Linda is Free

On January 31, 2010, Linda Lowrey was set free from the prison of Alzheimer's Disease. Soon I expect to shift my blogging back to this site from the CaringBridge site.

Current blogging in new place

During this past year I have shifted by journalling and blogging to a CaringBridge site. If you wish to read it there please go to: http://www.caringbridge.org/visit/lindalowrey

Dementia Peacemaking

"There has been an oceanographic calamity. Five people have drowned. And I don't know if my son is alive."

These words confronted me as I arrived at the Alzheimer's Care Facility at dinner time and was about to sit at the table of four to visit with my wife. I could tell that Terry (not her real name) was very worried. She is in a milder stage of the disease. She can remember many things...but the facts get all mixed together. In this case, she had seen a TV news report of the terrible disaster in the Philippines where a ferry capsized and sank and more than 800 people were drowned. Terry has a son named Harry (not his real name). He lives in the USA a couple of hundred miles from northern Virginia and is able to occasionally come and visit his mother. But today the information in her mind got linked, and she was terribly distraught, believing that her son was on the ferry and it was unknown whether he was alive.

I didn't think of it as peacemaking at the time, I just thought that there was something I could do to help bring a little peace to Terry. So I quickly said, "Terry, I can find this out for you. You know how I travel all over the world and have people I can call in many countries. Let me step outside and make a call and find out if Harry is OK. I will be back soon."

She looked at me with such a desparate sense of hope and said, "Can you do that?"

"Of course I can. I will be right back."

I walked out of the dining area into the hallway, waited for a few minutes, and then returned to the room.

"Terry, I have wonderful news for you. Harry was not on that ship. He is ok. He did not drown!"

Immediately Terry's eyes brimmed with tears and the emotional relief flooded through her. We talked about the joy of relief and good news. And I sat down again to be present with my dear wife, occasionally helping her a little in eating her dinner, sometimes rubbing her back, whispering "I love yous" to one another, the favorite phrase remaining for Linda.

Terry also ate her dinner. But whenever anyone was available to listen to her for the next few days she told this story over and over. Somehow, my personal delivery of authoritative information had been able to slice through the confusion in her mind. Harry was safe. He had not drowned. And Terry had a little peace for a few days.

But this is a pattern of confusion for Terry. The Care Center where she lives has hours when the TV is going for anyone to come in and out and view. Disasters and calamities always get vivid coverage with pictures and live reports. Even the nature channel has shows about animal attacks that to a dementia resident may be perceived as happening right now, right in that area, or as threats to loved ones. So in the last few weeks I have had several opportunities to bring comforting news to Terry when she was freightened. The incidents have included:

"Harry is on an airplane going to London and the plane has no fuel."

"There are huge sharks in the water that are biting off people's arms and killing them. I am afraid Harry is going to be attacked by sharks. Can you call him and tell him to come back home from London and stay away from the sharks?

"You need to be very careful when you go outside. There are bears out there (other times it is tigers). Do you have a gun. You need a gun to protect yourself."

Terry is in a difficult stage of the disease. She still remembers key people. She can take in information. She can remember the information and stay fixated on pieces of it for days at a time. But the information pieces don't get put together in a fashion that is even close to reality. And this new reality for her is terribly freightening. Caregiving, and peacemaking, is a continual process of helping a person hold on to information that is comforting and trying to keep a person from being exposed to information that is freightening.

For my Linda, this is no longer part of her vulnerability. She can not remember the people, take in the information about the external environment, or connect the data in a pattern. So her ignorance of this is more blissful. A blessed relief in a horrible disease.

NOW

"When there is no way out, there is still a way through...so don't give up whatever you do...

Cause NOW is all there is...so peaceful and still...and NOW you don't worry about whats happened or what will...cause NOW never ends...and NOW's never been...and all of your answers are waiting for you here...Now

when you don't understand how things got so far away from all you planned ... and your life feels so hard in your house made of cards . . .

When there is no way out, there is still a way through...so don't give up whatever you do... "

This wonderful music video by Dave Carroll expresses the feelings and words that are so important in Alzheimer's caregiving.

Enjoy and be inspired and encouraged.

Now by Dave Carroll

In honor of Linda Lowrey

Alzheimer's Diagnosis

Anniversary and Father's Day

Thirty-nine years ago today, in 1969, it was also Father's Day. And it was the day of our wedding. I remember so well Linda's father, called "Daddy Joe", giving me a hard time. He was a natural jokester. Linda was the fifth child and had been born seven years after the child bearing time was thought to be over. So she was not only his special baby, she was also the baby doll for the four older children ranging in age from seven to early twenties.


Daddy Joe said, "How can you do this to me? You are taking my baby from me on Father's Day!" I laughed and said, "No, Daddy Joe, you are getting a new son on Father's Day."

My comment was poignant. In the McInnis family, the only son was named Bill, or Billy Joe. He had died in his mid-twenties of a brain tumor. It was a loss that Linda's parents would never get over. The pain of losing a child is unbearable.

Now a new Bill was coming into the family. And Daddy Joe was glad to have me, even though I was taking his baby on Father's Day.

Now thirty-nine years later...Daddy Joe and Sadie are long gone from this earth. And their baby is in the final stages of Alzheimer's without understanding that this is our anniversary. Linda can not grasp the meaning of anniversary and she no longer shares the memories with me of our life together. But she is able to embrace the joy of a moment, to smile, to laugh, to hug, and to say "I love you."

