Marriage and the Moves

I left that weekend from Eastern New Mexico University, Portales, NM with no committment other than working on our relationship to see where it might go.  With no renewed intimacy but rather a depth of conversation about life and what our futures might become, I returned to break an engagement with a wonderful young man who I loved but was not "in love with".  [This could have very well been a life altering mistake had I married. It is a lesson for all who may fall in love but not be "in love" --- there is a difference that must be understood.]

And it came to pass that after college, Dennis got his first teaching assignment in Dubuque, Iowa.  We spent a great deal of time together and so it goes that our long distance relationship that started in high school --- was confirmed in marriage February 7, 1970.  

Very soon after we were married, Dennis was drafted into the Army.  We lived at Ft. Sill Oklahoma when our son was born that next September.  Then in January 1971, was commissioned as a Staff Sergeant with the 101st Airborne Division and was sent to Viet Nam.  Back in those days, there was no email.  There was only "snail mail" and we were lucky if our letters could make the transAtlantic trip in no more than two weeks.  Scott was just a few months old so I kept busy with a new born as I waited for his return.  

When Dennis returned from his deployment, we moved to Dubuque with hopes he would get his old job back.  Well that didn't happen!  He had a job but it wasn't what he wanted.  With the GI Bill available for going to college, we decided he would enroll at the University of Northern Iowa to get his Master's degree in Health and Physical Education.  Before finishing his master's we were blessed with a daughter who seemed to complete our family of four.  

With a few moves and a few setbacks seeking the job that had a future, Dennis eventually accepted his position to Coach swimming in Pasadena, Texas.  We left our families behind as we moved our caravan of furnishings, vehicles and a boat to Texas in 1976.  Never could I have realized what a difficult transition this would be.  Dennis was absolutely beside himself with joy working at a job he loved.  I was at home with two little ones and did not know a soul.  I was lonely and HOMESICK.

I knew Dennis as a confident person who knew no limitations on life.  His motto was “the only real limitations in life are the ones we put on ourselves” AND “the only thing that holds us back is the fear of failure”.  So after moving to Texas, (with his support and encouragement), I went on to get my bachelor’s degree in education.  He never pushed but always encouraged.  I recall one time when I had "burn out".  I was talking of dropping out -- he listened quietly and then suggested that I not give up -- but that I needed to back up from taking 18 cr hrs per semester and take no more than 12.  I followed his suggestion and it helped me tremendously!  I finished and realized my dream to be a teacher in 1982.

After 10 years of teaching, I went back to get a Master’s degree in Education with Mid-management and Supervision certification.  As an educator, I was a teacher, technology instructional specialist, peer facilitator, and assistant principal.

This story isn’t as important as it is for you to understand the love and encouragement that helped me rise above childhood circumstances that continued to plague my confidence.  Dennis taught me to live life, reach out for something with passion and to put myself in a situation where I can get up every morning looking forward to the day ahead and the challenges it brings. Now when I listen to swimmers and others speak of what lessons they learned with Dennis -- I am drawn to the irony that those are the same life lessons we lived in our personal lives.  It was who he was ......

He was the most spiritual man I have ever known.  He lived his faith. He demonstrated kindness, encouragement, compassion and support of others. Simply put – Dennis has been my strength and my rock. He has always been by my side. He loved me unconditionally.

Now when I look back, I can more clearly understand the gift I was given.  God gave me a gift of unconditional love and acceptance in a man who lived his life with great joy and a positive attitude.  He modeled for me the way to stand strong and embrace life with all its gifts and challenges.  With him by my side -- it seemed there was nothing I couldn't do.  

Background of the Little Girl

Before I started blogging, I made several attempts at writing a "book" as a tool for therapeutic writing.  I got about 44 pages written when I realized I was getting bogged down in structure, timing, details, semantics, correct grammar, always complete sentences.  I had 25 chapters titled and would jump around depending on where my thoughts were on any given day.  I have those pieces saved for reference.  

Today I want to take you inside the life of a little girl who was by all standards defined by negative experiences at a very young age. Of course the little girl is me.  My only purpose in sharing these personal details is that it will help others better understand my early abandonment issues (separated from parents) and now as I see the finality of my life those feelings of abandonment once again rear their ugly head.  With Denny, I came to realize my value as a human being.  His love made me feel special; made me feel confident; gave me the security and unconditional love I had always longed for.  His human touch, his voice, his physical presence and his reassuring guidance are what I miss most.  

So here is an excerpt from the beginning of a "book" started months ago......  and oh by the way the book title is :  WITH A PATCH ON HER EYE (as a little girl I had lazy eye and I wore a patch for about three years)

This is the story of love, grief and faith.  My hope is that by writing this, I can finally put my childhood, my married life and the past 10 years of Alzheimer’s in perspective.  As time passes, I know my plans for life only carried me as far as God allowed.  It was always HIS plan that prevailed.  God’s plan took me to the darkest times of despair. During those periods of darkness there was much loneliness, sorrow, insecurity, shame and grief. As a young adult, I did all I could to escape that darkness hoping never to return or mention it in the future.  It has taken me 60+ years and the death of my husband to better understand what that was all about.  It took me a lifetime to see the good in a somewhat tragic story of loss and loneliness.  But now I see clearly that all I experienced in life has given me an understanding and sensitivity to how God works miracles in our lives.  I keep walking away from writing this story because I feel inadequate to put this in words.  But now I am compelled with all my imperfections and shortcomings to express in the best way possible …. What I have learned about faith, hope, love and Alzheimer’s.

In telling my story, I should start with some background information.  My mother was seven years old when her father passed.  By all accounts, he was the nurturing and loving parent. My mother was promptly sent to live with a married sister who had no children.  For reasons unknown to me, my mother spent her summers at home but was expected to work cleaning and caring for children during the week only to bring the money home to her mom on weekends then return again. Then at the young age 14 my mother married with her mother’s prompting.  At age 15 – she had me.  At age 17- she had my brother.  And by age 19 she was divorced at a time when divorce was not acceptable in society.  She sought help from family to keep this little family together but was encouraged to put us in an orphanage.  Mom chose instead to find a good church family to care for us while she worked in an Ordinance Plant during the war.  They were good people who had children our ages but they were not our parents. This period of time was difficult.  Countless nights were spent crying softly wondering what was happening…“Where was my mom?  When would she return? Why didn’t anyone care?”   To avoid the hurt, I kept myself mentally busy caring for and protecting (when needed) my little brother. You might say I became a surrogate mother.  At the age of 7, our family was reunited when Mom married our step dad.  Everyone was happy!  So happy that he went on to file for adoption so we were indeed one family. 

Before the adoption, our last name was different from our parents. Different last names tagged the children of divorce.  And in those days, divorce was unacceptable in society.  Children with divorced parents were not accepted with other children.  There was a stigma that hurt when you are young and you hear “you can’t play with her – her parents are divorced”. In the community, I was an outcast but in school I found a place where I could feel good about myself.  I wasn’t the smartest little girl in my class but I worked very hard.  I soon learned that in school, I could share a common bond with others who were working hard.  There were no acceptable excuses – “you are from divorced family, you are a child of poverty, your mother had only an 8^th grade education“--- no, at school there were no excuses!  No limitations were put in place.  The only expectation was to work hard and do my best. So throughout my early  years of school, I was nobody in the neighborhood but somebody in the classroom.

