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

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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Wednesday, January 17, 2007

Broken

Joan in a sling
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.

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