Come in! Come in!

"If you are a dreamer, come in. If you are a dreamer, a wisher, a liar, a Hope-er, a Pray-er, a Magic Bean buyer; if you're a pretender, come sit by my fire. For we have some flax-golden tales to spin. Come in! Come in!" -- Shel Silverstein

Thursday, December 11, 2008

All I want for Christmas is her mind back

When I met her almost seven years ago, she had tears in her eyes.

"I'm so glad you came," she said, as a tear trickled down her cheek.

Meaning, that I had come as the new rector and pastor of St. Paul's.

She had never told anyone in the congregation, but she had been in relationship with another woman for more than 40 years.

Now in her late 70s, she had been married, with two sons. An elementary school teacher.

She had lost her job and her children after she divorced her husband and moved in with "the love of my life," as she described her partner, a librarian.

A 'Boston marriage' they called it in those days.

Shortly after I arrived, she began talking openly about her partner with members of the congregation. Her partner began attending church with her on the "high holy days". None of this even raised a question mark among members of the church. It was simply not an issue.

She erroneously credited me for this 'instant acceptance', adding, with tears in her eyes, "I'm so glad you came."

I've been watching, the past three years, as she has become less and less of herself. She lost her appetite and started losing weight. Then, she would 'forget' how things were set up as she went about her tasks on the Altar Guild. She would ask the same question three or four times and then get embarrassed when she realized what she had done.

Less than a year ago, she came to me, again with tears in her eyes. "I have early Alzheimer's Disease," she said, "and I'm absolutely terrified."

So was I. So were we all.

We had all noticed, but none of us wanted to say anything. We all get old. We all get forgetful. Or, so we said, mostly to brace ourselves against the obvious.

We didn't know it then, but we had begun 'the long goodbye'. What would come as additional surprise was how quickly the disease would progress.

She moved to an "Extended Care Facility" late this past August. Her partner still lives in their wonderful old apartment where they have lived for over 40 years. They talk on the phone every day and she comes to visit several times a week.

So does her son and daughter in law, who take her to church as often as they can. Her other son lives across the country and calls her often. He's coming with his wife and children to visit her at what may be their last Christmas together - whether or not she's still alive. Physically, that is.

She came to church last Sunday. I saw her after the service and promised to have lunch with her on Wednesday - yesterday. It was the third or fourth time in the past four months I've been to see her in her new home. I was not prepared for what I saw.

Like so many other things in her life, she had forgotten my promise. Her face has grown expressionless, but there was no hiding the joy in her eyes when I took a seat next to her and the two elderly Jewish women who keep her company.

"I'm so glad you came," she said as she smiled.

"Ackch," said one of her friends, "So, this is the 'high priestess' she always talks about!" Then, whispering to me, she added, "She keeps insisting that you are a priest. My father was Catholic. I know from priests," she said.

I smiled. "Well, she's right. I am a priest. An Episcopal priest."

"Ah, well," said the other friend, who smiled at my parishioner who was beaming and, looking at the other woman, put her finger under her chin to close her mouth. "Turns out not everything is what we think, either."

We all laughed. I didn't know then that I would be grateful for that little window of humor.

My friend must have asked me six times, "What are you doing today?" When she wasn't asking me that, she was asking, "Where's Ms. Conroy?"

I tried not to look as horrified as I felt, but it broke my heart.

I ordered my lunch and watched in alarm as she pushed her grilled cheese sandwich around her plate. She had obviously lost more weight. Her beautiful camel hair jacket, which she often favored to wear to church, hung from her shoulders.

"Is the sandwich not to your liking?" I asked. "Shall I order something else for you?"

"It just doesn't taste right," my friend offered.

"She eats like a bird," one of her Jewish friends offered.

"Is that rye bread?" I asked, knowing that she didn't like rye bread.

"I don't know," she answered. "What are you doing today?"

I answered her - yet again - and said, "You know, when we would go to Angie's for lunch, you always ordered whole wheat bread. I don't think you like rye bread."

This caused a bit of a stir at the table. I mean, who would not like rye bread although one would have to admit that cheese and rye did not really enhance the flavor. Now, a good tuna salad or maybe some corned beef . . . .