Then at age 10 additional siblings began to arrive.  Financially times were difficult.  Poverty was visible.  Mother had to work nights and Dad worked days returning home to care for kids.  In all honesty, being the oldest it was apparent to me at a young age (fact or perception) that I was responsible for caring for younger siblings, cooking and cleaning the house. 

I tell you this story because here was a child who by today’s standards did NOT have a chance to be successful in life.  She was born into poverty, divorced parents (who had no more than an 8^TH grade education), and lived on the wrong side of town.  But when she went to school – she found a place to “feel like she measured up to other people” because she carried no “labels”.

Our family moved on several occasions trying to establish financial stability.  With each move there were new schools, new teachers, new neighbors and new friends.  My insecurities away from school made it difficult for me to find an essential stability for social interactions.  During junior high my family finally settled in a house that became the family homestead (even to this day).  But it was not until I started high school that I experienced a place of acceptance that I yearned for in school and among friends.

As a sophomore in high school, I met a young man in Literature class. What caught my eye was his quiet but cordial demeanor that acknowledged others and welcomed each with a smile.  Later Dennis would become an All-American swimmer and class officer.  He was the guy who was later (junior/senior) nominated for King of the Gala Dance.  In fact, our first date was that Gala Dance.  Girls would ask boys to be their date.  It was my chance to ask this great guy in my literature class to be my date.  But there was no way I would do it face-to-face.  No, I would call him. And of course when I called (girls didn’t call boys back then ).. his mother answered.  He was not home.  He called me later.  I asked if he had a date…he said no.  Then in my awkward way I asked if he would like to go with me.  Before he could even answer, I said “you don’t have to if you don’t want.  I know Jill and some other girls who want to ask you and you may want to go with them.”  He chuckled and said, “Sure I will go with you.”  And that is when it all began.  After that dance we were best friends. His first love was swimming.  With him I felt safe.  The fact that he liked me – made me feel special for the first time. 

As time passed, I became more drawn to this friendship.  Dennis’ life was drastically different than mine.  His mother never worked.  He never went to sleep wondering if someone loved him.  He had two loving parents who supported him in all his life, school and athletic endeavors.  He was a humble person who both admired and respected by many. And most important, he was spiritually strong and exuded his faith in every part of his life.  In our many discussions, I never let my guard down to let him know the depth of my childhood experiences.  Outwardly, I demonstrated the confidence and out-going personality that he was drawn to during those high school years.  Certainly I would not allow myself to revisit those years of sorrow and shame. I thought I could successfully keep it hidden.

Dennis was my ‘best friend’!  We dated, we talked, we went for walks, we discussed faith, we discussed life and of course we discussed the future.  Upon graduation, Dennis accepted a scholarship to swim at Eastern New Mexico University.  I went on to the State College of Iowa for that freshman year.  We wrote letters and dated when we were both home.  With time, things dwindled for him and I was crushed.  Homesick and sad I returned home after that freshman year not to return.  That summer and subsequent summers, we saw one another but the long periods of absence were difficult and the letters were fewer. 

I went on to get a good paying job working on computers. I got a nice apartment with friends and bought a new Camaro ’67.  I finally decided I had to get over this relationship that appeared to be going nowhere.  I started dating a nice young man who had a college education and worked in his dad’s advertising business.  We shared a love of sports cars.  Soon we were in a whirlwind romance.  He too was a spiritual man and with him I felt safe.  Within a few months, he asked me to marry him.  I loved him and said yes!  My parents loved him.  My roommates loved him.  My friends loved him.  One day we were looking at new homes.  It was an amazing day and I felt like I was living a fairy tale.  Then it happened!  We were walking through a master bedroom and John turned to ask me how I like it.  I stuttered to say it was perfect – because it was!  But in that moment, I was stunned by one thought.  I could not imagine going to bed with John!  He was not sexually aggressive so I had not experienced that yearning desire to make love to him.  I understood in that moment that I loved him but was NOT in love with him.  I knew the difference because when I was with Dennis, I could always feel my heart pounding and my desires for him were ever present. Wow!  I remember thinking what do I do now?  Will that come?  Everything else was perfect. 

During my quiet searching for answers, I had to acknowledge to myself that I had fleeting thoughts of Dennis.  What would he think if he knew I was engaged?  Was he dating anyone special?  Did he still have feelings for me?  Needing answers – I called him that summer while he was attending summer school.  We had a lengthy conversation.  It was one where I shared my engagement that was meant with quiet.  I spoke of my indecision.  He spoke of dating another but that did not work out.  We left the conversation with an understanding to speak again soon.  Hanging up – I knew I had to break off the engagement.  Even if Dennis and I never got together, I could not marry John.  But I had to be sure.  Was I just fantasizing about Dennis?? Well I did the unthinkable.  I flew to New Mexico without even telling him I was coming.  I had to see him and look in his eyes and be with him to know for sure. 

Legacy of the Coach

Before I share the tribute that was given by a former swimmer at Denny's Memorial in Houston, I want to go back and share the Swimmers Reunion we hosted when Dennis retired.

It was a birthday surprise in February 2004.  We started early in the fall spreading the word.  Then I was blessed to find a former swimmer (Scott) who was a professtional webmaster.  He took the information and created a beautiful website honoring coach and inviting swimmers from years past to his retirement celebration.

The best part on the website was individuals having the opportunity to send Dennis a personal message of congratulations.  And on the same site there were instructions regarding registration for the dinner event here in Bella Vita Ballroom.

I had decided that with the progression of dementia, the best celebration for Dennis was not just to have adult friends and coaches honor his years of service but for those he touched daily to have that opportunity.  With great excitement, we saw the numbers of registrations grow beyond expectation.  Former athletes and former swim parents came from miles around here in Texas.  Others flew in from other parts of the country.

When Dennis returned home late January, I told him what we were doing.  His excitement was all I needed to know this was the right decision.  Each day I would give him an update of who was coming.  And of course, I could not leave out the Athletic Director and High School Principal (both friends) who had supported Dennis and stood behind him when the end of his career was evident.

We hosted the tribute and friends from Bella Vita served the catered dinner menu.  There were stories told of years past and a great deal of laughter as those in attendance poked fun at their beloved coach and themselves.  That retirement party was a great success thanks to Scott (webmaster), our daughter-in-law Melissa (who took reservations and handled money) and all those who found it important to attend.

Ironically, it was many of these same swimmers (40+ yrs old) who visited Dennis in the hospital and who attended his final farewell - The Celebration of Life.

Now I want to share with you the eulogy written and spoken at that final farewell.  It speaks volumes to the man that Dennis was -- coach, mentor, advisor, parent and spiritual leader.
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Coach

Everyone remembers Coach, even those who did not know him personally. He was a master swimmer, achieving many victories throughout his lifetime. He could be seen riding his bike to work, swimming in his off time, working on swim schedules during lunchtime and picking up trash in and around the pool area at any given time. That's how he lived his life.

But those of us who swam under Coach’s leadership, will remember him in a  more profound, endearing, infinite way.

Coach was a man of few words, but it's not what Coach said that he will be remembered for. It’s what he didn’t say. 

In fact, it’s what Coach Shippey DID that will be his legacy. It’s how he lived his life. 

Coach was a leader, leading by example, instead of lectures. He lived his life each day, honoring his values of mutual respect, perseverance and commitment to excellence in everything he did. Always.

Coach was a cheerleader when we raced, a drill sergeant when we slacked off, a teacher if we needed lessons, a boss if we rebelled and a friend when we graduated. It’s how he lived his life.  Much of what we learned about how to live life, we learned in high school, through Coach’s example. 

