Mondays With Mother: An Alzheimer's Story

Mother's Day 2009

2009-05-09T07:47:00.000-07:00

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.

Shut Out

2009-03-15T06:21:00.000-07:00

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.

The cold

2009-01-15T11:21:00.000-08:00

It's a new year and a lot colder. I didn't go up to New London on Christmas. How do you not visit your mother on Christmas? I don't know. But I didn't. Neither did I go anywhere else. I stayed home and played World of Warcraft with a friend in Atlanta.

I guess it's that the drive is so long and with my brother elsewhere, he would not be able to meet me there and lessen the coldness of visiting with someone who is both present and absent at the same time. I guess I simply couldn't face Christmas in real life, so I went to a virtual world and opened virtual presents under a virtual tree from Greatfather Winter with the thousands of others who couldn't face Christmas in real life either.

But I had two weeks off from work, and if I didn't get up there in two weeks off, I wouldn't ever let myself off the hook. So I planned to go on New Year's Day when the traffic around Boston would be lighter. And it snowed. So I didn't go.

But I did go the day after New Year's and Rob and Stephanie met me there. I called ahead and the gracious staff at the Clough Center adjusted her nap schedule so she could be up and at least quasi-alert when I arrived at 1 pm. I arrived about half an hour before Rob and Steph and saw that Mother had new braces on her hands and forearms.

We had noticed in prior visits that her left hand seemed to always be curled up in a ball...although it looked more like a claw than a ball. When we asked about the braces, it was indeed that problem that they were trying to forestall. Her jaw moved around like an independent contractor. I mentioned that to the nurse who said it rarely does that. But it does that every time I visit for the entire visit. Ditto for other visitors. We concluded that the excitement of the visit triggers the response.

As we sat there just the two of us I said to her, "I wish I knew if you could understand what I say. I have no idea if you understand the words but can't communicate a response or if everything I say just sounds like jibberish to you." Maybe it was just my imagination, but she clearly looked like she was trying to say something in response. If so, she could not successfully form any words. Maybe her jaw moving is her body trying to remember how to speak.

Rob and Stephanie came and we chatted for well over an hour. Mother watched quite intently. Perhaps she knows. But her mind can't be entirely clear. If she could understand everything and just not communicate, that wouldn't explain her confused actions back before she lost her ability to communicate. When she couldn't follow the directions on signs or when she called me to settle an argument she was having with David about what day of the week it was.

I hadn't wanted to go. But...as usual...I didn't want to leave either. I wish we had health care that enabled us to care for our loved ones--or at least to live with them while someone else provides the care we cannot. It would take some of the chill out of Christmas.

Thanksgiving

2008-11-24T15:03:00.000-08:00

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.

The Distance

2008-11-11T10:23:00.000-08:00

Yes, I know it's been a long time. As I missed two book deadlines (the manuscript is finally done and submitted--thank you, God), and work was insanely busy, the stress of feeling I should be making the long trek north to see Mother combined with the work disasters looming should I take that time pretty much shut me down. Combine that with the memory that the last time I was there she slept through the entire visit, and I ended up deciding to get the work done at home.

Not that she has been absent from my mind. I posted earlier about my sadness that she couldn't understand what was happening on the political scene as Barack Obama gained his party's nomination. That was magnified a million fold on election day. When I went to vote that morning, I circled the bubble for Obama/Biden three times. One for me, one for my late father, and one for Mother. In the evening, I took their picture off the wall in my study and propped it up in front of the television so we could all watch the returns together. They would have been so happy and proud. Strange, I know, but these are strange times.

And then Sunday I went up for a visit to the Clough Center. I arranged to meet Rob there, and he called ahead to make sure they had her up. Now why didn't I think of that? Meeting Rob for visits is easier now that he lives only about half an hour from her new home, and his presence and conversation means that we stay longer than either of us might otherwise. Sunday we stayed about two hours.

She was having a pretty good day and was fairly alert. I asked her if she had heard that we elected a new president. She perked right up and said, "Yes." Since it was a Sunday, I also asked if they had church services there. Again she answered, "Yes." Actually, one was going on in the other room as we visited. Those were the only words she spoke during our time, but they were relevant to the conversation, which is notable. Maybe she just got lucky, but her expression seemed to indicate some clarity about the answer.

The whole time we were there, her jaw moved around like a restless school child. Parkinsons. A nurse came over to us and I asked about that, since David indicated that they had recently increased the dosage of her Parkinson's medications. The nurse was very attentive and made some notes in her file for the doctor to review. She also promised to help with a problem that has been going on for years--her glasses sliding down her nose. It seems like the solution to that should be simple, and I've been fussing about it since long before she left The Birches. But there they were again, never able to stay where they should for more than a minute--their trek down her nose accelerated by her ever-moving jaw.