With her permission, I excused myself and took her plate back into the kitchen to ask the chef if she might make another sandwich, this time using whole wheat bread.

Within minutes, it arrived and my friend took a skeptical bite. Then, her whole face beamed with remembrance. "Now I remember. I do like whole wheat bread better." And, she began to eat the sandwich, if not exactly with gusto, at least with a level of enthusiasm I had not seen in a while.

In fact, she seemed to think it called for a celebration of sorts, and ordered wine for the table. Red. She had remembered that she liked red wine. We all seemed grateful for these two small but significant victories over this dreadful, horrible disease.

As we finished our coffee and dessert, someone came to the table to remind her that she had an appointment to have her hair done at 1:30. She didn't want to go. "I don't want you to go." She said to all of us at the table.

"I haven't had this much fun in a long time," she said as we all smiled.

It was a fleeting moment, one quickly robbed of us by the cruelty of the disease.

She then said, "But I suppose we'll have to get back to class. Mr. Crushank is such a dreadful teacher. How can one man ruin such beautiful literature? There's something to be said for tenure, but this old man just needs to be replaced. He's getting forgetful and repeats himself over and over again. I mean, really! It's embarrassing. If I get 'senile dementia' when I'm old, somebody take me out back and shoot me. Please. Just shoot me."

We all listened in horror. It felt as if someone had pulled the rug out from under us. Her two friends looked away. She looked at me and then at them and the smile that had been on her face, the feisty youthful mischief that had momentarily flickered in her eyes faded and was suddenly replaced by that now all too familiar blankness.

She looked at me and said, "What are you doing today?"

I answered her question again and then offered to walk her down the hall to the beauty parlor. She didn't want to go, but her friends urged her and she finally succumbed. But first, she insisted on walking me to the door.

Old habits die hard. She had always done that when I visited her at her home.

I said my goodbyes to the table and, as we turned to walk to the door, one of her friends mouthed, "It's so sad." I nodded and shook my head sadly.

As we walked, we chatted about this and that. Her daughter-in-law had made the beautiful candy cane wreaths that hung on the door. She seemed very proud - as much about her daughter-in-law's efforts as the fact that she remembered.

She wanted to see where my car was parked, so I pointed it out to her. She was stalling, I knew. Next, she would ask me to see it. Even though it was rainy and cold and she had no coat or umbrella, and she had actually been inside my car on a couple of occasions.

The horror of this disease is that, at this stage, at least, she has a sense of when she is lucid and when she's not. She is clearly still capable, however, of thinking strategically. I had no concern that she was plotting an escape - just angling for more time for a visit with me all to herself.

Finally, a look of resignation came over her face. She looked up at me, smiled and with tears in her eyes said, "I'm so glad you came."

"I am too," I said. A small part of that was a lie. We both knew that. As much as it broke my heart to see her this way, it was clear, at least in that one, brief moment of blessed, cruel clarity, that didn't she like being seen this way, either.

"I'll be back," I promised.

"And, I'll be so glad you came," she smiled.

We live in 'sure and certain hope'.

Sometimes, the incarnation can be more painful than birth - or death.


Frair John said...

I wish I could say differently, but it only gets worse. In the end, we lost my Grandfather a year or so before he died. They are allways still in there someplace, and it will shine through.
Just be prepared for the day she dosn't recognize you.

It will hurt.
You and she are in my prayers.

suzanne said...

Thank you, Elizabeth for this post. Although it brought back painful memories of my folks falling into the black abyss, there were the funny times too. I think that was what kept me moving forward, when both of my parents lost the memory of their lives, their bodies remained. My mother had other physical problems and went first, and then Dad not quite a year later. He had forgotten everyone, but he remembered my mother and would ask for her constantly. Many times a day he would ask where she was, and each time he was told she had died, well, it was like the first time.
A week before he died, I reminded him for the umpteenth time that I was his daughter, and his eyes lit up and he said "Yes, your Suzie", and the fleeting moment of lucidity occured, just as quickly, it was gone, and forever.

