Mondays With Mother: An Alzheimer's Story

In 2002 my mother was diagnosed with Alzheimer's. It is a hard road, and we live it one day at a time. This is a chronicle of her disease and my Monday visits with her.

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Name: Anne Robertson
Location: Plymouth, Massachusetts, United States
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Saturday, June 14, 2008

Remembering in the body

I'm on a posting spree today but wanted to share one bit of information I got while here at Conference. I guess it's not really new information...just confirmation of an important facet of this terrible disease.

It was early on at The Birches that one of the staff there told us that their philosophy was to create a steady stream of happy moments. She explained to us that even though a person with memory loss may not remember the event itself, the body retains the emotion. A person will stay happy after a pleasant event, even though they haven't got a clue how they got happy in the first place.

Yesterday at lunch I was with a group of other clergy who lead non-profits as I now do. We each told stories that reflected the work we do and the organizations we serve. One woman spoke of her work at Spiral Arts, Inc., a non-profit in Portland, Maine that seeks to transform through spirituality, art, and learning. They serve people in all sorts of different circumstances, but for her little introduction, this woman spoke of what she considered their most meaningful work--their work with elders with dementia. They work with this population to create artwork and she told of a group from a residential facility in the area who they spent an hour or so with creating various works of art.

While those who participated had various levels of success with their projects, depending on their limitations, she noted that the staff at the facility reported that while most of the residents didn't remember a thing about doing the artwork, there was a sense of calm and tranquility that permeated the whole facility for the entire day.

It was an important reminder, and since Spiral Arts (like many non-profits in these difficult economic times) is struggling to keep its ministry afloat, I thought I would give it a plug here. You can follow the links above to their website, contact them at or write them at 156 High Street, Portland, ME 04101.

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Press release from the Alzeimer's Association

My posting has been pretty heavy of late. This press release isn't great news, but at least it's not emotional!



CHICAGO, June 12, 2008 -- Alzheimer’s disease is now the sixth leading cause of death in the United States, according to the Centers for Disease Control and Prevention (CDC) National Center for Health Statistics. The CDC estimates that 72,914 Americans died of Alzheimer’s disease in 2006. With an unprecedented historic population shift of 78 million aging baby boomers in the country and this disease poised to strike 10 million boomers - it is clear this escalating epidemic must be addressed now.

Today, as many as 5.2 million Americans are living with Alzheimer’s disease. The Alzheimer’s Association’s 2008 Alzheimer’s Disease Facts and Figures report revealed one out of eight baby boomers will develop this disease that currently has no effective disease-modifying treatments to halt or delay its progression. Experts predict by 2010, there will be almost a half million new cases of Alzheimer’s disease each year; and by 2050, there will be almost a million new cases each year.

“The CDC’s announcement that Alzheimer’s disease jumped from the seventh to the sixth leading cause of death should serve as a wake-up call to the nation,” said William Thies, PhD, vice president of Medical and Scientific Relations at the Alzheimer’s Association. “The fact that there are no effective treatments for Alzheimer’s has allowed the disease to pass diabetes. It is vitally important that we increase Alzheimer’s research funding to slow or stop the progression of this devastating disease.”

Researchers are closing the gap in developing accurate ways to diagnose and treat Alzheimer’s. Although there are several promising drugs currently in Phase III clinical trials, insufficient research funds are committed to research focused on Alzheimer’s disease treatment and prevention. This situation is further compounded by the fact that for the past five years the NIH budget has been essentially flat. The personal and economic impact of Alzheimer’s is so large that no one entity can solve the problem alone. It will require all levels of government and the private sector working together to diminish the human and economic cost. It must begin with accelerating research.

The CDC also reported that while deaths from Alzheimer’s disease were on the rise, other chronic conditions were on the decline. Between 2005 and 2006, the largest decline in age-adjusted death rates occurred for influenza/pneumonia (12.8 percent), and also included chronic lower respiratory diseases (6.5 percent), stroke (6.4 percent), heart disease (5.5 percent) diabetes (5.3 percent), hypertension (5 percent), chronic liver disease (3.3 percent) and cancer (1.6 percent).

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit

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For All the Saints

I am catching up with my posting today (this is my third this morning) by ignoring my other responsibilities. I'm in a hotel room in northern Mass. where I stay during the Annual Conference for the United Methodist Church in New England. It's a required gathering for UMC clergy with business and worship and learning experiences stretching over four days.