As Rob and I got up to go, I leaned over and gave her a kiss, and in that moment I saw her there. In behind the eyes where the soul lives and occasionally gets the chance to peer out through the fog. It was a sad soul on Sunday that obviously didn't want us to go. But I had many hours to drive home. And a job that beckoned. It took most of that trip home to get over it.

Sleep well...

2008-08-28T21:58:00.000-07:00

I visited Mother last Sunday afternoon before heading to an event with Rob and Stephanie. "Visit" of course is a relative term with her, and Sunday it was even more so.

Arriving about 2 pm, I found her, along with her now three roommates, asleep in her room. Nap time after lunch, I suppose. I went over to her bed in the corner by the window but had to move her wheelchair to get to her. When I moved it, the most awful alarm went off, blaring for almost two full minutes until a nurse could get down to shut it off. Mother did not even open an eye. She was out.

There were no chairs, so I sat on the bed. No response. I gave her a kiss, shook her a bit, and called to her. Nothing. She was clearly sleeping...I don't want to imply she had slipped away...but she was down for the count. So I just sat there with her for about half an hour.

There was a time when her Parkinson's took over her jaw and her brow furrowed. I could not ease it. So I just stroked her hair and prayed with her until it was time to go. She would not know I came, except perhaps in some mystical or subliminal way. But then who knows if she knows I have come when she's awake.

Here's a picture, by the way, of the visit the week before, taken in the dining room of the new place.

It all makes me wonder what being alive means. I've especially thought about that tonight, as I type in the wee hours of the morning after Barack Obama's acceptance speech at the Democratic Convention, too keyed up to go to sleep. She can't wake. I can't sleep.

I want her to be alive tonight of all nights, but not just alive. I want her to be awake. I want her to know about the history that was made tonight, because I know she would cry as I did both for the distance we have come as a nation and for those who had to suffer and die to bring us here.

I remember a couple of years ago reading old letters from my father to my great Aunt Anne. It was 1955 and my parents had been married just one year. It would be four years before I came along and my parents were living in California as my father served time in the Army. They didn't have money for a whole year's rent, so they just had a place in the winter and spent the summers camping, taking the opportunity to travel a bit.

On one of those trips to northern California, they joined with another couple and decided to splurge and stay at a motel. Try as they might, however, they could not find a motel with a vacancy. It was about two-thirds of the way through the letter that my father inserted a parenthetical explanation that the reason all the motels were filled was that there was no room for colored people. The couple with whom my parents were vacationing were black. I found that remarkable for 1955 and it helped me understand why my parents took up the cause of civil rights in the sixties.

I've written about this before...maybe even here...but it stays in my head. All I knew was that Billy Wiley was my friend. I didn't understand why the boys in second grade would try to beat him up. I didn't understand why my parents had to go to town meetings and fight to get Billy's family permission to live up the street or why there had to be meetings at our church about them coming to worship with us. I didn't understand why my father wanted to take pictures of Billy and I together--slides that he showed at a school assembly at the high school where he was a Vice Principal. Why did high school students I didn't know want to see pictures of Billy and me?

Billy was just my friend. We once sat together in the corner of the mud room of my house to eat dog biscuits because the dog would so obviously do anything to get one of them that we figured they must be pretty good. They weren't, and we laughed as we spit out the dog's gourmet treats. When I fell for my first boyfriend, Billy carried secret messages between us. I didn't know then what I know now about the world that Billy and his family inhabited as a black family in an all- white town in the sixties, even in New England.

But my mother knew. And my father knew. Maybe because they had once joined their friends in a tent because there was no room for them at the inn.

All of that came back tonight, and as I cried at the walls that came down and the promise of a new day, I cried even more that Mother, who would have given her eye teeth to see this day, was asleep. She can't know. My father, from his place beyond the veil, knows. But Mother sleeps, perchance to dream.

The Clough Center

2008-08-16T16:04:00.000-07:00

With a week-long preaching gig in New Hampshire, I was only a little over an hour away from Mother's new home at the Clough Center in New London, NH. So, on the day I had off, I headed north with a friend from the Dover church.

I had written ahead to find the best time to go and was told late morning, so we planned to arrive about 11 am. I new the center was very close to New London Hospital. Turns out it is actually attached to the hospital, which I take as a good thing. I think ambulance rides are probably pretty traumatic when you don't really understand what's going on.

We came into a lovely lobby area with a cheery dining room off to the side. The place where the rooms are is definitely nursing home, rather than the sense of residence there was at The Birches, but it was clean and nice with no smell. We were told that Mother was in room 105.

That wasn't very far from the nurse's station...a room with four beds and two windows with a nice view. Mother however was not in any of the beds. So we came back out to look for her and saw that they had her up walking...using a walker with a belt tied around her to help catch her if there was a problem. It was good that they had her moving.

