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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Thursday, July 16, 2009

Thinking Backwards


I haven't been to see Mother in ages. The dog is dying and I can't leave him more than three hours at a time and a visit takes 7-8. Work has been over the top with our bicentennial celebrations and it's my busy time of the year with my preaching schedule.

And yet in some ways I don't feel like I've been absent. Because I have had to assume guardianship, months and months of time have been consumed working on her behalf. All that made me wonder if that's how she and my father felt in our growing up years.

My parents both worked in the public schools and were active in both school extra-curricular activities and church leadership. They weren't home much and much of the care for Rob and I was left to my father's mother. And yet they were working constantly on our behalf--to keep us financially afloat in hard times, to provide examples of giving to others and community involvement for us to follow.

My aunt and uncle are moving and thus clearing out stuff. They came across piles of pictures that my grandfather had and just sent me a packet of pictures they thought Rob and I might like. Many I had never seen before, including this one of my mother.

It isn't dated, but I would say she looks to be maybe 10 or 11 years old, which would date it sometime in the early 1940's. It has tabs on the back that indicate my grandfather had it posted up for quite some time. Because he rarely saw his daughter. He had a long commute and long hours and when my grandmother ran off with another man he was a single dad. So my grandfather turned to his grandmother to raise my mother. He remarried when she was about this age, but she still continued to live with her great-grandmother, who lived to see her married.

We all get through life the best we can. It is comedy and tragedy, sometimes leaning more heavily one way than the other. We do what we must and then see what's left over. I have to trust that something in the bond between mother and child allows her to know that I am with her constantly, even though my body is not physically present with her body. I have a feeling she's not often present with her body these days either. Perhaps she is here with me instead.

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Saturday, May 09, 2009

Mother's Day 2009


So tomorrow is Mother's Day. I have a lengthy church speaking gig, so I will not be with Mother. And because of the rift with my stepfather, I now have very mixed feelings about going on days when he is likely to be there.

It's one of those nasty times when all of life piles up. I turn 50 on Monday, remembering the day of my birth--it was in the wee hours of the morning after Mother's Day in 1959. But Mother spent a good part of the actual Mother's Day in the hospital in labor. Turning 50 isn't bad...just a reflective time during a period that is just generally difficult. Menopause...will I have a shred of energy today? This week? This month? The nightmare of getting Mother's disastrous finances in order--a task now in its fourth month--thanked by hate mail and litigation from David. Insane work schedules with the Bible Society trying to navigate the economic meltdown while celebrating our 200th anniversary. A mother who is somewhere, but probably not in the body that bears her name. I sent a lovely card. But the one who taught me to read will not be able to read it now.

A distant cousin came to my booksigning last week (yes, God with Skin On: Finding God's Love in Human Relationships has finally been released! Get yours on Amazon!) and brought with her some pictures and letters that she thought I might like to have. There were some pictures from my brother's wedding, and this one above of my mother and father being walked down the aisle. That was a year before my father died. Mother was 47 in that picture.

I don't imagine turning 50 was a cakewalk for her either. She had been a widow just two years. I was married and out of the house and she was battling the federal government to gain political asylum for my Czech pen pal and his wife who had defected from the then Communist nation and moved in with her. The economic times were also lean in 1982 and she had a 200-year-old farmhouse on 3 acres of land to care for. And menopause (I imagine). And an insanely busy work and church life.

She could have told me about turning 50, if she were capable of telling anyone about anything. But she's not. Her mother might also have shared with her, but my grandmother didn't give a flip about my mother--at least not in any way that showed. She lived in Florida and had her own life. Just like she always had from the day she ran off leaving my toddler mother with no idea why her mother didn't come home.

So perhaps I have all the answers I need about what it was like for my mother to be 50 years old and on her own with bureaucracies to battle, too many responsibilities, oceans of grief for things lost, economic woes, and a body with a mind of its own. She lived it with grace. I shall endeavor to do the same.

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Sunday, March 15, 2009

Shut Out


It's been quite awhile since I've posted, but not for want of activity. Things have been over the top in issues surrounding Mother's care, but they have been issues with another family member so I am not at liberty to write about them in a public blog. At such a time, I hope that Mother is as unaware as she seems. She was always so precise and organized, especially on financial matters, that she would have a cow if she understood.

