Mondays With Mother: An Alzheimer's Story

Time goes by

Anne Robertson — Tue, 06 May 2008 01:58:00 +0000

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

Anne Robertson — Sat, 23 Feb 2008 14:04:00 +0000

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

Anne Robertson — Wed, 26 Dec 2007 23:17:00 +0000

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

Anne Robertson — Tue, 04 Dec 2007 14:36:00 +0000

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

Anne Robertson — Tue, 04 Dec 2007 14:11:00 +0000

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

Anne Robertson — Sun, 28 Oct 2007 20:51:00 +0000

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

Anne Robertson — Sat, 25 Aug 2007 21:20:00 +0000

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

Anne Robertson — Thu, 17 May 2007 17:55:00 +0000

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.

Harvey

Anne Robertson — Wed, 14 Feb 2007 02:06:00 +0000

Finally, in keeping with the title of this blog, I visited on a Monday!

I arrived mid-afternoon and Mother was seated at a table in the dining room. I came in and said hello. She made no response. I gave her a kiss and she looked at me with a blank look. I sat down at the table, glad no one was there to ask who this was that was visiting. One woman was across from her, but soon she had a visitor and they moved to another table.

Mother had an empty glass in front of her. Would you like more to drink? I asked her. "No," she said, "but you're welcome to if you want." Lucid but cold. It was almost the last thing she said in our visit.

Seated at another table was a woman with long, straight gray hair and a straw hat. A walker stood beside her chair and on her lap was a large...and I do mean large...stuffed pink rabbit. I watched her trying to feed her cookie to the rabbit and dribbling milk on its fur as she tried to get it to drink.

In the meantime, I tried to engage Mother in conversation. It was extraordinarily difficult. I asked questions and made comments but it was like the words were never spoken. She stared at something unseen in the kitchen. I began to think she was losing her hearing until I said in the same voice, "I have a new job." Instantly she turned and looked at me with interest. "Oh?" So I told her about being the new Executive Director for the Massachusetts Bible Society and said that Easter would be my last Sunday in the church. I told her about being in the Boston Globe and my trouble trying to find a place to live, but she was back to examining the finer details of her napkin.

The woman with the rabbit was hugging him close and I found myself growing envious. I wanted to hug a rabbit, too, and make the terrible distance between me and my mother go away.

"I'm taking a trip at the end of the month," I said. Nothing. "I'm going to Israel." She turned and looked at me with interest. She still knew of that ancient land of the Bible. It was still there. For a second. Maybe her own travels passed through her mind in that moment...Russia, Morocco, Alaska, Hawaii. Or maybe she struggled to determine whether Israel was a place or a food.

We sat quietly for a time. The woman with the rabbit got up and hobbled over to our table, trying to cling at once to both rabbit and walker. In quite clear terms she told us how her "baby" was growing up. How he managed to pull himself up and that his legs were getting stronger. She showed us. She told how he was learning and how he was a pain sometimes, but that was all part of it. She loved him. It was obvious. Then, selecting the rabbit as the most important support, she put her walker against the wall and hobbled into the TV room.

Mother continued to observe the design pattern on her white paper napkin. I told her that Rob was no longer commuting so far to work because they put the radio station in his attic. Again, nothing. Soon it was time for me to head south. I kissed mother goodbye. As I did so, she looked at me and laughed. She didn't laugh at all during the visit before that. She is no longer on antidepressants.

Driving home I thought of the rabbit--and of course thoughts of large rabbits turn my mind to Jimmy Stewart and Harvey. Of course this woman's rabbit was quite visible, although just as fictional in its own way. It had an imaginary life as an infant boy struggling to take his first steps, and there was nowhere that the woman went where he did not go. After all, you can't leave an infant boy on his own, now can you?

And Mother, too, had her Harvey. Whatever it was, it was in the kitchen for quite some time. It was reflected in the embossed lines on a paper napkin. An alternate reality...or perhaps simply a new mental interpretation of what was really there. It called to Mother. Called her away from a world where your children are making major changes in life, away from a world that exists on the outside to a world that exists only on the inside of each individual mind.

And I had Harvey, too. I was talking to someone who wasn't there, a figment of my imagination by all signs, but one that seemed for all the world to be sitting in front of me.

And I wished I had a large pink rabbit to hug.

From a visitor

Anne Robertson — Wed, 07 Feb 2007 02:37:00 +0000

I'm always grateful when I hear from those of you who drop by this blog. I don't always respond because time is tight, but I appreciate your e-mails, comments, and posts.

Recently I had a response from a colleague, now retired, who left New England at about the time that I came back. So we have never met in person. But, as is the case with many of you, we have "met" through this blog and through the experience of seeing a loved one through the agony of Alzheimer's.

My colleague, the Rev. Richard Lee Evans, has written a book entitled Senior Moments: Reflections from the Third Trimester of My Life, and in the book he has a segment about his mother-in-law's battle with the disease and the miracle of grace that often occurs at the border of this life and the next. I have asked his permission to print it here, since I have heard others relate similar experiences--not as many times as this, but still significant. I'd be interested to know if others of you have anything similar to share. Here it is:

