VA- PTSD

So it was that Dennis applied for disability benefits from the VA based on the PTSD symptoms.  The official documents were filed by Frank and we went on about our business -- thinking there was no chance of any benefits but at least we had put forth the facts. 

It was about 5 months later that Dennis received a letter from the VA administration stating that his case was being reviewed.  A short time later, he was scheduled for a psychiatric evaluation at Michael DeBakey Medical Facility in Houston.  During that evaluation, Dennis had limited ability to give specifics about his experiences in Viet Nam.  The interview did not last long.  As we left that appointment, I was more than sure that his appeal would be declined.  There was not enough information.  The psychiatrist did however do a great job of evaluating what was happening with his current mental state and its connection to military.

Then six months later we received a letter.  Dennis was awarded 50% disability and full medical benefits.  In addition, he would start receiving a monthly allotment for disability.  It was a total shock - surprise - unexpected!  But at the time, it was timely as the medical needs were increasing for testing and monitoring the condition.

A series of initial appointments kept us traveling from one clinic to another in the huge medical complex.  It was like working through a maze.  Dennis was in unfamiliar settings with complete strangers as doctors.  Looking back, it was stressful and disorienting for him.  The pharmaceutical benefits were a huge help.  Maintenance medications were prescribed and mailed to us at no cost.  Extensive testing had not been updated for over 6 years so the new baseline was a help to doctors. 

I remember going into a neurologist appointment.  This cute little doctor came into the room.  She was soft spoke and gentle in her introduction to Dennis.  She took all the necessary information and then excused herself: "I will be back in just a few minutes.  I need to go confer with our supervising neurologist regarding this case."  So we waited - not so patiently for Dennis.  Finally the door came open.  The young doctor declared that she had someone with her that she thought I would know. 

There he was..... Dr. K (This was the neurologist that I met on the plane traveling back from the Alzheimer's Action Summit in Washington, DC.  Dr. K was returning from a neurologist hearing in the Senate.  We struck a conversation discussing the terrible traffic getting to the airport.  One thing led to another and we started discussing Alzheimer's and Dennis.  He went into detail sharing his experiences and findings in the research.  I came to find out that he was working with Dr. D at Baylor College of Medicine in her research program AND the neurology department at VA DeBakey.  He had some suggestions for future treatment.  I asked how I could get an appointment with him for Dennis.  He was taking no patients at the time.) 

Dr K shook Denny's hand.  He told me he knew this case had to be me because of the story we shared on the plane.  He said he was personally going to take over Denny's case.  He changed a few meds adding some and taking away others.  He gave me his personal cell phone number and assured me he would be available if needed.

There are no words to describe this encounter.  God's plan was perfect!!  As always...  Meeting Dr. K on that plane was no accident.  Him coming into that exam room was 'divine intervention'.  Dennis now had one of the very best doctors available to monitor his progression into the more complicated and dangerous parts of the disease.

And so it was that we had the VA benefits for a few months before realizing that Dennis could no longer tolerate the medical maze of the VA.  So when the next VA letter came ... there was no longer a concern for the facility benefits.  Skimming the letter I saw the word ERROR.  Goodness gracious what did this mean?  I don't remember the exact wording but basically they were cancelling the benefits effective in like 60 days.  At that point it was all a blur and my greatest fear was paying back any benefits he had already received. 

I contacted the VA Liaison to report the new status.  He assured me he would appeal at my request.  I said I wasn't concerned of an appeal but wanted reassurance that I would not have pay back the previously awarded benefits.  I did return the checks for the next two months but no further request was made by the VA ... the case was closed about six weeks before Denny's passing.

Institute for Living

After the violent episode that Thanksgiving weekend, I started networking to find specialized help with management of the drugs being prescribed.  At the time, I could find only one reputable program at the Mainland Medical Center, Texas City.  It was not a geriatric psych unit but a well established dementia unit, Institute for Living, with a qualified team of professionals needed to assess and manage overall treatment and monitoring. 

When I contacted the Institute, I was advised they would take Dennis if a spot was available AFTER all the legal action had been resolved.  So after completing the judicial requirements with the case, I moved forward with our plans to have Dennis admitted to the Institute.  I had been advised that the stay could take up to 21 days.  Dennis was definitely not wanting to go to the hospital but I explained that after what happened with the police, we wanted to make sure his medicines were balanced properly.

The way the program was set up, we had to admit through the emergency room.  Our son Scott and my brother Doug went with Dennis and me. That process alone made the admissions difficult.  Dennis never liked hospitals and an emergency room is a lot of hurry and wait and wait and wait.  The longer we waited, the more agitated he became.  The three of us did our best to keep him distracted and calm. But by the time we got to the unit -- his patience with the whole thing was gone.  He wanted no part of the admission process or staying there.  With his increased agressive tone, a code gray was called.  About four men appeared standing close by and then it happened -- Dennis began screaming and saying he wasn't stayin and to get him out of that place.  He moved towards me -- then the team of male attendants apprehended him in a struggle.  Scott sheltered me.. quickly taking me by the arm through the nearest exit while I could hear Dennis screaming in the background.  Once we were clear of the unit and in a secure area an explosion of sorrow came over me.  Scott kept saying it would be okay .. Dad would be okay .. and reassured me this was the right thing to do.  Within about 10 minutes a male nurse came to let me know Dennis had calmed and he was begging to speak to me.  He promised them he would not become violent again.  When I walked into his room, he looked like a lost frightened child.  He was begging his "mother" to take him home.  I kept telling him how much I love him and that he would be okay.  But I explained that his medicines were all messed up and the doctors were going to help so he could go back home.  With a sad look, a hug, a kiss and the words I love you, I had to turn and walk away.

The first 7 days of his admission, I could not visit him.  I could only call and check on how things were going.  I found out that for the first four days they had to call the code GRAY for him several times. It was so bad he was frightening the other patients so they moved him to a more distant a room. The head nurse, Mike, (with 30 years psych experience) shared that he saw more PTSD than Alzheimer's symptoms during those days.  I explained that the Alzheimer's had taken him back to memories of Viet Nam.  He had become obsessed reliving those days and would talk in dreams as if he were there.  We had noticed that any time he saw someone with a military hat on, he would go to that person and salute them... saying welcome back.  Of course the strangers were always kind and accomodating when we nodded and 'apology' and hurried on our way. 

Soon the neurologist told me about a Liason with the Veterans Administration (an advocate) who would come to the hospital and help apply for VA benefits...possibly using the PTSD actions.. for some medical and financial assistance. Frank was a great gentleman who did come to the hospital with his little laptop and printer.  He got all the information he needed and filled out the affidavit that was later filed on Dennis' behalf.  Even though he did not think anything would be approved -- he wanted to make a good faith effort to apply.  (More on this later)...

For the next 14 (of 21) days, I traveled to Texas City for visiting hours.  At times I would find Dennis so sedated he could barely communicate.  Other times he would be sitting on the side of his bed (with everything packed daily) waiting for me to pick him up.  With each visit, I tried to personalize his 'bare' room with family pictures, magazines and personal items from the grandkids.  With staff reports weekly to update his progress, I found allies in finding the right 'cocktail' of drugs to help this gentle and spiritual man continue living his life with the highest quality possible.  I would come in at times to find Dennis in the nurse's station eating snacks for the holidays.  I asked if he should be there and they all said ... "sure we have adopted him."  He was settled with them and felt safe. 

What I realized after it was all behind ---- that the program would heavily drug Dennis in the beginning then slowly, very slowly make adjustments that best fit his condition while maintaining quality life.  With scans, it was determined Dennis had a good amount of damage to the frontal lobe where aggression is controlled.  We got answers and a professional team who coached us and supported us for continued management in the home. 

We celebrated our family Christmas that year without Dennis.  He would return home shortly after that celebration.  With adjustments to previously prescribed medicines -- there was an additional anxiety medication to help keep agitation and aggression at a bare minimum.  I was given instructions to be proactive with this medicine.  I could plan for those times when there would be more stimulation and activity in our daily lives -- by giving a preventitive dose of medicine.

[Making the decision to take Dennis to this highly specialized medical unit was purely mine (with support from our kids). In fact, when we were in the ER at Mainland Medical, our personal physician called to check on Dennis.  I explained we were admitting for complete evaluation.  He was more than a little upset with me. We had difficult words and he certainly let me know he did not approve of that decision.  That was upsetting to me because I believed it would give us a different set of eyes and a more current evaluation of the physical and mental progression of the disease.  When the conversation ended, Scott assured me under no uncertain terms that this was indeed our decision and not to be concerned with that call.]

Faith, hope and love was all that carried me through those 21 days of treatment.  I had faith the Institute would be current and specialized to control any future aggression.  I had hope that I would be able to continue keeping Dennis at home with me (our doctor had advised against that).  And love Dennis and our family regarding safety helped me stay with a decision that was extremely difficult.  Just letting go of the day-to-day care was a huge step for me.  In the end, I had to rely on God's love and sheltering comfort to see us through just another step in this journey. 

