Thursday, December 29, 2011


I just finished reading the book "The All-Weather Friend's Guide to Alzheimer's Disease."

Mary M Cail ends her book with this thought: "Dementia is a hard road to travel. Keep someone you love from traveling it alone."

Life is hard, having a friend to travel along with you is wonderful.
I am so grateful for Mom's friends, who visit with her still.

Wednesday, December 21, 2011

praying with Sam

When I got to Mom's yesterday, she was in a state of agitation. She couldn't find her church newsletter. She couldn't remember the name of her minister.
"I remember Rev. H__" Mom said "I really liked him" (Rev H_ was from her church in the 1940's.) Mom needed to find her newsletter. "Tell me his name!" she yelled at me.
"Your church has a new interim minister, Mom, I don't remember his name."
"Well you go there too! Why don't you remember!" she barks.
"I don't remember his name." I don't correct her, I don't go to her church, I really don't remember.

Apparently one of the aides had been in her room earlier, to invite her to a worship service later in the afternoon.  Mom felt that she needed her newsletter as proof that she was a church member (?) or because the worship was being lead by someone from a different denomination than her own (?) who knows.

We join about a dozen other people in the parlor for Tuesday afternoon worship. Gathered around in a circle: Mom's neighbors, some staff, some family members. Somehow I end up across the circle from Mom, sitting between Anne and Sam.

We have the order of worship booklets and pages of Christmas carol lyrics. Long pauses throughout worship, while we all stop and help one another find the right page for the words or lyrics. "We're going to sing "Angels We Have Heard On High" on page eight." I fold over Anne's papers, I point to the beginning of the lyrics, she points to the wrong song, I point again, she points, I smile in acknowledgement. She gets lost on the page again, I point, running my finger along under the words. It is amazing how well our small group can sing. Some of these folks hardly mumble or talk, but they sure can sing.

I don't think Sam can read any more. But a lifetime of worship stays with him, he knows when to mumble the appropriate response and to hum along with the hymns.  During one of the prayers Sam takes my hand. I squeeze his back. After the prayer is over, he won't let go. There I am, my left hand is helping Anne follow the order of worship, my right hand is with Sam's.  Hanna hears our singing from across the hall and wanders into our circle, clutching her baby doll. It's like a bizarre dramatization of the scripture we've just heard, of Mary and her newborn son.

During communion the minister comes around the circle and asks each person if they want to partake. Mom begins a conversation about how in her congregation, she served everyone individual cups of grape juice. I'm laughing and rolling my eyes. Yes Mom, once upon a time you were the deacon who served. Now we're here in the "church of those gathered around the card-table in the parlor". I'm so grateful for this minister, who gave his afternoon, to lead us in worship. To tell us THE story that we've all heard a hundred times before, to sing carols we all know by heart.

We end worship with "Joy to the World", my left hand with Anne, my right in Sam's, smiling at my Mother, she is singing loud and clear. I can't sing, I'm all choked up.

I love to tell the story of unseen things above,
Of Jesus and His glory, of Jesus and His love.
I love to tell the story, because I know ’tis true;
It satisfies my longings as nothing else can do.

I love to tell the story, ’twill be my theme in glory,
To tell the old, old story of Jesus and His love.

I love to tell the story; more wonderful it seems
Than all the golden fancies of all our golden dreams.
I love to tell the story, it did so much for me;
And that is just the reason I tell it now to thee.

I love to tell the story; ’tis pleasant to repeat
What seems, each time I tell it, more wonderfully sweet.
I love to tell the story, for some have never heard
The message of salvation from God’s own holy Word.
I love to tell the story, for those who know it best
Seem hungering and thirsting to hear it like the rest.
And when, in scenes of glory, I sing the new, new song,
’Twill be the old, old story that I have loved so long.

Wednesday, December 14, 2011

small talk

Small talk - I'm terrible at small talk. I'm socially awkward. What should I talk about with my husband's work associates at the company holiday parties?  What can I say to the spouses of my work associates?

I have always loved the scene in the movie "While You Were Sleeping" when the new fiancee is enraptured by the conversation around the Christmas dinner table. "These potatoes are so creamy. John Wayne was tall. Dustin Hoffman is not tall." She is overjoyed by the crazy conversations.

Can you follow the conversation around your own family's holiday dinner table? There is never one conversation at the table, there are many threads, all crossing and weaving together, branching off and coming back in. The larger the table of people the more crazy the conversational tapestry.

I'm reading another book  The All-Weather Friend's Guide to Alzheimer's Disease, by Mary M. Cail PhD

Chapter 12: the author invites Michael and Elaine to her home for a dinner party. Elaine has Alzheimer's.  Michael has become an isolated caregiver. Michael and Elaine have been socially dropped from most of their couple-friend activities. Elaine's conversational abilities are scant. Her sentences don't make sense.

