AK Reader: Dementia, or Getting lost with Mom (2008)

On this Father’s Day, I share another notation from the universal journey of working with one’s own parents as they move towards the dying process. Written for SageWoman in 2008, when Dad was 92 and Mom 89, they each lived on until the age of 96. Much more about both their processes and our family’s involvement documented in The Grieving Time.

Ben and Renee on their honeymoon, early 1942.

Dementia, or: Getting Lost with Mom (2008)

by Ann Kreilkamp

This is the story of a journey that, looking forward, I dreaded, and in hindsight, feels miraculous.

The plan was to go to Seattle and live for one week with my parents in their “continuing care” retirement community on Mercer Island. I would attend ot their daily needs, squire Mom about, and try not to fidget in the airless little apartment. While parading slowly to dinner we would exchange cheerful anonymous hellos with other revolving white-hairs and pass by the bulletin board, its latest funeral notices. Who would take that one’s place? Whose final reckoning would also lead to this handsome, well-run, lakeside facility and its programs, tours, concerts, bridge, holiday parties, and one meal a day — while waiting to die?

My perspective was, as you might guess, jaundiced. I was only going because my sister Paula in Baton Rouge had casually suggested that I might think about spending a week with them. She had just returned from a month-long visit, where she made their meals and did their dishes and slowly walked our 89-year-old mother around the beautiful grounds admiring flowers and birds.

Her suggestion came as a shock. Huh? Me, alone with the folks for a whole week? As the still skittish former black sheep, I stay with one of my sisters during Seattle family gatherings.

Even so, I found my strong reaction to Paula’s suggestion puzzling — until I realized that it felt like both an invitation and a benediction. She trusted me with the parents’ welfare. She was inviting me to take my place, once again, within the family circle.

But what place? What could I, the eldest child, possibly have to offer, given my role as rebel in our strict German Catholic household with the biblical patriarch Father and the mother who, until very recently, I had dismissed as a “cipher,” not there?

I hoped my trip would be an exercise in patience and compassion. I prayed to angels of my higher nature that years of “practicing the presence” would help me wake up, time after time, in the midst of boredom — and breathe. Return to the Now. Feel the life force coursing through my body and let go the busy mind that secretly judges and counts days and hours until release from the parental prison.

Over the past several years Mom has been gradually losing her short-term memory. Dad still mentally sharp, takes care of her. Sometimes they will walk together around the grounds, but his sciatica bothers him.

Four of my sisters live nearby. Kris, the youngest, considers herself privileged to help them, and visits several times a week. The other three take responsibility at varying levels. Our two brothers, one of them near Spokane and the other in Anchrorage, stop in periodically. Paula had just given them a month.

I would do my part.

Here, with very few changes, is the report I sent my siblings.

_____

To all my wonderful brothers and sisters,

I suspect that those of you with whom I did not have some kind of conversation while in Seattle wonder how it went. Dad kept saying, “Fine, fine,” to those who asked in my presence. But what did that mean?

I’m here to tell you that it really did go fine, and that I hold memories from that precious time close to my heart.

Paula, I thank you for your suggestion that I spend a week with them. On some unconscious level, you gave me permission to both stay with them and be trusted to “not make things worse.”

I’ve long realized that my 30-year polarization with Dad was painful for everyone. And even though I had assumed that he and I “worked it through” years ago, in the past year or so I’ve noticed some animosity from him, and attributed it to his back pain. Now that I’ve lived with them for a week, I recognize his crankiness and short temper as symptoms of his grieving process as he valiantly shoulders more and more daily responsibility for his life partner during the slow dissolution of her personality.

I didn’t know what to expect when I arrived, and had been feeling quite nervous. I think he did too, for when he crossed the street to greet me as I got out of the rental car at around 9 PM on March 5 he started talking fast and couldn’t seem to meet my eyes. I found myself opening my arms wide to him with no words, and I think he felt grateful for that.

When I look back on that week now, indeed, even within a day of my arrival, it felt as if the situation was uncannily choreographed. I kept finding myself saying things that I did not know would pop out of my mouth, much to our surprise, and realized later that each conversation seemed to be a set-up for the one that followed. It was as if I entered with a backstory that had to be filled in before we could move forward.

