My Mother Has Dementia

My mother has dementia. My mother is demented. These two sentences communicate similar yet very different realities. I prefer the first sentence, and it is most accurate. My mother is a warm, caring, beautiful woman who exudes her faith in God. She is accepting, is quick to express her loving feelings (especially since she began to be forgetful), forgiving, and open – as open as she’s ever let herself be. A friend gave me an article to read that seemed to “fit” my mother’s form of dementia, “My Mother’s Case of ‘Pleasant Dementia[i]’.”

Still, it is difficult – and sometimes frightening – for me to be with her. Her memories have begun to blend with fantasy so that her recollections of past events have migrated toward the fantastic. She truly was alive and living in Oakland, California, in 1937 (when Mom was 16) at the time that Amelia Earhart flew to or from Oakland’s airport on her last flight. My mother used to remember this event as an event she was near to. “She took off from Oakland, you know? It was a big deal back then.” Over the years, the story has migrated toward a more personal version. “We were just kids when Amelia Earhart flew right over our neighborhood. She slowed down and flew low enough to wave at all of us kids who were running along her flight path!” Now she believes that Amelia Earhart landed somewhere in the (then) farming neighborhoods and walked among the children, making friends and remembering their names. Mom is now certain that she said goodbye to Ms. Earhart just before her last takeoff.

It’s a beautiful revision of history, and it seems fortunate that the revision moves these heroic events into her memory as events in which she participated. In some ways, she is participating, heroically, in a private event that resembles Ms. Earhart’s last flight. She is flying into the unknown, leaving behind what she’s known, and hoping to discover wonders that enrich her life. 

It gets scary, however, when I see myself in her fading journey. Is this how I will disappear into unconsciousness? Can I trust her memories about our shared life anymore? When she tells me revisionist memories of her own life, and our shared life, what is she really telling me? I sense that the heroic person who is my mother is still in there somewhere… but is getting harder to hold onto. It’s a bit like trying to embrace a more ethereal embodiment of my mother. She’s there… I see her… and when I hold her, I know that I am holding the past, the present and the future…at least hers and perhaps my own. 

I have another very dear person in my life who is suffering from dementia. He is a Roman Catholic priest who shared adventures with me in my youthful days as a teacher of troubled (and troubling) students. We’d take my charges to the backwoods of Michigan, near where he had a cottage on the Boardman River. Our goal was a bit arrogant, but faithful. We knew that these young men needed to feel the fear of being lost in the woods – not knowing exactly what to expect next, and not knowing exactly where they were in this truly unpredictable world. We wanted them to feel the unpredictability of the world.  We wanted them to get in touch with their insecurities.  We wanted them to see their patterns of coping skills… and change them… to be more cooperative with one another for all of our sakes.   

Father John also baptized both of my children, and blessed the otherwise unrecognized marriage of my wife and me. We spent long and lovely hours talking about God and mystery. I truly love this man for his gentleness, his strength, his faith, and his life. 

Father John now lives in a nursing home, about an hour and a half drive from my mom’s home.  So, I reserved a weekend away from my wife… and drove to my mother’s on a Friday evening. The evening was typical. I answered the same questions: “How are the boys?” “How is your woman?” (I’m remarried and she has a hard time remembering this wife’s name.) “What have you been up to?” “Where is the dog?” “Where is the cat?” etc.  I don’t mind answering the questions with as much detail as she can handle. I don’t even mind when she asks the same question over and over again without any recollection that she recently asked that question. But then, I don’t live with her 24/7.

I can be very patient with her until she begins to have delusions, like: “I can’t find the door to the basement. Where did the door and stairway go?” Well… they never had a basement in this home (where she’s lived for almost 40 years). I humor her with this story: “You live on a lake, Mom” (true). “They had to fill in the basement because it kept flooding” (not true). She has two other delusions that drive me toward the fear of losing all control: She has an attic that is fully furnished with beds, sofas, chairs, television sets, windows that overlook the lake, etc. She really doesn’t and they never have. That doesn’t keep her from inviting me to look for the entry to the attic (which she can never find and sometimes gets borderline hysterical when she searches for it). I’ve found no good story to calm her from this loss. Her third delusion is that she owns the garage near her property line. She doesn’t. It belongs to the neighbors who are amazingly kind and understanding. When Mom gets angry that the neighbors are using her garage, I remind her that they asked permission, they keep it up for her at no cost to her, and they’ve agreed to give it back to her whenever she gets a third vehicle and needs the space. They go along with this story, and Mom calmly accepts their use of her property (which never was hers), as long as they know it’s really hers.

