Love Me Till ... Forever!

Being the primary caregiver for a dementia patient that is being kept at home took a lot of stamina, both physical and emotional.  But it also took a tremendous amount of patience.  And that was something that I was not blessed with.  You need to keep reminding yourself that the person, in the body that you recognize, is not the person that you knew.  Their brain cells have changed their personality.  So when they are being uncooperative, or aggressive  stow that anger, stow the lack of patience.... adapt and accommodate.  

There were two things which empowered me to be the best caregiver that I could be.  And I admit that I was not always the best.  But I always tried.  The most important empowerment was a caregiver support group.  Not just any support group.  This is a very special group.  It began as an all-male support group by the Alzheimer's Society.   By the end of the eight weeks allocated by the Society, this group had taken on a life of it's own.  It had a heartbeat.  It had intelligence.  It had  compassion.  It became a fabric, made up of many threads.  A fabric that provided shelter for those that needed one.  A fabric of strength for those that were lacking.  That group is now approaching three years of life.  A few souls were added over time and even fewer chose to leave.  There is a  wealth of knowledge, fostered by experiences, and enriched by the compassion.  Maybe this group is special because of the specific individuals within it.  But I don't think so.  Each member is a different distance down the path.  Each is willing to be compassionate when needed, yet willing to speak with raw honesty.  The moderation has  been superb.  Leading the  group along  at times, but fading into the background when the topic is self-feeding.  I succeeded because I was able to learn what I needed, even when I didn't know it.

The second thing that empowered me during my almost three years as a caregiver, was this poem.  I tried to read it daily.   I needed to be reminded that the body may be your loved one, but the behavior is not intentional.

 

Pamela Ruth (Woods) Rozett... RIP

 Many readers of this blog never knew Pam personally.  Maybe posting her obit here will give you a better idea of how lucky I was.  

 

Pamela Rozett

Pamela “Pam” (Woods) Rozett, 74, of Litchfield, NH passed away peacefully at home on June 15, 2024, after a courageous battle with Lewy Body Dementia. Born in Ayer, MA on May 27, 1950, to the late Lois (Naylor) and Delmar Woods, Jr. She grew up in Dunstable, MA, and graduated from Groton High School in 1969. Pam was working at Sanders Associates when she met the love of her life, Bruce Rozett. After less than a year, they were married. They went on to have three daughters and five grandsons and spent nearly 52 years together.

Residing in Londonderry for 25 years, she was an avid candlepin bowler. Pam managed a children’s shoe store, the Shoe Zoo, where she was renowned for remembering each child’s age and shoe size. Pam joined JC Penney when they opened the store in Salem and spent the next 18 years in various capacities. She ended her JCP career selling custom window coverings in the South Portland, ME store while they operated Shaving Hill Farm in Limington, raising Christmas trees and timber and riding their horses.

Retirement brought Pam and Bruce back to Litchfield, where they lived when they got married and brought them closer to their three daughters, Courtney (Jay) Sanchez of Manchester, Allyson Rozett of Goffstown, and Kendra (Jeffrey) McCormick of Hudson. She was adored by her five grandsons, who referred to her as Gmom.

Besides her husband, daughters and grandsons, Pam is survived by her five sisters, LoAnn Ross of Merrimack, Amy (Paul) Dixon of Colorado, Paula Woods of Wilton, Robin (Guy) Whitworth of Tyngsboro, and Kathy (Joe) DePontbriand of Litchfield and many nieces and nephews.

ARRANGEMENTS: A Celebration of Pam’s Life will be held at a future date. Assisting the family with arrangements is the Cremation Society of NH, Manchester.

IN LIEU OF FLOWERS: Please consider a donation in Pam's name to the Animal Rescue League of New Hampshire; 545 Route 101, Bedford, NH 03110

Blog Post 118. Is it the last?