Mom was, of course, glad to see one of her children, and shuffled slowly to greet me at the door. She looked frail and wan, and seemed to have “gone downhill” quite a bit since last August, when my son’s family and I lunched with them during their trip to the west coast.

The first thing that popped out of me came that very evening, when I mentioned a remark that John Bailey had made in Iris, a book that recounted the final years with his wife, the British novelist and philosopher Iris Murdoch, as she moved through dementia. I don’t have the exact words, but it’s something like, “Iris’s mind may be gone, but she’s not gone. Iris is still here, still the same woman that I feel in love with so long ago.” The remark had struck me forcefully when I read it; Bayley so clearly identified and valued, felt connected to, an iris beneath (in her case, famously brilliant) mind. Indeed, I got the impression that the Iris he loved was not her mind.

The next morning, just prior to breakfast — which I fixed, but failed to get their usual cereal, o.j., coffee, and half and half on the table at the same time, so one or the other would diplomatically get up to retrieve what I had forgotten — I asked Mom what she wanted to eat and she just looked at me, sort of weary and perplexed. What popped out that time was, “Oh I can just see you, standing above all this, wondering why people still eat? What’s the point of eating? Why eat one thing rather than another?” Of course I laughed when I said it, and they sort of laughed, but the remark unsettled everybody — in a glancing way, since my own energy level kept the situation moving more quickly than they are used to.

Later that first morning, when Mom looked bewildered about something that she was supposed to find, I made a similar observation about objects: “I can just see you, above it all, looking down on we who are still dealing with objects, moving objects around, taking this one, getting that one, looking at them, valuing them, discarding them. All this business about objects. So silly, eh?” Something like that. Again they both looked nonplussed.

After breakfast, Dad got up and started to clear the table, which I humorously objected to, saying that’s why I was there, to help them. That I had asked Paula to send me what she remembered of their daily schedule so I could pick up where she left off.

He responded, also with humor, that he’d work with me the first day to make sure I knew what to do, where things go, and that after that I could take over.

As luck would have it, the sofa bed for their guest room was due to arrive that morning, so Dad and I could look forward to a mutual project — a third thing to mediate between us and ease the awkwardness.

Together we unboxed the sofa bed; together we figured out where the legs screwed in, each of us taking direction from the other when one of us got stuck. (It was trickier than it looked.)

Afterwards, Mom came to me and said, in a low voice, “Shall we go out to lunch?” I thought that a great idea, and went to find Dad who was in the kitchen, smearing mayo on white bread for the usual lunchtime sausage and cheese sandwiches. With Mom standing timidly by, I said to his big broad back, “Dad, Mom and I are going out to lunch.” (I hadn’t seen what he was doing in the kitchen.) Without turning around, he said, “Oh no you’re not. I’m fixing three sandwiches, see? We can eat right here.”

With Mom still witnessing from behind me, I again said to his broad back, in the same tone as before (surprising myself at how easy I felt with this, how casual, not worked up as I would have been in the past), “No Dad, Mom and I are going out to lunch, and you get to stay here, in your hermitage.”

Again, he replied, in the same way, with his back to me, busily fixing sandwiches. “No, we’re eating here, I’ve already fixed the sandwiches.”

Again I replied in the same tone, the same thing. And this time, he caught himself, right inside his cranky, grumpy, commanding tone; he caught himself and turned his large frame around to face his smallest daughter, looming over me in that tiny kitchen, and said in what seemed a half humorous, half menacing tone, “No you’re not — because I’m bigger and stronger than you are!”

The tension broken, we all laughed.

Kris tells me that Dad has sometimes done this with her, too, catching himself in his meanie act and using humor to change the mood. Pretty amazing for a 92-year-old alpha male.

As Mom and I walked out the door, he said to me in a low voice, “I do appreciate the other,” which I took to mean our lunch out giving him time to himself.

That was the first of a number of lunches out for Mom and me, and each day we’d also run one errand. That first day we were to buy a mattress pad for the new bed. For this Mom thought we should go to Bellevue Square. Dad gave me directions on how to get to Bellevue, and I assumed Mom could lead me from there. I think she assumed she could too, but soon got disoriented. “Oh Ann, this is awful!” she wailed as I drove miles past our intended destination. I put my hand on her knee, saying, “Hey, it’s okay Mom, we’ll find it, and besides, it’s fun to get lost. You shoud see how many times I get lost! And remember there are always options. You’re never really stuck.”

