OK, Now What Am I Going to Do?...

What am I going to do now?  That is a serious question.  My partner of over fifty years is suddenly gone.  What am I going to do now?  I was her primary caregiver for the past three years.  She was my entire focus 24x7 for three years.  Now what am I going to do?  I have no idea.  The last few years we have done almost everything together.  We both enjoyed taking our Challenger to car shows.  We did cruises with our friends at the East Coast Challenger Club.  But our beloved Red Hemi is gone.  Gone on to new owners so that we could travel the country for two years in our motor home.  Our RV was not luxury, but it was our home.  She loved going to PEI and Anne of Green Gables.  She loved visiting our friends, the Kelso's, in Lancaster County, Pennsylvania.  We had a great winter as snow birds in Silver Springs.  But even the motor home is gone now (more about that later).  What am I going to do now?

 Some days I feel like I am a nut rattling around in an empty box.  She brought meaning to almost everything I did   Yea, I have projects to do around the condo.  But they are things to do with little meaning in my life.  There is no need to run for the men in white coats and lock me up.  I may want their help at some point, but I can call and make my own appointment.  No, I am not going to harm myself.  I just don't have that kind of personality.  But what am I going to do now? 

There are triggers all over this condo.  Pictures of Pam are all around.  Things that Pam cherished and collected, like Longaberger baskets are everywhere.  Even things that she made like stitch-work she did early in our marriage.  These triggers often cause tears to fall or talking to someone that is not here any more.  Some say to remove the triggers.  I don't want to remove those things.  Just  like the cookie jar in the dining room makes me think of my grandmother whenever I see it, I want to think of her.  I want to remember some of our times together.  I want the triggers here.

There are more things that I can do with our daughters and grandsons.   I know that they are concerned.  But they have their own lives to live.  And I have friends and neighbors that are concerned.  They want to help me get through this.  But it will take time.  I don't want to forget.  I want to remember.

So what am I going to do now?  I do not know.  For now I have a To Do List of things to do.  But they are just that... things to do... alone.  I know that things will get better over time.  My broken heart will heal over time.  As long as I have these thoughts, I will keep writing about them.  I still don't know what I am going to do now.  I also need to pay attention to my own health.  It played second fiddle to Pam's issues.  My primary care doc is now on my case.

I mentioned earlier that the motor home is gone.  Well not really.  I still have it.  It has been in the shop because I was getting codes for misfires on two cylinders.  They finally got around to doing some diagnosis and it looks like the engine needs to be replaced.  That is probably not a good investment for a twenty-two year old motor home.  For now, I have it listed on Facebook Marketplace to see what I could recover without repairing it.  I also have a list of accessories, like tow-bar, RV GPS, etc that I could also sell.  It is possible that  I could sell it and buy a smaller one so that I can still do my bucket list.  (see the March 13, 2021 blog entry for that by clicking on the Blog Archive box at the bottom left)

Please don't be worried about me.  I am not.  I will eventually run out of tears.  We had over fifty years together.  That is better than most.  I was sad and tearful when my grandmother passed (actually all four grandparents).  But now I smile when I see the cookie Jar.  At some time in the future, I will see something of Pam's or her picture and it will make me smile.  Right now... not so much.

We Celebrated Her Life. The Room Was Full!

 The Celebration of Life for Pam is now behind us.  A lot of work went into it.  The girls were amazing at making sure that it all came off well.  Allyson did an outstanding job with desserts and setting up the food area.  Courtney rescued us when BJ's failed to produce the four trays of croissant sandwiches ordered weeks ahead.  Kendra, and friend Monica, got all the photos sorted out and mounted.  And I was so grateful to have our nieces Tracee and Michele there to help.  And especially because they all kept a watchful eye on me to make sure that I ate, drank, and didn't overdo it.

 The attendance exceeded my expectations.  We had many friends and relatives attend to honor Pam.  But we had others that we have not seen in twenty years.  Pam was an avid candle pin bowler.   Some friends from bowling and from the couples softball league were there.  She worked for JC Penney for eighteen years.  We had people that she had hired at JCP.  It is particularly noteworthy that the first five people in the door were from my caregivers support group.   They were there to honor Pam and to support me.  They understand better than anyone, how difficult this is.  I thank my brothers for being here.

I was not looking forward to the day.  There are so many triggers that bring on the tears.  Seeing old friends would bring back other memories.  I was also worried about the girls.  Would this be the time when the reality of losing their mother would really hit?   But they have shown strength.  They have really focused on the details of this celebration of life.  Many of the pictures depict Pam's wonderful smile.  That smile will only be a memory.  Her hug will only be a memory.

Next it is on to the burial.  We chose an urn made for burial at sea.  When I went to buy it, it was no longer available.  But I found one out in Colorado and it arrived Friday.  Now I need to call the boat captain and schedule a date.  This will only be for family and her sisters.  We will let each person say their goodbyes and toss a flower.  Then the urn should start to dissolve and sink.  Then the quiet ride back to harbor.

Right now I am staring at a picture of Pam and Laura.  They are both smiling.  Laura did that to Pam.  Whenever Laura arrived , Pam lit up with a smile.  Laura had such an impact on Pam's quality of life for the past year.  I will forever be indebted.   Laura helped Pam get joy from the simplest things.   Hunting for Easter eggs filled with candy.   Making  a snowman at the dining room table in a pan of snow from outside.  Putting on Pam's makeup and combing her hair.  While I was grieving over what the dementia was doing to Pam's quality of life, Laura was evoking joy and happiness from Pam.  Just how are we measuring her quality of life?   Even during the final decline, Laura was there for Pam.  Yea, she got paid to do this.  But it takes an enormous heart to bring joy to declining patients.    She was able to stop by the celebration for a short time.  She got hugs and accolades from me, from the three girls, and from Pam's sisters.  If she didn't before, she clearly knows how much all of us are appreciative of her enormous contribution.