In most years I have had at least some responsibility at Conference with some years requiring me to be on the dias more often than not for some reason or other. This is where I've won preaching awards and preached to a room of 1200 people. This is where I've helped to organize and direct the ordination process and shepherd those being ordained through that life-changing first step. This is where I've taught about stewardship to the whole body and to small groups and where I've sat for book signings and listened to the joys and frustrations of colleagues.

This year began as they all do with the executive session of the clergy, the night before all the others arrive for Conference. Since my stepfather is also UMC clergy, David was there, and it was the first I had seen of him in several months. There are still some issues to be worked out before Mother can move to Pine Rock. She is still at The Birches but has moved into a shared room, just across the hall from the very first room she had there. David is a strong man, resolute and determined to care for his wife at all costs. But the costs were quite evident in his body, even though his words were matter-of-fact, and it set me back. Just as not visiting my mother on her birthday proved to be as difficult as going, it doesn't become easy for the immediate caregiver, just because your loved one is cared for in a facility--even a good one.

There wasn't much time to absorb that initial shock before the session started and required my attention. The beginning of that session each year harkens back to some of the oldest Methodist tradition--singing the hymn "And Are We Yet Alive." While it has an ironic humor as we all look back over difficult conflicts in churches and circumstances, it was based in the very real facts of life in the early days of the Circuit Riders. The life of those early Methodist pastors who traveled on horseback from church to church to church was so difficult that the life expectancy for the Circuit Rider was a scant 35 years. And so each year when those who had made it through gathered, they began with the grateful words..."And are we yet alive to see each other's face. Glory and thanks to Jesus give for his almighty grace."

And so I sang and my eyes welled as I wondered just how alive Mother was, or David...and yet we still could see each other's faces. But those faces showed the worry and the confusion and the pain. How many more years?

Then the session moved to what is always the next order of business. The remembrance of those who are not yet alive...those clergy who have gone to be with God in the past year. The names are read. Both clergy and their spouses. Would it be next year that Mother's name appeared there as a clergy spouse? Would David's name appear before hers?

The naming finished and we rose to sing all six or so verses of "For All the Saints." It's one of my favorite hymns...both for the words and the tune. And I sang it with gusto...until about the third verse or so when memories crowded in, like too many guests in a small room. Every Sunday growing up I stood in church with Mother and sang hymns. Until my teen years we stood side by side in the pew. Then I joined the choir, so that I stood in the choir loft at the front and Mother and I sang face to face.

Somewhere in verse three, Mother appeared there in front of me...singing the Alleluias full force. And then she merged with my singing as I could see my own body adopting her posture and enthusiasm in song. I was singing just as she did up until this disease took hold of her. Who was singing? Me? Her? Both of us? God? Was she there? Was I there? Was it now or some year in the future? Was it the clergy session of Annual Conference or her memorial service? "Oh blest communion, fellowship divine. We feebly struggle, they in glory shine. Yet all are one in thee for all are thine. Alleluia! Alleluia!"

By the end of the three-hour session, I was exhausted and came back to my room and dropped. So much emotion lurks there, just below the surface. I went back to Conference yesterday for the first full day of sessions. I spent all day on the campus and well into the evening. But I only attended about an hour's worth of sessions. Instead of tending to business as I normally do, I visited with other wandering colleagues and friends. We talked about many things, including our frustrations with the institutional church. And to too many I found myself pouring out my griefs and frustrations about my Mother's circumstance.

I came back to the hotel about 9:45 last night and turned on the TV to catch up on the news with my favorite MSNBC anchors. They were all teary-eyed as Tim Russert had a heart attack and died right there at the office yesterday afternoon. He was 58. His son had just graduated from college. My father was 47 when he died of a heart attack. Right after I graduated from college. I knew how they all felt. I knew what was happening in the mind and heart of his family, the shock and disbelief of his colleagues. And even though it has has been almost 28 years since that day, I found that those feelings were still just below the surface.

All of which means that I decided to skip Conference today entirely. I have to leave early tomorrow anyway to preach in a local church and it seemed like what was just below the surface didn't have any intention of staying put there at the moment. So I have stayed in my room to grieve and regroup.

"And when the strife is fierce, the warfare long, steals on the ear the distant triumph song. And hearts are brave again and arms are strong. Alleluia! Alleluia!"

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No Win

I am an evil child. All of our family has birthdays in either April or May, and Mother's 76th birthday was May 26. The date fell on Memorial Day this year, so I had the day off. But I didn't go to see her. I didn't get a card in the mail. I felt wretched.