2000

Out of the Fog—For a Moment or Two

During the final years of her life, Lillian Monsen was enveloped in the fog of Alzheimer’s disease. Yet there were three times we know of, during the last year of her life, that the fog lifted and for a few minutes she became “herself” again. These three experiences indicate to me that Lillian was on the edge between the physical body (with its disintegrating brain) in which she was trapped and the spiritual body in which she would be free and whole again.
The first incident occurred early in 2000. Lillian was in the dayroom of the Alzheimer’s Unit at Evanswood Nursing Center in Kingston Massachusetts. Suddenly she fell from her chair and hit her head. A nurse came immediately and found her unconscious and with no pulse. Several attendants helped lift her into a wheel chair so that they could return her to her bedroom, where they assumed she would be pronounced “dead.” On the way, she revived and looked at the nurse walking beside her. “I died, didn’t I, and you brought me back,” she asked? “Yes,” the amazed nurse responded.
The staff notified her family and soon her daughter and granddaughter arrived. Lillian knew them both immediately and wanted them to stay with her. She was fully lucid with no sign of the disease that had invaded her brain. She laughed and joked with Barbara and Diana and was full of life—just as she was years before. After about 20 minutes, the fog began to descend again and all of the Alzheimer’s symptoms returned.
The second incident occurred about six months later—again in the dayroom. Lillian passed out and staff members returned her to her room and to her bed. She regained consciousness and then passed out a second time. The family was notified and when Barbara arrived, her mother was awake and said: “I’ve been with Arvid (her late husband) and mother, but I’m not ready to stay with them.” Barbara tried to assure her that it would be OK for her to “stay with them.” Then after 15 or 20 minutes, the fog descended once again.
The final incident occurred the day before she died in February 2001. A staff member found Lillian on the floor of her room where she had fallen, near her bed. She sustained a severe head laceration. Staff members got her up from the floor and laid her on the bed where they stopped the bleeding and called for an ambulance for transfer to a hospital. She began to talk and said that her head “hurt a lot.” She carried on a lucid conversation with the EMTs while they placed her on a stretcher and wheeled her down the hall. After passing the nurses’ station, the supervisor asked an assistant who it was that was being wheeled out. “Lillian Monsen,” the woman replied. “Oh no,” said the supervisor, “that couldn’t have been Lillian. She was talking too rationally.” She talked rationally all the way to the hospital where, later that afternoon, she suffered a cerebral hemorrhage. Lillian remained comatose until she died the following day.
These three stories—taken together—have become a source of amazement and comfort to members of her family as we watched Lillian “teeter” on the brink of death and even glimpse a bit of that heavenly realm before her final journey into the eternal presence of God. “So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” II Corinthians 4:18 (NIV)

October 2004

Broken

Anne Robertson — Wed, 17 Jan 2007 19:02:00 +0000

Not a great picture, I grant you. But, yes, that is a sling around Mother's arm. I've actually been up to visit three times since my last posting. There has been a lot going on, and I haven't had the emotional energy to post. I find that writing this is both quite therapeutic and quite difficult--I guess all therapy is difficult, no matter what form it takes.

Writing about visits is a re-living of sorts and visits are a complete mixture of emotions. As I found back when Mother first entered The Birches, I find that I want never to leave and never to return all at the same time. A part of me wants to stay and never leave her side. The other part of me wants to play ostrich and pretend that this isn't happening, which is much easier if I just go about my daily life and don't visit.

But the pull to stay away vanished instantly when David called the week before Christmas to say that Mother had broken her arm and had pneumonia. I was up there within 24 hours. We still don't know what happened. The aides and nurses on staff don't think she fell, since her mobility is now impaired enough that she couldn't get herself up if that happened, and no one found her down.

What they did notice was a bruise on her upper right arm. It began, they said, as a straight line across her arm and didn't look like much. When the bruise got larger, they did an x-ray in-house. Not liking what they saw, they took her down the road to the hospital, where they confirmed a fracture. While waiting at the hospital, the nurses there noticed her wheezing and decided to do a chest x-ray. That's when they discovered she had pneumonia.

They decided to try just a sling rather than a cast for the fracture and sent her home with pain meds and antibiotics. So, when I saw her the next day, she wasn't very engaged. But she wasn't in bed either. I found her sitting up in the dining room with Narissa and Gloria.

Gloria was distracted by the blazer she was wearing. One of the extra buttons that come with most jackets was sewn on the inside down near the hem. For someone whose brain isn't connecting properly, this can do a number on you. She saw the button there on the inside and determined that her jacket wasn't on properly. But, of course, if she turned it around to try to make that button connect with a buttonhole somewhere, that wasn't working out either. Gloria wasn't able to focus on anything else and after a bit one of the aides took her to her room to get things sorted out.

If Mother had wanted to engage conversation, she would have had a hard time getting a word in edgewise. Narissa still has a lot on the ball and when I sat down, she wanted to talk. And talk she did. She told me a lot about her life, asked questions, and waxed wistful about the circumstances of life that landed her at The Birches. Like I remember from a similar conversation with Frances and Russell, the basic sentiment was that if you had to be somewhere, The Birches was as good as any; but the pain of not being at home and whatever knowledge she had of the road ahead was evident. She said what a nice lady Mother was. Mother stared into her cranberry juice. I said my goodbyes when it was time for supper.

I was, of course, up for Christmas Day with the immediate family and then again the day afterward when the extended family also came for a visit. It's time to head up again.

The pneumonia seems to have cleared up. Thankfully they caught it early. She has always been prone to that and I remember her having walking pneumonia several times when I was growing up. The bone-breaking, however, is new. She never broke a bone in her life until she was well into her sixties and broke her pinky finger on a spiral staircase. While I'm glad to know she didn't fall, if she fractured her arm just by walking into furniture or something (which seems to be the consensus...especially given the straight-line bruise), bigger issues loom. It seems we now must add osteoperosis into the mix. The doctor has confirmed.

And so life goes on...break by break. It strikes me that Alzheimer's is kind of like having your brain in a sling. It's still there, but you can't really use it and it seems to only get in the way.

Noel Part II

Anne Robertson — Sat, 02 Dec 2006 03:16:00 +0000

Thanksgiving is really the kick-off to the Christmas Season these days, and so it is that a week and a day after celebrating Thanksgiving at the Birches, we were back for their Christmas party.

Thanksgiving first--with some pictures. I'm struck by Mother's room...how more and more it is becoming the room of a little child. Here is her bed.

We had to get an extra piece of furniture to accommodate her roommates:
Of course that may or may not be what she would have done with her room, but people bring her stuffed animals...ever larger ones...and so they need a home. She seems to enjoy them, and they enjoy her back.

But on to Thanksgiving. Actually, there's not much to report. Sadly, this year we were separated from the rest of the residents and were down in the private dining room. It's very nice, but I miss being with the other residents and their families. Rob was missing, as he was enjoying Thanksgiving on an airplane to Missouri for work. Stephanie came, as did Marie and the boys, David, Laurie, and me. We came, we ate, we went home. (If I were a bit more ambitious, I'd put that in Latin, but it's getting late.) Here's a picture of me with Mother at dinner.
I believe that's Laurie's finger down in the corner!