So… she’s lost spaces in her house and property that used to exist but that she is now unable to access… It seems that her delusions are representative of her true experience of having memories she used to own moved out of her realm of access. I am existentially saddened… deeply saddened… to see her wrestle with her losses. 

Yet, there are moments of true bliss in my current relationship with my mother. In her youth – during my developmental years – she was forced by economic hardship in our family to work on the line at a local auto assembly factory (Fisher Body in Lansing).  She worked afternoons – so it feels like I barely saw her. She’d leave for work by 2 p.m. and return about midnight. I would often force myself to stay awake so I could relax when I heard her return to the home. As exhausted as she was, she seldom had the energy to come to our rooms for a kiss, hug, or a word.  I longed for her presence then. That longing has truly shaped my relationship life. 

Now, I can be with her. We move lawn chairs out by the water where we just sit and hold hands.  Sometimes there is no talking. We just ARE… together. It is a slice of heaven for me. 

Father John’s dementia is a bit different than my mother’s. He never met my mother but remembers that she is ill. He sometimes imagines that she is mortally ill and often offers to “drive to her home and say mass in her home.” I would love to see that happen, but the only way it seems it’s going to happen is if I pick up Father John (3½ hours from my home), drive him to my Mom’s (1½ hours from Father John’s residence),  let him say mass and visit for an appropriate length of time (3 to 5 hours), drive him back to his home (1½ hours) and then drive myself back to my Mother’s for the night (another 1½ hour). If my math is right, that’s an 11- to 13-hour day for me. I am recovering from leukemia and a bone marrow transplant (two years ago—a fact my mother doesn’t remember) and I can’t push myself that hard yet. So… it will never happen… It’s too much for me to do that much driving (8 hours) and visiting in a day. 

So, I proposed to Father John an alternative… I will spend Friday night at my Mom’s. She and I will drive to YOU on Saturday. We’ll have lunch together, you can say mass at your apartment or in the nearby chapel, we’ll visit for a while, and then I’ll drive her home. The eight hours of driving is therefore split over two days and I can manage the rest.

Father John agreed. He was excited. There was one small fly in the ointment. He was moving on the weekend I wanted to visit. He believed, however, that his move would be completed by Saturday, so we could see his new digs and still have the rest of the visit. We were on! We agreed to meet Fr. John about noon on Saturday. Another friend of mine, and Father John’s, was going to join us.

My mother and I were late leaving my Mom’s home. I asked my friend, Sandie, to try to get in touch with Fr. John because he wasn’t picking up for me. I asked her to tell him that my mother and I were running a bit late and would be there around 12:30 p.m. or so. 

Shortly after my mother and I were on the road, Sandie called me back. “Did you know Father John is moving today?” 

“I thought his move would be over by today, but we can work around that.”

“He seems a little forgetful about your visit, Rick. Maybe you’d better call him.”

I called him and after a few tries he answered. He was foggy on the facts of our visit. I reminded him that he’d always wanted to say mass in my mom’s home, but I couldn’t handle all of that driving in one day. So, we were coming to his place.

“Well…” he paused.  “I am waiting for my movers to show up…”

“Okay…” I paused. “I’ll go to lunch with my mom, and then we’ll call you. If you’re available, we’ll come to whichever address you are currently residing. If we can help with the move, we’ll just dive in and help.”

“Okay!” replied Fr. John. “I’ll wait for your call.”

I called Sandie to tell her of the revised plans and invited her to join my mom and me for lunch. She’d already eaten but wanted to see mom (who Sandie hadn’t seen since our senior year in high school – in 1966). So my mom and I lunched, then Sandie arrived, and the three of us reminisced (as much as possible). Sandie showered my mom with loving words and affirmations, and my mother responded in kind. It was a moment…

As we finished up at the restaurant, I called Father John. “Ready or not, here we come.”

“Well, I’ve been waiting for you,” he responded. 

“You still at your old apartment, or have you moved?” 

“No, I’m still here. Where’m I going to go? My movers haven’t showed up yet!”

“Bummer! Well, we’ll be right there to visit and help.”

After a short drive in two separate vehicles, the three of us showed up at the very nice assisted living center in which Fr. John was currently residing. He was waiting for us in the lobby, and greeted us with his characteristic warmth and Irish comedy. It was good for him to finally meet my mother and vice versa.

When we got to his room, it was a mess. There was ONE BOX on the living room floor. That box was only partly filled. There were two small bags (hardly suitcases… more like a purse and a briefcase) on the floor as well. I was puzzled.

“Are you moving today?”

“Well… yes… if my help ever shows up.” 

“Who’s supposed to be helping you?”

