Taking Care of My Dad, - An Adult Daughter Takes Care of Her Elderly Father With Alzheimer's Disease

My father was living alone in late 2006, when a long standing problem with his knee had reached a critical point, leaving him basically unable to get around to take care of himself. With no one else available to take care of him, a decision was made that I, along with my eleven year old daughter and my twelve year old son, would temporarily move up to Orange County, from our home in San Diego, to care for him before and after his surgery. With my husband's naval career winding down, the timing would perfectly coincide with our plans for after my husband's retirement to move back to the the small town outside of Memphis, where we had been previously stationed. Of course, you know what they say about the best laid plans of mice and men don't you?

It was a couple of days after his surgery, he was still in the hospital, and I was at home that afternoon, while my former step-mother was visiting the hospital with my older daughter, that I received the phone call that would change everything. That was the day that I first heard the words Alzheimer's disease in connection with my dad...

It has been three and a half years since I received that phone call, and many things have changed; my return home, seems to have become more permanent, and our retirement plans have pretty much gone out the window. My two older children, who were part of the family discussion and decision making process when we had to make the decision to stay, are now only two and three years respectively from graduating from high school and pursuing their own dreams, and my newborn is now a thriving and rambunctious toddler. My dad has good days and bad days. In the last three years, as the disease has progressed, and more and more our relationship is reversed, I am torn between grief, over losing the father that I have known all of my life, and gratefulness that I and my children have this time with him, because I know that our days are precious and few.

What hasn't changed is how much I love my father.

In the last three years, as I have taken on the role of my father's caregiver, I have learned much about myself, about the strength of the bonds between a father and daughter, and about what being a family caregiver actually means; because although I wouldn't change things, even I didn't realize in the beginning, the extent to which caring for my dad would monopolize my life, nor did I realize the enormity of the sacrifices I was asking of my family.

December 21, 2010

Orange County, California

It was after nine-thirty in the evening, dinner was long over, the dishes were done, my three year old daughter, was bathed and in bed. My fifteen year old daughter, reminding me of my younger self, was curled up in her room with a book, while my sixteen year old son, who despite my warning that he would catch a cold and be sick for Christmas, had spent the afternoon with his friends, playing football in the rain, had been asleep for nearly an hour. With my father settled comfortably in his recliner in the living room, sipping his after dinner tea, and watching television, and the rest of the house quiet, I had slipped off, as I do most nights, to spend some time writing. I had only just settled in and gotten comfortable, when my husband, Michael, with an apologetic look on his face, poked his head into my makeshift office in the back of the garage.

"Uh, babe, your dad's looking for you," The way that he pauses, as though carefully choosing his next words, has alerted me to the fact that there is a something else, a something else that he doesn't particularly want to tell me, and so I stop what I am doing to focus my total attention on him. After a moment of consideration, he has apparently concluded that there is just no other way, and decides to just blurt it out, "He wants to know when he can go home."

"He is home," I answer, stating the obvious.

"I know that," Michael replies, his tone now sounding a little annoyed at me for telling him something he so obviously knew, "but as I was coming through the living room, he stopped me to ask when he was going home. I told him that he was at home, and that this is his house, but he didn't believe me and started to ask where you were...." shrugging his shoulders slightly, as his voice trails off, he gives me the universally understood upward palms gesture, signaling that he doesn't know what else to say.

For a couple of minutes neither of says anything at all.

A much needed winter storm is pounding a seriously drought weary Southern California, the sound of the torrential rain hitting the roof of the garage echoes loudly in the in the silent space between us. Michael, looking as helpless as I often feel, waits for me to do or say something that will remove this weight from his shoulders. I begin to feel a bit sorry for him. My poor husband, he has sacrificed an awful lot so that I can be here, we both have, but this isn't his father, and truthfully, when he proposed to me all those years ago, neither of us knew that he was signing up for this.

For what isn't the first time, and most likely will not be the last, I count my blessings, and wonder secretly, if I would be as capable of showing such selflessness and compassion if our roles were reversed.

Slowly, I draw in one big breath, as I steel myself against whatever might come next and then I release it just as slowly. "Alright," I sigh, as my plans for the evening are evaporating into thin air, "I'll go talk to him."

I brush by Michael as I make my way out of the garage and he flashes me a small smile of what is either gratitude, or relief, but I am unsure of which.

My father, sitting in his recliner in the living room, exactly where I had left him just a short time before, doesn't acknowledge my presence as I re-enter the house. Thinking that he is engrossed in whatever he is watching on the television, I sit down in the overstuffed chair beside his, and wait for a commercial. When the commercial comes, and he still hasn't said anything, I say, in a voice that I hope sounds more carefree than I am currently feeling,

"Hey Daddy, what's going on?"

As my voice interrupts his private revere, he turns to face me. “I was just wondering," he says, "when I am going home?"

"Daddy, you are home." I reply, hating myself for sounding as if I am explaining some new concept to my three year old.

"You are at home, and this is your house." I repeat.

Trying to gauge the seriousness of this latest episode, I watch closely as my father attempts to match my words to his surroundings, and seeing for myself that he clearly does not recognize his home, I feel a familiar sad ache, as a new crack begins to spread across my heart. When he is sure that he has given my words, and his surroundings a fair evaluation, he smiles and turns his attention back to me. In a teasing tone, so familiar to my childhood memories, he says,

"I think you're trying to trick me."

Swallowing hard to push down the surge of emotion that is rising up inside of me, I silently remind myself to keep the focus on him.

"No Daddy, I would never try to trick you, you are at home, and this is your house."He thinks about this for a moment, and then challenges my answer,

"If this is my house, why are all these people in my space? Why are you here?"He smiles again, this time somewhat smugly, as though he thinks that he has bested me, and I will not be able to answer him.