But the true miracle was, as churches have always said, at Christmas. Or at least at the Christmas party, which was this evening. Upstairs in the great room, we all gathered, having come through driving rain to celebrate. Rob and I came together and were about half an hour late due to the terrible weather and traffic. But we arrived just as the food was being put out, which was good. When we came in, Mother didn't seem as responsive as she has been on recent visits. I was glad no one asked her to identify her family members. I'm not sure what she would have said this time.

A lavish spread of hot and cold items were there, which was good since I had not had lunch or supper. While the cooking crew was a bit off their game for Thanksgiving, they were in true form for tonight with not only the requisite cheese, crackers, and veggie trays, but meats and hot dishes, wine and egg nog, and some downright incredible peanut butter fudge.

A talented young woman played the piano and, after we had all stuffed ourselves, we paid a bit more attention to the music. Christmas carols, of course. Our family (Rob and I, Mother, David, Marie, and Laurie) were pretty close to the piano with Rob and I on either side of Mother. After the music had gone on a bit, some folks began to sing along. I began to sing, too. Not long after, I saw Mother's lips begin to move.

I was on it in a second. Looking directly at her to encourage her, I began to sing louder. Rob caught on and chimed in also with his lovely bass voice. Mother's voice grew stronger. And she began to sing the carols...with the words...and we looked at and sang to each other. Darned if she didn't know every single word of all three verses to Away in a Manger. Didn't miss a one.

And then it happened. The First Noel. As the piano played and we sang, it brought me back to that first Christmas season two years ago when all the residents at dinner had stopped and joined in the taped song playing in the kitchen. Thanks to WGBH Morning Stories who let me tell that story on the air, I was remembering it all as we sang it again at the party. We came to the chorus...Noel, Noel...Rob and I both noticed it at the same moment and looked at each other in amazement. Not only was Mother singing all the words perfectly, she was singing the alto line! It was on pitch and correct...I've sung the alto part enough to know it as she does. It was all I could do to finish the song.

But we did finish and we went on singing, until David indicated he needed to leave and we had to go downstairs to have a family picture taken. As we helped Mother stand up to go downstairs, our noses told us that her dinner had finished its course through her digestive tract, so after the picture it was back to her room to get cleaned up and then we headed back out into the storm.

She sang the alto line. A small thing, I guess...but those are the things that count these days. Like the flashes of lightning outside, there was a flash of grace within, and the first noel that the angels sang still can be heard, even through the fog of Alzheimer's. Born is the king of Israel...as a child in a manger...as an old woman in a dementia unit. Noel!

Memories

Anne Robertson — Sat, 18 Nov 2006 03:18:00 +0000

That is Mother in the 1960's as she began her work as an English teacher at Coventry High School. Below is a picture of her at Coventry High in 1975, a year before I graduated. By then she had moved from teaching English to being a guidance counselor. She retired from there in the late 1980's.

Last week I went to a retirement party for my high school chemistry teacher. So many faculty members were there. Since both of my parents worked in the school many years, the faculty were like family to me. They were my parents' friends, and we saw them frequently outside of school settings.

And so Rob and I went to the retirement party. And our old friends...missing my father who died so young and grieving my mother's condition...came to us and told us stories. The time my mother put in two pounds of coffee instead of one and how it came out like mud. The former principal saying, "Your mother was my right arm at that school." The former vice principal saying, "Your mother was the smartest woman ever to work at the place."

It was like listening to the stories at a funeral...wonderful to hear the high regard that all had for her, but hearing it all in the past tense.

Rob went up to see her shortly after the event. He said she seemed to recognize some of the names as he mentioned them. I have left old yearbooks in her room and from time to time we go through them. It's hard to say what she knows. She was the senior class advisor for many years, for classes of 400-500 kids. She ran honors night. She ran graduation. "Ten to fifteen people now do what she did all by herself," they reported to me. I don't doubt it. I was there.

Now she cannot dress herself.

Can we roll back the tape? Can it be 1975 again? Can my father be alive? Can my mother have her mind? Can I again dream of marriage and family?

No, no...to every thing there is a season, and the season for those things has passed. God has new seasons in store. But, just for a moment, I was back there...in the good old days, as they say. The tape rolled back for a few hours, and we laughed and remembered.

Beech Hill

Anne Robertson — Wed, 18 Oct 2006 20:05:00 +0000

Yes, we managed to make it out for ice cream yet another time. Well, maybe that's not obvious since this is just a picture of us with a goat, but if you remember back to the other pictures of Beech Hill Farm, you'll know that this is just a couple of miles from the Birches and they have great ice cream. They also have a bunch of farm animals (thus the goats) and a corn maze (which we declined to try).

Who is taking this picture, you might ask. The peacock? No, it was Marie. When I arrived at the Birches and pressed the little red button to let myself in, the door opened and out came Marie and mother, heading out to get ice cream. Marie and I each used to have our specific visiting days (thus the title of this blog), but with our work schedules both changed, we now both just come as we can. This time it was on the same day. So, with visions of Moose Tracks in my head, we all piled into the car and headed for Beech Hill.

Piled is perhaps the wrong word. Mother's arthritis makes it more and more difficult to get down and up, and swinging her body and legs around to get in a car is difficult. And it seems to hurt. So I'm not sure how much longer the lure of ice cream will trump the pain, but for this time it did.

Visits like this are a mixed blessing. As I drive up, I am always worried about what we will do. I know it's about being and not doing, but old habits die hard, and I feel awkward thinking that I will come in and just sit or try to start a conversation that never starts. It seems silly to worry about being socially inept in such a setting, but nothing about our emotional lives is very sensible in the end. So there's a feeling of relief to arrive and have Marie there, a decision to go already made, conversation guaranteed. But there's also the sense of loss...always and everywhere loss. Maybe Mother would have said something meaningful if we had simply been sitting quietly in her room. Or maybe not. Maybe next time the goat will sing an aria from Candide. Or maybe we will just go for ice cream.

Visits

Anne Robertson — Wed, 06 Sep 2006 17:41:00 +0000

What does it mean to visit? I have been to The Birches twice since my last posting, but it's hard to know what to say.

The first time I arrived to find Mother with sevearl other ladies in the TV room. She looked up, "Well, you never know who you're going to see here!" she said with a smile. Next to Mother on the couch was a woman holding a birthday card for someone who had turned 90 years old. Maybe it was hers, maybe not, but she looked at it many times, taking in the beauty of the artwork, but then opening the card to find the inside blank.