Although he was not a talkative man, we knew when Coach was proud of us, concerned about us, upset with us and we also knew that he honestly loved coaching us. We knew. His actions always spoke so much louder than his words.  It's how he lived his life. 

Just recently, I began reflecting on what Coach Shippey meant to me at this point in my life, almost three decades after graduating. And what I realized is that - unknowingly, I had taken him with me after I graduated, through college and all through my twenty six years in education. Coach has been here with me all along, in the shape of a mentor, a cheerleader, a drill sergeant, a teacher, a boss and a friend – to my own students. Because the way he lived his life, in many ways became the way I tried to live MY life. 

Each one of us knows which part of Coach we took with us after graduation. And we know which part will stay with us, living on, living in us. 

This is Coach's legacy - that he will live on in all of us here in this room, in some way, shape or form. Now and always. 

At some point today, as you reminisce with those in attendance, look closely at their character, listen closely to their attitude  - you will find Coach. He’s here. Now, and always. 

We will miss you, Coach Shippey. The victories in your life were many, but your final victory is the sweetest of them all - where the pool water is always crystal clean, the roads are always paved, your pain has fallen away and your spirit has been restored. 

Rest in peace, Coach.

September 10, 2011

Susan Stevens Langlois

Celebration of Life

When at the Cottage the morning of August 31, 2011, we walked into the room where Denny had spent the last 9 months of his life.  There laid his lifeless body.  Soon we were notified the funeral home had arrived to take the body.  We were given a few minutes then in walked a handsome young man who said quietly, "He was my Coach."  Not recognizing this person, I was questioning and he was forthcoming with a story that comforted all of us.

It seems that he (can't remember his name) had been coached by Dennis as a youngster in summer league.  He didn't go to Dobie but he never forgot Denny's approach to coaching (and life).  He said I always admired Coach...so much so that now I have a little girl who swims.  She will get frustrated when she doesn't think she did well in competition.  I will look at her and bring back those old familiar words from Coach, "Did you do your best?  And if you did ... you are already a winner. If not just get it right the next time."  We chatted for a bit and shared stories that definitely lifted the spirits of everyone in that room.

When we all left the Cottage for the drive home, I reflected on references in the Bible that our body is a vessel.  Never was that more evident that when I saw Denny's lifeless body.  The man I loved and cherished for almost 47 years was gone.  His body was all that remained.  It was in that thought that I came to a much deeper understanding that our bodies are how we recognize one another and engage in human contact.  But it is the spirit of that person (their soul, their personna, their connection) that we love so much.  I don't know that I can adequately explain the feeling I had in that moment but it was all consuming.

Scott and I went about the day making various arrangements at the funeral home, at the church and looking carefully at how to celebrate Dennis' life.  When everything seemed to come together, Scott said, "I am amazed at how calm and smooth this day has been.  But Mom I guess you have had ten years to think about this day and what you wanted to do."  I assured him that was indeed true.

Grief during those first few days was held at bay. I chose to be thankful for God's mercy in taking Dennis.  Dennis had already passed long before -- in the end we were caring for and managing a disease of dementia.  Arrangements were made to have my siblings fly in for Denny's service.  Because he was being cremated, we chose to hold the service the weekend after Labor Day.  The timing of all that seemed to work out best for everyone.

I live in an active seniors community and the support of those neighbors was incredible not only at the time of Denny's passing but throughout the ten years. Soon after the diagnosis, I was open to neighbors regarding Dennis condition.  From that time on, he was everyone's 'favorite' as they kept out an eye for him and his safety.  So it was no surprise when I got a knock on the door -- a good friend (and neighbor) stopped by to say she would take care of all arrangements for a luncheon after our service.  What an incredible gift it was in that moment to be able to let go of any thoughts regarding those details.  She arranged with the 'church ladies' for food and even networked with the school district for using the cafeteria at the high school when Dennis coached over 30 years.

After a few days, Scott returned home to his family and I was for the first time ... alone.  It didn't take long for the tears to fall.  I decided to cover our dining room table with loads of pictures to capture this wonderful man's life.  As I took the pictures out tears accompanied the placement of each.  At one point I was laying on the floor crying softly to release some of the sorrow.  I continued this placement of pictures until the table was full.  The tears came in waves of relief, sorrow and great loss.  I went to sleep that night totally exhausted.  Waking the next morning I paused at that table with a new awareness.  By putting those pictures out, I came to the realization I was grieving the loss of my husband before Alzheimer's.  I had been so busy caring for him with dementia that I had no time to even look back at the man he used to be.  So the tears were meant to be... but they were not of his passing on August 31 so much ...as they were of missing my one true love and the journey we shared from the time I was 15 years old.  

And so it was that we celebrated Denny's life.  It was exactly what he would have wanted.  Longtime friends did the readings at mass.  Our favorite priest and deacon were on board for the celebration!  A longtime swim parent (Mr. Richmond) spent countless hours making a dvd of pictures to commemorate Denny's life from childhood. That display of pictures and music of spiritual celebration was shown both at the church and at the luncheon.  The night of the Rosary, our son and daughter both spoke of their father and the impact he had on their lives.  It was extremely touching when Sondra shared stories of childhood incidents where her dad gave her comfort.  She remembered hiding behind his legs knowing he was her protector.

Before the Vigil started, I had a tense conversation with our oldest grandson.  Ian was particularly close to Grandpa.  He wasn't particular fond of or "into" the whole religious ceremony stuff.  I just asked that he respect our way of celebrating.  So it was with great surprise when Scott and Sondra finished speaking and an invitation was given for others who may want to speak -- Ian walked to the podium.  I remember my heart racing in concern.  None of us knew he was going to speak.  I cannot begin to tell you the words he spoke but they were heartfelt, full of love, to the point and made his grandpa (and me) proud.  All I could think was WOW!  His message in that moment was a gift.  I thought I had planned every detail but that was nothing that I had a hand in.  So many in attendance praised Ian's message and were impressed he spoke a message of great admiration for grandpa.

The next day we had the full mass.  Family friends did the readings and at the end, it was Denny's best friend Bruce who gave a most personal eulogy to his buddy that dated back to the days of youth swimming in Iowa up to the final years of his life.  He brought a message of the impact Denny had on many lives by demonstrating his love for God, family, community and swimming.  In addition to that, one of Denny's former students gave a heartfelt tribute to the Coach on behalf of all swimmers and swim parents.  Closing mass with these personal memories helped bring to life of unselfish service to others.

There were more than 200 in attendance.  Father had all those in attendance to stand if Dennis was their coach (large numbers stood who were in their 40s).  It was amazing to see that after many years, these swimmers who now had careers and families of their own were so touched by his life that they were in attendance to honor Coach this one last time.

At the luncheon, I think the comment I heard most was what a beautiful celebration it had been.  We had successfully found the balance of laughter that happiness that overshadowed much of the sorrow.  That was our tribute to Dennis and a life well lived.

The Brain Donation- NOT Alzheimer's

One year before Dennis passed away, I knew we wanted to donate his brain for research.  Much of what was happening did not make sense.  There were too many unanswered questions.  So while I was sitting by his side during the nine weeks of hospitalization, a good friend researched possible brain donor foundations.

What she found was there was no program in Texas and very few in United States who were even interested in taking the donation.  There were of course medical schools interested in the cadaver but nothing was found providing research and possible answers.  This was more than a little frustrating but for the time, I just let it 'rest'.