"Daddy," I begin again to explain, "You are at home, and this is your house, but I live here with you, and so do your grandchildren, and so does Michael,"

"You live here...." he says in a quiet voice, that is more to himself than to me, and then, for a little while, as if he is mulling over this possibility, he is quiet again."Did you live here last year? He demands suddenly.

"Yes." I answer, the word barely escaping my lips, before he is firing questions at me in the rapid succession of a prosecuting attorney in the midst of grilling a hostile witness, "The year before that?" "Yes." I repeat. "How about the year before that?" "Yes." I reply again. “What about the year before that one?" "No, Daddy, the year before that, I was still living in San Diego." This change in my response causes him to cease with the interrogation tactics, and as he considers my reply, there is silence between us once more.

As that quiet deepens, I sit tense and rigid on the edge of the chair, attempting to appear as though I am waiting for him to speak, with a patience that I do not feel. I steal a glance at his face, and squash the urge to run my fingers through his snow white hair, in the same reassuring manner that I have often done with my children. A second glance and I see the thought process as it runs through him. Knowing how important it is for him, that I respect this, I fight off the temptation to jump in and supply the answers. As the silence lingers, I have abandoned the furtive glances that I had been casting in his direction, and I have begun to study the familiar lines and contours of his face, hoping for some sort of cue from him. (I have learned over time, that in these types of circumstances it is best to follow his lead.) With no cue forthcoming, I eventually drift off to my own thoughts,

Inside my head, my thoughts are not much more than a tangled mess of emotion, which I try, and then fail, to unknot. Caught like a fruit fly in my thought web, I lose track of time, and am brought back to the here and now, by the feeling of someone's eyes watching me. I turn and meet my father's familiar hazel eyes. Suddenly, it is 1981,and a fifteen year old me is in the familiar position of being trapped, like a deer in the headlights, in the patient, if not irritated, gaze of my father, who is waiting for my explanation of whatever it is that I have done this time, Realizing that this is the cue that I have been waiting for, I begin again.

"Daddy, this is your house, the house that you and mom bought in July of 1962. "Out there," I tell him, as I point like a tour guide toward the den, "is the fireplace that mom designed, and that the contractor couldn't get right until Jimmy Turner, who was just sixteen, brought his rock cutter over, and cut the bricks the right way. This is the house that I grew up in, and I live here, because you had a knee operation in 2007, and you couldn't get around very well, you needed someone here with you," I purposely gloss over the diagnosis of Alzheimer's related dementia, because I know that he will not believe it or me right now anyway, and continue to explain, "so Joey and Jordan and I moved back here to take care of you, and when Michael finished up his last tour, he came too. Jami was born in May of 2007, and now we all live here together, you, and me, and Michael, and the kids, and it is very crowded."

"If this is my house," he counters, "then where is my bedroom?" "Down the hall, last door on the right," I tell him.

He considers this for a second or two, and I think that I am finally getting through to him.

"What time is it?" he asks.

I look at the clock, "ten thirty-five," I answer.

"It's past my bed time, no wonder I'm so tired." and as he has completely changed the subject, I start to believe that we've cleared tonight's hurdle.

"Do you want me to help you to your bedroom?" I offer.

His tone bristles, "You don't think that I can get there on my own?" I know that I have misstepped, he is on the offensive now, and I am treading on shaky ground. I look him straight in the eye, and choose my words carefully,

"Oh yes, Dad, I know that you can, but it isn't safe for you to walk without your cane," I remind him, "and you cannot carry your cane and your tea."

He grumbles like a stubborn child, who is half asleep but still insisting that they aren't tired, "I'm not ready yet."When he makes no further remark about his ability to make it to the bedroom on his own, I know that I have dodged a bullet, and I breathe a sigh of relief.

“I don't think I can get used to living here," he says.

"Daddy, you have lived her for nearly fifty years." I say, and so we begin all over again. I tell him the name of the street, I tell him who his neighbors are, I remind him of little things, like the time my sister put the neighbor boy in the dryer, and the big things, like the morning that the den he built, nearly burnt down, because a burning log rolled out of the fireplace and caught the carpet on fire.

After about fifteen or twenty minutes of this, he decides that he doesn't care if this is his house or not, he is tired and he wants to go to bed. As I walk him down the hall, he still believes that I am trying to trick him. When we reach his room, I turn on the light, and turn down his bed. I am suddenly struck by the thought of how many times he has done this for me, and how many times I in turn have done this for my children. Taking one last shot at convincing him, I point out that both his dresser and his bed are in his room, so this must be his house.

"Well that's my dresser and my bed anyway." He agrees.

"It's okay Daddy," I tell him, "when you wake up in the morning, you will see that you are at home, and by noon tomorrow, I will have done something that you don't like, and all I will hear for the rest of the day is This is still my house young lady, and don't you forget it."

He smiles at me then, but I know that he still doesn't believe me. I can't really blame him, I am not sure if I believe me either.

"Good night Daddy, I love you." I say as he climbs into his bed. "I love you too." He replies, as I close his bedroom door.

Alone, I find that I am suddenly longing for my father to come and walk me back down the hall, to feel the soothing warmth of reassurance of his much larger hand curled around my tiny fingers, to have him chase away the monsters and the ghosts that are lurking in the shadows and make my world right again.

"There is irony in this," I am thinking, as I brush away the one or two pent up tears I have allowed to trail slowly down my cheek, and alone I begin back down a hallway that seems somehow longer than it had only moments before.

_{-Kristen Burns-Darling © December 2010}