Mother, on the other hand, was holding a lovely birthday verse from "Bob and Marcia," with a suspiciously blank front and back. She looked again and again at the blank cover, just as the woman beside her looked again and again at the blank inside. I tried my best to get the two parts of the card back together again, but to no avail. So I settled down in the third place on the couch, next to Mother, and joined in the group activity, which was watching a video of The King and I.

I tried several times to engage Mother in some sort of conversation. She would look at me briefly and then turn her attention back to the TV. I wrestled with whether I should take her back to her room in the hopes of having more real interaction. But then a part of me was grateful for the diversion. As I think about visiting Mother, I always have this bit of anxiety...what will we do? Will we both just sit and stare? What does it mean to visit when you can't have conversation or play a game or, now with her decreased mobility, even take a walk?

I never really had training in how to have visits that didn't involve either doing or saying anything. Of course in my job as a minister I visit non-communicative people in the hospital or in a nursing home from time to time...but I don't stay long. I go in and do something. I hold a hand, pray, and leave.

We stayed and watched The King and I. Others drifted in and out. A woman came by carrying a basket with several things wrapped in towels and facecloths. "I had to do it," she said. "I left everything to my daughters. He wants me dead. He brought me a poison drink, but I was onto him. I poured it out and the fish died." She then went on her way. Another woman who had no signs of dementia that I could detect came in and sat down. "Oh, The King and I" she said within about 10 seconds. She asked me about the weather and was soon joined by a friend who had come to visit. "Come on," she said to her friend, "Let me show you my room." An odd bit of normalcy on the foreign soil of dementia.

A woman with a walker came in and indicated that I was in her seat. So I got up and moved to a nearby chair. The woman with the basket came back through. She stopped to talk to Mother. "Don't worry," she said, "I won't be dead. He won't get me. I'm going to leave everything to my daughters." Mother smiled and nodded. And then it was time for me to leave to get to a 5 pm appointment. Mother still patted the birthday verse from Bob and Marcia beside her. The other woman still looked at the blank insides of her card. The King of Siam still worried about being considered a barbarian, and I had exchanged perhaps ten words with Mother in an hour.

The next time I visited was Labor Day, when we had a family gathering in the private dining room to celebrate David's birthday. We chatted about various events, but I can't recall that Mother spoke a word. Eventually we finished our meal and went up to her room. She has a new cubby to house her ever-growing menagerie of stuffed animals. The aide came in and helped her in the bathroom...as they do each time after meals. Then we took her back out to the common area and she joined in the next activity of the day.

Is that a visit? I don't know. I often teach others about the ministry of presence...just being there with someone, even when no one is speaking or doing much of anything. But is presence one-sided? Did Mother really know that I was there with her watching The King and I? I have no clue. But I do suppose that she knew she was in community. That there were others there with her, reassuring her that there was no danger...except for the guy with the poison drink...and participating in something that normal people do, often with about as much responsiveness.

I don't know if you can call it a visit, but I suspect it is still sacred, no matter how awkward it feels.

Memory Lane Webring

Anne Robertson — Sat, 19 Aug 2006 22:25:00 +0000

Many of you have written to me to say how these posts have helped you. There are others out there also who are writing of their experiences and have thoughts and information to share. That's what the Memory Lane Webring is about. This blog is a part of it, as are a number of others. Please be sure to click on the picture or name of the webring above to find other sites that might be of help.

Spread the word...we're all in this together.

A gift

Anne Robertson — Fri, 04 Aug 2006 00:55:00 +0000

I headed up to The Birches today, arriving about 2 pm. I found Mother in the TV room with several other ladies. She looked up at me and smiled and said, "Oh, hello!" and I sat down next to her. She had a throw pillow on her lap and was trying to do something unknown with the edging around the pillow. A woman next to her, wearing a straw hat with a huge sunflower on it, decided that she really wanted to have that pillow. So Mother put it down next to the woman and patted it. She looked around the room and counted the chairs aloud. The woman who wanted the pillow asked where she was supposed to be and Mother did her level best to answer, saying something about the three projections on the wall. Both seemed fairly well satisfied with the outcome.

I asked Mother if she could come back to her room for a minute and said, "I have a job for you." She perked right up...having a job seemed almost as good as having ice cream. She needed a bit of help to get up off the couch, but not too much, and we started for her room. We had only moved past one chair when the woman sitting in the next one held out a piece of paper she was reading. "This tells me what to do, but I can't figure it out." She held the paper out to us. It was a song sheet for "In the Good Old Summertime." "It's the verses to a song," I told her. "The worst is wrong?" she asked. It took some time to straighten out.

Mother and I then headed through the dining room where a man was visiting with his wife. It was the same man we had sat with at a birthday party, back in the first few months that his wife had been there...sometime last fall, I think it was. He was quite friendly, and quite fond of Mother.

He looked at her and asked, "Who's that with you, Joanie?" My heart stopped beating. It was the test I've been afraid to give...the question I wanted to know but was too afraid to ask. Does she know who I am? I looked at Mother, bracing for the worst. "This is my daughter," she said without missing a beat. A thousand pounds fell from my shoulders, and a thousand joys sang from my heart. We went on back to the bedroom.

The job I had for her was to sign a birthday card I had picked out for her to give to David, whose birthday is the end of next week. I got one of the yearbooks to write on, sat her down on the bed, and got out card and pen. We read through the card, and I asked her to put "Love, Joan" at the bottom. The last thing printed on the card was "Happy Birthday" and she copied those words. Her writing was a bit shaky, but still legible. Then she wrote "Happy Birthday" yet again under that. "Good," I said. "Now, why don't you write, 'love, Joan'" She did that quickly and easily. "Perfect!" I said. Then she wrote "Furfight." I think that was her version of "perfect"...a homonym of sorts. Then she started copying that word...if it can be called a word. Eventually she felt the card was done and I put it away and will mail it next week.

The stuffed animals in her room are breeding. There are more all the time. She spent quite a bit of time fixing the fur on the skunk's tail. Then she moved the little platypus to be next to the big platypus and picked up the red bear. She read the tag which said it was for collectors. She posed it in a very particular way on one of the chairs saying, "There, now they can find it when they come to collect it."

