Time goes by

I don't know why I thought it might get easier. It seemed like maybe I would get used to some of the routine or accept her condition or something. But it only seems harder.

I did visit several weeks ago. It was quick and unscheduled. We are fast approaching a crossroads...both in the sense of a decision making point and in the sense of a road with crosses on it. Her long term care insurance ran out in January. The funds are running dry. The Birches is the Versailles of care as far as I'm concerned. Everything about it is wonderful. But it is private. Paupers don't live in Versailles, and one of the many horrible things about both this disease and our overall health care system is that it will strip you of every material resource as well as every mental and emotional one.

So she will have to move. My last visit with Mother was with my brother as we met primarily to visit another place nearby that had a bed open. With The Birches fresh in our memory, visiting the other place and seeing the open bed felt like staring into a prison cell.

But back to the visit with Mother. I had presented an award for the Bible Society at a ceremony that morning, so I was dressed up--a bright red dress with a white yoke. We sat with Mother as she finished her lunch. My brother and I chatted. We each asked Mother different questions...no response. Then, just before we left, Mother looked across the table and said, "That's very pretty." It was a rare lucid moment and the only words she spoke the entire visit.

It was a gift in some way--to hear something relevant come out of her lips--to hear her say anything at all really. But it was also heart-wrenching to hear that she is still capable of recognizing beauty when the new place we were looking at was lifeless and gray. There are so many twists of the knife in this journey. So many deep disparities between the haves and the have-nots. It reminds me of a game of Chutes and Ladders, although there are far more chutes than ladders.

Today I went to a funeral. I had never met the woman, but she was the wife of my predecessor at the Bible Society, so I went as a representative and to be supportive of him. She had Alzheimer's. A ten year journey. The service was packed and lovely and long and several times I thought I would have to run out of the room and sob.

Of course I felt for the bereaved husband in losing his wife of 42 years. But it was much more than that. It was attending my mother's funeral--both glad it wasn't hers but on the other hand wishing it was. About five different people got up and spoke, including her husband, who talked beautifully about the irony of being the "guardian" for someone who really had been his guardian and a guardian for others in so many ways.

As they described the grace of the deceased when faced with such a cruel disease, my mother was right there. And I fought back the tears again and again. And of course it was about me, too. Probably it always is tinged with concern for myself. Fears that I will follow in my mother's footsteps. So it was difficult to hear of the devoted husband who cared for her. The children who surrounded her. I will most likely be on my own--me and my long term care insurance. The gray prison cell loomed large. Self-pity is really a crippling thing, you know. I don't recommend it.

Called

I wasn't planning to visit. The weekend was very busy with every day already including four or five hours of driving. It would have been my only day at home. But in my bedroom is a picture of Mother from her college days. Her bright, beautiful face smiles down on me from atop my dresser. Here she is in 1954.


She called to me from that picture. Not in a way I could audibly hear, of course, but in a very real way nonetheless. She called for me to visit. And it kept coming in wave after wave.

So, I decided I would take the only day I would have been home and add four hours of driving to make the trip. But first I called my brother, Rob. He and his wife have moved to Vermont and are now a bit over three hours away from me. But he's still only about an hour away from Mother. So we planned to meet at The Birches.

We did. Mother was finishing up lunch when we arrived, and Rob helped her eat the pecan pie that was sitting untouched in front of her. She didn't really show any recognition of us or say anything. We decided it was an off day for her.

As she fussed with her glasses which slide down her nose, we wondered together how a doctor would be able to determine if she still had the right prescription for her glasses. Certainly she couldn't make any of the verbal responses needed for an eye test.

As she finished, the aide came to take her for toileting and Rob and I went back with her to her room. All I can say of the rest of the visit is that she was present. Rob and I had a great visit with each other as she napped.

So I went home wondering about the calling from the picture. Was it just my own guilt speaking because it had been a few weeks since my last visit? Did she reach out in some way when her mind was more alert and by the time I arrived she had retreated into the fog? Did she know more of our visit than she showed? Perhaps her own calling as a mother made her aware that Rob and I were more separated by distance and she wanted to bring her children back together.