I was attempting to calm her fear and panic, with little success. Finally we saw two women out for a walk and stopped for directions.

This first occasion of “getting lost” (three in all over the week) helped start a discussion about what was going on inside her. At some point soon after this, I asked, out of the blue, “What does it feel like inside your mind?” And after a slight hesitation she pronounced, with unusual animation, “Empty.”

I was flying by the seat of my pants here, and once again, something popped out. “Empty? Wow! Do you realize that this is what many of us are trying to achieve? I’ve been working on letting go of all the silly stuff that’s in my mind for years! This is what meditation is all about.” I went on for some time in that vein, her sitting beside me in the car as we drove, energy level up, way up. First the panic brought it up, and now this surprising take on her situation seemed to be re-calibrating her entire system.

As we sat at a little sidewalk cafe eating good thick soup (I ate most of hers), she suddenly looked up and said, with unusual focus and intent, completely present and open: “I really appreciate being with you. I feel comfortable being with you. Because you understand me, you accept me, and you don’t judge me . . . I can feel a lot of people talking about me behind my back.”

I was so moved by this direct, sustained connection! So rare, in my experience of her at any age. So very moved that I said to her, full of feeling, “I am honored to be with you during this time. During this time when your personality, held together by memories, is thinning, dissolving, so that your real self, your real essence or nature, is shining through. So very honored. You are becoming what I always wanted to be. You are letting go of that which society teaches us, to value oruselves only for our minds, and the roles we play, our ‘identities.’ It feels wonderful to be with you as you move into your original nature.” Something like that.

That conversation set the tone. For the next six days, now that I understood the nature and purpose of my visit, I utilized every opportunity to reinforce that perspective, and help her not only come to terms with what is happening, but to value the direction in which she is moving, both for herself and for her gift to the rest of us.

On our return we again got lost. I didn’t have a Mercer Island map in the car, and realized later that we had been driving for 30 minutes on the west side of the island rather than the east side as she descended deeper into panic, directing me one way then another, with me following all her directions and laughing when they didn’t pan out while trying to ease her fear, saying, hey, I love to get lost, I’m always getting lost, and would certainly rather be lost on the island than somewhere in downtown Seattle! Her body tense and contracted, she kept sighing and saying how awful it ws to not know where she was. The confusion deepened. “Where do I live now?” she asked plaintively, several times, minutes apart. Sobered by her plight, I responded, softly, “Covenant Shores.”

I used this occasion to speak about her fear, and panic, and how they were making it worse for her. I soothed her by saying that she would never be alone, and that all she had to do was to relax and trust her companion. I asked her to slow down her breathing, and to breathe deeply.

The next day, we got lost trying to find the Mercer Island library. Again, 30 minutes. This time we were both laughing. And she exclaimed, several times, out of the blue: “I trust you. I trust you completely. Because no matter what happens, you always land on your feet!”

I found these three experiences of getting lost with Mom a terrific metaphor for the disorientation and confusion that she undergoes as her various types of memories dissolves. I also found it interesting in view of what happened that first morning, before the bed arrived.

She and I had been sitting at the dining room table with my computer. I was questioning her about her life and transcribing her responses. Besides historical questions, I was asking her things like, “What was easy for you when you were small, what was hard?” Almost immediately she mentioned being left-handed in a right-handed world, and made to write with her right hand. Later, I spoke to her of that original disorientation as closely related to her current disorientation.

I mentioned her left-handedness to Dad the next day at breakfast, and asked her to repeat for him how it made her feel to be singled out early on as “different” (thus, in her mind, “wrong,” “bad”). I hoped that he would pick up on how it affected her emotionally back then (and not just how it led to her “trick” of mirror writing). He did seem to listen to her more closely than usual. (I sense that he treats most of what she says as if coming from a child, treating her like a child. And now she was saying to him, in the voice of her original nature, what it was like to be that child.)

At one point, after hearing a lot of childhood stories, I said to her, “You know? It seems like much of what you say can be grouped into two themes: fear, and the need to learn how to be alone.” She agreed, said that her older sisters got to have a big room together in front of the house and she had to live in the small back bedroom by herself.