She picked up a pile of cards and we sat back on the bed and read through many of them...some from last month, others reaching back to her birthday, Easter, Valentine's Day, and Christmas. We talked about the people who sent them, and I gave her some news as we talked. Most of it didn't get much response, until I said that my new church was going to be starting Stephen Ministry. About six light bulbs went on. "Wonderful!" she exclaimed. My new book was passed over with an "Oh," and she just kind of looked at me when I told her about Jarrett and Julie's new baby. But when I mentioned Stephen Ministry, she was back in reality, if only for 20 seconds, and seemed to know exactly what I was talking about. Such an odd disease.

Then she picked up a safety card that for some reason was on her nightstand. She read through all the warnings about not smoking in bed and not letting kids play with matches...and then came the same set of warnings in Spanish. As she puzzled and puzzled over the Spanish, I pulled out her Bible and found a sheet where she had about 8 Psalm numbers listed.

The first was Psalm 89 so I turned to that and started reading. She moved her warning card inch by inch closer to the Bible until it was right over the text. "Where are you reading?" she asked, and I showed her where I was on the page. Then she put the card aside and read along with me. We finished the Psalm and she put her card in the Bible as a bookmark. Then I asked her if she wanted to have a prayer, which she did. So I prayed with her, then hugged her and cried for a bit.

She got up from the bed without assistance, and on my way out, I brought her back down to the dining room where the man and his wife and several others were still seated.

She was there today. I could still find her. And she knew me. I am still her daughter. How much longer?

July

Anne Robertson — Sat, 22 Jul 2006 22:05:00 +0000

I've actually been to The Birches twice since my last post. Once was for a family gathering on July 4. The Birches does a barbeque and invites families, so we went for that. David had reserved the private dining room, so we weren't with the others, and only Rob and Laurie rounded out the family crowd. Rob and I went up together.

Mother seemed more alert. She has Parkinson's now, which isn't really a good thing, but it seems that the medicine for that might be helping her. Mother was wearing a patriotic necklace that they had made in a craft session. In a way, visiting there is much like visiting a camp in that you get to see what your family member has worked on recently. Of course it's hard to tell how much of it she actually did, but I'm sure they encouraged her to do as much of it as she could unaided.

Like with other family times, it is always a challenge for any of us to actually visit with Mother. We begin to have our own conversations, to which she can't contribute, and then I go away wondering if I have really been there.

I went back up this past Tuesday and just as I was arriving, I met Marie, who was also coming for a visit. It was good to have her there, since it enabled me to take Mother out for ice cream. It was very hot, and between the heat and the concerns over Mother's limited mobility, I was thinking that going out was not going to be in the cards. But Marie is braver and we decided that since the ice cream place had an area where we could sit indoors, that we could get her there.

We found her in her room, in two layers of clothes and lying on the bed underneath a blanket. It was close to 100 degrees outside. We went into the room, but she wasn't sleeping...just lying there, thinking whatever thoughts a person who can't think thinks. We asked if she wanted to go for ice cream, and she didn't waste much time agreeing.

So we changed her clothes, found a pair of shoes, helped her to stand up, and guided her to the front. While last summer she only needed help buckling her seatbelt, now she needs lots of help getting in and out of the car...especially since I have a small SUV. Marie assured me that she had gotten Mother in and out of her Forester, and sure enough, we got her into my Toyota RAV4. Marie is good at this.

It's hard to say whether she can't get around because it hurts or because her body is just too stiff to move. Mother has always had a very high pain threshold, so it's difficult to know if she is in pain. If Mother ever actually says something hurts, you had better call an ambulance...it's bad. She offered no complaints...actually not much in the way of words at all.

But she did eat 8 ounces of coffee ice cream. And she read the signs at the shop.

Once the ice cream was consumed, we reversed the process and took her back. We got upstairs and were greeted by a resident I didn't know who said very pointedly, "Hello." Marie and I said hello. It apparently didn't count. The woman said to us more loudly and sternly, "Hello!" We said hello again. Somewhat agitated the woman thrust out her hand at us. "Hello!!" she said again, like a school marm who simply wasn't accepting 2+2=5 as an answer. We each shook her hand and said hello. "Thank you so kindly," she said, and wandered off.

But the bad news is that Frances has died. Of course privacy laws prohibit my knowing the details, but I felt very sad. She was such a sweetheart and so very kind to Mother. Russell must feel really lost.

An activity was just breaking up in the Great Room, so we left Mother there, visiting with a few of the ladies who were still seated around a table.

I am not at all sure that she knew me.

Visiting becomes ever more difficult. It's hard to take her somewhere. She's past the point of being able to do the puzzles we did at first. There's no real conversation to be had. You can't really "do" and you can't really "talk," so you have to find a way to simply "be" in the same place at the same time. Our family was never good at that even under the best of circumstances. We worked together on a project, played a game, or had conversation. Maybe that's part of the lesson...to learn "being" instead of "doing." And it may not just be the lesson of those of us who visit. Perhaps it is also one of the lessons of the disease for her.

It is a lesson those who work in such facilities must grasp in order to be good at what they do. The residents are of sacred worth...even though they are only able to "be." They aren't of any use, except in an abstract sort of way, and in this society that defines the worth of everything by its usefulness, perhaps that's not such a bad lesson to learn.

Memorial Day

Anne Robertson — Wed, 31 May 2006 19:32:00 +0000

It's a day with "memory" built into the name, but I spent it at the place of forgetting. David, Laurie, and I gathered with Mother at The Birches for lunch. They are very good at recognizing holidays and occasions and many residents were gathered around the outdoor grills for the salads and burgers and hot dogs so common on the holiday.

David had reserved the private dining room for us, so we were away from the crowds. Mother has deteriorated quite a bit in her ability to move around. I think I already mentioned that she has gained a good bit of weight...probably at least in part because of her decreased ability to move. She doesn't seem able now to get out of a chair unassisted, so once she is seated, she stays put until someone gets her up. Perhaps we'll need to consider a wheelchair.

While I noted not too long ago that Mother was engaging more in "conversation," that was not the case on Monday. She spoke two words during the entire time. She did eat, but was unresponsive to questions.