Jail/Bonds/Court

Thanksgiving 2009 was another great time for family.  We had enjoyed the usual family feast with all the trimmings.  Dennis seemed to enjoy the company - but when he would wander off to the bedroom by himself, I knew it was all a bit too much.  He had gotten to the place where a lot of activity made him uncomfortable.  With five grandchildren in the house, it was anything but quiet. 

Fortunate for me, I talked everyone into decorating outside and inside for Christmas.  This was a win-win for me.  I had a total of 12 'energizer bunnies' working like elves with music and ample entertainment.  Dennis wanted to help so my brother Doug found a job that the two of them could work on together.  With a Chevy Chase moment, we were all finished and the lights perked up the yard with only a few glitches.

By the time kids and grandkids retreated to their respective homes, the four remaining adults were tired and ready for a relaxing evening.  Doug and Beth were still with us because this was right after Hurricane Ike and they were still with us (having just finished up all the repairs on the house). 

Dennis was tired and wanted to retire for some sleep early that Sunday night.  I thought it was a great idea because I knew this had been an extremely active and busy holiday weekend for him.  Doug, Beth and I settled in for a little tv time to unwind before we all went to bed.

THEN IT HAPPENED.....

About 9:00, Dennis came out of the bedroom in a total rage.  He rushed to the recliner where I was sitting and screamed at me in explitives and profanity declaring he was sick of all this.  Initially I wasn't frightened because I had people with me.  I didn't handle it the best because I said, "What are you doing?  Are you trying to scare me..." Before I could say another word he dumped me backwards in that chair and in a split second there was total chaos.

Doug moved quickly towards Den saying, "Hey you can't do that to my sister ..."  Then the unthinkable happened.  No more words.  Denny started punching my brother with incredible rage.  He used Doug as a punching bag pinning him against the wall ... total rage...never pausing to our screams for him to stop.  I had no choice -- I called 911.  Dennis showed no sign of stopping or listening to reason.

When I got to the phone, Denny left Doug to come toward me once again.  I was hysterically asking for police to come help us calm the situation when Doug intervened once again.  This time Denny pinned him at the front door with another barrage of unceasing punches to the abdomen.  The operator kept advising me to quit screaming so she could get some information.  At the advice of the 911 operator, I went outside to wait for the police to arrive.  I explained to the operator that Dennis had Alzheimer's and all I wanted was some help....

Once outside, I heard the sirens and saw the flashing lights in the distance.  By that time, Dennis had followed me outside but was no longer punching Doug.  As four Pearland squad cars hurried to our location, Dennis went into the street screaming to just go ahead and kill him.  He came by me and kept interrupting the officer who was trying to gather information.  Because of his continued aggressive tone, they asked him to step back but he continued. 

Just then the officer said,  "Cuff him!"  What I saw then was a nightmare.  About six officers chased him down in a struggle to handcuff him.  He was screaming and kicking and in total rage once again.  I could see in the distance as they placed him in a squad car that he was trying to kick out the windows of the squad.  One neighbor approached the vehicle and pleaded for Dennis to stop and calm down but it continued.

After interviewing me, the officer went to my brother.  He noted the aftermath of the beating and took a report for domestic violence.  While they were talking, I got a true sense of how bad this situation was going to be.  I got our doctor on the phone to let him know what was happening.  I asked him to speak with the officer in charge.  Dr. Knight confirmed the Alzheimer's diagnosis and asked that Dennis be moved to the hospital and NOT to jail for charges.  The arresting officer said he had no choice but to take Dennis to jail.  Hearing that just put me in a total tailspin!  I couldn't think straight.  I hurried to my brother to make sure he was okay.  We both pleaded and explained this was a medical condition but it made no difference.

We live in a retirement community where everything is relatively quiet.  You can imagine the number of caring neighbors who came outside that late night to see what was happening -- and to see if they could help.  Looking back now, I know the officers had a terrible time managing Den's rage so they certainly weren't going to take him to a hospital setting.  I understand now the decision made that night.

After they left, we went in the house to talk with Doug.  I told him how sorry I was and that if he wanted to fly back home to Iowa the next day I would make it possible.  He assured me he was going no where. He said when all that happened he could see in Denny's eyes that he was 'in a different place' (almost like combat survival in Viet Nam).   Even though he was in pain, he too was concerned for Denny.  Being a brother, he just expressed over and over how glad he was that he took those punches instead of me.  We both knew that I may not have survived such a powerful beating.

Then I had to make phone calls.  I needed to let my kids know what had happened.  I needed to call the jail to see what was going to happen.  My naive way of thinking had Dennis in Pearland jail overnight and back home.  As I called through the night, I could get no information other than Dennis would be moved in the morning to the Harris County Jail to be booked on two charges: resisting arrest and domestic violence.  I had no idea what all that meant but I had nightmares of Dennis being locked up with criminals (and in his Stooey sleep pants).

During several calls checking on Dennis, I could hear loud shouting and metal sounds in the background.  The jailer said Dennis was still exhibiting rage long into the early morning hours.

About 3:00 am, I got a call from a Bonds Company in downtown Houston.  They were letting me know the charges and the cost for two bonds.  I understood nothing about what they said.  I just knew I would spend any amount of money to get Dennis out of jail.  By 5:00 am I was driving the streets of downtown Houston looking for this bonds office.  What normally would have been a frightening drive was secondary to my mission.  I was alone and in the dark of dawn I finally found the little place set up in what looked like an old time gas station.  I completed all necessary paperwork and paid the bonds thinking I could go get Dennis!  WRONG.  The bondsman explained I would have to wait til he was transported and booked that morning - then I would go to the jail with these papers.

Once I was back home, I checked with the Pearland jailer to see if he had been transported.  He gave me a timeline and suggested time to go to the jail.  Never having had a reason to walk into any jail, I walked into the reception area for Harris County Jail expecting to be greeted in a somewhat friendly manner.  WRONG again.  As I told the clerk, I had the bonds paid and the details of Denny's medical condition there was no sign of compassion or understanding.  She said Dennis would be released later that day.  She could not give me a time --- he would just be released to the street.

At that notice, I pleaded saying isn't there anyone who can help me.  I have to know when he will be released because he will be lost.  She suggested I go to the jail release office in another part of the building and plead my case there.  Once I got to that office, I was explaining my situation and giving necessary information to that clerk when a sheriff walked in.  He asked if I was inquiring about Shippey.  [Thank you Jesus! Someone had seen Dennis.]  He said he was in the booking unit when Dennis came through.  He knew immediately something was different.  After booking, he took Dennis NOT to jail but to the jail infirmary.  He apologized explaining he had walked him in handcuffs and shackles.  (Broke my heart). With the information I provided and seeing the situation as he had, he said he was going to get with the psychiatrist treating Dennis in the infirmary to see if they couldn't get him released by 2:00 that afternoon.  And indeed that is what happened.

As Dennis walked off the elevator with this sheriff, he greeted me with the hug of a child missing his mother.  After signing some papers, Dennis and I were alone in the elevator headed to freedom once again.  He kept asking me to look at his hands.  He said, "I don't know what happened but my hands are all swollen."  I assured him we were on our way to the doctor to have that checked out.  During our drive to the doctor, I asked Dennis if anyone had bothered him in jail.  He said, "No but there are some scarey guys in that place.  They asked me what I was in there for and I told them 'I don't know'."  That made me smile because here he was still in his Stooey sleep pants and a t-shirt. 

Once we were settled at the doctors office, the exam found only bruising and abrasions.  I explained to Dennis what had happened to cause the swelling and trip to jail.  He said, "NO WAY!  I would never do that to Doug.  I love him like a brother!"  With a bit more convincing, I told him Doug would show him the wounds if he wanted.  At that he bowed his head and cried, "If I am going to hurt the people I love ... then I should be dead".  I left Doug and Denny to talk for a few minutes.  They made their ammends and Denny never could comprehend what had happened that tragic night.

Once I had Dennis home, I knew that was only part of the process to clear the legal action.  Immediately, I had Sondra contact a lawyer she knew who understood Alzheimer's.  We had a court date and Dennis would have to appear.  Meeting with the lawyer to prepare the case became a problem.  We were going to meet at the court for the first time.  I knew that no one knew Dennis:  judge, prosecutor, nor lawyer.  I knew it would impossible to predict what he would or could say in response to the attack.  I had to put the case together so the legal system understood the implications for this man.

I spent almost a week compiling documents: letters from doctor, every prescription and highlighted side effects, missing persons information, etc.  I presented the lawyer with a binder organized with documents to clearly articulate the case.  In addition to that I had contacted a hospital unit specialized in managing medicines for dementia cases. In that binder was a letter from me indicating a proactive measure to control any future violence with specialized medical attention and testing.  Contact information for that facility made it clear that all legal actions must be cleared before admittance.