In any case, I will only say that I am now the guardian of her estate. We'll leave it there.

All my visits of late have been to huge state and federal bureaucracies on her behalf, so it was only yesterday that I was able to see her instead of just her social security number. I met Rob up there and picked up a packet of doctor's information. Not that there's anything new, I just haven't had access to such a report since 2006. Along with the Alzheimer's and Parkinson's, it says she has a humeral neck fracture. I think that must have happened that time at The Birches when she broke her arm. Probably why she lists to the right.

In the last couple of weeks I've caught myself sitting at my computer...listing right. I straighten up in a panic!

When Rob and I arrived they were wheeling Mother back from lunch. They brought her into the TV room where there were a lot of others, more or less watching TV, and where there were a couple of other chairs for us to sit and visit. Rob was the first to notice that, for the first time in as long as I can remember, her glasses were not sliding down her nose. They might even have been new glasses. Hooray for that!

Of course the irony was that her eyes were shut. For the entire one hour and fifteen minute "visit." They were shut when we saw her from a distance being wheeled toward us, and she never opened them. They looked purposefully shut and her brow was furrowed, even as her jaw continued its independent, spasmodic life. But she was not asleep. She did not appear actually tired until the end of the visit when she yawned some. As we sat there trying to get her to open her eyes I thought she might have been tired from a morning visit and said, "Maybe David was here this morning." She instantly said, "No." She spoke only one other time during the visit...two words that were much softer and that I didn't catch later on.

In that later part of the visit (which is when this picture was taken) she seemed more relaxed. She also was doing some odd things with her left arm. Her right isn't much good. She lifted her whole arm up and out as if to take something out of the air. Did that twice. Each time I went over to her chair, took her hand and put my arm around her, but she didn't respond. And of course didn't open her eyes.

So I think she was elsewhere. Somewhere more pleasant. Maybe she was in some pain earlier that furrowed her brow and she decided to get out of Dodge and go to wherever souls go when they need a break. Of course she was also in a different room. The TV room was more and more crowded so we went out to the lobby area.

You can see in the picture that her hair is down to her shoulders. The last picture of her with hair that long was when she was about 6. She has always worn it quite short. So Rob and I arranged for a haircut and showed the staff a picture of how she has always worn it. We checked out her clothes and found an odd assortment of things, including some very frilly blouses. Nothing looked really comfortable. I turned to Rob and said, "Should you ever be caring for me in a situation like this, give me sweats. I want comfort. And do not, under any circumstances, force me to wear a bra."

As we went to leave, I gave her a kiss and she kissed back. But she never even once opened her eyes. Maybe she does have new glasses and they're giving her a headache. But I think she travels somewhere else--to a place that is green, with flowers. To a place where her mind comprehends and where her only guardian is her Lord. One day she'll stay there, and I will not try to get her to open her eyes.

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Monday, November 24, 2008

Thanksgiving

Okay, so she looks ornery. Like you don't want to be slow with her turkey. But unlike so many Alzheimer's sufferers, she has never had that mean streak take over. Although you can't tell that from this picture.

This was taken today at the Clough Center. Instead of having a Thanksgiving celebration on the actual day, they had it today. And they had their act together. I drove into the parking lot about 10 minutes before 12 and was greeted by a parking attendant. He directed me to the next attendant, who heard via push-to-talk before I got there that I was attending the dinner. I went through three or four such gentlemen who guided me right into a parking space. Very nice.

They were equally prepared inside. I walked in, was greeted promptly by a friendly hostess and told her who I was visiting. A quick check of the seating chart told her where to take me and I was escorted out to the sun room where David and Laurie were already waiting with Mother. The tables were set beautifully, a flautist played in the background, and young servers came around with water, cider, and egg nogg. The food was served at each table and was quite good, although you have to remember that for me anything I don't have to cook is automatically gourmet. The above photo came courtesy of the Clough Center staff who came around with a camera. I had the photo in my e-mail by the time I got home.

It's a nice idea having Thanksgiving early, although being on a week day, Rob and Stephanie weren't able to get the time off from work. But it acknowledges the dilemma of holidays at this stage of things. To spend the actual holiday at the Clough Center is hard. It's hard because of the travel on a busy travel day. It's hard because of the added emotion of family holidays. It's hard because all family traditions go by the wayside when you celebrate in an institutional setting.