A few days earlier I was writing a new-found cousin, who I had discovered in some of my geneological pursuits. As we were exchanging information, I caught myself writing about Mother in the past tense. That's really what a visit with someone with Alzheimer's is like. You visit a memory of the past. Others went to cemeteries on Memorial Day and reached back for memories of loved ones while looking at a granite stone. We went to a sort of living tomb...lovely, kind, bedecked with flowers, but still we were looking at one thing and trying to remember something different...something alive...memories of what once was and now fades into history.

Several of you readers have written to me and told me stories of your mothers...the amazing accomplishments and vibrancy of lives that have been stolen by the disease. I think it's important to keep telling those stories...to keep remembering that what we see when we visit a loved one with Alzheimer's is the tomb of memory. The tomb is real, but so is the memory. We gather there and remember that they are not the granite slab, they are not the body shell, they are in spirit still what they have always been. That reality is simply fading from our view...like trying to hang onto a cell phone signal while entering a remote wilderness.

The person who is my mother exists still, but in a different dimension or form. More and more I can only reach out and touch the stone.

Mother's Day

Anne Robertson — Sun, 14 May 2006 21:42:00 +0000

Since David and I both serve churches a good distance from Concord, NH, we couldn't get to The Birches for a Mother's Day lunch. So, like last year, we met at a lovely restaurant down the street at about 2:30 to celebrate both Mother's Day and several May birthdays, including hers. Aside from the fact that some roads were flooded and we had trouble getting there (we've had about 6 inches of rain and it's still coming), the meal was good and it was a pleasant enough afternoon. Mother didn't say much, and I can't say there is anything striking to report. It was a meal and we were together...maybe the last mother's day, maybe there are 20 more to go. Who knows?

Anyway, I thought I would post the article I did for our May church newsletter in honor of the occasion...

Mother’s Day is one of the more emotionally complex days on our calendar, probably because the relationship between mother and child is one of the most complex in our world. Some of us can’t be mothers. Some have children and wish they didn’t, while others take to motherhood like a duck to water. Some have lost their children through death or estrangement, even as others rejoice in a medical miracle or the healing of a relationship that has restored a child to them. From the side of the child, some are grieving the loss of a mother or feeling resentful of an abusive mother, while others relish a day to express love and gratitude for the woman who gave them birth and nurtured them. Some celebrate their mother as their best friend.

I spent Mother’s Day in 1959 giving my mother hours of labor pains as I was born into the world. Earlier that day my father took a picture of her rounded form on the stone wall in front of the blooming forsythia at our house. That picture was always a favorite memory that I would look at with her. “Yes,” she would say, “Just a few hours later I went to the hospital to have you.” Even into my adulthood we would go back to that house every so often and sit on the stone wall in front of the blooming forsythia and have our picture taken together.

She doesn’t remember that now. In fact, I’m not sure that, if I tested her, she could tell me that I am her daughter. She knows there’s something familiar about me, but soon even that will go and I will be yet another kind stranger who comes from time to time. Alzheimer’s is a cruel thief.

In the midst of those experiences and all our “mother issues,” the prophet Isaiah says in chapter 49 verse 15, “Can a woman forget her nursing child, or show no compassion for the child of her womb? Even these may forget, but I will not forget you.” As it turns out, God is not only the faithful father, but also the unconditionally loving mother. Since losing my father in 1980, I have taken solace in having God as my father. Now, as my mother travels to dimensions of the mind where I cannot follow and where memory of this life becomes a puzzle to complex for her to solve, I take comfort in the mothering side of God, that will not…in fact cannot…forget me.

And so this Mother’s Day, whether you gather to celebrate your earthly mother or whether you choke back tears because of painful or bittersweet reminders, take a moment to thank your Mother in heaven…the one who will remember your name when all others forget.

A good Easter

Anne Robertson — Mon, 08 May 2006 16:42:00 +0000

It's a little late to be posting about an Easter visit, but with a couple of weeks of vacation right afterwards, I just haven't gotten to it. Rather than going to The Birches for Easter this year, we decided to try an outing and bring Mother to us. The gathering was at Marie's and after coming to Sunrise service, Rob went up to get Mother while David and I tended our churches on that busy morning.

At two we all convened for dinner. There were quite a few of us. With both of my grandparents now gone, aunts and uncles were also on hand, as were some friends and neighbors of Marie...something like 17 of us in all.

When she came in, it was obvious that, although she has been there many times before, Mother didn't know where she was and had a bit of a frightened look. She is also much more unsteady on her feet these days and needed help getting up the stairs to the main floor of the split-level ranch. I don't know if she could have said who was who...especially since there were people there that I didn't know either. But we got her settled on the couch with Rob on one side and me on the other. She seemed to settle in more.

Then the cat came and made a beeline for her lap. Animals know when they have fans in the room, and they don't care if you make sense when you talk just as long as you keep the strokes coming. Mother was delighted with the cat, and the feeling seemed to be mutual, so that was a huge plus. I have seen her so often at The Birches trying to get her stuffed cat and dog to come to her, to get on the bed, or other real-animal behaviors. It brought a lump to my throat to finally see her with a live cat that responded to her.

It took two of us to get her off the couch and to her chair at the table. That physical change is a large one. She still has the swelling in her feet, although it doesn't seem to hurt her. She ate well at dinner and interjected comments into the conversation, despite her unfamiliar surroundings. She has always adapted well to new circumstances, and that ability doesn't seem to have been taken from her. I made a mental note...be sure to cultivate that ability. In the day when even the familiar places become new, it is a skill critical to emotional well-being.

After a few hours, David took her back to The Birches.

And that was Easter. It's a day about resurrection and new life. While there were some new behaviors, it's hard to call it new life. But perhaps in those times when resurrection doesn't seem to be the current reality, Easter comes as a reminder of the promise, much as a warm day in late winter promises that cold is not forever. Perhaps Easter was there at Marie's this year to remind Mother that she will not always be trapped in this increasingly useless body/mind. Perhaps it was there to remind us that her own day of resurrection will come, as will ours...and that's a good thing. "In that great gettin'-up mornin'" maybe we'll all sit by the edge of a heavenly lake, pet one of heaven's cats, and remember the days when we were so distressed about earthly things...things that will seem just an insignificant blip on the radar from that new perspective. We'll laugh at how we thought we could be separated, when love is really eternal.

It was Easter. It was good. Easter is always good.