With that binder in hand and after a short briefing in the attorneys room outside the court, our lawyer said Dennis could wait there until she met with judge and prosecutor.  After waiting anxiously for a reasonable time, the lawyer returned to say we could go home.  She said the binder I put together so impressed the judge and prosecutor that they didn't need to further try the case.  The judge had asked her to thank me for the thorough representation of this case and its complexity.  They had scheduled a continuance for another trial date but Dennis would not be asked to appear.  The only matter pending was getting legal documents and affidavit stating Doug refused to press charges. 

Thousands of dollars later, all charges were dropped and the case was resolved.  During this short period of time, I was introduced to a foreign world of legal jockeying.  I had experienced every imagineable emotion: terror, fear, anger, sorrow, disbelief, anxiety, appreciation, love, hope and faith.  Faith was the strongest because I knew this was not something I could easily fix or manage.  God gave me strength to endure with no fear for my own safety but only that of others. 

The Hurricanes

Living on the Gulf Coast, hurricanes are a familiar concern. Having lived in the Houston area, we had never evacuated for tropical storms or threat of hurricanes. We just 'hunkered down' and prepared with all safety precautions in place. 

Dennis was actually doing well in 2005.  We were three years into the diagnosis of Alzheimer's but with small adjustments we were doing well.  But when reports of an oncoming hurricane were being predicted, our daughter Sondra insisted that we join her family in an evacuation journey.  Sadly, millions of other people in the Houston area had the same idea. We were driving a caravan of three vehicles with a baby, toddler, three dogs and a cat when we met up with gridlock on the freeway.  The temperature was hoverin at about 100+ degrees.  We determined it best to take the toll road thinking that would be a better route.  What we found was bumper-to-bumper vehicles traveling North from Houston at a speed of about 10-15 mph. 

Our destination was Austin.  The trip from Houston to Austin would normally have taken 3 hours but in that instance it took almost 24 hrs.  It was one of the most frightening things I have ever experienced.  Gas was not readily available so when you did find a station, the lines were miles long.  Restrooms along the way were even more scarce.  Small necessities that make a trip normal were all but gone. What we learned real quick was to turn off the air conditioner and moving at that slow pace you would preserve gas.   Since we left the house late in the afternoon, we welcomed sundown in this dastardly heat.  Even in the heat of the night temperatures were soaring such that we had wash cloths to wipe the forehead and faces of the little ones and just enough water to keep the animals hydrated. 

Dennis was a great help keeping the kids occupied and the animals attended to.  My concern for him was the medications he had to take and with food.  We hadn't planned for the length of this trip so food was the first thing we ran out of and water was scarce. By the next morning, still stuck in this slow moving caravan, we called our son in Austin to see if he had any ideas of a different route that would help us escape the heavily traveled evacuation route.  He routed us away from the heaviest traffic through small towns and a little before noon, we were able to pick up the pace at about 25-30 mph. When water was our greatest need for the little ones and animals, we noticed a hose behind a closed business in a rural community. It was like a mirage in the dessert. We pulled over to take advantage of 'God's gift'.  After drinking the warm water from that hose, We ran water over the little ones and the animals the animals to provide relief from the heat.  The six of us were safe in Austinafter the 24 hr trip. Our son and family greeted us with shelter and rest just one day before Katrina hit land.

On August 28, 2005, Hurricane Katrina was in the Gulf of Mexico where it powered up to a Category 5 storm packing winds estimated at 175 mph.  The hurricane made a direct hit on New Orleans and the rest is history.

With that experience, I pledged to myself that Dennis and I would not evacuate again.  Instead, we would take all precautions to stay safely in our home.  Returning back to work, I heard people speak for weeks about how terrible the experience had been.  For me it was more meaningful to put pencil and paper to work... I wrote a poem, "In HIS Loving Arms".  In that poetry I tried to shake loose of the frightening and dangerous journey we had experienced and replace it with positive thoughts.  I don't know what happened with that poem but it was a reflection of our family members staying strong with no panic, how strangers were helping strangers, and there was no road rage or gun toting gangsters taking advantage of defenseless people.  What I chose to remember was people united in one goal -- to be safe and get out of the way before Katrina landed its force. Facing imminent danger, there was less crime during that time than one might expect.  I thought of how blessed we were that the hurricane did NOT hit all those helpless individuals traveling the roads.

Three years later, weather advisors were predicting another hurricane.  This one was predicted to hit the Galveston area.  Since I already knew that we would not evacuate, we got busy preparing the house for possibility of a few days with no electricity.  In addition, Dennis and I worked diligently to clear all possible objects from the yard that could fly with the high winds only to cause unnecessary damage.  We planned for the worst case scenario where we would take a direct hit with supplies in a big walk in closet.  Even though Dennis knew what we were doing, it was now 2008 and he didn't seem to be concerned with any of the dangers.  He just did his best to help with tasks as I presented them to him.

September 16, 2008-- Hurricane Ike slammed into the Gulf Coast, shredding buildings, flooding streets, and knocking out power for millions of people. With winds reaching 110 miles (177 kilometers) an hour, Ike came ashore over Galveston, Texas, as a strong Category 2 storm just after 3 a.m. EST. The massive storm, nearly as big as Texas itself, moved over Houston before dawn. 

The high powered winds hit before the eye of the storm.  It was nighttime and we lost all power.  Dennis and I just laid down to try and rest.  My goal was to keep him calm as the storm passed over.  It must have been about 2 am when we were heard a loud blast of breaking glass.  I ran to the living area to see the window had exploded.  The closed blinds kept the flying glass from doing much damage but the heavy rains had found a new home.  Normally Dennis would have taken charge and I would have assisted.  I saw his look of confusion!  He was at a loss.  With only a flashlight, I headed for the garage.  I remembered seeing a window size piece of plywood by the cabinet.  My only thought was to see if that piece of plywood would cover that area and keep the rain from pouring in.  Dennis followed me running back and forth.  He expressed concern, "What is going on?"  I asked him to just stay with me and we would be okay.  After seeing that the wood would cover, I had to find a way to anchor it in place.  The winds were blow extremely hard so the blinds were not holding back anything.  We moved furniture and I took hammer/nail to pound the wood and the blinds to the wall.  I want to tell you it wasn't 'pretty' but it was holding. 

With a sigh of relief, we moved back to the bedroom.  Dennis needed to use the bathroom but when we walked into the master bath there was water on the floor.  In the dark, couldn't figure out where it was coming from.  No broken windows were evident but while I was mopping it up I felt a drip.  The water was streaming in the ceiling vent.  There was a ceiling fan and vent in close proximity.  They were both providing a pathway for a steady stream of water.  After laying a pathway of towels to the commode, Dennis was safe to take care of business.

With water coming in the den window, water dripping from bathroom ceiling and later water coming in the kitchen ceiling, we were finally at a point where we went back to lie down and wait out the storm.  Once we were settled, Dennis seemed to calm like a child cuddled with parents during a storm.  I laid there wondering what we would wake up to at the dawn of  morning and how to possibly deal with all these damages without my husband.  I knew at that time he would not be the handyman who could help put things back together.  I had a challenge coming my way.

When the sun rose and the winds calmed (the eye of the storm), we looked outside to see a backyard 'carpeted' with black and silver shingles.  Our neighbors house had no shingles left.  Their shingles had most likely acted as a torpedo breaking our window.  Then there were the trees torn out by their roots.  There were foreign objects in the yard and flower beds that had obviously blown in during the night.  Once outside, we saw our roof had heavy damage with large areas of missing shingles as well.  No broken windows in the kitchen area but a substantial lead across the ceiling.  All in all, we were okay and the property damage would be taken care of. 

Scott called early that morning and asked how he could help.  I explained the situation and we decided he would bring supplies from Austin for both us and our daughter Sondra.  He brought two huge generators, large gas cans full of gas, extra long heavy duty extension chords and heavy duty trash bags for clean up.  It was a welcome site when he arrived.  Dennis was so happy to see him and did what he could to unload the truck.

Our insurance company suggested we move out of the house while repairs were made.  I explained that was not in Denny's best interest.  He was familiar with our home and I didn't want things to be any worse than they already were by taking him to a strange place to live.  A quick call to my brother Doug (in Iowa) got us some much needed help to supervise repairs and keep Dennis comfortble. 

With Doug's help, in approximately four weeks, I was able to get the insurance adjusters out in a timely fashion (not easy) and find the necessary contractors/subcontractors.  We had the house completely roofed and the dormer repaired to meet code.  We had an upstairs wall, master bedroom ceiling, kitchen ceiling and walls in dining room/den area all repaired and/or replaced.  We lived on cement floors and hollowed walls but we were 'home'.  Dennis spent every day in familiar surroundings and with family who were there to help out. 

With all the confusion and destruction, I praised God for a brother who was able to come help and an insurance company that understood the importance of keeping Dennis in his familiar surroundings.  There is no doubt in my mind, extra effort was made to get things done because of the challenges of Alzheimer's.  After all was said and done, we had much to be thankful for.