Then in the spring of 2011, I had the opportunity to interview for the Alzheimer Ambassador Program in Houston.  During the interview, I was met by the Public Relations officer for the Houston Chapter.  I found out I would have personal contact with targeted members of Congress building relationships with decision-makers and their staff and holding them accountable to their commitments to fighting Alzheimer's. He detailed the responsibilities and commitment involved.

The interview went well and I was accepted into the program.  But before leaving that interview, the PR officer and I discussed personal experiences and concerns I had with trying to find a place for brain donation.  To my amazement, he was excited to give me contact information for the Sports Legacy Institute.
[ SLI in Boston, Mass. was founded by Chris Nowinski and Dr. Robert Cantu in reaction to new medical research indicating that brain trauma in sports had become a public health crisis.  Post-mortem analysis of the brain tissue of former contact sports athletes revealed that repeated brain injuries could lead to neurodegenerative disease known as Chronic Traumatic Encephalopathy.]
Mr. Nowinski had recently been in Houston and spoke to the Texas based delegation soliciting brain donations.  In particular they were looking for individuals who were athletes with Alzheimer's/dementia.  It was just a matter of making contact with the donor office and within less than a week, all the necessary documents were completed.

This is what I call one of those "God moments".  It was such a huge relief to know that something good could come from all this.  As an educator, I knew something might be gained by taking part in the research.  Certainly Dennis had no head trauma that I was aware of but the Institute was excited to get their first "swimmer" donation.  This all happened just 6 weeks before Dennis passed.  Timing was everything!  By the grace of God our family and others would benefit from what might be found.

So it was the morning of Denny's passing, the Cottage made all the necessary contacts to the funeral home and to the Sports Legacy Institute.  Dennis was transferred first to the funeral home where his body was picked up by the Pathology lab assigned to this case.  His brain was harvested and body returned in less than 12 hours so all normal arrangements for the family could be scheduled.

After the donation was received, Dr. Robert Stern (neurologist) with the research team contacted me for an interview.  He explained the research process and sent critical release forms for all of Denny's medical records.  After he received all the medical documents, he held an 90+ minute conference interview with me.  We discussed detailed background questions, experiences, behaviors and all other information gleaned necessary to provide valid feedback.

It was explained that the research Dr. Ann McKee would be the leading pathologist dissecting and investigating our brain donation.  She would take the donation "in the blind" not knowing anything about the person (only a number assigned to the specimen).  Dr. Stern's role was to collect all the information available regarding medical treatment, behaviors and life experiences.  When all necessary data was completed by these two researchers, they would meet to put together a report of their findings; how it connected both with the physical specimen and the medical background.

This total process took over eight months.  Then I received a notice that a conference call with the research team was being scheduled.  Our family (myself, Scott, Sondra, Steve 'Denny's brother') and Denny's best friend Bruce were all connected into the conference call.  While waiting for the call that day, I was trying to stay calm but couldn't contain my anxiety.  My biggest concern was for our children and grandchildren.  There was NO known Alzheimer's in Dennis family history so where had this come from.

The phone rang.  The conference started.  Each of us had received a highly scientific three page autopsy report of findings.  The goal was to go over the report and answer all questions.  Much of what was shared in the beginning was lost to me with no scientific understanding of the terms.  But then it came!!!  This I did understand.  Dennis did NOT have familial alzheimer's.  He had trauma induced dementia.

Much discussion followed in answer to questions.  What Dr. McKee shared was that she was sorry that they didn't have more answers.  She said Denny's brain pathology brought up more questions than answers.  She said his donation was critical to further investigation.  They were extremely appreciative of our sacrifice -- but to me -- we were the one's who were appreciative.  Dennis had always stayed in denial of the Alzheimer's diagnosis.  He definitely had dementia though and what we found out was regardless the cause, his dementia would have been treated basically the same.

Our personal neurologist read the pathology findings and was not surprised.  During the ten years of treatment, he was always concerned with the diagnosis (but obviously had to treat the dementia).  He said they are learning so much more about CTE injuries and for Dennis it may have very well happened in Viet Nam.  [Dr. McKee had mentioned that they have findings of CTE with military service in Iraq and Afghanistan].  But regardless of where it happened or how it happened -- I thank the good Lord my children do not need to be overly concerned with the genetics of Alzheimer's.  It was a cloud they would have lived under forever had we not made the donation.

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On a personal note:  I left the Ambassador interview knowing it was not the program I wanted to serve at that time.  Being Ambassador is more of a legislative awareness and communication with legislators for further development of research.  For me, I see my service to those fighting this battle as a spokesperson to bring awareness to family needs, hospital care, emergency response and community support.

Hospice/Hospital

A clinical explanation of hospice most likely would look something like this: 
Hospice is a special way of caring for people who are terminally ill — and for providing support to their family. Rather than providing treatment, the primary purpose of hospice care is to manage pain and other symptoms during the last six months of life.
Hospice care is provided by a team of specially trained providers, including doctors, nurses, home health aides, social workers, counselors, clergy and volunteers.  Family is often very involved in the care.

Even though I had been told hospice care would be helpful with the care of Alzheimer's, I never quite understood the connection.  And as I said in a previous post, I thought bringing these people into the care would me I gave up my 'control' and/or decisions for imminent care that was needed.

It took great patience on the part of the Cottage director and resident manager to convince me that the hospice team had to be part of our plan if Dennis would continue in their care.  I felt bullied by their presentation and their intent.  It was the social worker who bonded with me as she listened attentively to my concerns.  One by one those concerns were answered.  And even though I was not totally convinced -- I agreed to the additional help.  After all, Dennis was definitely a challenge and it gave the staffers the extra help they needed.

I made it perfectly clear from the very beginning that I had to be contacted before any doctor visited Dennis and before any procedures and/or drug changes were made.  I wanted to know the who, what, when and why of anything that was happening.  That seemed reasonable because I was in the facility daily and I was available by phone 24 hrs a day.  They honored that request and on the occasionally oversight of that requirement -- the situation or individual was addressed immediately.  In fact, there was a time when a hospice doctor came to the Cottage and saw Dennis during a routine visit of residents.  I was not aware of this visit  but saw the billing.  Because of our agreement, I brought it to their attention and the bill was reversed. 

During the last 6-7 months of Denny's life, the hospice team was an incredible support for the staffers at the Cottage in monitoring and attending  to Dennis' care.  And an equally important part of their role was the relationship they made with me.  I was not the easiest person for them to deal with but they provided an incredible social worker who walked me through the most difficult of times and helped me understand what was happening and why.

One of my greatest disappointments was that in the Cottage (after hospice was assigned), Dennis could no longer be sent to the Institute for Living but instead had to be taken to a new (and closer) Geriatric Psych Unit at the nearest hospital when his behavior could not be managed.  This was the most poorly designed facility imagineable for a person with late stage dementia. First of all, with each visit he had to be admitted through the emergency room.  Here they were told he had late stage dementia and of his combative behavior.  He caused all kinds of "hell" in the ER and it took the stronger men to contain him in a patient 'cubbie' with high powered shots as we waited endless hours for a bed in the unit.  Actually on his last visit, it was so bad they lowered the head of his guerney and raised the feet because even after the nurses had administered these shots (that would supposedly take down an elephant) he continued to kick and hit and try to get out of the bed.