Yesterday I took two balloons to Linda. One was in the shape of a butterfly and the other said Happy Anniversary. She loved the butterfly. I took flowers, and she smelled them and smiled. I sat with her and read from a book that she and a friend had created together of Linda's life and memories when she was still in the early stage of this disease. I love to read these pages to her...even though she does not grasp the words or meanings now. Sometimes, like yesterday, tears begin to roll down my cheek. And Linda responds to my tears with loving eyes, sometimes a pat on my head. Yesterday I said to her..."I love you." And she responded, "I know you love me." It was so amazing. There was a moment of clarity in her eyes, in her voice, and with a sentence she has not been able to say for many months. It was her gift to me for our Anniversary.

Our oldest daughter Bethany helped me figure out how to spend this day...a bitter sweet time but also a day that is Father's Day. I am not only husband and caregiver for Linda. I am also Father to three children and grandfather to five. So we had a picnic with Linda, Bethany, Andrew (age 7), Julia (age 4), and me. We sat on the ground under a shade tree at the care facility. The children played around. Linda enjoyed eating pieces of watermelon with her fingers. Homemade ice cream topped off the day.

Then Linda had all she could handle of people. She needed to walk and be alone. So we left and went to Putt-Putt Golf to celebrate the Father's Day part of this special moment.

It worked. From early morning worship at church, to picnic and ice cream and joy moments with Linda, to playfulness with little children learning to hold a golf club and making a memory with their G'Pa.

This day has been good. We have navigated another challenging moment along this long journey. And I am grateful. One day at a time. That is sufficient.

Bill

Update after long silence and Alzheimer's Prayer

Dear Family and Friends,
In a few minutes I will go over to Arden Courts Alzheimer's facility, meet our pastor there, and Linda will be served communion. For many months she was able to go to church and with my assistance she could take of the bread and the cup. Now, she is not able to do well in a church service. So our pastor will bring communion to her. For that, I am very grateful. I believe that grace flows in the sacrament even when Linda's mind can no longer comprehend what is occurring.

I found the following prayer on the Alzheimer's Message Board. It expresses so many of my prayers for Linda over these years and is more poignant now as so much of it is true of her current condition. We have now entered into the seventh and final stage of the disease. It may take a couple of more years for it to run its course. But in these times we all continue to care for her when she is so dependent, recognizes so few, can express so few thoughts in words, can read aloud very few words and comprehends even less. And yet she gives to each of us who can be with her. She smiles. She says "I love you" over and over. She is mostly content in the moment. She is calmer now...less of the agitated walking, fewer blisters.

Linda has been an instrument of transformation for me even in this tough journey. I find that I can sit with her in peacefulness or walk slowly around the yard, or bring her home and sit together in our sun room....and I am not anxious to get on with the demands of work or the other activities of life. There is a sacred space in her presence for me. There are so many memories that are worth meditating upon and I am the chosen one who is the custodian of what previously were shared memories. I am the living archive of so much of our life together. So as I sit in her presence...she has not really lost her memories...she just has lost access to them...they are here with me and even more so hidden in the presence of God until they will be returned to her in her future life.

The progression of the disease has continued unabated these last three and a half years. Before that, we got some help from the medication for about a year. But in these last 40 months or so, the inexorable progress of the disease has never found a plateau. For some people plateaus happen. Even now that could occur. But part of truthfulness for me is to look reality in the face and declare that it has no power over us...we can walk through the valley of the shadow of death and have no fear. If the current progression continues, I expect that within the next nine to twelve months Linda will lose much of her mobility and most of the rest of her language. Nothing can be accurately predicted, but this is what I think is reasonable to expect. Sometimes after that she will probably reach a stage where only palliative care will be needed with the support of hospice. If any falls or illnesses or infections invade that escalate the process, then the journey could end sooner. There is such ambiguity in this journey that contentment in each day seems most important.

In light of these thoughts, I am making changes in my work with the assistance of my supervisor and with the recruitment of a friend and colleague to take on some of my field focused work. During the next 18 months or so, I will do many fewer international trips and keep those I do to short times that should not go beyond ten days. I will be more available to oversee the changing care needs, knowing that this could be a bumpy ride and may even require at some point a change in her placement.

Several years ago, Linda told her/our good friend Alice that she had no fear of death. She said to Alice that she knew that when she did not know her family and friends any longer that she would be ready to die and be with the Lord. And she said that she had complete trust that we would all take care of her and love her to the end. We are closer to that period now. And she was right. We will care for her and love her to the end of life on this earth.

May you see yourself and find yourself drawn closer to God and to Linda as you read the prayer below. Instead of "they" you may want to read the prayer putting in Linda's name or she in place of the plural pronoun.
God bless you all,
Bill
_____________________
Dear God,
Hear the prayers they cannot pray.
Listen to the songs they cannot sing.
Comfort them with scriptures they cannot read.
Reward the faith they cannot express.
Cheer them by visitors they do not recognize.
Encourage them by children they have forgotten.
Let them feel the love of the companion
they can no longer call by name.
Grant them your peace in the mysterious place
where they have gone away from us.
Do not forsake them in their desert
of forgetfulness and total dependency.
Abide with them until that glorious moment
when you take them into your eternal presence
where their memory will be restored
and they can again sing your praises.
And they will walk again with dignity,
and they will talk again with clarity,
and they will know all things
even as they are known!
Amen.