I can't say, and probably it doesn't matter. I felt her calling and I went and the inscrutable purposes of the call were somehow fulfilled. Or maybe I just need a good therapist!

The Last Noel

I'm not sure how many more Christmases like this I can handle.

Today was actually my second December visit. The first was for the annual Christmas party that The Birches throws for residents and their friends and families. This year was scaled back from the previous two and initially I blamed that for Mother's almost complete lack of engagement. Unlike the prior two years, the Christmas carols did not evoke a single glimmer of recognition. But then this year they started playing them later, and we were headed down to have a family picture taken before she really had a chance to engage. Or so I said to myself. It was a non-event, and so I didn't write about it.

Like last year, some of our extended family was planning to visit on the 26th, and since this year I live an hour further away, I decided not to go up two days in a row. I spent Christmas with my brother and his wife and then we all went to Concord for lunch with the others today. I also brought my dog, Ruckus, for the first time.

Mother was there, but it's hard to say much more. She ate, but only when hand-fed. The presents brought no sign of even a remote interest, even with the Santa bag with the microchip that had Santa saying "Ho! Ho! Ho! Merry Christmas." Not a word, not a smile...a slight bit of interest in the tissue paper. She still lists considerably to the right...something I've noticed since that day I found her slumped over in her chair. My mother, who taught me the love of all living things, did not even seem to notice a 70 lb. dog sniffing her hand.

And so we ate, and the rest of us had conversation and got caught up on each other's lives. Then it was time to get her back to her room for a nap and hit the road. My cousin, Marek, had brought his guitar so we could sing some carols. We got Mother lying down on her bed and then we started singing. Mother's eyes were open, but other than that, there was no sign from her that anyone else was in the room or anything else was happening.

We began with The First Noel. No response. No lips moving. Mother's hand was up by her face, her head turned away from the music, her whole body still listing right. It almost looked like she was sucking her thumb, and I began to wonder if the tilting of her body was the beginning of the fetal position where so many Alzheimer's patients seem to end up.

When she didn't respond at all to the carol, her sister Judy began to tear up and left the room. Of course that began to put me over as well, but we soldiered on, not quite sure why we sang but sure that it was necessary. We did carol after carol...Joy to the World, Angels We Have Heard on High, Away in a Manger...every verse. Mother didn't move.

It came time to leave. I gave her a kiss goodbye and again, looked straight into her eyes and said, "I love you." "Thank you" she said. And she smiled.

On my drive home, I wrote some lyrics for a song. The tune and other verses have yet to be written, but here's the chorus:

Oh, I'll remember for you
When the mist begins to fall,
When my name becomes a mystery,
And my face you can't recall.

When it's Christmastime around you,
But you cannot hear the bells
I will sing the carols for you
'Til they play the last Noel.

Thanksgiving

I actually wrote about my Thanksgiving visit in the weekly e-mail devotion/podcast that I produce called SpiritWalkers (visit www.annerobertson.com/poddevotions.html to subscribe) so I'm just going to paste that in here.

Ecclesiastes 3:1 “To everything there is a season, and a time for every purpose under heaven.’”

There are lots of seasons going on these days. In New England, we are always aware of the seasons of the earth. We get four distinct seasons, even if sometimes winter pokes its head in to see what early fall is like or summer tries to test its rays on an early spring crocus. Which reminds me that even though fall is about to give way to winter, it is planting season. If I am to enjoy a harvest of spring crocuses, tulips and daffodils, I have got to get those bulbs in the ground now, even though it’s only 40 degrees outside.

It is also the holiday season, with its excesses of food, spending, and parties bumping up against the church season of Advent that tries with an ever-weakened voice to shout, “Wait! Wait!” With the season of holidays comes the season of family with the dramatic highs and lows that come from Hallmark-card expectations. Sometimes the holidays are filled with warmth and joy. But at our Thanksgiving dinner at the nursing home, where my mother fades away into the fog of Alzheimer’s, we could only escape into the warmth and joy of holidays past.