Once on the floor, Visitors (family) could only come twice a week for a 2-hour period during the week and on Sundays.  Dennis was with seniors who had varying psychiatric needs, therefore, he was forced into an institutional program that required all patients to attend group counseling sessions and other activities that were not suited for his condition. During each of those visits Dennis became even more combative as the staff changed daily and individuals were poorly trained to address his specific challenges. On top of that, the unit was constantly short of care attendants so Dennis was left in pajamas and wet or soiled briefs.  On the days I visited, I personally fed him in a group dining area because if he didn't feed himself, he didn't eat. Obviously, Dennis frightened that hospital staff and quite honestly they frightened him. There comment to me was always that he was fine because it was a locked unit and he couldn't get out.  That was their answer when I arrived and could not find him in his assigned room or community area.  I begged the staff to visit regularly to see what was happening during his stays.  They agreed with me that Dennis had to come back to the Cottage as soon as possible.  

The frequency which Dennis was returned to that unit increased during the last few weeks of his life.  My patience were absolutely dissolved by the insanity and insensitivity to the care provided. On one occasion, I was called to see if I would come to help with Dennis.  No one could get him to bathe.  And he would not let them put on the giant 'wrap-around' paper diapers.  I responded immediately taking the briefs he was use to and feeling good that they had finally listened and would let me help. When I was 'buzzed in' to the locked unit, I went immediately to Denny's room.  He was walking out of the shower.  He was so excited to see me.  "Oh there you are."  Just as I was dressing him in his sleep pants a nurse came in to ask why I was there and I would have to leave.  Well, as you might imagine, I lost it!  I explained I did not break into the unit and that I had received a phone call to come.  She demanded I leave citing the rules and I insisted I was going nowhere.  She went off in a huff.

So of course in a few minutes, a security officer and a professional looking lady appeared at the door.  I looked up and said, "I think I know why you are here."  She introduced herself as the managing director over the hospital.  I didn't give her time to speak further but interupted to explain all that had happened and why I was there.  I explained the difficulties they were having and why it was so important for me to be there and help.  She acknowledged my concerns and the situation and suggested only that in the future I call for a supervisor or administrator to express my concerns.  As I look back now, I am sure it wasn't as smooth as that just sounded but I got my point across and stayed with Dennis for a few hours until he napped.  When Dennis left that facility one last time, I vowed I would not rest until I had taken an educational stand in trying to help units like this make meaningful changes to the care of dementia patients.  [Up to this date, I have had no success but I haven't forgotten ... as you can tell.]

This description of hospice care is foreign to what most of us would think of in a general sense.  In this facility, it was an extra team of individuals dedicated to management of  pain and other symptoms during the last six months of life. I choose to think that even though this was not the perfect experience with hospice ... Denny was not their normal patient care situation.  He was a strong, active and otherwise healthy man who challenged anyone caring for him.  I can honestly say I had to come to a point of trust!  I had to trust no one was going to drug or dope Dennis to control him but there were safety concerns that could not be ignored.  Just as my family could no longer stand by and watch the danger in home health care for me (and for Dennis), the Cottage and Hospice team had to take a stand in their decisions to keep everyone safe.

As difficult as this is to write about, it is in direct contradiction to the person Dennis was all his life (before dementia/Alzheimer's).  I had met him when I was 15 and found him to be the kindest, most spirit-filled and stable person I had ever met.  Just as I said in a previous post (when he beat my brother that Thanksgiving weekend) ... "if I am going to hurt the ones I love, then I should be dead."  He was devastated by what was happening and the world was frightening to him.  

I will close this post by saying that a few weeks after returning to the Cottage, early one morning at shift change, Dennis was found on the floor face down with knees drawn under him.  No one knew how long he had been in that position but he was near death.  His face was swollen and his was unable to help them move him.  An ambulance was called and he was rushed to the hospital.  During that short stay, our doctor determined that Dennis had rhabdomyolysis.  As defined in Wikipedia, this is a condition in which damaged skeletal muscle tissue breaks down rapidly. Breakdown products of damaged muscle cells are released into the bloodstream; some of these, such as the protein myoglobin, are harmful to the kidneys and may lead to kidney failure. The severity of the symptoms, which may include muscle pains, vomiting and confusion, depends on the extent of muscle damage and whether kidney failure develops. The muscle damage may be caused by physical factors (e.g. crush injury, strenuous exercise), medications, drug abuse, and infections. 

Over the past two years Dennis had suffered many of the causes for rhabdomyolysis.  His muscular system took its first big hit when he wandered that long distance for 3 days.  Next he had numerous hospital visits due to kidney failure, blood clots and infections that were addressed with IV therapies 21 days at a time.  But with each setback, his system was breaking down to the point of no return.  

We were advised Dennis would  live no more than 7-10 days and we were at a point for no more treatment.  It was going to be comfort care for his final days.  Scott, Sondra and I waited patiently as Dennis was transported back to the Cottage.  I made a quick call to Denny's best friend and he came immediately. The kids and I said our final words for the day and Dennis was listening but not speaking much.  Then Bruce walked in the room.  

When Bruce walked in the room, he walked to Dennis and reached out with a handshake and his old familiar greeting .. "Hey what's up partner?"  Dennis came to life with a lunge towards his friend as they shared a barrage of expletives about who could beat who in the water.  The kids and I watched in amazement as these two best friends shared what would be their final words.  Within a short period time (just minutes), Dennis leaned back into the bed to rest.  He was quiet.  Bruce turned to us with a puzzled face and said, "I think I just wore him out with that arm wrestling exchange we just had.  I wasn't sure if he was happy or mad at me."  Of course we were accustomed to his familiar sense of humor with Dennis. It wasn't long thereafter that the hospice staffers were arriving to take over care of Dennis. 

Later after everyone had left, Dennis was given his morphine and he was resting peacefully, I asked him if he still wanted to go see his mother and he responded without hesitation, "yes".  I told him I thought it was a great idea and we were busy making arrangements for that to happen. He smiled.  Thinking I would have 7-10 more days to say my goodbye, I could say no more. I remember lying awake that night crying softly and praying for mercy.  I prayed for mercy for Dennis and myself.  I could not begin to imagine watching this dying process for the next 7-10 days. As it worked out, we were called back to his bedside in the early hours of the morning. Before we even got there -- he had passed.  He lived only 8 hours on hospice.  As difficult as it was to accept, God had answered my prayers.  His timing was merciful for Dennis and myself and our family.  

The Cottage ...Dementia Care Facility

On numerous occasions and with every doctor visit ... whether it was the medical doctor or a neurologist, I was advised to place Dennis in a care facility for about 3 years before I ever gave it serious consideration.  I was fortunate that for those three years, my brother Doug was able to live with us and help surpervise Denny's care.  But as time progressed, the agitation, aggression, and constant wondering was making it difficult for any one person to manage.

There were occasions when Dennis was re-admitted to the Institute for Living (dementia care specialized) to monitor the physical progression of the disease and determine what prescribed medicines would make his behaviors more manageable.  Then even his beloved psychiatrist at the Institute recommended to me that it was time for placement in highly specialized care.

Up to this point it took a 'village' of family: Sondra (daughter), Ian (grandson) and Doug (my brother) to keep Dennis engaged with those who loved him dearly.  But even the family outings that Sondra's family took that included her dad became increasingly difficult to manage.

Then during a visit in that October, Scott (son) pleaded with me to place his father in a care facility.  His words were something like this: "It is bad enough we are losing Dad and we can't do a thing to stop it.  But my concern now is that I don't want to lose you as well.  I see the toll this is taking on you!"  He went further to express his concern that I do this for the family and how the grandkids needed their grandmother.  It was a sincere and emotional conversation that I was not expecting.  Because quite honestly, I really hadn't given much thought to anything but taking care of Dennis.  He was my focus!