I am not even sure where to begin with this blog post.  In case you have not already heard the news, our journey is over.  Pam, my wife of 52 years (minus two days) has lost her battle with Lewy Body Dementia.  Our suffering has ended and she is at peace.  Many will follow that thought with questions like "How are YOU doing?"  The answer is pretty simple and that is I am doing fine.  At times I have expressed some pretty raw emotions through this blog.  Right now I just don't have any of those.  Our daughters and grandsons have been tremendously supportive.  I have received many hugs in the past 24 hours and every one of them has made me feel better.  

Am I going to cry and grieve over this loss?  Of course I am.  I will probably break out in tears at the strangest of times, as thoughts rush to my consciousness, of some event or comment Pam had made.  But overall, much of  the grieving has been done over last three years.   So I am not feeling a flood of emotions right now.  The most important thing for me right now is to make sure that our daughters and grandsons have their needs met.  Each of us grieves differently.  Some grieve outwardly, while others need to internalize the loss.  We have a Celebration of Life to organize, not to mention the resolution of the remains.  And then there is the walk-in closet loaded with clothing and footwear to deal with.  So there are important activities that require focus to keep the mind busy.

As I sit here in the wee hours of the morning after, I do have a couple of thoughts to express.   The first is that I am so grateful that Pam's suffering is over.  She might not have even understood what that suffering was, but I did.  It might not have been suffering to her because of her damaged brain, but I knew.  And it is over!  The other thing that I am grateful for is what I did not get.  Dementia patients often exhibit a range of behaviors that make being the caregiver very difficult.  Some patients get aggressive and confrontational.  While others suffer delusions about those around them.  Many dementia patients lose their ability to recognize those around them.  Pam did not exhibit any of these to a large degree.  The absence of many of those issues made the ability to keep her home possible.  I was blessed that these behaviors did not rear their ugly head.

So what is next?  Pam had expressed the desire to be cremated and we will honor that desire.  This will be followed by a burial at sea.  This is what was done with her mother (an event that I affectionately refer to as "throw your mother-in-law overboard" weekend).  The urn is made of salt and begins dissolving a short time after going into the water.  This will be immediate family, including any of Pam's five sisters that wish to join us.   We have not yet set a date.  We have the mandatory state hold of 48 hours, to complete the payment, and the paperwork to get through.  More immediate is the Celebration of Life.  This will be an "Open House"- style gathering in mid-July.  Meaning that there won't be a ceremony of any kind, just a window of opportunity for people to come and share their stories and remembrances of Pam with friends and family.  There will be food and beverages to encourage people to stay and share their thoughts.  There will be a slide show of photos of Pam's life set to some of her favorite music.  We will also have a number of enlarged pictures around the room as places to gather and reminisce.  People can come and go as they need to, but still pay homage to Pam's life and accomplishments and meet her sisters, daughters and grandsons.

The biggest question on my mind..... is this the last blog entry?  There have been almost 120 blog entries published since late 2019.  We started as a travel blog to document our (planned) two-year adventure of seeing much of this great country.  It morphed to a dementia blog after Pam's diagnosis.  Now what?  I have been encouraged by almost everyone to keep writing.  Pick your passion, they say.  I just don't know.

And I ask that you indulge me just one last time..... I am going to include some of my very favorite photos of Pam.  The last one, not on my favorites list, just screams Pam all the way.  Enjoy.

 

Your pain is over, but ours has just begun.  

We will shed many tears before we are together again.  

In the mean time, I promise not to peek.

Yet Another Back Story.... In The Snow...

 I received a lot of kind comments about the back stories I told about Pam and I.   While I am struggling through the final decline, I thought I would write about another one.  Actually, struggling is an understatement.  Being her primary caregiver for almost three years has been both emotionally and physically demanding.  But we are now at the most difficult part.  Pam is resting comfortably.  But with no food or drink, she has become unresponsive to being moved or changed.  There is little to do but remember the best of times and to grieve.  So here is another back story.

Pam and I met while working at Sanders Data Systems in Nashua, NH.  Several years later, Data Systems was sold to Harris Corporation and I began working with engineers in Dallas, Texas.  It became obvious to me that we would eventually be asked to move down there.  Pam and I discussed the possibilities and both looked forward to an opportunity to live elsewhere.  Sure enough, they announced that Engineering and Marketing would be combined in Dallas.  