I share these two situations on the blog to remind others of the challenges facing families when there are storms and/or extreme heat weather conditions.  We were blessed to have family to readily help but not everyone has that assistance.  It is always good to check on your neighbors.  [As a matter of fact, Sondra used her generator and extension chords to help her two elderly neighbors who had no electricity.]  People helping people is such a blessing and all part of God's work. 

The Lucky Bark

February 5, 2009, Dennis took our grandson's dog, Lucky, for a walk at a nearby park.  He was visiting at our daughter's home in Pasadena (where we lived for almost 30 years) and took the old familiar walk to the park or around the block.  Lucky and Den were buddies.  It was their routine anytime he was there for a visit.

It was also Denny's birthday.  I was teaching at the time at a nearby high school.  We had plans to go to dinner and celebrate another great year.  So at about 4:00, I arrived for the pickup.  A family friend had been with Dennis all day and he said he was concerned that Den had not returned yet from the walk.  So off I went driving to the park and around the block to see if I could catch up with him.

When I didn't find him in the immediate vacinity, I called nearby friends and our daughter to help in the search.  Within 30 minutes or less, I knew we needed help.  While still searching, I called 911.  The operator asked a few questions that annoyed me because all I wanted was help.  Then I got the message - "You will have to hang up and call your local police department.  This is not an emergency for 911."  At that I got more than a little hostile.  I kept calling back to no avail. 

So it was that I had to abandon my search and go back to the house to get the number for the local police department.  I knew by then we were facing a potentially dangerous situation.  Contacting the police department was by then another frustration.  Being transferred from one person to another (each asking what were my needs) ... made my blood boil to be quite honest.  Finally I was told that an officer would be dispatched to the house to take an official report and get the detailed information.

I waited for about 45 minutes for the officer to arrive.  It was by then dark.  It was 7:30 when he arrived.  My immediate concern was to have everyone on the alert to watch for Dennis and Lucky.  The questioning seemed endless.  The obvious questions didn't concern me but it was -- parent information, social security, where he was born, and so on.  All this was being writting on a little spiral notebook.  My anxiety was visibly noted.  I kept pleading for quick response for officers on patrol to have this information.  I explained that we had about six family/friends looking and where we had looked.  When the officer left, I felt some relief that FINALLY we had our help.

About 10:00 pm came and we got a call.  An officer had located Dennis.  We were all so excited and everyone withdrew the search.  They would be bringing Dennis home within the hour.  Thirty minutes later the phone rang.  It was not the call we wanted.  There had been a mistake.  The individual they had stopped was NOT Dennis afterall.

I had no choice but to stay by the phone.  I went to our home in Pearland to stay that night thinking he might have walked home (about 10 miles or so)-- and might show up there.  There were no phone calls and no Dennis.

With the help of her friend, Sondra made flyers with pictures of her dad and that he was missing.  They did a great job.  She spent the night driving the streets and talking with anyone who was open for business.  She explained the urgency of finding her father and left them with a flyer that provided contact numbers.  When dawn came she passed a patrol car and decided to stop and share the flyers with the officers.  As she told her story of searching and provided the flyers --- she was shocked and horrified that they knew nothing of the search.  By then in was 8:00 am (16 hours missing). 

The officers were apologetic.  Then one asked that she never use his name because he was suggesting she contact Texas Equu Search.  He gave her the contact number and assured her they would provide the help we needed. When Sondra called me with this information and told me what the officers advised, at first I was reluctant.  But we were desperate for help.

 

I promptly called the contact number and found an immediate response to our cry for help.  They took the case # for my report to law enforcement and said they would set up a command station at Strawberry Park (one block from where he disappeared) within a couple hours.  They were never hesitant to help.  They had only one request and that was for me to contact the supervising officer in charge of the investigation to let him know they were joining the search.  It was a protocol that they honored to keep everyone informed and working together.  They would take care of everything on their part.

 

While I was contacting EquuSearch, Sondra had contacted her office at the Water Department.  All city vehicles had been given the information and were keeping their eyes open as they went about their daily duties.  The school district police department was doing the same.  So at that point we had pretty much canvassed the Pasadena area.

 

In relaying this new support status to the local police department, I expressed my frustration and utter disgust that the officers on the street that morning knew nothing.  The officer apologized and said he would look into that and get back with me.

 

In a return call, I was told that there had been a computer glitch and that the report had not been put out on the 'network' but that had been corrected.  I was also advised that a detective would be meeting me within the hour at our daughter's home. 

 

When the two detectives arrived, I did not see any sense of urgency on their part.  They asked what I thought were mundane and 'stupid' questions.  What I wanted was ACTION.  I wanted reassurance that people were looking for my husband.  [This was February and he had been missing 18 hours.]  The detectives asked if they could search the house and our vehicles.  My response was one of fury.  I had no kind words at that point.

 

Lucky for me, friends and fellow PISD police officers were with me for support and they advised me to let the detectives do their job.  Didn't make sense to me but the search took place.  [Later I realized the detectives didn't appreciate the presence of the District officers but they were my friends and were there only for support.]

 

While all this was happening, our son, Scott arrived to join the search.  His immediate concern was to calm me down as I vented about the searching of the home and vehicles.  He knew calm was what was needed to get the job done.

 

When the search was finished I provided Denny's doctor information to confirm the Alzheimer's.  I asked for an immediate Silver Alert posting.  What I found out was another shock.  Dennis did not qualify for the Silver Alert because he was not yet 65.  I argued to no avail and expressed my fury at such a stupid criteria.  [What I found out was that in Texas Dennis met every criteria but the final part was 'must be 65 or older'.  Nothing about this made sense.]

 

Then one of the detectives asked me to speak with him in his vehicle.  His questioning did nothing but infuriate me at that point.  He and I had some curse words and I left the vehicle.  Then he asked to speak with the person who last saw Dennis.  It was Craig (a family friend) who had been with him all day.  By this point, Craig was an absolute wreck.  He loved Dennis like a brother.  He was distraught with what he might of done different.  The detective took him to that same vehicle.  Craig returned from that interrogation visibly distressed.  He said they wanted him to go with them for a lie detector test -- and he was having no part of it.  Already frustrated with the detectives, I expressed my opinion and supported Craig categorizing the request as absolute nonsense and a waste of time.  I did however offer to provide them with the Accutracking report for the van they had used that day.  It would give detailed locations and times for all the time in question.  They didn't request it but I gave it to them anyway.

 

The detectives were at the house a couple of hours. Shortly after they left, we got the call that EquuSearch was starting to set up their command post at the park. It was early afternoon now and 'no Dennis'.  I remember sitting on a park bench that day with a good friend.  I had calmed in the tranquility of the park.  It was calming just to see people driving in with their four-wheelers.  Total strangers continued arriving;  as families, as volunteers, as friends.  All I could think was how awesome it was to finally have this abundance of help (now almost 20 hours later).  Everyone drove by as they reported to the command station and got their assignment.  Even though Scott and Sondra were in and out of that area, I purposely stayed away from that hub because the over abundance of energy would have only taken me to a more fearful place in my heart and mind. 

 

People were coming and going all afternoon and early evening.  Friends and strangers came by to give me a hug and provide support.  At about 8:00, we (Scott, Sondra and I)  went to the command station to thank everyone. When I walked in, the two detectives were there and my friends from the PISD police dept were there.  It was quieting as the coordinator had started sending home volunteers for the night.  I thanked everyone and it was explained to me that at 9:00 pm the search would be suspended til early morning.  Scott went with me as I returned home to get some sleep.

 

At the crack of dawn, we were all back at the park.  People were coming and going on that chilly morning.  I remember thinking that Dennis had been missing two consecutive nights in the cold of February.  I could only pray he found a warm place to sleep.  I found myself in constant prayer!  Only the Lord could carry me through these hours of desperation. 

 

At 10:00 am that Saturday morning, the kids came running to me on the bench.  They had found Dennis.  He was in an Angleton, Texas hospital.  He had been found in a field 45 miles from where the walk began.  Hunters had found him. 

The search was officially over. 

 

Scott, Sondra, Ian (grandson) and I all jumped in a vehicle to make the trip.  We had no detailed information but he was alive and in the hospital emergency room.

[While driving, a trooper called to let me know he had Lucky.  The dog was okay and he would bring him to meet us at the hospital.]  When we arrived in the emergency room, Dennis looked absolutely weathered and disoriented.  He smiled and was clearly pleased to see family.  His heart rate was extremely high.  He was dehydrated.  Doctors said he was 'near death' when he came in.  He was stable at that point so they were moving him to Intensive Care.

 

When the trooper came with Lucky, we got more information.  He said two young men were out hunting rabbits that morning in a nearby thicket.  They heard a dog barking.  It was a strange bark and not one that they expected to hear in the middle of nowhere.  When they found the dog, they saw that he was tied to a small tree.  They also noticed a pile of clothes on the ground but no one was nearby.  As they stood wondering what to do, they heard a sound.  They looked out to see Dennis standing in the middle of the thicket mumbling incomprehensible sounds.  They immediately called 911.  The trooper went on to describe how difficult it was to get back into that area with paramedics.  I could only cry out "Thank you Jesus".  When I asked for the names of the hunters so I could give them a cash reward, the trooper said everyone was so focused on caring for Dennis that they never got the names. 