In similar conversations with Sondra, we made plans for a placement.  The psychiatrist had Dennis at the Institute and suggested it be best if we tell Dennis he was leaving the hospital for a care facility until he was better.  She felt he would be more accepting of those words and that suggestion.  Pine Tree Cottage was identified to be appropriate and convenient to family so all arrangements were made.  All necessary arrangements were made with the Long Term Care Insurance so after 90 days, the monthly payments would be covered in full.

Before transfering Dennis, we then moved personal items to his new 'home'.  I spared no expense at making his part of the room 'homey' and familiar.  I had preferred he be alone (more on that later) but the director insisted he have a roommate for the initial enrollment period.  In the middle of all this I came to the sad realization -- Dennis was never coming back to our home again.  There are no words to describe what that felt like.  During the night time hours, I waffled on the plan .... 'yes, no, maybe, not now, no never'!  I had numerous conversations with our children and my siblings.  I thought if I could get just one person to agree with me, I would not make this change.  Much to my surprise (and for the first time), my sister became a strong voice for our extended family.  She explained I would not like what she would say but there was no way she would agree with me regarding prolonging the placement.  She said, "I am going to be your voice of reason.  It is past time...way past time!  You have taken such good care of Dennis long after anyone thought you should and we have all been quiet.  But with the continued damage to his brain, the danger for your well being and that of others.. it is time."  She hoped this would not make me angry because she definitely was my last hope for reasoning a delay for this move.

So with a heavy heart... Scott, Sondra and I took Dennis to the Cottage.  He was greeted in a friendly environment that engaged him with staff and residents.  He was confused but went along with my explanation that he would be staying there until he got 'better'.  Of course his obvious question was "how long?"

We had been advised that when we left, we should not return for at least 7 days because he needed to relate to them.  He needed to trust in their care which until this time was totally with me.  So when it was time to leave, he wanted to go with us.  The staff did a great job of distracting him with music and dancing while we were hurried out of the building.  All I remember was how I was crying and was filled with remorse and sorrow almost a feeling of betrayal of Denny's trust and love.

It didn't take seven days before the staff was calling me to come for a visit.  Dennis was struggling with the placement and was increasingly agitated when trying to escape.  We spoke on the phone and I assured him I would come visit soon.  When I did finally see him, I wanted nothing more than to pack him up and take him home.  None of it made sense.  He should be with me 'til death do us part'.  The staff and my family were encouraging and gave me constant reassurance that this was the right thing to do.

For Dennis privacy was not expendable.  The fact that strange women were walking him into a shower room and assisting him with bathing was not something he adjusted to quickly.  On more than one occasion, I was there to witness him chasing the care attendant out of the shower.  But with time, his trust of their care made that hygiene concern a non-issue.  And of course that lead to wearing briefs (diapers for adults).  Dennis did not fight the introduction to the briefs as I would have expected.  He was actually comfortable with the non-invasive care the attendents would use to keep him 'clean'.

The months came and went:  Thanksgiving, Christmas, New Years Even, his birthday, our anniversary, Valentine's day, St Patricks day, Easter and the rest.  Most residents of the Cottage were 'prisoners' to their disease and this facility.  I made it perfectly clear (under great objection) that I would be taking Dennis out of the Cottage almost daily for various activities.  I took him to get hair cut, beard trim, manicure, pedicure, movies, dinner and visits with family/friends.  He never wanted to go back but would do so when I explained that Doug had to go home and I was working --- so I needed him to stay their so they could care for him and I could work.  He hated it (I am sure) but I believe he did it for me!  He always wanted to do the right thing for me.  Unfortunately, with Sondra it wasn't quite as simple.  When she would return him back to the Cottage...he would beg her not to take him back.  That was emotionally hard on her (as would be expected) but she continued to include him in as many outside activities as she possible.

[Funny story: Just a few weeks before Christmas, the Cottage accepted a new resident.  She was a spry little thing who spoke like a sailor. Much to my surprise, it didn't take her long to latch on to 'her man'.  During a routine visit, I walked up behind Dennis (sitting at a table) and leaned over to touch his shoulder and give him a hug.  He was excited to see me and got up to give me a hug.  All of a sudden I hear this loud and aggressive voice say, "Get your hands off my man."  It took me by surprise so I just ignored the words thinking she wasn't speaking to me.  As I reached for Denny's had to walk to a sitting room, she started to charge forward cursing and threatening that he was her husband and I better get my hands off him.  WOW.  I encouraged Dennis to join me at the Gazebo in the back courtyard.  As we moved quickly out the locked door, I could hear her banging on the door and continuing her tirade.  After taking some deep breaths, I said to Dennis, "That little lady thinks you are her husband."  He smiled and shrugged his shoulders saying, " I know.  She asked me to be her husband.  I didn't ask her.  I told her I don't have any money."  This of course brought a smile to my face as his innocence showed in that comment.  This attention for Dennis became so constant that the staff had to distract the lady when I came to visit.  It always saddened me a bit when I would arrive to find him sitting with her (or her with him) and they would be visiting and smiling.  It took time for me to get past my own sorrow and not having my husband home to realize if this 'friendship' made their days a little brighter, I would just accept that as God's will.  When the little lady died a few weeks later.... I can honestly say I was a bit sad.]

It didn't take long for the staff, our family and myself to realize Dennis needed the continuous care and management of his disease.  His aggression reared its 'ugly head' on many occasions with staffers, residents and even an occasional guest.  This incidents placed him in the hospital for more frequent visits.  Meds were adjusted, readjusted and adjusted again.  He grew to love some of his care givers because the one thing he could always sense was if people genuinely cared for him.  It was a particular incident when he head butt his Cottage manager almost knocking her out that cause management and myself great concern.  This person was his strongest advocate and could always manage his mood swings up to that time. His aggression was more like a seizure-state of mind... explosive, short and then finished.  Whether it was tossing furniture, throwing shoes at his roommate, throwing water in the face of another resident or refusal to take medicines; it  all seemed to pass quickly.

Four months into Dennis' residency, management came to me requesting we put Dennis under hospice care.  I was not in agreement out of my ignorance.  I didn't know what a tremendous team approach this would provide as monitoring the dementia was becoming increasingly difficult.  My biggest concern was that under hospice, I would lose all control over Denny's care.  I was assured that would not be the case.  With hospice, we had a nurse, social worker, doctor and extra care attendants as needed.  In these final months, infections would cause an array of problems.  His blood clots in the calves were never dissolved and that was increasingly a concern with the discoloration and swelling in his feet.

[I want to take this time to share my challenges when picking a care facility.  In the beginning, I wanted to spare no expense in putting Dennis in the best possible environment.  I was a bit hung up on appearances.  I liked the formal dining rooms, private rooms, fancy dishes and the ability to set up like a little two bedroom 'apartment'.  But what I learned very quickly was that these more elite facilities had strict rules about behavior.  And I heard horror stories about residents being evicted if aggression was demonstrated.  I knew going into this process, aggression and explosive potentially dangerous behavior was indeed the problem.  So at that point I had to set my priorities on a facility that I could openly explain the challenges that would be observed....without concern that I would get a call to 'come get him'.  