As the evening unfolds the author realizes, that if you were to look at a silent film version of their dinner party you would not know that Elaine has Alzheimer's.

The other people at the party were willing to converse with Elaine in HER time and space. Responding with interest to her garbled sentences. It's not what you say it's how you say it. 

Smiling with your whole self, touching, looking someone in the eyes. Being with them where they are. Who cares what the words are. Do you really remember the point/theme/plot of any dinner party conversation?  There is not going to be a test.

What do we remember from the holiday table? The good food, the laughter, the companionship, the togetherness.  It's all small talk, just now, with dementia, some conversations are much smaller than they use to be.

Tuesday, December 6, 2011

pack it up

The auctioneer came, packed up, and took away the contents of Mom's house.  Yes, I know it's been over a year since Mom moved into assisted living. I've been emotionally unable to get this task done.

Oh, bit by bit I have dispersed some of Mom's possessions, but the bulk of it all has remained, sitting in a cold dark house. The children's books went to the school library. Craft supplies were sent to a group. The pots and pans went to a young friend who just moved into her first apartment. Clothing went to a shelter, linens went to a sick friend. Mom's basket collection will become gift baskets, maybe already carrying a turkey dinner to someone in town. One rocking chair went to a grandson. The flatware went on eBay.

There are a few odd collections left, items that I'm not sure what to do with, things the auctioneer didn't think he could sell.

It was hard, watching the furniture move onto the truck. The old marble-top bureau that I had used all throughout my childhood. I had watched myself grow-up in that mirror. I had dusted every curve and groove of that bureau, my hands knew the feel of every carving.  I keep reminding myself, it's just stuff. Clinging to it will not heal Mom, it will not make her any more able. But, this truck of furniture will now become a liquid asset, to allow her to stay at the assisted living residence for a few more months.

One of my sons came to be with me while the auctioneer and his team packed the truck. There was nothing for him to do. We both just stood around with our hands in our pockets, watching. But to have him there with me, gave me the strength to be there.

Somehow it all still feels wrong... Mom's still alive. But she has no idea what I'm doing. She has no idea what I've done with her house and her collections, her furniture and her books.

Monday, December 5, 2011

a birthday

Happy Birthday Mom.

Her neighbors and staff celebrated her birthday at breakfast.  There were cards, singing, a corsage, and some cat-themed gifts. Everyone knows Mom loves her cat!

The staff knew that I was taking Mom out for lunch, and that we were meeting up with her girlfriends from the Birthday Lunch group.

How old are you? Is a usual question at a birthday party. But for Mom, she has no idea how old she is, and she doesn't want to accept 76 as the answer. One of Mom's friends in the Birthday Lunch group was adamant that Mom acknowledge that she was 76 years old. I wanted to smack this woman. Mom just doesn't understand, and you can't make her understand.

The lunch out was nice, the conversation flowed about friends gone and friends that are away. Mom was quiet for the most of it. Could she have put a name to each of these dear old friends, gathered around the table, celebrating, laughing, joking, as they have done monthly for the past twelve years? No, I don't think so. I think even the ability to recognize some of them as "dear old friends" had escaped her.

Mid-way through lunch Mom had a mini-tantrum, the onion rings were bothering her, she wanted them off her plate. Easy enough to remove them from her sight.

After lunch we all returned to Mom's place for birthday cake and conversation. I had baked Mom's favorite carrot-cake, one of those famous family recipes. She didn't want cake! She doesn't like cake! She always has a cookie and milk for her dessert and that is what she wanted! The staff all smiled and nodded, they were prepared with Mom's cookie. I fed them cake. I cut pieces for Mom's neighbors and the ladies from the Birthday Group. 

Two of the women from the staff sang a beautiful song to Mom. A song that made me fill up and cry. I had to walk away, to scream silently in the hallway, to howl.

After all the activities today, she can't hold onto the idea that today is her birthday, all the goings-on are for her, we are all there for her, for her special day. Lunch and cake have been too much for her. She is tired, she is lost, she is spent. I still don't think she comprehends that it was her birthday. Cake + flowers + cards + balloons + gifts + singing = ??


My son and his wife went up to visit Mom yesterday.  It hurts, no matter how old you are, when your grandmother doesn't know who you are.  My d-i-l told me, "It was an emotionally exhausting visit."

Thursday, December 1, 2011


Paula, over on her blog MindingMum, pointed out a brochure about anosognosia from the AlzOnLine.
Yup, anosognosia describes my Mother exactly! Add the independent personality to the dementia with the anosognosia and you get one stubborn woman.