I have great sympathy for your friend's partner and for you. This must be the most difficult part of sharing your parishoners lives.

Bless you and her.

Elizabeth Kaeton said...

Thanks to you both, Friar John and Suzanne, for sharing your own stories. It's painful to watch, this 'long goodbye'. Knowing that you are not alone in the experience is important.

the Reverend boy said...

I had a former roommate, Tom, whose father had Alzheimer's. Neither me nor my other roommate, Paul, ever met Tom's dad, but we could see and sense how much pain and anguish it was causing.

In the more advanced stages of the disease, he said once,"It looks like dad, sounds like dad, but it's not dad," he said. Very, very sad and tragic.

Prayers and blessings for and upon you, her and her partner.

Anonymous said...

She is lucky to have you as a High Priestess. Any of us would be. My grandmother has Alzheimers. Its a horrible disease that reminds that makes everyone feel so helpless. I cannot see her the way I want to. She is so far away. She doesnt really recognize me even when I do see her. Its hard to see this ambitious and talented woman in this state. Her art room no longer used. Its like walking into some dusty holy place that no one visits anymore.

Muthah+ said...

My mother is deep in this abyss. I can no longer call her on the phone. She can no longer hear, see or speak. The dementia has attacked the portion of the brain that allows her to use her senses. The wonderful mine of her humor is gone--just the blank stare of aimlessness is there. I know she is in there somewhere. Every once in a while I can tell she has understood what I have said to her.

Being so far away from her means that I cannot visit regularly. I am not sure that she will even know me when I visit in Jan. My brother tells me that in a couple of years we will run out of money to keep her in the home that has been her abode for the past 10 years.

I am sorry your friend has faded. I know that your call to St. Paul's was a real gift to her and her partner. We are all "glad you came."

Sara said...

Our family has been blessed not to have to go through this so far. But we have watched it in others. Your story was both heartbreaking and encouraging. It's horrible to have to watch someone you love go through this, it's wonderful that she has a supportive family and a caring pastor to comfort her.

Now I need to call my mother!

Lauralew said...

I work in hospice. Stories like this are common there, but no less heartbreaking. I wanted to weep when I read this. The long goodbye seems so cruel, yet there are times of joy as you described. Thank you.

IT said...

i could not do your job. Period.

My dad, 82, is starting to slip. Not badly, just a little short term memory blip now and then. THe neurologist has him on various drugs.

But he remembers exactly how to get back on the bay bridge from the San Francisco side (and if you know the Bridge, you know that the entrances are viciously hidden!) and he can remember like crystal things that happened 20 years ago.

But he's not quite dad anymore.

Age is so cruel.


Anonymous said...

Thank you for crystalizing the difficulties of this disease. My grandfather had this and others in our parish.
You write so beautifully of our shared pain.

Elizabeth Kaeton said...

Dear Ones,

I did not mean to stir up painful memories or realities, but I fear I have. I am so sorry. Thank you for your generous spirit, your graciousness and your kindness.

And, thank you for understanding. It is such a cruel disease that it makes me wonder: If we can put a man on the moon, why can't we find something - ANYTHING - to relieve this suffering?

Kirkepiscatoid said...

Oh, my goodness, dear Elizabeth; don't be sorry. You made me go back to this post from almost a year ago...

It is now almost one year later. M.J. is a shadow of the person we saw on that day, he now lives in a locked dementia facility. But it is now that day, that moment, I turn to over and over and realize my friend and mentor of two decades is slowly returning to God's care, not ours. I continue to cling to the satisfaction that I helped him obtain the one thing that was most important for his journey. I hope I can continue to see that day when the day comes he no longer recognizes me.

I am sure you helped your parishioner take the steps she needed for her journey. The darkness never wins when the light of God is hiding in there, somewhere.

Elizabeth Kaeton said...

Thanks, Kirke. I read your post of a year ago. Gosh, I hope I'm not writing a similar post a year from now.

JCF said...

Prayers for all of you (esp. your friend, Lisbeth)

When I hear stories about Alzheimer's, I'm grateful my mom died of ALS (And ALS sucks beyond the telling of it! :-0)

Sending up Hail Mary's my dad (88) stays healthy a GOOD while longer, and then kicks suddenly...