Putting the holiday on another day recognizes that most of us need a more normal setting for a Thanksgiving holiday, but also need to be with the ones we love in some semblance of the occasion. Mother has no clue that today wasn't really Thanksgiving, so we got to celebrate that with her. Come Thursday, we will celebrate together as a family. Her place will be empty, which is always brutal, but in some ways it's not unlike those Christmas times when you saw part of the family on Christmas morning, others Christmas night, and still others across the next week. It would be great to have them all together at once, but they were still all a part of the holiday picture.

Mother was fairly alert today, although she made no responses other than to nod in a way that indicated she preferred pumpkin over apple pie. They've increased her Parkinson's medication, which makes me wonder again about the connection between Parkinson's and Alzheimer's. When she first began the Parkinson's meds back at The Birches, she showed mental improvement. I've only seen her twice since they increased those meds, but both time she has been a bit more alert.

So it's Thanksgivng. I can't say I'm thankful for her state. In fact, I'm pretty mad about that. But I'm thankful that I could take the time from work today to share a meal with her, even if she thought I was some stranger who dropped by for lunch. I'm thankful that the Clough Center made such provisions and took such care, realizing that most of us live torn between the guilt of wanting to celebrate holidays at home but feeling we need to be with our loved ones. Today was like a guilt-free pass to spend Thanksgiving Day in whatever way we could find to dull the pain.

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Tuesday, July 22, 2008

Next Chapter

Well, Rob and I did visit Mother a couple of weeks ago. There isn't all that much to report from that. She was in a new room at The Birches, a shared room with another resident. But the shared rooms at The Birches are very nice. A full wall separates the beds with a common living area. All her things were moved over, although the pictures weren't put back up on the wall since another move would be imminent.

I don't recall that she spoke while we were there. Rob and I looked through the old yearbooks, which included the years of each of our graduations from the same school. So that provided some diversion as we showed Mother various pictures of us and her and others she worked with for so many years. We stayed about an hour and laid her down on the bed before we left. She was pretty tired.

In the intervening weeks things could not be worked out for Medicaid in time to get the bed available at Pine Rock Manor, where Rob and I had left a deposit on Mother's Day. A note from David tonight indicates that tomorrow she will move to The Clough Center in New London, NH. This was the place that Rob looked at right after we both looked at the place in Concord that looked to me like a prison cell.

Rob's report (and he sent me pictures) was that The Clough Center was quite nice and with it's affiliation with one of the best hospitals around, that is a plus. The negative for me is that it is a full three hours one way (without traffic) from me. But it is only half an hour from where Rob now lives. Apparently she will be with two other residents to begin with. I don't know any other details at this point. Since I didn't know this was coming and have a full day booked in the office tomorrow, I won't be able to be there for the move. Of course it is also much further from where David lives and I wonder if he will move. I don't know. He is renting now, so it is possible.

I have a lot of anxiety. I know the move has to happen and The Clough Center has a good reputation, including from some of our extended family who have some experience with it. When Rob first visited there months ago I liked what I found on the web, including several artists whose websites listed the Clough Center as a place where they performed or displayed their art. Colby-Sawyer College also has a student program there. All good.

But of course she won't understand what is happening or why. At least I think she won't. It's one of the hardest things in this disease. We have no idea what she understands--whether the problems are greater in communication than perception. I wonder if she will notice that there are no more familiar faces from day to day. But then I don't know if the faces she now sees every day are familiar or if they seem new to her each time.

I just want her to feel as happy and contented as she can. When I think about what I hope for her, my eyes well up. I can have no part in helping it be one way or another. Que sera, sera as it were.

So for those of you who might read this soon, please pray for a smooth and happy transition. And pray for the staff at the Clough Center as they provide not only for my mother's care but for all those who find themselves in such circumstances.

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Saturday, June 14, 2008

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!

ALZHEIMER’S DISEASE SUPERCEEDS DIABETES

AS SIXTH LEADING CAUSE OF DEATH IN THE UNITED STATES

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 www.alz.org.

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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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Tuesday, February 13, 2007

Harvey

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.

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Tuesday, February 06, 2007

From a visitor

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

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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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