Every person at the table had endured much. There was my stepfather and his daughter, who already had lost a wife and mother to cancer, now bearing the weight of my mother’s illness and care. There was the woman and her two teenage sons who have been part of my extended family for decades. Her husband was family also, until that day in 2003 when the oldest boy came home and found his father hanging in a tree. My brother and his wife were in Missouri on a job. I was there missing my father, who has been gone 27 years now and wondering if my mother even knew it was Thanksgiving. And of course there was my mother. The honest laughter came only from the stories of days gone by, and I came to understand why someone would write a song called, “Thanks for the Memories.”

That’s why I love this famous passage from Ecclesiastes. In beautiful poetry, it reminds us of the same truth that God wove into the very fabric of Creation. To everything there is a season. Life is cyclical, not linear. We live through seasons—seasons that both fade and return. Some seasons bless us with warmth and harvest; some seasons challenge us to work or to courage, and we will experience them all, again and again.

In the Crayola splendor of fall as I bite into a Honey Crisp apple fresh from the tree, I don’t really want to think about winter’s howling nor’easters and walking the dog in the biting cold, although I know they will come. But after shoveling the third March snowstorm, when my bank account is groaning from the heating bills, the promise of Spring is my lifeline. Wasn’t that breeze just a bit warmer? Didn’t that rain smell a bit different? Is it coming now? Is that…why, yes it is a crocus poking up through the snow!

When the winters of life come, Ecclesiastes reminds me that the time to weep, to mourn, to lose…the time for war, for killing, for hating…is but for a season. There is also the promise of other seasons waiting in the wings—the time to heal, to keep, to embrace…to love, to build up, a time for peace.

Oddly enough, the 20 crocuses I planted yesterday need the winter. They can’t just be planted as happy flowers on a warm spring day. They go in the ground just in time for the hard, frozen ground to come, which gives them what they need to bloom. Winter is a season. There is a time and purpose for it, just as there is a time for spring and a time for every purpose under heaven.

A Glimpse

I am again behind in my postings. It's been busy, but as I think I've said before, it becomes harder and harder to write. Emotionally it pulls everything out of me to go back into the experience, even if it hasn't been a particularly interesting visit. But I guess that's what therapy is about, and that's what this blog is for me.

So I went up to the Birches the first week in November. I was preaching in the next town over and had an all out battle with myself about stopping in for a visit. The voice on one side was aghast that I would even consider NOT going to see my own mother when I was so close. What sort of a waste of space was I to not give her that much? That side made me tell a whole bunch of people at church that I was on my way to see her in order to reinforce the idea.

The other side pleaded the cause of my sanity. Even though it was only 1 pm, I had been up since 3:45 that morning to drive all the way up there for their multiple services. With two services and a dinner at the church I had already expended a lot of emotional energy and had to drive almost three hours home still. Seeing my mother was always so draining. My legs didn't think they could walk in there. She wouldn't know anyway. I was so tired.

I got in the car still not knowing what I would do. In the end, I agreed with my first self, that couldn't live with my other self if I drove by. Since I don't want schizophrenia in my future, I decided to keep the peace and stop in, tired as I was.

When I got up to her floor, everyone was gathered in the Great Room for a concert. Students from a nearby college had come to play their instruments...little solo numbers they did one at a time. There was a piano, a violin, a clarinet, a saxophone, and a flute. They were actually quite good, playing a segment of a concerto or sonata for their instrument.

Mother was a musician. She played oboe, which is about the hardest instrument in the orchestra. She also played a bit of piano and she could follow the alto line pretty well in a choir. So here was a musician, who taught young people for a living, listening to some pretty good music played by youth.

She wasn't paying the first bit of attention, at least not in the way you would normally judge body language. She was fiddling with her fingernails and the crease in her pants. Lots of others around me said hello and acknowledged my presence in any number of friendly ways. Mother fiddled with her fingernails and the crease in her pants, even as I gave her a kiss and others moved around to accommodate another chair.