When they did not encounter any enthusiasm for that idea, the grownups decided to fly everyone, with spouses, to Dallas to get the big show & tell and look at homes.  They divided the group in half and booked all of the flights... for what we affectionately called "The Cattle Drive".  Upon arrival, we were each assigned a relocation specialist that tried to understand our needs and wants and then show us all over the sprawling metropolis.  When the Cattle Drive did not produce any results, the grownups went about trying to get people to move by bribing us with an ever increasing list of financial incentives.  Even though Pam and I had already decided that we wanted to move, I received all the same financial incentives they were offering others.  By the time we were ready to leave, they were buying our house from us, moving all of our belongings, including extra vehicles, along with three months extra pay, two weeks additional vacation, round trip air fare within the first year, a per-Diem payment until our home was ready in Dallas, and rental payments if we needed to rent while waiting.

Pam and I decided to have a new house built out in the country, rather than live in Dallas proper.  We bought a yet to be built home in the town of The Colony, about 25 miles north of Dallas.  The Colony was a large land area purchased by the second largest home builder in the country in 1969.  They began developing a community.  When we took possession of our house, The Colony had a population of about 5,000.  Today The Colony is over 40,000.

 In January 1978, a moving van showed up to begin the process.  They first drove our 1971 Chevelle Malibu onto the moving van.  They assembled a floor over the top of the car and then loaded all of our belongings onto the moving van.  We had decided to drive to Dallas.  My vehicle was a Ford F100 Supercab with an 8' bed.  The truck was twenty feet long with big stainless western mirrors with a CB antenna on each.  It had a fold-down seat behind the front seats.  We bought a piece of four inch foam padding to fit the entire area and put a bed sheet on it.   The idea was that Pam and Courtney, our three year old, could sleep in the back while I was driving.  We said our good byes to family and hit the road.  We stopped in Yonkers, NY to visit my grandparents and made it to Scranton, PA that night.

The real adventure started the next morning.  It started snowing overnight.  As it turned out, the snow did not stop until we reached Little Rock, Arkansas.  When we left the motel, there was about two inches of snow on the ground.  The ride down turned out to be a lot of fun.  Courtney and Pam took sporadic naps in the back, while I spent much of the trip chatting with truck drivers on the CB radio.  My CB handle was Blue Beard.  In case you didn't figure that out, our truck was dark blue and I have had a beard since the fall of 1966.  The snow just kept falling as we drove south on Interstate 81.   There were exits that had so much snow, that you could not get off unless a tractor-trailer had used the ramp and left a path.  

Tennessee was an adventure all by itself.  We stayed overnight in Knoxville.  It took us the entire day to drive Interstate 40 over to Memphis.  That is normally a 6 hour drive.  But not so in the snow.  We had a special surprise  during that portion of the trip.  A couple of truckers called out on the CB about a rare sight.  It was about dusk and still snowing.  When I arrived on the scene, there was a wolf standing on the side of the road.  The snow finally tapered off to nothing as we approached Little Rock.  At that point we decided to continue the trek and make Dallas tonight.  I was exhausted by the time we got to Dallas.  

The next day, we checked into the house that we were renting while ours was being built.  Two days later, the moving van arrived with our goods and Pam's car.  And that was just in time, because the following day I had to fly back to New York to meet with the customer for the project that I was leading.  This left Pam and a 3 year old stuck in the house because she was in a new place with no idea where anything was.  That customer... was Avis Rent a Car.  I was the Engineering Project Lead for a new Wizard of Avis terminal for their rental sites. 

 

No Catchy Title Can Help Me Now...

              

In this edition of the Change the Journey Blog I have decided to write about Pam.  I thought that writing a few stories about her would give you a little more insight into the kind of person she was before the dementia.  

One of the very first things that I learned about Pam was that she valued her independence.   She felt that being married did not mean that you were attached at the hip.  She felt that women gave up part of their independence by pooling  financial resources in the family account, often controlled by the husband.  I could tell that this issue was very important to her.  So we did it differently.  Her paycheck went into her bank account and mine went into my account.  We agreed on how the family bills were to be paid, but our accounts were separate.  Credit cards were handled the same way, I had mine, she had hers and we each paid on them ourselves.    Large purchases were always joint decisions.  But she never lost her ability to spend her money and maintain her independence.  