 

After turning over Lucky to us, I asked the trooper if we could speak privately. I asked if he felt Dennis had been abducted and driven there?  Had he been physically or sexually abused?  The trooper said that was one of the first things they looked for.  The medical staff truly believed (after careful examination) that Dennis had walked that distance on his own.  There was no indication of foul play.

 

When I share this story with friends, they all say, "You aren't suppose to know their names.  They were angels sent to save Dennis' life."  And so I title this post the lucky bark.  Lucky (the dog) stayed with Dennis and inevitably saved his life.  Without that bark, Dennis may have breathed his last breath in the middle of nowhere.  He may never have been found.

 

Once Dennis was moved to Intensive Care, we contacted our family doctor.  He requested that Dennis be transported back to our local hospital.  Dennis was transported by ambulance to Pasadena the next day.  In Bayshore hospital, it soon became apparent that they did not have the ability to supervise Dennis once he was up and mobile.  Once Dennis had cleared any health concerns, he was released to me for home care and recovery.  I was better equipped to keep him in a safe and familiar environment.

 

Before being discharged there was a legal issue to deal with.  As a result of Dennis being a missing person, Adult Protective Services would have a social worker representative interview Dennis and me regarding safety.  Having already been investigated by APS after the Brownsville incident, I knew the routine.  I understood their purpose.  However after such a blatantly poor response by the law enforcement (regarding 911),  I was defensive and not in the mood for another interrogation.  When the lady started the all too familiar questioning, I politely interrupted to try and explain the safeguards that were in place.  I told her, "We have made the necessary adjustments on this journey with Alzheimer's".  She stopped me in that sentence to correct me by noting this was not a journey.  Then she had me -- how dare she correct me.  I proceeded to tell her, "I have put in place many safeguards. I have a tracking device on all vehicles.  I have a care attendant who stays with Dennis daily while I work.  I have him registered with the national Safe Return program.  And I am working with a psychologist who specializes in caring for Dennis and myself during this time.  It has been and always will be my intention to let Dennis live life to its fullest with necessary safeguards.  He had walked the dog on a regular basis and in a familiar neighborhood many times with no problem."  At that, she closed up her notebook and acknowledged my preventative actions.  She knew at that point there was no neglect and/or abuse in this case. 

 

It was absolutely amazing.  Near death experience with only 3 days hospitalization and he was going home.  He didn't remember much about that period of time when he was missing other than to say the dog got tired and he carried him.  He also said that sleeping at night he piled up leaves and stuff to make himself a bed.

 

[A week after getting Dennis home, I made an appointment with the local chief of police.  I met with him to thank the department for support.  And as an educator, I wanted to share with him some of my concerns about the investigation and how it could very well of cost my husband his life.  Unfortunately, I was a woman alone!  My gesture to provide suggestions and ask serious questions was met with great resistance.  It was clear this department accepted no wrong doing on their part.  Not being fully satisfied with that meeting, I went on to meet with the mayor.  I wanted to discuss my concerns about the handling of 911 and the delayed reporting to patrol vehicles.  He had obviously been forwarned of my issues.  He politely listened and it was more than apparent he would NOT be doing anything further after I left.  Frustrated I left with the satisfaction I had tried.  I had given a voice to other families and individuals facing the challenges of Alzheimer's -- and for now that had to be enough.]

 

 

 

The Biker

When I start this post about the biker, I need to explain that Dennis had been an avid cyclist for almost 30 years.  When we lived in Pasadena, he left the house each morning at 5:00 to peddle his way to the high school about 10+ miles away.  As a coach, he was trying to find time for a personal workout so this was HIS uncompromised time to take care of that.

In the beginning, he got a nice road bike to start biking.  When his mother heard he was doing this she gave me stern orders to tell him not to do this.  Her words were, "He has a family to think of.  It is too dangerous and he could get hurt or killed riding that distance early in the morning."  When I shared her concern, Dennis assured me that he was taking every precaution for safety.  In fact when I looked out the window to see him ride away, he looked like a Christmas tree or UFO going down the street.  He wore lights that were constantly on and a couple clipped to his backpack that blinked continuously.  He never rode without a helmet and was cautious not to travel heavy traffic areas.

And so it went that biking was added to his love for swimming.  Biking was relaxing for him.  I remember when Scott was getting ready to leave for college, we went out shopping for a new bike.  Denny's bike had problems and we just decided to purchase another more updated bike.  So off we went to the Bike Barn.  He rode a Schwinn mountain bike and 'fell in love'.  Much to my surprise he said, "Lin I want you to try one of these bikes for yourself."  I fussed and said that was a waste for me but he insisted.  After a brief test ride, we found ourselves the proud new owners of 2 new bikes.  And for a period of about five years, we would have our carefree bike rides through the neighborhoods and on the bike paths of Iowa during the summer.

Dennis had mentioned for several years that he would love to do the RAGBRAI in Iowa.  He had heard of it -- read about it -- and just wanted to do it 'someday'.  In 2006, four years after the diagnosis, I made contact with the Davenport bike club about how to get Dennis registered for the ride.  There was a lottery and you couldn't just automatically register and get to go.  They gave me further contacts as I shared our story of Alzheimer's.  I knew it had to be soon rather than later for him to be able to make this ride.  Before the initial registration, I spoke with Scott (also an avid cyclist).  I asked him to join his dad for the ride.  I knew it would create great memories for the two of them but just as important was the constant supervision for this 444 mile ride (week long event).  Of course he was on board to make this dream of his dad's possible. 

Starting in January, Dennis started training for the ride.  He increased his daily mileage and added the conditioning of continued distance swimming.  When we got to Iowa in early June, Steve (Denny's brother and cyclist) took on the responsibility of more intense training with long distance rides several times a week.  Watching Steve and Denny ride off for their morning rides each day was so heartwarming.  This was truly a team effort.  His brother's attention to training and conditioning kept Denny focused and inspired.  As the time approached, his increased excitement and enthusiasm was noticeable to everyone.  Afternoon naps were part of the daily routine but it was all good -- and obvious to everyone that he could physically make the ride.

Steve and I had some concerns about Denny's bike.  After all this was a 444 mile ride up and down hills.  He had noticed that Denny was needing some reminders to shift on the hills to preserve his energy.  We visited the local Sparky's bike shop and found a terrific buy on a Klein road bike.  It was a gem!  (Didn't know bikes could cost $1000+).  Dennis thought he had a cadillac.  He was like a little kid who wanted to sleep with his new toy.  We threw in some 'Butt Butter' and a few other necessities as final preparation for the trip.  He moved his odometer from the older bike and he was ready to continue training for the ride of a 'lifetime'.

Scott and I had discussed the logistics of camping each night and the backup support that would make this ride possible.  We owned a van at the time and I would follow the route in a distance or ahead as a support vehicle.  There were many unknowns to be covered;  sleeping in different place every night, sleeping in a tent, night wandering, getting to portable 'potties' in the middle of the night then finding his way back and so on.  Scott very carefully placed his tent close to his dad so he would know if there was movement.  Of course his dad's snoring didn't make things pleasant but it was a sacrifice of safety. 

At each stop for the day, we would meet.  I would hear the stories of their day and the warm hospitality of all the wonderful people along the way.  There were laughs and detailed stories of sites seen along the ride.  All in all the ride was a great success.  And we (Scott, Steve and myself) felt like we had been a part of something very special.  We made it possible for Den to fulfill this dream.  [God was with us on this venture every step of the way.  If we had asked the doctor about this whole venture, he would have been aghast at such a possibilty citing all the things that could go wrong. During some of the little issues of the trip, safety was covered.] 

I have included this write-up of the ride so you have some idea how special this really was.  Cyclists from all over the country come for this ride each summer.  It is one of the premiere rides for cycle enthusiasts of all ages.