Father John used to live and had two parishes in the area, so I knew he was surrounded by those he knew and loved. However, he just stared at me and then responded…

“Well… you!”

“Don’t tease me, Father John .”

“Tease you! Who did you think was going to move me?”

“You’ve got to be kidding! You haven’t been waiting for me to move you, have you?” I was beginning to think he was serious.

“Who else?” he responded. OMG he WAS serious…!!!

I looked around the room and said, “Well… let’s get started. What do we have to take?”

He said that most of the furniture stayed, except for the TV, a restored wooden rocking chair, and a gorgeous wooden box that he held dear. “This box was made for me by the Carmelite monks.  It’s a box for my ashes after I am cremated.” He went into a very long story about his visit to the Carmelite monastery, their wanting to give him a gift, and his asking for this handmade storage box (made of walnut, with exotic joints, a hand-glossed finish, and a cross carved on the lid). 

I began to move things to my car (which is a Pontiac Vibe with good space behind the back seat of the car). As I started the process Fr. John said, “No… I’m just kidding, Rick. Dick Bower is going to move me. But I don’t know where he is, and he’s not answering his phone. But, I would like to take you all to see my new place so you’ll know where I live. “ 

I’d already loaded the TV, the box (which I filled with whatever would fit), both pieces of luggage, and a bag or two of groceries and toiletries. We departed for his new place. Sandie went on her way back to her home. Father John drove with my mother and me in the Vibe. 

When we began our journey, the CD I’d been playing on our trip began to play. When I drive with my mother, I’ve learned to travel with CDs that play back recordings of music popular from the 40s. My mother began to sing along with the CD – which is her M.O. and the reason I bring the CDs on these trips.  Otherwise, I get these questions every five minutes or so… “Where are we?” “Where are we going?” “Who are we seeing?” “Why are we going there?” and my favorite, “How long before we get home?” When the CDs are playing, my mom’s in a world of yesterday, singing along to music that soothes her and takes her back to her days as a professional singer in the Bay Area during World War II. 

Father John was captivated by mother’s gorgeous voice. “My goodness, Mary, you can really sing!”

“I used to be a professional singer, you know.”

“NO!  Really!”

“Yes. I sang at nightclubs during the war. That’s where I met my husband, Boyd.” (Boyd is my father. He died in the early 1970s of a war-related disability. My mother is now married to a fine man, Richard – Dick – Kimble). 

“Well, I can see why he was enthralled. You sing beautifully.”

“Thank you!  I love to sing.  Why don’t you join me?”

The two of them spent the twenty-minute drive singing duets – and adding harmonies – to the recordings being played through the CD player in the car. My mom was virtually dancing in the back seat as the rhythm of a song grew compelling to her. Father John was laughing and giggling while the two of them belted out hit after hit… Until we arrived at Father John’s new housing complex.

We carried boxes, bags, and the TV set to the door. It was locked. Father John didn’t have a key.  He began pressing buttons on the intercom, looking for his friend, “Sister Noreen.” “Sister Noreen was going to meet me here. My apartment is just three doors down from hers.”

Someone answered the intercom.  “Yes?”

“This is Father John… I am moving in today, but the outside door is locked. Can you buzz me in?”

“Well… I really don’t know who you are.” She paused a moment then continued, “I don’t feel comfortable buzzing in someone I don’t know.”

“Well, I’m a friend of Sister Noreen’s and I’m moving in a few doors down from her.”

“Sister Noreen doesn’t live here (even though the intercom box said she did), so I can’t help you.” There was a click on the other end of the line, and it was clear we were disconnected. 

“Well,” said Fr. John. “Perhaps we should go back to the apartment.”

I agreed, and we began carrying the load back to the car. Just then, a woman came up the sidewalk with an official-looking gait and a suspicious look on her face. Then there was a moment of recognition. Father John and she exchanged hellos. She was able to open the door and let us in the lobby of Father John’s new complex. We walked into a lobby and I sat down with the TV.

“What now?” I asked. “Do you have a key to your apartment?”

“No, I don’t,” he said slowly, as if pondering his unfolding choices. “I guess if Sister Noreen isn’t here, we have to go back to my other place until I can get in touch with her.” I agreed and we made the trek back to the car with the bags, box, luggage, and TV. As we were pulling out of the parking lot, who should drive in but Sister Noreen! We pulled our car next to hers. 

Fr. John made introductions and, after a few minutes of conversation, I asked, “Sister Noreen, we have a few things that Fr. John would like to move into his apartment. Can you help us get into his apartment so he can deposit these things and show us around?”