Adjustments

Anne Robertson — Sat, 01 Apr 2006 01:07:00 +0000

Today was actually the second time I've visited since I last posted. The last time was in mid-March when we gathered at the Birches to celebrate Laurie's birthday. Today I took advantage of the warmest day of the season so far to head north, see some contractors at my cabin, and stop in at The Birches.

When I arrived, they had just finished an activity in the great room and Mother was the only one left seated there. She couldn't tell me what they had done (at least not in a way that I could understand) but there was an Easter basket on the wall that might have been the creation of an afternoon.

Mother was wearing a favorite red and white sweater with bright red, stained, rather ugly pants that I had never seen before. "Are these new?" I asked her. "Yes," she said. "I've only had them 110 years." Then she burst into peals of laughter. One of the nurses came by and pulled up a chair to ask if Mother minded being called "Joanie." I said I didn't think so, although not many people called her that. "She's pretty easy," I said, and the nurse agreed. She told me that Mother reads to people. I knew she would sometimes read in her room, and apparently the staff noticed that. So, when she's just sitting at a table with others, they'll give her a book and she'll read aloud to everyone. Who knows if she understands what she's reading, or if anyone else understands what they're hearing, but everyone seems quite happy with the arrangement.

Evie the wanderer came through, but seemed to want to stick around, at least as much as she is capable of sticking around. She pulled up a chair to the table, although she never actually sat in it. But we had just decided to go outside for a walk.

Evie preceded us and out we all went. It was a perfect, 70-something, sunny day. They had the stairs off the patio blocked with patio furniture, forcing people to use the ramped walkway...or so they thought. Before I knew it, Mother was walking out on the cement buttress on the side of the stairs. Olga Korbut never did so well on the balance beam. Evie was headed in the same direction, but I managed to get them both back, having no idea what they would do at the end where there was a good-sized drop. Probably a forward, double-twist was out.

And so we just walked and enjoyed the birds and the sunshine. Mother seems completely adjusted. She engages conversation in groups much more than she did before. Of course "engaging conversation" is a relative term. But she speaks right up. Back in her room she was petting the stuffed cat that Rob and Steph got her for Christmas. She said it was a good cat. She patted it some more, then she looked up and said "65%." So, is it 65% good? 65% cat? We'll never know.

I noticed at the birthday party a few weeks ago that we have adjusted some as well. It used to be that we didn't know how to handle her "conversation." We would be sitting around the table in the private dining room for whatever occasion having a normal conversation, and then she would say a typical string of strange words. And we would fall silent. It was the elephant in the room--the brilliant conversationalist that could no longer make a bit of sense. Whenever it happened, you could feel the pain around the table. If she just kept silent, we could keep our denial at least partially intact. When she spoke, it was a stake to the heart.

But now, it is different. She is more comfortable speaking...perhaps because we are more comfortable hearing. We are having conversation. Who cares that it makes no sense? It is normal that people get together and have conversation, and she is perfectly content to engage in that normal activity. Others are content to listen. It is comfortable.

Evie had gone from in front of us to behind us on our walk, and when we rounded a corner to return, we met her coming the other way. She put out her hand to Mother as she shuffled forward. Mother took Evie's hand and shook it. "Hello," said Mother. Evie turned around and followed us.

On the way back, David came walking out. Apparently he missed his visit yesterday and came today instead. So we all went back to Mother's room, where Laurie was waiting. Mother's glasses were missing. Apparently they have been missing before. The last time they found someone else wearing them. Who knows where they'll turn up this time. David had brought their tax return for Mother to sign. He had her practice signing her name on another piece of paper. Not great, but okay. Then they went for the real thing. But she couldn't see the lines without her glasses. So David put his glasses on her. Then she could see, but David couldn't see to guide her! They gave up.

I gave the 65% cat a pat on the head and kissed Mother goodbye.

The Ridge

Anne Robertson — Thu, 23 Feb 2006 00:22:00 +0000

I actually did have another visit inbetween today and the last one, but it was a family gathering and there really wasn't much to report. Today I went up on my own and found Mother with 25 or so others in the Great Room upstairs celebrating a birthday. They have a big birthday bash for everyone's birthday, and today it was the turn for a woman named Paulie. There was cake and ice cream and an ancient pianist strapped into a special chair on the piano bench. He was playing the old songs from the forties and everybody had a booklet to sing along. He played from memory, which wasn't flawless, but it was a pleasant atmosphere.

Mother was at a table with Pearl from The Courtyard, and a couple of people from the Ridge. One of them, June, was there with her husband, who visits daily. He is 87 and quite spry. They've been married 64 years. He did his best to help his wife find her place in the song booklet and to help her eat the cake and ice cream. He noted several times what a great place it was. He kept up a cheery demeanor, but the pain in his eyes went down to his toes. She has only been there two months. She kept falling at home, not using her walker, which is why he finally brought her to The Birches. "It's a brutal road," I said, and tears welled up in his eyes.

He said that he liked my mother, whose new room is across from June's. He told me that she reads all the time and that he brings her magazines. He said she is always laughing. June seemed to be in the same general mental boat as Mother...not saying much and not coherent when she did. I ached for him and wanted to just take him back to a room and let him cry for awhile. 64 years. It is indeed brutal.

Soon the party was over, and I took Mother back to her room. "Do they have a lot of birthday parties?" I asked. "If they're not responding very helpfully, then what do we put in its place?" she responded. I went in to use her bathroom, and when I came out, she was nowhere to be found. I walked down to the dining area where a resident and his son still sat. I indicated I'd lost Mother and the son smilied, knowingly. "She's probably in someone else's room," he said. "They all do that." I shared that Mother had been the resident kleptomaniac down in The Courtyard. The son pointed to the wool tam his father was wearing. "That's not his hat," he said.

I went back to search the rooms and found Mother in someone else's bathroom, brushing her hair with someone else's hairbrush. "Why don't we go back to your room and use your own brush?" I suggested. She laughed and came along. She no longer feels the need to take her pocketbook wherever she goes.

We sat down. I investigated a new stuffed dog in a basket and it made all sorts of noise. It kept making all sorts of noise at odd times until I finally discovered that it had a motion sensor...thus the reason for its presence at the bottom of a basket. It went back there. The ever-wandering Evelyn came through several times. You can always hear her coming, as she has some sort of sinus problem and snorts constantly.