At the end of the concert I took her back to her room. To get home before I fell asleep at the wheel I really did have to go. She had been yawning during a good bit of the concert, so I brought her to the bed. With the arthritis and other issues she has now, I couldn't get her to a lying down position by myself, so I decided to search for an aide on my way out.

But before leaving, I gave her another kiss and a hug. I stroked her hair a bit and she looked at me. "I love you," I said. And there it was. Her. Mother. She was in there, behind those eyes. At the words of love, the woman roaming aimelessly through useless gray matter came out from behind a synapse to make a connection. It was brief...maybe a second or two, but she was there. I saw her. And both sides of me went home satisfied.

Good Day

I have actually visited twice since my last post...not enough, but there you go. This was a picture I took with my phone on the first of those visits.

This was a re-adjustment of her position. When I first came in to the room she was slumped over the chair to her right with her hands both down on the floor under the window and her head not far from the same. I thought she had passed out or was dead or something.

As it turned out, she was fine. And she wasn't down there by accident. Her yearbooks (she taught at Coventry High School in Coventry, RI for almost 40 years) were for some strange reason stacked down there...behind the shelves on the floor under the window. They were very neatly placed and she was leaning over there looking at them.

I suggested that maybe looking at them on her lap would be a bit more comfortable but she didn't seem inclined to budge. Convinced that if she stayed that way much longer they could display her in a circus, I pulled her up and got her to the position you see above. For the rest of the day she listed right.

Other than that, the visit was uneventful. I gave her the news--told her I'd signed a contract for my third book. She fiddled with the yearbook pages. I prayed with her before leaving, but she showed no sign of recognizing the act.

Here's another picture of Mother...this one from long ago.

Mother has always loved animals--she gave that to me--and I'm guessing that, for her, this day somewhere in the late 1930's was a good day. When I arrived for my second visit, one of the aides greeted me, as she was just getting Mother up from the lunch table. "She's having a good day," the aide said, "she fed herself." I swallowed hard.

Probably some day back in her childhood...well before the pony picture...someone rejoiced in the day little Joan could feed herself. She had a good day and was making progress. As she grew, the definition of "good day" grew as well. There were fun days when a poor girl raised by her great-grandmother could get to ride a pony. There was the day she was named Valedictorian of her high school class and the day she learned she was accepted to Pembroke (the women's arm of Brown University). There was her 1954 wedding to my father, and I hope that on the Mother's Day when she entered the hospital to give birth to yours truly she considered that a good day as well. Although probably the birth of my brother was better, since her labor then lasted only two hours!

As she went through a lifetime of personal and professional joys and accomplishments, who knew that on a warm October day in her 75th year someone would feel compelled to highlight a day she could feed herself? It's jarring.

Of course, like most things with this disease, it's jarring because it gives voice to my own demons. What are the "good days" of my future? Will someone one day praise my ability to stand upright or blink my eyes or have food run successfully through the digestive process? It gives me pause.

The irony and sole comfort is that however diminished the notion of a "good day" becomes, we all do have one last hurrah...the goodest of all good days that no indignity of age, accident or disease can steal away. There will come a day when God will, as the old hymn says, "lead us from night to never-ending day." Or at least I think so. And if I'm wrong, I won't know the difference.

But I do believe that the end of suffering is a good day and that sometimes the Grim Reaper appears more like a jovial stable master with a pony, inviting us to climb on and trot away to new adventures. Whether that good day comes soon or late, Mother and I will both climb into that saddle with joy.

Too long

It has been way too long since I last visited my mother. I did visit once since my last post, but I find it harder and harder to re-live the visits in my posting. I read to her from the Bible on my last visit. No sign of recognition. I did the 23rd Psalm, which she recited from memory at her father's funeral in 2004. Nothing.

It's a broken record. If anybody even knows what broken records are anymore. I want to be with her. But I don't want to go see her. I don't want to leave, but it is more unbearable to stay. And so next week I am going to Florida and it will be even longer before I see her again. Probably not until the second week in September. Guilt, guilt.