RAGBRAI XXXIV
July 23-29, 2006
How powerful a spell does RAGBRAI cast over the first-time rider? Just ask seven-time Tour de France winner Lance Armstrong who participated in the ride for a couple of days. After just a few hours on the road, he was hooked and promised to be back for the entire week next year. The overnight towns along the route this year had a great mix of rookies like Sergeant Bluff, Waukee, and Marengo, two had not hosted in many years, Ida Grove, and Newton, and two veterans, Coralville, and Muscatine. All of the towns performed like seasoned professionals. As was promised, the route was short but challenging with the first three days guaranteed to get your attention.
The riders left Sergeant Bluff the first day and headed back in time to Ida Grove and the town’s medieval assortment of Knights and castles. The next day started out as hot and hilly as the first day, but with fewer towns to stop in on the way to Audubon. The final stretch from Manning to Audubon will go down as a mini version of Saggy Thursday with its unrelenting hills, headwind and heat making the last 21 miles seem like an eternity. Some riders were so delirious when they reached Audubon that they swore that they saw a giant bull on the side of the road. Their eyes were not playing tricks on them, it was Albert, a 30-foot tall, 45-ton concrete bull that the town is famous for. On to Waukee where the hills finally came to an end about 15 miles from the end of the day’s ride. Waukee pulled out all of the stops with a great central setup and top notch entertainment. The only damper was a storm that hit later in the evening.
Wednesday morning found the riders on the road heading east to Newton and one of the biggest crowds ever witnessed on RAGBRAI. Lance Armstrong, who had jumped on the ride outside of Elkhart, spoke to a crowd that engulfed the downtown square that evening. As the premier spokesman for cancer research, he spoke to the crowd, which included many cancer survivors, about what still needs to be done in the fight against the disease. He promised to return next year to bring attention to the cause in a state that has a powerful say in the selection of the next president.
On Thursday, the riders experienced cooler weather as they made their way to Marengo. The day was filled with stories of “Lance” sightings, from a pie shop in Sully to a beer garden in Montezuma. Friday from Marengo to Coralville, the ride was a short one at 48 miles with one particularly nasty hill outside of Cosgrove. As the riders came into town, they were honored as the first to ride a stretch of road finished just for RAGBRAI. Coralville had a great venue set up to host the riders, where Armstrong again spoke. He received a Hawkeye jersey presented by University of Iowa Head Football Coach Kirk Ferentz. Riders traveled through West Branch, the hometown of Iowa’s only President, Herbert Hoover. The final leg of the ride was an easy spin down to the Mississippi River town of Muscatine which has hosted RAGBRAI five times.

After the ride, it wasn't long before Dennis was unable to ride out on the rodes with a group.  His inability to follow cyclist ettiquette made it dangerous for him to be in a group (for himself and others).  He no longer had the automatic timing to change gears to ride altering terrains.  At that point Dennis was limited to riding in our neighborhood.  Short rides that were monitored. 

Then one hot summer day he left for a ride in the morning and did not return at his regular time.  Hours passed and neighbors helped me check surrounding neighborhoods to see if we could find him.  Nothing!  It was 100 degrees by early afternoon and I grew increasingly concerned.  Finally I had no choice.  I had to notify police so they would also be on the alert.  An officer reported to our home and took the report.  I provided current photo and information to put things in motion.  Late afternoon the officer returned to speak with me.  As we were speaking Dennis rode up on his bike.  He was hot, exhausted and 'irritated' to see the officer there.  We tried to speak with him but he was doing his best to disregard our concerns.  He went on to explain he didn't see the problem or why the officer was there.  He told the officer, "I was over by the freeway waiting for her because she said she was picking me up.  When she didn't come, I just found my way back home".  And with that he walked into the house.  I thanked the officer and apologized for any inconvenience.

During his next visit to our house, Scott promptly flattened both tires on the bike.  He said under no circumstances should his dad be riding and so it was that this love for biking came to an end. 

Daily Living

Noticeable changes to daily life became more evident after the first couple years. There  were changes in organization, dressing, eating, hygiene and sleeping.  We just made adjustments according to what was becoming difficult with time.

For work it became apparent that I would would help Dennis calendar his schedule and keep his papers organized.  This seemed to help him continue working.  Without a doubt, I believe other high school coaches were stepping up to help Dennis when they noticed any difficulties he had with completing tasks in a timely manner.  The support was there with the administration, the coaches and myself.

On a more personal basis, the cell phone was the first casualty.  Misplacing first then later losing a few cell phones made it obvious that the phone difficult to manage.  Regardless of how important it was for me to have constant ability to call Dennis, it was not possible for him to keep it with him; on him; or near him.  After losing a few phones, we gave up!  It was made easier when I was able to put tracking phones hot-wired to our vehicles.  At least, I had constant computer access to his location.

At home organization of his personal items was another observed change.  Dennis had always been meticulous to every detail with his clothing and personal items.  He had his own walk-in closet so I didn't pay much attention to those areas.  What I did start to notice was that he was 'hoarding' or 'gathering' unusual items in his drawers.  I would find napkins, kleenex, papers, unopened mail, books, magazines, trinkets and at times even crazy little items of mine -- in his drawers or in his closet.

After retirement and about four years into this disease, I noticed some peculiar dressing changes.  Dennis would put on socks that didn't match; shoes that didn't match; warm clothes when it was hot and shorts when it was cold.  It was not a huge issue but one that this wife would bring to his attention.  Hated seeing him with those socks (mismatched) so I just got rid of all his socks and bought all new ones exactly the same.  And I put away shoes that could be mismatched.  In other words, I gave him less choices!  It was the easy way to handle he situation.

During the night time hours, he started experiencing what they call sundowning.  The best explanation I can give you for that is the individual wanders aimless during the night in their sleep.  We discussed the option to put locks high on the doors so he could not get outside at night.  I didn't go through with that safety issue since I had an alarm on all doors and windows.  Yes there were a couple of times when he went outside during the night (sometimes to the backyard other times to the front).  But with the alarm I could intervene and guide him back to the bedroom or bathroom.

By about 7 years into the challenge of alzheimer's, the night time wandering became more aggressive.  I could only guess that he would wake from dreams that took him back to Viet Nam and combat.  He would jump up in the bed and scream for me to watch out for the snakes.  I would find him wandering around on the floor looking under the bed for 'something'.  At other times he would wake up shouting in anger.  I just did my best at calming him. 

One of the worst experiences night time experiences was when he woke up after midnight -- ran to the bedroom door hitting it and slamming on walls.  He was screaming in complete rage that made no sense.  "I am sick and tired of people making me feels stupid.  There is nothing wrong with me!!  Quit treating me this way.  This has to stop.... and so on".  I followed him to the kitchen trying to reassure him and calm him.  He continued the tirade so I distanced myself from him with the kitchen island separating us.  Seemed as though time stood still in rage that was for the first time extremely verbally violent with outward attacks on property that gave me grave concern.  I kept asking Denny, "Are you going to hurt me? Please stop .. you are scaring me."  He screamed no he wasn't going to hurt me as he approached me coward in the corner of the kitchen.  As the tirade continued, I slowly worked my way to the phone.  Without much thought I called our son for 'safety'.  He could he the ranting and the rage that made him suggest to call the police.  I responded with concerns of fear what they might do if they came.  Scott said, "At least get out of the house."  I replied that I would try.  And then I got around to my keys and headed to the garage for the car.  Dennis followed me and as I got in the car and locked the doors, the rage increased because I was backing out of the garage.  Dennis beat on the car with reckless abandon in a seizure state that had no meaningful trigger.  I drove out the gate of our community and called our daughter Sondra to come help.  I explained what had happened and assured her I would wait before returning to the house.

When Sondra and her husband arrived, we drove back to the house.  Dennis was had calmed and was pacing quietly in the kitchen.  The four of us sat at the dining room table.  We let Dennis speak.  He was assured that we love him and how his anger had threatened safety in our home.  I explained how frightened I was that he might have hurt me or hurt himself (especially when he was trying to pull the counter top off the island).  He just spoke openly how angry he was about what was happening.  He didn't like feeling stupid.  He didn't like the reminders.  He was feeling like "less than a man".  He felt he had lost control of what was a very calm and caring environment.  He didn't like the feel of the medicines.  He hated all the doctor appointments.  He went on speaking freely for about an hour.  By the end of our intervention, Dennis was clearly calming himself and genuinely sorry for the outburst.  He didn't understand what had happened.  He hugged me and assured me he would never hurt me or let anyone else hurt me -- ever! 

On a lighter side, there were the times when comical things would happen.  One morning I woke up to find Dennis in a striped sweater -- my striped sweater.  He must have gotten cold and put it over his t-shirt top.  Other times I would be out making breakfast and Dennis would go off to get dressed.  He would return with his shorts over his pajama pants.  And he would have two or three shirts layered on some the warmest days in Texas.

Shaving became an issue only in that Dennis was meticulous in cleaning the razor after each daily shave.  When he came to me saying his razor didn't work, we would just go out to Walmart and buy another.  This happened a few times before I realized the problem was he would take the razor apart to clean it -- but he couldn't get it back together correctly with the right parts in place.  The answer to that challenge was simple.  Every two weeks, I took him to have a haircut and his beard trimmed.  He looked good in a beard so it made everyone happy. 

Another unexpected habit reminded me of the little boys bad habit when they are outside playing and don't want to go in.  The last few months when Dennis was home, I noticed he would be going outside to the patio.  Oh I just assumed he was going out to play with the dogs.  Then one day I looked over to see him go outside but our 'girls' were inside.  I watched to see what he was doing.  He walked around to the back of the house and relieved himself by the air conditioner unit.  Startled I said, "Denny what are you doing?  You can't go the bathroom outside.  Come back in and I will help you to the bathroom."  And so this continued but under watchful eye, we would catch him going out and join him or redirect him by asking if he had to go to the bathroom.  His answer was usually yes.  It was always ironic and a bit disturbing that to go outside, he had to walk by the guest bathroom.  He never did understand my concern but of course I had to make sure this did not happen when the grandchildren were visiting or out front where the neighbors would see. 