Another woman came by, also. She asked us both if we were okay, and we agreed that we were. "Just let me know if you need anything," she said. "I'll do anything for you." It seemed like she would. She had her purse and a sweater over her arm like she was going somewhere. Mother's room is, like the old one, at the end of a hallway. There is an emergency exit there, but since they don't want residents getting out that way, they conceal the door with a covering that looks like a bookcase. "I was going to go out that door," she said, pointing to the fake bookcase, "but I think I'll go out the other one instead." We affirmed that as a good choice.

Mother then looked at the wall where we have some collections of pictures hanging, below the plate rack where all her cards and a few other things are displayed. "One thing I missed," she began. Then she said something about decorating and family and ended with "when we get down to the bottom layer of the pianos." It's all a mystery. She seems at some times to say what she's looking at...she was looking at decorations and pictures of family. But I have no clue what she was missing or where on earth the layers of pianos came from!

And so life continues on The Ridge.

The same, yet different

Anne Robertson — Fri, 20 Jan 2006 23:00:00 +0000

During a meditation time yesterday I had a strong sense that I needed to go see Mother today. So, after getting some things done in the morning, I headed to The Birches to arrive right after lunch.

This was my first visit to her in her new room. The Birches contacted David a few weeks ago to say that Mother had a lot of friends upstairs on "The Ridge" and that they would like to change her room so that she could be up there. We agreed to the change. Each "neighborhood" is built the same way and Mother's new room is identical to her old one. The shape and location of her corner room is exactly the same and they did a wonderful job of moving all her stuff and putting things back both on the floor and the wall exactly the way they were downstairs.

When I arrived, she was seated with some others in the dining room, and people were just heading into the TV room as lunch was finished. I came and said hello. She gave me a cheery, "hello" and then said "God bless." It was not a greeting for someone she knew well. Her eyes were somewhat vacant...looking a bit larger than usual and somewhat less engaged.

As the others headed for television, I brought her back to her room, pulling her past a man still seated in the dining room that she seemed to want to commune with a bit too intimately. Russell is forgotten in a heartbeat, I guess. I don't know the residents upstairs, except for Evelyn (of "fluffy stove" fame last winter). Evelyn is as active as ever, never ceasing her roaming for even a moment.

I brought my laptop so that I could show Mother pictures from my Florida trip and the powerpoint presentation I did with the eagle pictures I took. Evelyn made three visits into the room, during that time...once poking her hand all over the keyboard...glad she didn't hit the delete key. Mother enjoyed the pictures a bit, but she seemed more fascinated by the icons for manipulating the pictures at the bottom of the screen. Her attention was drawn to them again and again...ever the organizer.

She has gained a fair amount of weight and her pants looked a bit tight. Once I turned off the laptop, Mother began to call to Cody (the big stuffed black lab) and I went and sat on the chair with the stuffed cat that Rob gave her for Christmas. I asked if Cody got ever went after the cat. "Not often," she said. She came over and patted the cat. "He's a nice kitty," she said.

Then she sat down on the bed. There was a throw there I had never seen before...hope it's hers. On top of that was the throw given to her and David by members of David's church in Claremont when they were married. I looked at it and realized that today was their 10th anniversary. I'm always bad with such things. One corner had their names embroidered in a pair of joined hearts. She read their names and the words around them, "Marriage: the beautiful blending of ..." she stumbled on the next words, finally she got out "two" and then a bit later "lives." She went back to read it again...spelling out some of the words this time. She had difficulty with the same two words. She tried spelling the last, but had trouble coming up with the "i" in "lives." It's the first time I've seen her have trouble with reading or letters. Probably not a good sign for a former English teacher. She folded the throw so that the embroidery was no longer visible.

I asked her if she knew any of the people up here in this new neighborhood. "Not really," she said, "but I recognize their faces. So I hold out my hand." Always grace.

I talked to her about Florida and her sister Judy's wedding last week. (We didn't bring her, as she would have had to be away overnight.) "Only Judy would want to be married outside in January," I said. She laughed, a bit of remembrance of my aunt's eccentric side. She wasn't too talkative today and eventually conversation dwindled. So we had our prayer and I headed out as she went back to pat the cat...quite at home on this tenth anniversary, and yet not there.

Christmas Day 2005

Anne Robertson — Mon, 16 Jan 2006 22:46:00 +0000

It was an odd Christmas this year. Since it was a Sunday, both David and I had church obligations in the morning. With my scheduled flight to Florida on Christmas night and Rob and Stephanie off visiting her parents, I was sort of on my own. So, once church was done and I had gotten packed for the trip, I headed up to The Birches.

Of course I wanted to be with Mother on Christmas. I brought her present and since David, Laurie, and Ward were there when I arrived, we all exchanged gifts in an unplanned celebration. But still I wondered if she knew it was Christmas. I think at some level she did...but what level?

That's always the question these days. People ask if she still knows me. She does, but at what level? I don't quiz her as I see some families do...asking "Who am I?" or "Where do we live?" Maybe I don't want to know the answer. But I see recognition in her eyes, so I know that I am still a familiar face. I just can't be sure that she could correctly identify that familiar face if I pushed her. And so, for both our sakes, I don't.

She doesn't ask about others anymore as she once did. She has stopped asking me if I've heard from Grandpa or mentioning that he hasn't written. She no longer asks if I've seen David. She did surprise me on Christmas, however. I stayed about half an hour after the others had left, and I told her that I was going from there to the airport to fly to Florida for a couple of weeks. "Send me a note to let me know you've arrived," she said...just as plain as day. Of course, as I'm remembering this now, I am remembering that the one thing she managed to clearly ask for, I didn't do. Sigh.

We had our usual prayer and eventually I headed for the airport...only to spend about four hours there and have my flight cancelled due to bad weather. I finally got out the next morning. It was Christmas...at some level.

I want to take a moment to thank whoever it was who brought this blog to the attention of WGBH Morning Stories (in Boston). An edited version of "The First Noel" post from last Christmas was their feature the Tuesday before Christmas. They said that a listener called in and recommended something from this blog for their show. It was a fun thing to do, and I've had mail from those that it helped who heard it on the air or in the podcast. So, to my anonymous benefactor, thank you.