We scorn his words, and we get the world we have today--war, poverty, greed, inequality, ugliness, despair, and hopelessness. 

Easter reminds us of our potential. It's not too late to change our ways; the choice is always ours. We just have to make the choice.

Happy Easter,

Kate

Be Open and Rob Silence of Its Power

      Long ago and far away, though it seems like only yesterday, my mom wrapped herself in a cocoon of silence. My dad viciously beat her regularly, but she refused to tell her mother or her sister about it. Most nights from the time I was nine years old, I would lie in my bed, locked in my bedroom, listening to the pattern of abuse, hearing the swearing, hearing the flesh being whacked with a fist or open hand, hearing the insults, hearing my mother crying.

     One particularly bad night occurred around the time of my 8^th grade graduation. My parents had gone out to dinner to celebrate their 15^th anniversary. For some reason, probably because he was drunk, my dad had forgotten to lock my bedroom door. When the beating was in full swing, I went into my parent’s bedroom and saw my dad in his underwear, kicking my mom into the wall. I shouted at him to stop, but he told me my mother deserved it, and he spewed out vile, ugly words. Again, I shouted at him, and this time I threatened to call the police. He sneered at me and told me his "brother cops" would never do anything to him, which, sadly, in the days of the early 1960’s was probably true.

     My heart broke to see my tiny, nearly naked mom, huddled in a corner of her bedroom, curled into a ball in order to protect herself as well as absorb the beating better. I walked toward her and bent to pick her up. She looked so broken. My dad shouted obscenities and stormed out of the bedroom.

     The next morning when I got up to go to school, I saw my dad sleeping in the chair in the living room. He woke up when I passed his chair. I ignored him. He asked why I didn’t say “Good morning” to him, and I said that I had no respect for him anymore because he was a bully who beat my mom. As usual, he called me insulting names, but I stayed silent.

     When I got home from school, I discovered that my mother could barely walk. She was wearing pajamas and a robe, though it was very hot that June day, and we had no air conditioning. I pleaded with her to tell her mom, my grandma, about what dad had done to her. She told me that I didn’t understand, that my dad had apologized, that she loved my dad. I was disgusted and told her if that was love, then I hoped to never love anyone.

     The next day was my 8th grade graduation. My mom could not attend the ceremony, as she could still barely walk. My dad told everyone that she had the flu. When we got home, I pleaded with my mom to go into the living room and show everyone her bruises. I told her that I’d help her walk. She refused. I threatened to tell the whole family and bring them into her bedroom because it was the only way to stop dad from beating her. I turned to leave her bedroom. My mom got out of her bed, and with tottering steps came toward me. She touched my arm and told me she loved me and was sorry to miss my graduation. Then, she told me that if I told anyone in the family what had happened that she would tell them I was lying.

       I was shocked!

     I spent the rest of the evening in a surreal fog of bizarre comments about how everyone hoped my mom’s flu would be over soon. I will never forget the triumphant smile that my dad bestowed upon me. The bully knew he had me beat. He knew that I couldn’t bear the thought that my grandparents might think I was a liar (though how they would think that if they were staring at my mom's bruises, I have no idea). To this day, I feel shame that I did not speak up, that I was a coward.

     Fast forward five years, and I am startled awake at six in the morning by a strange sound. It was a gunshot. My mother had finally freed herself of her brute of a husband by ending her life.

     I decided, then and there, to break my silence, and I told everyone about the years my dad beat my mom. No one believed me. My dad told everyone that I was a liar and had started using drugs. This would have been funny if I could have made anyone believe me. I had never used anything stronger than aspirin! I was lectured by the police, who investigated my mother’s death; I was lectured by neighbors; I was lectured by family; but the most heart-breaking moment was after the funeral when my beloved paternal grandpa cupped my face in his hands and, with tears in his eyes, pleaded with me to stop using drugs and stop lying about my dad. Alice down her rabbit hole never felt crazier than I did at that moment.

     Soon after the funeral, I moved away to live with friends. Before my mother died, I had been my dad’s backup punching bag. After my mother’s death, I had been promoted to primary punching bag. I had not protected my mom, but I was determined to protect myself, and the only way to do that was to leave. If only my mom could have, would have left...

     I deeply regret my silence on the day of my 8^th grade graduation, but regret is meaningless unless it translates into action. Consequently, I have spent my ensuing years talking openly about everything. Some might suggest that I am too open, but I don’t know if you can be too open. I know first hand that silence can kill, and, at the very least, silence causes unnecessary misery, and I am determined to lessen some of that misery.

     But being open isn't easy. Sometimes it hurts; sometimes it results in ridicule or misunderstanding; sometimes it is lonely. Being open requires the conviction that the risks of being open are worth taking in order to reveal the truth hidden by silence. 

     To that end, I am willing to talk openly with anyone. Talking frees you from the prison of silence, and talking results in change and understanding. After all, if people don’t know you need help, how can they help you? If they don’t know you are in pain, how can they comfort you? Being open is freeing. Being open is lifesaving. Being open leads you from the darkness to the light. And most importantly, being open robs silence of its destructive power.

     In loving memory of my mom, who died, smothered by silence, 43 years ago this March.

Take care,

Kate 

"By naming and framing our stories in words, we can face the truths of our lives in little steps which allows growth to take place organically, without devastating crises." Gabriele Rico