Shortly after we moved to Londonderry in 1979, Pam went to work for an newly opened children's shoe store called The Shoe Zoo.  It wasn't long before the owner made Pam the manager.  Pam easily built a rapport with the kids and made the entire process much easier for the parents.  She was well known in the community for her ability to remember the child's name and shoe size the next time they came in.  When JC Penney decided to open a store in the new mall in Salem, Pam was hired to manage the shoe department.   Over her eighteen year career with them she held several positions including Training Supervisor and Customer Service Supervisor.  When we moved to Maine, she transferred to the South Portland store and sold custom window coverings for many years.

Friends was another area where she maintained some independence.  She had her friends, I had my friends, and we had our friends.  Obviously, over time  there was only one group, the later.  Many of her friends came from bowling.  Neither of us were very athletic growing up.   But she was always interested in bowling.  She liked candle-pin bowling, but I did not.  Pam joined several women's bowling leagues and had many friends among the other bowlers.   I preferred ten-pin bowling, so we also joined a Friday night couples league.  Our team was called Lefties Plus One.  As you might guess, Pam was the only right-hander on our team.  For a decade, we also played on a couples softball team   So while she maintained her independence, we did a lot of things together,

Automobiles were another place that we were were different.  As I used to put it... "I had the family car and Pam had her play toy".   For much of my career, I commuted down Interstate 93 into Massachusetts.  For safety and comfort, I chose to drive a Crown Victoria or a Grand Marquis.  But Pam always wanted a convertible.  For twenty years, she drove convertibles.  It started with a old Le Baron convertible for sale on the side of the road.   We had to install new floorboards just to get it to get through inspection.  But she had her convertible!  Shortly before Pam's 50th birthday she spotted a dark blue Chrysler Sebring convertible that was for sale at our mechanics used car lot.  A few weeks later she was very disappointed when we returned to the lot and the car was gone.  Little did she know, I had already purchased it and it was hiding in the back lot until her birthday.   It was many years later that I bought my Dodge Challenger and together, Pam and I proudly displayed it at many cars shows.

Another interesting story is how we both came to love Bermuda.  At some point, I had promised Pam that I would take her on a cruise to somewhere exotic.  As a typical guy, I never seemed to get around to it.  When several of the women on one of her bowling leagues mentioned that they were booking a cruise to Bermuda with their spouses,  Pam went ahead and booked it.  That was one advantage of her financial independence.  For our twentieth anniversary, we took the Norwegian Majesty to St. Georges, Bermuda.  The cruise and our visit to Bermuda were a great success.  Before the ship docks back in Boston, they hard sell you on booking for the following season.   Pam asked if we could.  My response was "the girls will love this".  Needless to say, we returned the next two years, with our daughters, and made the love of Bermuda a family affair.  Pam and I have traveled to Bermuda a total of nine times.  Our youngest daughter loved it so much that her wedding was held there.

Another area of common joy for us was horseback riding.  Pam had done a little riding in her youth.  I had never been on a horse.   In the early 1980's, I took Pam on a business trip out to Phoenix, Arizona.  we had several days after the business activities had ended and we decided to go horseback riding in the Arizona desert.  We went to McDonald's Ranch and had a guided ride out among the saguaro cactus and mule deer.   We returned to New Hampshire and started booking rides at Lucky Seven Stables.  Eventually, we bought two horses and boarded them at Lucky Seven.  About a year later, we bought Shaving Hill Farm in Maine.  For the first year, we just spent holidays and vacations there.  Eventually,I built stalls in the barn and moved the horses up there.  It provided great riding opportunities for us.  Eventually, the horses became ill and they are buried there.

So while Pam valued her independence, we had much in common.  Given that we only knew each other about eight months before were got married, we have done well.  Our three daughters and five grandsons make us very proud.  While the dementia may be taking her from us very slowly, it can never diminish what we have accomplished together.