Stories

I was more than a little afraid that I would get very bored talking to Ted. He does repeat himself quite a bit. And I can't talk about current events or news because Ted has no memory of more recent things. It surprised me that eating and talking with Ted are relaxing and interesting times. Barbara works to keep our meals on a consistent schedule. Lunch at noon. Supper at five thirty. Ted is often quiet as we begin eating. All that is needed to animate him is finding the right topic. I pitch in thoughts here and there, but my main intent is to allow Ted to give his ideas on any given subject.

Today we started a long conversation by observing that geese fly in a V formation. Ted speculated on how geese organize themselves. That lead to a discussion of leadership. Leadership led to a discussion of bums (tramps or hobos). We went on to the phone system in 1930's southern Illinois. And so on.

Ted has a lot of stories to tell. I have heard many of them before, but with a few gentle nudges I can usually encourage him to give a new take on an old story. Sometimes it is a new plot twist. Other times it is a new character. Ted's remembers a great deal from his boyhood. However, his memory is poor enough to allow him to rearrange and repopulate stories without struggling over whether they are consistent and accurate.

Even when I realize that Ted is confabulating, I find his point of view interesting. He is a kind and compassionate man. He is mystified at the mean spirit he has seen in some folks. He is generally patient and full of grace as he describes most people.

Just when I think that I may tire of listening, Ted generally indicates that he is tired of talking and moves to his armchair for a rest.

Mirth and Melancholy

Photo by dbking


We tend to believe that mirth and melancholy do not mix. We see them as immiscible as are oil and water. Caring for Ted reveals this as a profound fallacy. Early in the day my heart is torn by his melancholy recitation of questions: where am I, who are you, did I live here before, why does this place seem familiar. A couple of hours later, we are filled with mirth as Ted describes his older brother's babysitting technique.

Ted's brother Dwight seems to have been something of a hellion. When Dwight was tasked to simultaneously plow a field and care for his younger brother, his approach was unique. Dwight told Ted to lay very still on the ground. With horses and plow, Dwight managed to turn over the earth in such a way that Ted's arms and legs were buried. "Keep your head up Ted", Dwight advised. "You will want to be able to breathe."

We were curious. "Ted, didn't you cry?". "No", says Ted "I just held my head up and sort of looked around. I wasn't afraid." Later Dwight need to finish up the plowing near were Ted lay. So he unearthed his younger brother and sent him scampering back to the house.

"Didn't your Mom ask why you were so dirty", we asked. "No", says Ted, "My brothers and I were always dirty. It wasn't much of a consideration."

Mirth and melancholy are mingled every minute of every day. Children starved somewhere as we ate our lunch and laughed at the detailed memories of a man bereft of the ability to create new memories. For now we are perched between heaven and hell, but the day will come when the oil of gladness will separate from the sorrowful flood of pain. Those who choose joy will ascend. Those who cling to their independence will sink into an abyss of loneliness, forever.

God is love. He calls us to our eternal anointing with oil. We can only have it if we trust him to provide it.

Listening

What most people need is a good listening to. Often the people who need it the most are the most difficult to hear out. Little children need to be listened to, but they often articulate poorly. Busy adults tend to obsess on all that they have to do. Lonely and hurting people want to share how bad they feel. Foolish people want to impress you with how much they know. People with dementia repeat themselves, over and over.

Although it is pleasant and valuable to listen for enjoyment or edification, it is just as important to listen as an act of kindness. Ted has lived with us for a week now. Before he moved in, I heard repetitive stories from him a few times a week at most. Now I listen to him repeat stories multiple times in a day. Kindness includes paying attention, reflecting back what I am hearing, and asking questions that encourage Ted to continue and expand on his topic. Occasionally I can respond with a pertinent anecdote of my own. However, I must guard against the tendency to dominate the conversation. I want to strengthen the bond of understanding. I do not want to one up Ted.

I suspect that listening will be more difficult as weeks pass. I am task and goal oriented. I make a list and check it off. Offering the courtesy of listening to meandering stories can be a struggle. I am eager to be off to do this or that. However, I sense that it is more important for me to strengthen a weak area than it is to insist on utilizing my strengths. I have read that God is glorified in our weakness. I believe it. Now I must live it.

Memory

Ted's memory has been declining for at least five years now.   It is seldom clear to me what he can remember and what he can't.  It varies from day to day.  It varies by topic.  Song lyrics seem to last longer than many things.  I find that especially puzzling, because I have had a life long inability to remember more than just fragments of song lyrics. Even when I was tasked with teaching my Sunday school class the words to "Away in a Manger",  I had to keep a copy nearby.   Ted remembers multiple verses of songs like "Little Brown Jug", songs that just go on and on.