The logistics are daunting...five hours of driving, timed to arrive in the few hours when she is not asleep or eating. She eats ever more slowly--not quite sure what to do with a fork anymore. Although I had a call today from my Aunt who said she had been to see her and they had gone out for ice cream. So that seems like a considerable improvement. It didn't seem to me like her mobility would allow for that anymore. I don't know.

I do know that it feels like a "damned if you do, damned if you don't" kind of situation. And I find that I hope God will not require her to exist in such a way to anything like her parents' ages. That's probably as much selfishness on my part as it is concern for her. Life's emotions are always complex. Perhaps she inhabits some happy little world to which the rest of us are oblivious, much as I often inhabit virtual worlds. If so, it doesn't show on her face.

Many Meetings

I haven't been as delinquent a daughter as my lack of recent postings would indicate. I've been up to The Birches 5-6 times since my last post, but with changing jobs, lifestyles, and moving, I just haven't written about it.

In that time, the visits started very bad and then got better. The earliest visit was a couple of weeks before Easter. I found Mother in the activity room, which was crowded with both residents and relatives as a guest performer led the residents in some singing and handed out rhythm instruments.

I went over and greeted her with a kiss, but she didn't even acknowledge me. Another woman in the room did, however. She came quickly over, stood next to me, looked me in the eye and puckered her lips. I gave her a kiss. She beamed, took my hand, and said that she loved me. Who she thought I was, I'll never know. It struck me that in this mixed up world of Alzheimer's, you take whatever friends and relatives come along, whether they are yours or not. And you love them.

That day my own mother was simply not engaged. When the rhythm instruments came around, I took a long plastic tube for myself and also one for her. I tried to get her to bang it on the side of her chair as others were doing. Nothing. I took her hand and did it with her. Nothing. She did hold it and I hit my tube against hers, but she did nothing on her own.

Some of the staff came to her after the program and managed to get a smile out of her, but I got nothing. She wouldn't even look at me. It was a very hard day.

The following Sunday (Palm Sunday) I came home from church to a phone message from The Birches. They had taken Mother to the emergency room. In the night they heard her scream, went in and found her legs out straight and foaming a bit at the mouth. She was conscious but unresponsive. Of course on a Sunday morning they couldn't get hold of either David or me, and I was the first one back.

So I went tearing up to the Concord hospital and found her in the ER. She was responding a bit by then, but not all that much. Long story short--she had a severe urinary tract infection. They kept her at the hospital several days. It's so hard to diagnose a patient with Alzheimer's. The new symptoms could just be a new stage of the disease. Or it could be something else. But the patient can't explain what hurts and what doesn't or help in any way to sort it all out.

With the craziness of Easter and me packing to move two days later, I knew I wasn't going to get up on Easter day. So I went back up on Good Friday. She was back at the Birches by then. She was up eating breakfast. It was almost noon. They said she had been pretty stiff that morning and it took quite a while to get her up, but that she had been able to feed herself a bit. She was still working on her waffles. She took a couple of bites on her own and I fed her some.

The next two gatherings were larger family groups. All our birthdays are clustered in April and May, so we gathered in April to celebrate the April birthdays and then this past Sunday for Mother's Day and the May birthdays, which includes Mother on both counts.

She seemed much, much better on Mother's Day. She looked less like a bag lady zombie and more like my mother. And she smiled. And she seemed pleased to see me. And she payed attention to what people were saying.

It was hard to tell if it was her or me. My life changed significantly from April to May. A new job, a new house. Now it takes me almost three hours to get to the Birches and two just to commute one way to my job. But I am so much happier. So I couldn't sort out whether Mother seemed so much better simply because I was so much better or if she really had improved.

And I thought how much attitude and dis-ease has to do with just about everything. What we feel on the inside comes out. When Mother was wracked with infection she couldn't respond to much. And when I thought her unresponsiveness was the progression of the disease or somehow about me, I was too depressed myself to lift her spirits. When my own mood lifted; when her infection was cured; things looked very different for both of us. That's not exactly a new revelation to the world, but it's hard to see when you're caught up in it.