Malcolm+ said...

I aspire to cynicism, so it isn't often that something I read on the internet makes me cry.

Shed a tear, occasionally. Choke up a little, often. But not cry.

When I was too young to remember, my parents separated and my mother and I went to live with her grandmother, my great-grandmother, Nana. Mother had spent much of her later childhood living with Nana as well, in order to escape a thoroughly unpleasant home life.

This woman was now acting the mother to her great-grandson in the 60s, as she had to her granddaughter in the 50s. Ironically, she hadn't been able to mother her own children through much of the 20s and 30s because there were few social supports for a single mother, and none at all for a single mother whose father had a bit of money. So her children had spent much of their childhood in an orphanage.

Maybe that was why, when I would visit her in the final years of her life, that much of her confusion turned on how we were related. Who was my mother? Was it Nonie? No, Nana. Nonie is my grandmother. Diane is my mother. Only to get the same question again moments later.

The last time I saw her, my mother and grandmother had brought her to Kerrobert, Saskatchewan to meet her great-great-granddaughter, who had the blessing of being a five generation baby on her mother's side as well.

Nana's confusion is apparent in the official portrait. She clearly has no idea who this little baby is, or why we are all gathered for this picture.

That was June. She died in August.

She died in August. She had died years before.

My Nana taught me about the world. She taught me about God. She taught me about politics.

At her funeral, the wife of our former Premier showed me a book she had written about the North Side Ladies CCF Club in Regina. I had never known that Nana had been its president. The book observed that, in those days, she was caring for her young great-grandson, who had since become a party activist in his own right - a fifth-generation CCFer.

I learned, at her funeral, that Nana had been something of a grassroots political leader, and that past and future Premiers had been guests in our home.

Yet what I remember most about her funeral is the guilt.

The guilt that I had not visited her in nearly a year before she died.

Her confusion was so painful for me that I couldn't see or couldn't care how painful it was to her.

Elizabeth, thank you for visting this woman.

And thank you for telling the story.

Fran said...

I have not had personal experience of this disease, but I have watched as friends have dealt with it. God have mercy.

The whole idea of it terrifies me.

I must say that the first part of the post, where you describe how your arrival at St. Paul's literally changed this woman's life.

It made me think of how Del and Phyllis changed your life.

The great chain of being, the great cloud of witnesses.

This really moves me deeply.

God bless you dear Elizabeth+.

Elizabeth Kaeton said...

Oh, Malcolm - thanks for your wonderful story. Somehow, it helps to know that others have had the same experience. My father's dementia was hidden from us by my mother for the first year he started to fail. After his last admission to the hospital, it became pretty clear what was going on. He went from the hospital to a nursing home and went down rapidly after that. Mercifully, he died within 30 days. It was the worst 30 days of our lives as a family.

Fran - I really didn't do a thing. I just accepted the call to St. Paul's. God did the rest. And you know, if that's the only reason for my being called to St. Paul's, that would be enough. I know it's not, but that's how important this is.

I also understand the fear. Every now and again, when I can't remember someone's name, I panic inside. What a horrible disease.

Anonymous said...

I didnt feel bad at all. Sometimes Elizabeth, Misery needs company. The act that makes hell less hellish is finding someone to talk to who understands. Finding someone who can laugh with you at the inappropriateness of the varieties of hell. In this case, the hell of dimentia.

I thought it was about sharing. I didnt want you to feel so alone, and in doing that I didnt feel so alone in this either.

Elizabeth Kaeton said...

Thanks, SEC. It really does help to share the burden of concern.

Caminante said...

It is so hard when those we love enter into the thicket of dementia and Alzheimers. I fear my mother shall someday go there; there are too many short-term memory blips now. Prayers for you as you continue to walk with your friend and her partner.

Doorman-Priest said...

We went through this with my grandmother. My mother, now in her seventies herself, still speaks of it with tears in her eyes and carries a totally irrational guilt that she didn't "do more" for a woman who wasn't there any more.

What could she have done?