And finally, the mailbox.  Dennis loved going to the mailbox each day.  That was his chore to help out.  It worked great until he started spreading out the mail.  He would open some envelopes and not others.  He would leave some mail on the counter and tuck away others in his drawer or closet.  I tried the mail basket in the kitchen that worked for a bit but in time going to the mailbox was not feasible.  Too many times I didn't get the 'bills' or statements that had due dates or action to be taken.  The mail key was taken from its familiar place in the kitchen and soon he didn't miss that walk to the box.

Daily living with dementia challenges was met with creative ways to make adjustments to daily living skills.  I cannot tell you that many of these events were not frustrating to me.  In fact, I have to admit I didn't handle things well at times.  When I was in denial, I just assumed with a little help he could do much more than he was doing.  I thought I could 'love' him out of forgetting or being confused.  I wanted to have an answer for everything.  It was when I was broken and on bended knee that God spoke clearly to me.  Faith, hope and love would have to be my guide.  All three were imperative to a meaningful and caring environment for both Dennis and myself. 

Angels

One afternoon, after returning from senior bowling, Dennis said "I met an angel today".  I smiled and said, "Really?"  He went on to explain that Barb was an angel.  She was a neighbor who volunteered to drive him to bowling once a week.  And during bowling she helped him when he was confused.  He said, " It is like God knows what I need even before I do.  So anyone who helps me must be an angel."  And from that moment on, we recognized and spoke of our angels.

We all have different gifts and ways to serve the Lord.  Soon after Denny's diagnosis, life began to change in ways other than the element of disease.  Individuals I thought were such good friends somehow faded away.  Our social network shifted to almost nothing.  All I could feel was loss on all levels of life as I had known it.  This shift caused feelings of abandonment, loneliness, sorrow, betrayal and all other feelings that drain you of the positive energy needed to face under normal circumsances.  With that loss and the lack of meaningful support groups, I began to withdraw and focus only on caring for Dennis and whatever was to come.

Staying in the bowels of sorrow can only be destructive.  One evening, I was driving us home from our daughter's.  I had been troubled all day by a confrontation/argument we had earlier that morning.  With tears falling slowly, I said, "Dennis I am so sorry for the argument this morning.  I am not angry at you.  I love you!  But I hate this damn disease and what it is doing to our lives."  Being the Godly man that he was and always the comforter, he responded, "Lin, I love you too!  But we can't live our lives in anger.  We can't look at all the bad stuff.  I have lived a good life - a great life.  And I will continue to do so as long as God allows.  I can swim and bike and we still have each otherand our family.  It's going to be okay."  True to his spirit of the loving and strong husband, his comfort forced me to a new perspective.

After that conversation, it became perfectly clear to us that angels were not necessarily those that we picture with heavenly wings in the clouds.  Not at all because we soon recognized angels as those who took time to show a caring and supportive spirit.  Looking back now, I better understand that we all have the opportunity to be 'angels'.  Those who recognize the needs of others and so unselfishly give of their time, talents and support are indeed doing God's work. 

From then, I started looking for the good that was coming to us.  I looked at the completed strangers who stepped in to help.  As the saying goes, I made it a priority to 'look at the cup as half full' and forget the empty or what was lost.  In doing that angels came to us with every need.

For me the angels were acqaintances who would stop to ask me about Dennis and how was I doing.  Theirs was not a polite passing but a genuine concern and a pause to give a hug.  It would be that person who walked past my classroom door and waved just to let me know they were there.  And there were neighbors who had in the past had been just a friendly face who now called, came by and helped in any way just to show support for the two of us. 

For Dennis the angels were acquaintances who volunteered to take him bowling; drove him to swimming; watched out for him in the neighborhood; sat with him at the hospital; stopped to chat when he wanted to tell his military stories; lended a hand when he got bit by the dog and I was at work.  It was the person or persons who sheltered him with food and care at the Gathering Place.  It was the high school coach who welcomed him to swim workouts with the high school kids.  It was the childhood friend who appeared after 40 years to become his best friend, confidant, voice of reason, traveling companion and co-caregiver.  Later in the blog, I will tell you about hunters in a field and a dog named Lucky who were angels during a life threatening event.  School district police officers who stepped in during periods of wandering acted with great support and kindness helping us get Dennis home safe on more than one occasion.  And my younger brother, Doug, gave his time and caregiving heart to three years living with us so Dennis had supervision and was safe.  That alone was special but you will read about a beating and police action that took Doug's care to an entirely new level beyond caregiving.

Again I say to you that the spirit of angels (those doing God's work) came to me through faith.  It took my husband recognizing that there were strangers reaching out to help during difficult times:  to comfort, to support, to nourish, to encourage, to administer, to advise, to take over tasks/chores, to provide resources; and to give of their time to give these individuals a place in my spiritual journey.  My committment to see the good in life and the people who were readily available (instead of those who disappeared) made everything we faced much easier because we were not alone.

The reason I use reference to angels is because these individuals have no grandios notion of doing God's work -- it just happens.  They unselfishly reach out when they see a need.  They have no fear of rejection nor concern for recognition.  And most important, if you tell them they are one of your angels -- they are taken back by such a suggestion.  The humility of those who care (sometimes for a complete stranger) is beyond your daily interactions with your prior circle of support.  And you will read here in the blog that often we did not know their names.

Angels were and are among us -- if we believe and recognize God's perfect timing of comfort and support.

Support

One of the first things I heard about support groups was from the doctor.  He was adamant that I could not face the challenges of this disease without support from family and others who were caregivers.

So it was that early after the diagnosis, I took that advise.  There was a group meeting close to my home so it was easy to attend the weekly meeting in the evenings.  Dennis knew where I was going but he was not interested in attending.  What I found was a leader with understanding, compassion and heart for those living with this disease in their lives.  There were pamphlets, brochures and books providing a wealth of information that helped me better understand what was or what was going to happen. 

The meeting itself would average about 15-20 people sitting in a circle taking turns sharing their week's experiences and validating one another regarding the challenges both physically and mentally.  I was only 54 when I attended that first meeting.  The people in the room were 65-80 years old.  They were speaking of care challenges for an elderly spouse or parent.  Their stories were sad and I could see the toll it was taking on their individual lives.  By the time it came to me, my story seemed insignificant.  My husband was still functioning at his work and our lives were still "normal" with few adjustments.  I left more depressed and overwhelmed so it soon became apparent this was not a good support for me -- although it was invaluable to others in attendance.  Our challenges with early onset alzheimer's were different.

I later contacted the Houston office for Alzheimer's to ask if there were any support groups specifically for Early Onset Alzheimer's.  I was guided to an Early Stage support group that was soon to start.  This was a group with couples who met together and then break-out sessions.  This sounded more like what I wanted so we attended the first meeting.  When the group gathered, it didn't take introductions for us to realize these were couples in their mid 70's.  Keeping an open mind, we listened carefully and followed the agenda for the meeting.  By meetings end, it was clear that early stage just meant they had recently been diagnosed and were just starting the journey that we had traveled for four years at that point.  Our issues, our concerns, our questions and our needs were not the same.  Seemed crazy to me that there was not a network for younger couples, individuals with this diagnosis. 

Time passed and I once again searched for meaningful support on the Internet.  I joined chat rooms where caregivers and those diagnosed wrote openly of their sorrow, their challenges, their experiences and the progression of the disease.  I just read the posts and did not join.  I was not ready.  But after a time, I needed more one-on-one answers to questions.  Through the Internet I was connected to the Early OnSet Alzheimer's program in Oklahoma in 2004.  The contact person I spoke with was like an angel from heaven.  The timing was perfect!  In a few months they were holding a conference in Tulsa.  She explained that it would be a perfect way for me to network with others; find valuable resources; and actually hear from some leading research scientist.  She sent me all the information and registration -- plus she suggested I apply for a scholarship fund that would pay for the trip and the conference. 

The conference was my first experience with others who fully understood the early onset issues.  It was at that conference I first heard about the Safe Return program.  It is a national registry program to assist if individuals wander and are unable to give valuable information for their safe return.  Once registered, the individual wore a medallion or bracelet at all times.  The caregiver would also wear the medallion (in our case) in the event the caregiver is injured (it alerts respondents that this is an alzheimer's caregiver).  In addition, I attended workshops regarding various community resources that were available.  There was an Internet registry for chatting and keeping in touch to support one another through the issues we would face.  And best of all, we heard from the research specialists out of Bethesda, Maryland. 