Lately Ted does not remember who I am.  Nor does he remember where he is.  Each time he awakes from sleep or from a nap,  it goes something like this:

Ted, "Where am I?"
Kent, "Oregon.  Philomath, Oregon".
Ted, "This place looks familiar.  Have I lived here before?"
Kent, "This is Barbara's house. You have visited here often.  Lots and lots of times.  Now you live here."
Ted, "But I have lived here before haven't I?"
Kent, "You have lived here for six days now.  You have your own room."
Ted, "But have I lived here?"
At this point I have tried yes, no, and "just a bit".  No answer seems satisfactory.
Ted, "Whose place is this?".
Kent, "It is Barbara's house.  I am Barbara's husband, Kent".
Ted, "Where is Barbara?'
Kent, "Shopping and taking a walk

The exact sequence varies a bit.  The overall conversation is usually repeated several times before we move on to other matters.  Tonight I intervened by asking Ted if he liked the smell of cornbread.  I even went and got a pan of cornbread to remind him of the smell.  We started talking about the food he ate as a boy.  Soon he was ready to leave his room and come have dinner.

Once Ted starts down memory lane regarding his boyhood, he seems to have total recall.  He can describe his parents' farm in great detail.  He remembers trees, farm animals, his Dad's habits, his Mom's routines, his brothers, their pets, all the nearby neighbors, and much, much more.

In the early years of his dementia,  Ted had similar detailed memories of being a soldier in the Pacific during WWII.  Now he has vivid, emotion laden visions of his time in the army, but the facts are muddled or missing.  He often elaborates with details that sound reasonable, but are made up.  Occasionally when he is deeply involved in speaking of his time in the Pacific, the accounts begin to come into focus.  Details come back.  Other times, no amount of prompting seems to help Ted have a clear picture of his time in the war.

Most of us worry about our memories failing as we grow older.  We forget where we parked our car.  We forget a friend's name.  I find that especially true when I have a lot going on and I am stressed.  The memory loss from Alzheimer's is a whole different thing from those "senior moments".   It is common for Ted to ask the exact same question over and over again in a single half hour.  His eyes may light up when he hears the answer. " Oh yes, that's right.  I remember now."  But five minutes later, it is as if we hadn't spoken of the matter at all.

I see that the repetition will be a challenge for me as the days and weeks pass.  Tiny bits of progress may happen.  Tonight Ted remembered how to get from our dining room to his room and the attached bathroom.
However, there are also bits of regression and loss.  I begin to see that Ted will never remember my name again.  Ted still remembers the four B's:  Bruce, Barry, Brenda, and Barbara.  But even that core memory is slowly fading.

I tell myself that answering Ted's questions are somewhat like rocking my children when they were babies.  I carried them, swayed, and repeated simple phrases over and over again.  At times it was tedious.  Especially if I was tired.  Mostly it was a simple, peaceful time.  I adjusted my expectations on what to expect from a baby.  Now I am adjusting my expectations for Ted.  Repeating myself is just as meaningless and just as meaningful whether I sing "Hush Little Baby" or when I say "This is Barbara's house".  Both are ways of expressing love.  I can never love too much.

Ted Moves to Our Home

Ted with Juanita a Few Days Before She Died

Ted was married to Juanita for 67 years.  She died two weeks ago.  Since then we have brought Ted into our home so that we can provide the sort of help that he needs as his disease progresses.  This is a huge change for Ted, for Barbara, and for me.

At times I have been reminded of our first child's birth, 26 years ago.   Julia's presence in our home changed everything.  We had prepared a room for her with special equipment and supplies.  Julia depended on us every hour of every day.  We loved her very much, but we had little experience in caring for a child.

Ted is not a child.  Yet there are similarities.  Our lives have been profoundly changed.  We worked to create a safe comfortable space for Ted.  Now we have a walker, a wheelchair, grab bars, and a ramp to our front porch.  Ted's Alzheimer's has progressed to the point were he needs someone to be immediately available to him at all times.

There are also many differences.  Ted communicates well.  He has an excellent sense of humor.  For now, he can dress and feed himself.  As a baby, none of that was true for Julia.  Ted's condition will very likely deteriorate as weeks and months pass.  Julia grew and learned.  Ted will become more dependent.

Alzheimer's impairs a person's ability to store new memories.  It also gradually robs the person of memories from earlier in life.  When Ted awakes from sleep, he has to ask us where he is.  He still remembers his daughter, Barbara,  but he doesn't know who I am unless I explain it to him.

Ted is fortunate in that his personality remains kind and good natured.  He has faith in God.  He knows he is loved by his whole family, although he has trouble remembering many of them or anything about their current lives.

Ted knows Juanita has died.  He mourns her loss deeply.  However, he also understands that their separation is temporary.  Ted will join Juanita in heaven when his time on earth is complete.  He is resigned to being patient, yet he longs to be reunited with Juanita.