Sister Noreen looked at Father John and shook her head a bit. “John!” she exclaimed, “You haven’t even filled out the application yet! You can’t move in until that’s been approved by HUD. That could take weeks if not months.” She paused a while, waiting for Father John to react. He didn’t. She continued, “Do you remember that big application you left with the other day?”

“Yes,” he responded instantly (but I doubted his memory).

“Well, fill that out and bring it back during business hours. Then someone will call you and evaluate your application.  OK?”

“Sure…” he said, and then added, “I remember right where I left it back in my apartment. I’ll go set it out now.”

When she walked away, I rolled up the windows and we began our trek back to his former/current residence. I offered to help him complete the application, and he turned down my offer. “No. It’s already done!” he said with certainty and persuasiveness.

My heart was in my stomach. I spoke to myself.  “Oh my, God! Who is taking care of this dear man? I live 200 miles away. How can I help him? Who can I call?” As I was questioning myself, the CD was restarted and the singers were lost in their duets. They couldn’t have been happier! How was this possible? 

I began to change my self-talk to God-talk. “Dear God! I don’t know what to ask you! Is this what I have to look forward to? Is this the reward for the end of a good life? Is this fair? Where are you? What are you thinking?” Frankly, the talk was more venting my confusion and anger than asking for help. 

I needed gas and pulled into a gas station. “Can you get me a diet Pepsi?” Father John asked.  I finished pumping gas and then went into the station. My mood was dark, lonely, and fearful. There, at the end of the “chip” display stood the oldest, most bent, and most toothless man I’d ever seen. He was dressed in rags and was BARELY making his body move toward the chips. It was like the last straw. It was really almost more than I could bear.

I stopped and leaned my back against the pillars that are between windows. I looked to heaven. “You’ve got to help me, Lord. I don’t get this at all. Can you show me ANY goodness in the decrepit-ness of our lives as we age!?”

I waited for a moment and got an answer! Like most prayer answers, I didn’t hear the voice of God even as I heard an answer in my own voice that I don’t feel like I created. I heard this message:

“Put yourself in a deep and beautiful wood. Look around and notice the most aged trees. See how magnificent they are. They are the tallest and broadest trees in the forest. Yet, if you look closely you will see evidence that they are nearing the end of their lives. Branches have fallen off. There are infestations of insects or fungi where the bark has been injured by storms or disease. They will look worse before they fall to the earth to be resurrected as nourishment for the next life cycle. The goodness in aging is the fullness of life… getting ready for the transition to death… and resurrection!”

That insight took about one second to play out in my mind. “It is what it is” was the cliché that entered my mind next. “It is what it is…”

When I reentered the car I noticed that the CD was not playing, but the singing was continuing without accompaniment. Father John’s Irish tenor was leading now. “Oh, Danny boy, the pipes, the pipes are calling…From glen to glen, and down the mountain side…  The summer’s gone, and all the flowers are dying; ‘Tis you, ‘tis you… must go and I must bide…”

I got two answers to the same prayer…

And then I noticed… these two demented souls were IN JOY. They were happy, singing, and seemingly in the most beautiful moment. I joined their singing… and noticed that this moment was full of other joys that I had been neglecting in my despair. The trees; the tall, dead grasses along the side of the road; the breaking sunshine; the singing; and all the beauty I let myself see on my way back to my mother’s (after I dropped off Father John) gave me the sense that every “thing” is alive and singing… to be enjoyed while we let ourselves be in joy… Not avoiding the reality of life, but embracing it in all its mystery and goodness… even as we acknowledge that the unfolding of life is not within our control. 

Mysteriously, and without real explanation, my drive home was joyful… perhaps more joyful than any moments I’ve had since leukemia threatened my existence.  Mom and I sang and talked.  But, mostly we rode quietly – she humming the tunes on the CD – while I noticed how beautiful everything is.  The road was winding through farms, past lakes, through woods, and quiet, dusty, small towns whose names I’d never heard before.  For some ineffable reason I simply felt ‘one’ with everything that is, was, and ever will be.  No matter how the journey turns, or where the journey takes us, there is joy hidden in the midst of what could look like a rotting tree.

I sing this song with new meaning (and revised lyrics): “Oh, Mother dear, the pipes, the pipes are calling…From glen to glen, and down the mountain side…  The summer’s gone, and all the flowers are dying; ‘Tis you, ‘tis you… must go and I must bide…”

My Mother Has Dementia by Rick Benedict ©

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[i] Davidson, S. My Mother’s Case of ‘Pleasant Dementia’: She lost her memory but gained a kind of inner peace.  After years of worry and fear, so did I.  Newsweek; 9/22/08; pp 62-63.