Oh, I had my excuses. I was exhausted. I was completely stressed out by my next book deadline and my complete lack of progress in writing compared to the relentless march of the days. I knew she didn't know her birthday from Christmas--or at least I think she doesn't. Who knows, really? I had the financial concerns of multiple trips that far away with gas prices ever higher. I had been on Mother's Day and was expecting a call from David any time to help with a move to Pine Rock. I had to be out of town presenting at a conference the next weekend...this was a rare time to be home and write. David would visit on her birthday, she wouldn't be alone. Traffic on Memorial Day would be bad coming and going.

Visits are hard. Because of the distance, just an hour's visit takes all day, costs an ever increasing amount of gas money, and affects me emotionally the day before, the day of, and the day after. But it really didn't matter. In not going, the only thing I saved was the money. I stressed the whole weekend about whether I would go or not, and then beat myself up for days afterwards for being a wretch of a child who wouldn't visit her mother on her birthday. No writing of substance happened.

A lose-lose scenario. One would hope I would learn, but chances are I won't.

Mother's Day

May 11 was Mother's Day this year. May 11 is also my birthday. On Mother's Day in 1959 my father took a picture of my mother sitting on the stone wall in front of our Rhode Island home. She was perched as gracefully as someone about to give birth could be, with a lovely backdrop of yellow forsythia. Later that day the labor pains began and she went to Kent County Memorial Hospital for the birth of her first child. At 2 am on Monday morning, her labored breathing gave way to my first breath.

Even though it was technically the day after Mother's Day, we have always connected my birthday to Mother's Day. And every so often she and I would go out to the stone wall when the forsythia was in bloom to take a picture of the two of us in that spot. I need to find one of those pictures and scan it so I can post it here. Climate change has meant that these days the forsythia is long past in New England by the time May 11 rolls around, but I still think of her when I see the bright yellow flowering and feel comforted when I have some in my yard.

This past Mother's Day, however, Mother's Day was my birthday and I traveled up to Concord with several agendas. Of course I went to be with Mother--to bring a card, and to be with her on Mother's Day at least for a little bit. Rob and Stephanie and Marie all met me at The Birches about 11 am. Rob and Stephanie beat me there and were sitting with Mother at one of the dining room tables. I gave Mother a kiss and wished her a Happy Mother's Day.

While she was in a pleasant mood, there was no real response. I gave her my card. Normally I would read a card aloud to her, since I'm unsure what she can make out of the written word these days. But I couldn't read the sentiment on the card without bursting into tears, so I just let it be as she looked it over carefully. Much of her life as a teacher revolved around paperwork and she is always very careful with papers. She "organizes" them and works to make sure they are in their proper place--which of course usually has little to do with their actual proper place, but she is diligent and focused when she has a piece of paper in her hands. When we celebrate other occasions with her, you have to be careful. If someone gives you a card for some occasion and you let Mother see it, you may never get it back. Or she may decide that organizing it means tearing off one part to put in a special place.

Before I arrived Rob had been prepping Mother and after the Mother's Day cards had been properly organized, Rob tried prompting her. "Do you remember who has a birthday on Mother's Day?" "Who right here has a birthday today?" No response. "Today is Anne's birthday" he said. Nothing. Of course who knows what happens inside the mind. Maybe she knew at some level. Maybe not. I doubt that she knew it was Mother's Day either, despite the words and the cards. But she seemed contented, which is about the only gift left to give.

As the time came for lunch, Rob, Stephanie, Marie, and I went to the next item on our agenda: Checking out another facility where it might be possible for Mother to move. It's about half an hour further north in Warner, NH. Pine Rock Manor. We had a deposit check to hold a bed for her if we liked it. Like the Birches, Pine Rock is an assisted living facility. It is not solely for the memory impaired, as The Birches is, but it is their stated specialty. And they accept Medicaid.

We saw rooms...both single and shared...and they were lovely and peaceful. She could bring her own furnishings and decor, as she could at The Birches, and the staff were pleasant, down-to-earth, informative and kind. We left the deposit.

Then we moved on to a little mom and pop place in Warner for a birthday lunch. The sign on the door indicated that with the state of the economy they could no longer be open for supper. Fitting since the economy was also on my mind as I contemplated an extra hour of driving time for every visit. I would be able to get to Warner even less frequently. But Rob would be closer, and I would sleep better at night knowing that she was in the atmosphere at Pine Rock than I would have if she were in the first prison cell that we saw.

There may even be forsythia on the grounds.