Through a friend, I found a facility that was an older cottage with semi private rooms only.  Nothing was fancy but the director assured me that Dennis would be well taken care of and that they could address whatever happened.  As director we had many discussions.  I had his personal phone number.  Regardless of what went wrong (and many things did), we were always able to talk and the issues were addressed.  In one very heated discussion I remember equating our partnership as a marriage of sorts. I explained that we could 'divorce' and go our separate ways but I wanted to stay there and work things out.  The director later shared with me what a tremendous learning experience it was for their facility since Dennis was one of their youngest and most physically active residents.  Never before had they had family take a resident out of the facility on a regular basis.  He explained that when most residents were placed it was because the family could do nothing with them. And for us -- he went on to explain they had great difficulty managing Dennis but that I could help them and it was all manageable. Dennis spent the last nine months of his life at the Cottage ...never to return to our home again. Rarely a night went by when I didn't lie awake wanting to go get Dennis and bring him home.  The internal battle and conflicting conversations within my head were more than I could bear. All I can say is that faith in God and love of family helped me stay on this path.]

Nine Weeks ...

It was early in June 2009 when I woke to find Dennis on the floor doubled-up in pain.  He could not get up and was bent over. I knew I needed help moving him so I hurried to the phone to see if a neighbor could come.  By the time our neighbor arrived, I knew I had to get Dennis to the hospital.  This pain was beyond anything that I had seen him experience in the past.

When we got to the emergency room, the tests were ran and nothing was determined to be the problem.  It was a puzzle so he was admitted for observation and further testing.  He had to have a contrasting cat scan or ultra sound or both -- I can't remember which.  When he was returned to the room, we sat quietly until the doctor could come in to talk with us.  Within no more than 15 minutes after everyone left the room, Dennis went into respiratory arrest.  I called for help immediately and everyone came rushing in.

I was escorted to the hallway while the nurses and staff worked feverishly to get Dennis back.  When they were able to successfully get him back, he was moved quickly to Intensive Care.  While in the ICU, Dennis was on a ventilator for three days.  We weren't getting much information as to the cause and what all was happening.  Our doctor did say he thought there had been a medication that had caused the original respiratory arrest.  It was a medication that Dennis obviously could not tolerate (when combined with the others he was prescribed with Alzheimer's).

During those three days, our kids and friends kept vigil with me.  I contacted our parish priest to see if he could come to visit the hospital.  He was out of town but assured me he would see us when he returned.  Those days were weary.  The kids dealt with differently as would be expected -- and of course, I was in a deep fog.  Things were said.  Feelings were hurt.  The kids weren't speaking to one another when the door opened and in came Father James.  We were all by Denny's bedside with deep confusion, fright and sorrow.  Father did an incredible job of bringing us together as a family.  In prayer we were able to once again focus on Denny's health crisis.  The church no longer calls it the "last rites" but instead calls this prayer visit the annointing of the sick.  When Dennis came off the ventilator and was able to speak with us, he said he remembered nothing about what had happened.  And so it was on the fourth day, Dennis came out of ICU and spent a few days in this acute care facility before being transferred to a long term care facility further south from Pasadena.

Once transferred to the long term care facility, our real challenges began.  Dennis had developed extensive bloodclots in both calves that now caused concern.  Doctor ordered an IVC filter in his right abdomen area. He was not a candidate for coumadin or other blood thinnners so the filter was an insurance that blood clots would not travel to the heart or brain.

Our doctor had determined that it was the movement of a blood clot to Denny's abdomen that had caused the orginal pain the morning I found him on the floor. Through IV therapy it was believed he would regain his strength and be able to return home.  That treatment period was about 4.5 weeks.  For an alzheimer's patient in the hospital, that is a caregiver's worst nightmare.  The very day we transferred Dennis, I saw that he was being put in a room a good distance from the nurse's station.  I got into a heated discussion with the admitting nurse stating this was not going to be a good situation because of Denny's wandering during the night.  This was a new and strange environment so I anticipated his confusion to increase (especially since the doctor was not continuing all the Alzheimer's drugs for that period of time).  Once the nurse saw I was not going to back down from the "battle", she took me aside and said, "Please let your doctor know that he should order a one-on-one care attendant for 24 hours a day."  She explained she was not suppose to tell me that but she understood my concerns and after a brief time with Dennis -- she agreed.

Well even with the care attendant, I spent countless hours at the hospital.  At night I tried to get some rest only to be called at 1:00, 2:00 and 3:00 in the morning by the charge nurse.  It was a variety of concerns from him wandering into people's rooms, to being combative, to taking apart his bedding and so on.  There was medication they could give him but it had not been on the orders so I would travel to the hospital with the medicines hidden in my purse.  Once I would get Dennis settled, I would return home making sure I let the doctor know that those meds must be ordered (PRN as needed).  The calls were always a plea for help- We can't do anything with him.  He won't listen.  He wants to go home.  He is looking for you! Looking back I can only relate this experience to that of a child looking for the parent.  Hospitalization was frightening for Dennis when I was not by his side.

Dennis responded well to the IV therapy and physical therapy such that after 4.5 wks, I was able to bring him home.  It was such a relief and we were both excited to be back home together.  Dennis was weak but was cognitively doing well and was in good spirits.

Three days later, the pain returned.  Called the doctor and he said for me to take Dennis back to the hospital immediately.  This time a big part of the pain was kidney failure.  Once admitted, it was determined that his kidney's were working only at about 15% capacity.  The uroligist gave me little hope that this would be reversed without dialysis but the treatment plan was started immediately.  During those days, the nurses cautioned me that this may be the "beginning of the end".  I started thinking of hospice and the decisions that would have to be made.  I was in a whirlwind of emotion trying to take it all in and do the right thing for Dennis.  When our regular doctor arrived that morning, he said his office was getting calls about hospice.  He asked if I had given up?  I explained the conversations with nurses and hospital staff.  He assured me he thought Dennis could pull through and that he wouldn't give up if I didn't.

My heart filled with joy as once again, Dennis was transferred to the long term care hospital.  The kidneys responded remarkably well to the treatment but we had infection in the lungs that needed IV therapy once again.  It was another 4.5 weeks of treatment before we came home. We continued with the one-on-one care attendant but the issues continued with managing Dennis' alzheimer's in this setting that changed personnel daily and had very little experience with caregiving for dementia patients.

When we were finally able to go home, Dennis was extremely weak.  My brother came to stay with us to help out.  He and Den would take little walks at first and then they eventually worked up to walking the one-mile path around our community lake.  He resumed his bowling once a week and was actively involved with Doug ... attending Gatherings (for individuals with dementia).

During this last stay in the hospital, there was one day when I came in to visit him and it was relatively quiet.  I was sitting next to the windows (where we had placed 10-15 family pictures).  Dennis was glancing past me to a picture when he said,  "If you stay for just a little while, you will meet Linda.  She is my wife and you will really like her."  I was taken back until I looked at the picture and realized it was a younger picture of me.  In that moment, I realized he didn't recognize me but did recognize the picture.  I just took a deep breath and assured him I would stay and that I would love to meet her.  Then we went on about our morning routine.

What I learned from all this hospitalization time was that the family must speak loudly to maintain proper care for their loved ones.  Stay with them as much as possible and when that's not possible make sure proper supervision is in place.  In Denny's case, I had to give a voice for his needs and be an advocate to educate all those who worked with him regarding his family, his interests and various ways to engage him in conversation.  I made a booklet that provided all care attendants and visitors with a background of experiences that would help them connect with Dennis.  I was amazed how many people commented on how much they learned from that booklet.

Beyond the physical and emotional challenges faced during these hospital stays, I became alarmingly aware of how poorly staffed hospitals are when caring for dementia patients.  I vowed to never forget the experiences we had and to somehow do what I could to draw awareness to the needs for the hospital and the families in this situation.