After the research presentation, Dennis and I waited patiently to speak with the doctors.  Willing listeners, I was able to tell our story and background and share my confusion.  After hearing our story, it was obvious to them that Dennis did not fit the profile that they normally attributed to EarlyOnset Alzheimer's.  They went on to explain all the diversitfied characteristics of dementia and various misdiagnosis.  Obviously they noted the dementia but were not convinced of the diagnosis.  Further follow-up was suggested.  It was then that they told me about Dr. Doody (sp) at Baylor College of Medicine (in Houston) and the work she was doing.  They gave me that contact number and suggested further investigation.

Within a few months from that conference, we were able to get an appointment with Dr. Doody. Just getting to the Baylor College of Medicine was in itself a challenge so by the time we got to the right office, Dennis was frustrated with the whole thing.  At that point, I think he felt like I was dragging him around and putting him through the "hoops" for nonsense.  He didn't in any way 'buy into' the diagnosis of Alzheimer's. 

During this appointment, preliminary (and at this point familiar) testing was performed and tests were ordered.  Dennis tolerated my insistence on further testing.  It wasn't until the neuropsych testing that everything "blew off the chart".  That testing is what he had previously experienced at UTMB in Galveston.  Within a few minutes of being in the examining room, the door flew open and out he came.  He walked right past me saying,  "This is bull shit!  I am tired of people trying to make me feel stupid.  I am out of here!  I am done.  Never again"  Out in hall waiting anxiously for the elevator, his angry tirade continued.  I promised him then and there that I would not ask him to do any of this again.

The good thing that came out of that exam was that I was introduced to a psychologist (specialized in Alzheimer's disease and caregiving), this was an introduction that would prove invaluable to me in the months and years to come.  She explained to me privately that she could meet with me one-on-one as Denny's caregiver.  It didn't take long for me to take advantage of her services.  With her I found a listener who understood the complex dynamics of being wife, mother, caregiver and individual while living life with a loved one with the diagnosis.  It seemed there was nothing she did not understand.  Her reassuring presence in my life was calming.  Everything I felt was okay.  I would write letters and journal (never with the intention of sharing with anyone but her).  When I would read my personal concerns, observations and reflections she would at times cry with me.  It was as if I had a kindred spirit...an angel of mercy you might say.  I remember walking into her office on one visit and handing her three prescriptions for medicine FOR ME!  I had been at our medical doctor a few days earlier.  When that doctor asked how I was doing, I started to cry as I shared the challenges and sorrow that comes with watching what was happening.  His answer was the only thing he knew to do -- drugs.  I was upset and said, "What do I do?  When I go to my doctor for any ailment now, he is thinking it is all mental and wants to give me drugs."  She looked at the prescriptions and agreed with me wholeheartedly that I did not need that level of medication.  I was relieved to know she agreed.  Our sessions became my refuge.  And later, in one very critical meeting with the psychologist, she said, "If you are not careful, your kids are going to lose two parents."  I was sharing with her that I had "lost myself in the disease".  I didn't know who I was anymore.  Together we decided it would be good for me to return to work if that opportunity was available.  My concern was that if I was not with Dennis to care for him .... he might decline more rapidly.  She assured me the progression would be the same whether I worked or not.

During the final years of Denny's life, he joined a friend (diagnosed also) to attend the Gathering Place.  The Gathering Place was a program with Interfaith Care Partners in Houston.  Various churches would host respite time once a month to give caregivers a break and those with Alzheimer's a community of equals and engagement with other caring providers who scheduled activities, exercise, prayer, lunch and general support.  Never did I think he would continue with this program but he did.  I had returned back to work so the wife of the other gentleman took the "boys" to the Gatherings.  Soon the number of meetings increased to where there was about one a week at a variety of churches in the area.  Dennis loved his meetings.  He sensed the care, support and love of others.  Engagement with others made him happy.  Previously a quiet and unassuming man, he became more outgoing and talkative with complete strangers.  It was a great connection that made him smile.  He sensed love and God's gentle kindness through the hands of others.

Support -- the right support for both the person with dementia and the caregiver are critical.

The Friend

Just before our retirement in 2004, Dennis and I were attending a Texas Senior Games swim meet in Temple, Texas.  As you can read in his biography (Sports Legacy Institute), he was a lifelong swimmer and coach.  About 2000, he started attending meets for Seniors just to get together with friends and have a good time.  The fact he was a seasoned competitor made it even that much more fun.

At that meet, none of the competitors knew of the diagnosis for Dennis.  Just like I did for my kids when they were young swimmers, I made sure Dennis got entered in his events and registered.  And at the meet, I wrote his event numbers and lane assignments on his arm so he wouldn't forget. 

All was well until I heard the gun go off and I looked up to see that Dennis was busy talking and had missed his event.  And then a flash -- I revisited my occasional thoughts that once Dennis couldn't follow the organization of swim meets, he would be "lost" to our world.  Tears just fell down my cheek as I rushed to the other end of the pool.  I approached the ongoing conversation with a declaration that he had just missed his event.  To his shock, he could see I was correct.  We walked back to our seats to regroup.  You see -- in this meet if you miss an event, you are out of the rest of the meet.  So what was I to do now.  Just then a tall (and I mean very tall) man approached us.  He asked me what was wrong and I explained.

He hurried off to speak with the officials and Dennis was placed back in the meet.  The man who approached us was Bruce.  Bruce had swam against Dennis when they were kids in Iowa.  Bruce lived in nearby Iowa City but competed against Dennis in the summer and in high school meets.  He told me he always looked up to Dennis and wanted to beat him.  When we had time, I told him the diagnosis and what we were facing.  He said, "Don't you worry about a thing.  Denny is my buddy.  I will take care of the issues here at meets.  And I will do my best to make sure he swims as long as he can. You just relax and cheer for him.  I will do the rest."  And so that friendship took on a whole new function. 

Here is where I say that God walked into our picture.  Well you know what I mean.  He was always there but I was trying desperately to monitor and be in charge of everything myself.  Without a doubt, I knew this was an answer to prayer.  Dennis loved this guy.  Den had never been one to hang out with guy friends.  He was more of a loner or with family.  But with Bruce it was different.  Bruce cared for him like a brother. 

This relationship was so powerful that it was a blessing for both of us.  For the next four years, Bruce did all he could to keep Denny swimming.  It gave me time for respite and they were having a blast.  Bruce picked the meets, the events and made all traveling arrangements.  They roomed together as they traveled together.  Dennis assured me he could monitor the meds and any other needs Dennis might have while traveling.  It was his goal and my goal that Dennis enjoy every bit of swimming that time would allow. 

If you look at the bio (SLI), you will see that Dennis and Bruce traveled to Texas Senior Games, YMCA Nationals, and Masters Nationals for an incredibly high performance in swimming.  During those years of competition (and with the help of Bruce and his buddies), Dennis was a national champion in all three levels of competition. 

In fact, when Dennis was inducted into the Texas Senior Games Hall of Fame for swimming (just a few weeks before his passing), Bruce announced that Dennis was ranked in the top 5 in the World in the FINA ranking for the breaststroke.  Neither Dennis nor I were aware of that ranking.  For Dennis it was all about swimming, the people that he met and the fun of competing.

Swimming was God's gift to Dennis and his connection that made him an inspiration to others, as a coach; friend; neighbor and family man.  Doctors were amazed that he was so strong and did so well.  They attributed his athleticism; his engagement with others; his goal setting and his positive attitude for his ability to live a quality of life beyond expectations.

The following letter was written by Bruce Rollins to the TISCA coaches association shortly before Denny's passing:

To all of my friends who I have regaled  with stories for years and/or know of Denny Shippey, my Iowa friend and swimming buddy for many years who was diagnosed with Alzheimer's disease at the age of 54, please say a prayer or two for him and his family.  Denny metaphorically is on his last lap with 3-10 days to live.  He has been in and out of hospitals for the past 2 years and it appears that his body cannot fight for much longer all of the things that have taken over his bodily functions.  His lovely wife Linda called me this morning and let me know that the doctors who have fought so hard to make Denny comfortable and to continue functioning have recommended hospice care.  In a sense, this is merciful for Denny who has had to endure a lot.

Those of you who knew him will remember him as a great and humble swimmer, willing to swim whatever we asked of him on relays, despite the fact that in 2007 and 2008 he was ranked as the 4th and 5th fastest 50 Meter Long Course breaststroker in the world by FINA in his age group.  He honestly just loved swimming with all of us at meets and looked forward to them.  Others will remember him as a great high school swim coach who was honored by the Texas Interscholastic Swim Coaches Association with their highest coaching award.  As late as last summer, he was selected to the Texas Senior Games Hall of Fame, the first single sport swimmer ever selected.  Finally, others will just remember him as Bruce's friend who was virtually inseparable from me at swim meets over the past 10 years.  It has been one heck of an experience for all of us who knew him and supported him with kindness.

May God bless all of you and look after Denny and his family as he gets ready for his next event.  I will let you know when he leaves the blocks.

Keep smiling and pass this on to others who knew Denny (and I regretfully do not have their e-mail addresses).
Bruce