She had already been up and down the hall, so they sat her in her wheelchair so we could have a visit. The wheelchair is new--she didn't have that at The Birches, but it makes much more sense with her mobility as limited as it now is.

We greeted her and she had a bright smile for each of us. There was some activity going on in the sun room, making that unavailable and the TV room was a bit crowded. But it was a nice, sunny day so I wheeled her outside where there were a couple of benches. One of the nurses brought us each a bottle of water, one with a straw for Mother. As we sat down, Rob arrived.

So the three/four of us visited for about 45 minutes. Mother drank water when I gave it to her every so often. It turned a bit cooler so we went inside and headed for the dining room. Each table was set for four people with nametags at each one. Apparently there is an aide at each table to help residents.

We had just gotten settled in the dining room when David and Laurie came in, so we had quite a crew. We visited a few minutes more, took some pictures (which I'll have to post later when I'm home and have the cable for my camera) and then said goodbye. I'm headed up to visit Rob and Stephanie next weekend so as I kissed her goodbye I said, "I'll see you next week." "Okay," she said cheerily. An appropriate response and something she would normally have said. So maybe it was lucid--or maybe it was luck. But it was nice in either case.

So...no great moments of revelation or insight, just a good feeling about her new home and a sense that however difficult it may have been to move, she seems to have weathered the storm. Of course she always was adaptable. Where Mother lived was never as important as who lived with her and, today at least, we were all gathered together in the same place. Sort of like the Upper Room, only without all that rushing wind and tongues of flame.

But I do think the Spirit was present, just as the still, small voice. The voice that simply says, "Okay."

Next Chapter

2008-07-22T16:36:00.000-07:00

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.

Remembering in the body

2008-06-14T09:48:00.000-07:00

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 community@spiralarts.org or write them at 156 High Street, Portland, ME 04101.

Press release from the Alzeimer's Association

2008-06-14T09:41:00.000-07:00

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.

For All the Saints

2008-06-14T08:32:00.000-07:00

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!"

No Win

2008-06-14T08:15:00.000-07:00

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

2008-06-14T07:36:00.000-07:00

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.

Your Kindness

2008-05-31T11:13:00.001-07:00

I have some actual posts to make about May events, but I'll do that separately. First I want to respond to the incredible kindness that some have expressed both in writing to me personally and in some of the comments posted here about starting up a fund to keep my mother where she is.

Let me say a heartfelt thank you for the thought and a strong Please don't as a recommendation. As I'll post about shortly, I think we have found a suitable place. I've been waiting to post until an actual move, since you never know until it happens, but it does look hopeful that she will be going to a good place.

Of course moves for people with Alzheimer's are never ideal, but rarely is life ideal. One of the things I have not posted about are personal family dynamics related to all the issues of my Mother's care. When it comes to thinks like accepting funds from others, you probably know from within your own families that such gifts bring up a lot of issues with people and my family is no different. In our case, such a fund would bring as many difficulties as blessings within the family.

I also would not want my postings here to be seen as manipulation. Many write to me to say they have read with tears in their eyes. I'm all too aware of the way that some use heart-rending stories as a way to scam money (have you gotten those sob stories from Nigeria in your e-mail?). While I know such things were not even in the realm of thinking of those who have suggested a fund, but I feel that the presence of a fund would compromise my ability to post honestly in the future by creating a conflict of interest.

So while I am humbled by the offer, for several reasons I would ask that you direct financial responses elsewhere. Maybe you contribute to Alzheimer's research. Maybe you help someone you know personally afford Long Term Care insurance or fill someone's gas tank to help them visit a loved one more frequently. If my story motivates your generous nature, I'm thrilled. But I don't post so that the generosity will be directed at me. This isn't really about me--it's about all of those who suffer with Alzheimer's and those who love and care for them. Helping me might solve one issue for a limited amount of time. But helping to fund a cure or passing on just a tank of gas to help someone torn between wanting to see a loved one and wanting to put food on the table...those things will make a more lasting difference.

I hope this doesn't sound ungrateful...nothing could be further from the truth. I am deeply moved yet respectfully request that anyone feeling like they want to help, do so in a different way so that our family dynamics are not complicated and so that my postings can remain free of the appearance of a conflict of interest.

Time goes by

2008-05-05T18:58:00.000-07:00

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

2008-02-23T06:04:00.000-08:00

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

2007-12-26T15:17:00.000-08:00

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

2007-12-04T06:36:00.001-08:00

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

2007-12-04T06:11:00.000-08:00

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

2007-10-28T13:51:00.000-07:00

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

2007-08-25T14:20:00.001-07:00

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

2007-05-17T10:55:00.000-07:00

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

2007-02-13T18:06:00.000-08:00

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

2007-02-06T18:37:00.000-08:00

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

2007-01-17T11:02:00.000-08:00

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.