New Years Day 2013

Just want to start back blogging today for all the right reasons.  On a personal level, writing is therapeutic.  On a social level, I may have something to share that could help others through some of life's challenges.

The last time I wrote was December 3rd.  My younger brother (age 53) passed away that day.  He had prayed to God to take him HOME for more than a week.  He was tired and his body was ravished with pain from the colon cancer.  I flew to Iowa from Texas to be with Milt and his family but I had no idea how close we were to ending his struggle with disease.

Before I flew to Iowa, I anticipated the challenges of being with my brother and not letting it cause me emotional setbacks as I continued my grief recovery.  So what I did was give "birth" to this blog.  For me writing is therapeutic.  I had a close friend help me set up the blog so that on a daily basis, I could keep on track with my recovery and start writing .. when I wasn't caring for or spending time with Milt.

I was blessed to not be working so I could respond quickly to a call for help.  So on October 31st, I put myself in the direct path of imminent death once again.  I was in Davenport only 3 days when Milt was  taken to the hospital as a result of falling.  He was hospitalized for a few days when it was determined he had lost the battle and would go home for hospice care.

Keeping in mind that I would never willingly walk towards being the primary hospice caregiver (during several days a week) -- it was all a bit frightening to me in the beginning.  Milt's wife had to work 4 - 10 hr days a week to keep health insurance so I stepped out of my comfort zone to provide what care I could with the assistance of an incredible hospice team.  So while I was needed, I got up at 6:00 am and was relieved at about 6:00 pm.

God has a plan.  Sometimes we would run from or choose not to follow His plan if we have a choice.  But I can tell you these weeks with Milt were nothing short of a "gift".  The emotional connection that he and I shared during those four weeks were beyond anything I could have expected.  You see, Milt and I had never been that close.  I am eleven years older than him and since moving away, we never had much more than the normal family conversations and exchanges.  He had always demonstrated a tough exterior that almost seemed cold and aloof.  He demonstrated many of the same characteristics as our father and his father.

But what I experienced was seeing this rock solid exterior... with a heart of gold and a love for family ...that honored family values and faith. When it was just the two of us, we had fun remembering events of our childhood.  He told me stories of family gatherings that I had missed.  And above all, he made me promise to have a family reunion once a year where the guys could fish, the dogs could run, the children could run and play and the women could produce there best recipes to share.  I had to laugh since I live in Texas.  I told Milt, " I have a hard time just getting my kids and grandkids together".  But I assured him I would do my best.

Milt's oldest daughter from a previous marriage had been somewhat estranged.  Milt's wife looked past any issues that might interrupt Milt's and his daughters time together.  It was her efforts that brought great healing and great joy to Milt as she made numerous efforts to come visit, then to come stay and help the family -- more importantly spend time with her dad, her step-mother and little sister (age 11).

Ironically, Milt had the ability to make others laugh and draw them to him.  He cracked jokes!  He had great one-liners!  And even though he couldn't eat solid food, he always wanted us to gather around and eat in front of him.  He explained that he had NO interest in food -- he just did not like being in that bedroom alone.  On more than one occasion, there were no less than 10 people gathered in his little bedroom to watch a movie!  Movies were something he enjoyed but it was exponentially better when it was with family.

Visitors came and went during the day!  He loved the visits.  He asked me to contact others at the schools where he had most recently worked to let them know his days were numbered.  I did so.  Some came  to visit while others found it best to let the children sign cards and even send pictures.  But it was indeed evident that Milt was loved by many.  He had touched lives in an everlasting way.

Milt's passion had been dirt track racing.  He came by it naturally because our father had started that enthusiasm when we were kids.  He had not raced in several years but those friendships from racing were solid.  It was that group of men who comforted Milt during these final days.  Over an over I heard what a great guy he was on and off the track.  He was known as the guy who could keep his head straight in the heated competitions and always present a class act.  And if you have ever been around dirt track racing that is not usually what you would expect.

The final week I spent with Milt was tough.  The morphine levels had to be increased measurably to try and manage the pain.  It was not working.  He would talk about seeing Dad at the end of his bed and wonder where he had gone.  He would tell our younger sister, "I am ready to go but I thought Mom and Dad were coming for me.  I don't understand."  Then one day I heard him speaking quietly in a conversation with God. He was asking to go HOME.  He wanted to make sure God would take care of his loved ones.  He prayed the usual words of a man who is ready.

Then I heard him speak of individual children.  I recognized their names as those of his former students.  Milt worked as a para-educator being assigned to some of the more challenged students.  He was praying that God should watch over them and keep them safe.  And I can tell you this was extra special!  As a retired school administrator, I thought of parents who would give anything to have a teacher working with their child or children who on their dying bed would include them in his final prayers.  It was so touching and once again spoke volumes of the character of my brother.

One particular conversation Milt and I had was when we were talking of death, faith and Heaven.  I asked if he would please let Denny know that I am doing well.  He said of course I will!  "You can count on it.  And when I see Mom and Dad, I am going to tell them what a great job you did of keeping this family together."  I was taken back and responded only that it took all of us to keep the family together.  He replied, "No it was you."  Even though I cannot agree with his comment, his sentiment will be in my heart forever.  Even though I did not feel he and I were particularly close -- somehow I had touched his life at a deep level.  And to that I say, "Thank you Jesus!"

For the last week of his life, Milt kept begging us to help him die.  He would ask our brother to give him extra pills thinking that would help.  His pain and anguish was great.  He asked the hospice nurse and caregivers to please give him more to help him pass.  He would say, "If you can't do it -- then get someone here who can."  Never before had I heard someone beg to die.  He was ready! He had faith!  But it was God's timing not his that would prevail.

When it was evident that death was near, my youngest sister took time off work to stay with Milt and I during the day.  It was such a blessing to have her with us.  I was emotionally and physically teetering on exhaustion.  As with all the other weeks and days, family and friends would come by as comfort for Milt.  Now I could relax with Anita taking over primary care.  I had long been concerned about Milt's youngest daughter being home when he passed, having to call everyone, and being worried I would do the 'wrong' thing.

God's perfect timing never ceases to amaze me. When he took his last breath, his wife and his oldest daughter were by his side.  His youngest daughter was at school where she wanted to be.  Anita and I were in the living room giving them time together.  Then in an instant -- his last breath.  We rushed to the room.  I felt such an incredible relief knowing Milt was ready.

And then it happened!  I started sobbing.  I could hardly stand.  My body was shaking and I could hardly breathe.  I tried calling my daughter (no answer) then I called our son but could barely speak.  First chance I got, I went to lay on a bed trying to get my body to stop shaking and to take deep breaths.  During that same time, others were going through their own reactions to the death (and from what I hear it wasn't pleasant).

The next morning, it came to me what had happened.  After all, I hadn't cried that hard when my own husband died. I had held it together and been strong so I could take care of business.  I held it together so my kids would be proud of me for being strong.  Those uncontrollable tears started as relief for Milt's passing and the earnest grieving of my beloved husband.  I had held onto those tears for so long that they just came gushing out at the most opportune time.

What I can tell you today is that those weeks with Milt (being able to talk with him about faith, hope, love and dying) were instrumental in my healing process.  Giving in to those tears lifted my heart (previously filled with sorrow) to a new awareness of life and living.  I have been blessed by the love of my husband, my brother, my family and friends who were there for me!!  Praise God.