By naming these two overall themes, I realized later that I was attempting to help her to begin to look at her life as a whole, to get some perspective on what she has been doing here, and what she still needed to do. Fear and in particular, fear of being alone, are now front and center as she works with the loss of her memories. And yet, of course, this is precisely the time in her life when we must not leave her alone.

By the way, I really enjoy the fact that Mom is now much more physically oriented, holding on as we walk to the car or to meals, or around the grounds. I think that holding on to someone is really good for her, helps her orient and stay present in her body. It makes me wonder about the focus on getting her a walker. I realize that she will need it at some point to move from room to room, but feel that when she is out, due to periods of sudden disorientation, she should always have someone with her, and why not hold on to that person as they walk? I even worry about her getting lost in the building they live in when she takes out the trash. Which brings me to the next part of the story of my week.

On the third day, I was doing yoga/chi kung/tai chi in the early morning in one room with the door closed. I overheard her ask him something, and then his answer, instructing her to “go down the hallway, turn left, go through a door, turn right” — something like that. I instinctively stuck my head out the door and said, “How about if I accompany you?” Dad turned and said, harshly, “I need to have her do as much as she can for herself, independently, for as long as possible, to keep her self-worth.”

I quietly closed the door again, taken aback by his attitude, his tone and his talk of her “self-worth” in front of her, and also feeling doubt about my role there. I berated myself for coming in from the outside to a situation where he’d been dealing with it on a daily basis for years, and thinking I could tell him what was best! I wondered if I should shut up completely.

Just then Dad came into the room, Mom having gone outside after his instructions.

Speaking in a less harsh tone (he evidently felt bad for barking at me), he repeated what he had said in her presence. I said that I could certainly appreciate what he was going through with her, how hard it must be, and then asked, “And may I say something here?” I was surprised at how quickly, even eagerly, he said, “Yes, go ahead!”

“On our lunch together and our errand yesterday,” I told him, “I’ve been working with Mom to help her locate her self-worth below her mind.”

“What? What do you mean?” My statement obviously shocked him. But it also seemed to open him. As if he was looking for another way to see the situation.

I told him that it seemed to me that as her personality, normally held together by memory, was dissolving, it opened the door for her nature, her essence, her soul, or whatever you want to call it, to come forward. That the veils hiding her real, original self were disappearing, and that I felt honored, even privileged, to be with her during this time.

He was stunned. And obviously grateful. “That’s a great idea, a good way to look at it!” We all know that Dad has always seen people in term sof soul and personality, and values the soul over the personality; he just hadn’t applied his theology to this real life situation with his own wife.

It often takes someone coming in from the outside to point out the obvious. I’m so glad I could offer this perspective as part of what I can do during this time when so many of you bear the long-term daily burden.

Later that same morning, when I was getting ready to go on my walk and Mom was at the hairdresser’s, I gain felt moved to speak with Dad, though with no idea what I was going to say. I went to where he was sitting sprawled in his recliner, and for some reason felt moved to hold his big toes as I again referred to the dissolution of the personality as not only a loss, but as an opening to something much larger. That Mom is way bigger than her mind; that her real nature is beginning to shine through and I feel so honored. And I acknowledged the great and continuing sorrow he is feeling as he loses contact with her old familiar persona, and what a great job he’s doing with her, how patient and steadfast he is. His eyes welled up with tears as he strove without succeeding to contain the extreme emotion on his face.

So that’s what I was up to in Seattle, helping to stimulate a paradigm shift in our perspective on Mom’s continuing changes, from focus on loss of the small self to a focus on opening to the larger self. I feel that this shift has the capacity not only to benefit her, and him, but all of us.

By the final evening, when the three of us went out to a pub for dinner, he and I had a theological discussion in which I baited him humorously, saying I hoped he wouldn’t think I was going to hell for believing in a God that was in the world rather than above it. And it was good, he didn’t take the bait; said that I was welcome to my perspective, but that he “prefers” to think of God as separate . . . We agreed that neither of us could prove anything. That it’s all very mysterious.

I end this with a request that those of you with whom I have not talked personally ponder what I’m saying in this letter, and that hopefully we can all be on the same page as we work to help both Mom and Dad in this immense, very precious passage that they have now embarked upon.

 

 

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