I should also give praise to Home, Health & Hospice of Merrimack.   The nurses, the social worker, the home health aids, and the volunteers were all very professional and very caring.  They did all they could to see that Pam was well taken care of.  That she was comfortable.  And that she was not in any pain.  Thank you.

What is next?  I don't know.  I have a list of projects around the condo.  I am working at turning this blog into a book.  A book that I can leave behind  for my family.  And maybe a book that other dementia caregivers could get some value from on how to deal with the strong emotions that come from being a caregiver.  For now, I am going to continue this blog.  I still need to recover from the loss of part of me.  Right now I feel like I am rattling around in an empty box.  

Lastly, I wanted to share the slide show that I put together to celebrate Pam's life.  We had it playing during the celebration.  But for those that could not make it, I offer it as a way to remember Pam.  If you knew her, this will definitely ring some bells.  Enjoy...

https://youtu.be/ysDQGb6PS4E 

 

 

The Sun Continues to Rise and Fall...

I got a hug yesterday.  I needed that.  The hug was not from Pam.  She's gone.  I won't be getting any hugs from her any more.  This hug was from one of my brothers in the support group.  We had lunch.  I got to talk about Pam.  I was emotional.  When it was over, a handshake spontaneously turned into a hug.   I needed that.  He understands.

Only once before have I struggled with writing this blog.  The words just don't seem to come out right.  I have started this blog entry several times.  Each time, I come back a day or two later and just erase it.  I am dripping with emotion, why can' t I write about it?  Maybe it is because I am confused with all of the emotion.   I am still in shock that this has even happened.  Not once, in all my thinking about the future, did I ever think that she would go first.  Never.  Sadness is predominate.  Sad that we will not be experiencing all the RV travel plans we had looked forward to.  The empty feeling when your partner of over fifty years is no longer at your side.  I also feel a little lost after being her primary caregiver for three years.  She was my focus twenty-four hours a day, every day.  What do I do now?

You can see that I am still struggling with Pam's death.  In one sense, I am extremely grateful that her journey with dementia is over.  I have grieved over the last several years as I saw the toll it was taking.  She did not deserve that.  I am so happy that she is in a better place and at peace.  At the same time, I struggle with the loss of my partner.  It is like a piece of me is missing the the rest of me is struggling with how to survive.  There is no doubt that things will get better and a "normal" life will eventually return.  But for now, I have difficulties talking about her to others.  I have difficulty seeing pictures of her.

I can sense that our three daughters are concerned.  Concerned for my physical health, which has suffered some over the past three years.  But also my mental/emotional health.  Despite dealing with their own personal grief at the loss of their mother, they have each stepped up to help.  They have stepped in to take over pieces of the Celebration of Life.  Even the grandsons have been effected.  It is important for the family to stay together.  There is strength in numbers. 

Working on the details of the Celebration of Life and the burial at sea was meant to keep me busy so that I wouldn't think about the loss.  Well that didn't work.  I have spent hours putting together a slide show of photos accompanied by her favorite music artists.  Now I am spending hours watching it.  Tearing up.  

So what is next for me?  In the short-term it is to get through the Celebration of Life and the burial at sea.  I have a couple of woodworking projects that I am trying to get done.   I need to help the girls as they go through all of Pam's clothing, shoes, etc.  Some of the more expensive clothing items will get sold online.  The condo Activities Committee does a yard sale in the fall.  We hope most of the items will find  new home.  Whatever is left will be donated.

There are two other things that I am struggling with as well.  One is this blog.  Just what will happen with it?  Do I end it here or do I continue?  If it continues, what will the theme become?  It started as a travel blog and became a dementia blog.  Now what?   I do not have an answer.  In the short-term, I  could write about my struggles with this loss.  I am just not sure that there is enough meat on that bone.  While the emotions might be intense right now, I would expect that they lessen quickly,  And to be honest, I do not currently feel like I am struggling.  Do I miss her?  Absolutely, a lot.  But the world continues to turn, the sun continues to rise and fall, and I continue to function.

The other item to struggle with is the Sista's Lunch.   I started it as a way for Pam to have more time with her sisters.   In that regard, it was a great success.  We even got my sister involved.   Can I continue to put in the effort now that Pam is no longer here to benefit.  Do they want it to continue?   If it were to continue, would it become another vehicle to grieve Pam's loss through?  I have no answer.

I am grateful that your suffering is over.  I continue to suffer.  Sad, empty, tearful.

 

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.

Did I Miss Out On Those Moments of Joy or Just Do What Was Expected of Me?....

It has been about a month since my last blog entry.  Plenty has happened during that span, including Mother's Day, a Sista's Lunch, and most recently, Pam's Birthday.  The problem was that I could not muster up the energy or the desire to write.   Pam continues her slide into the endzone in her battle with Lewy Body Dementia.  We all know what awaits at the end of this battle.  We can not change it,  We can only make it drag on.

As we approach the end of this journey, I reflect back.  It was less than three years ago that Pam was diagnosed.  This is not even thinkable.  The average life expectancy of a Lewy Body patient is five to eight years.  Her decline has been extraordinary.  Courtney and I have looked at photos of Pam over the past three years and the decline in her physical appearance has been dramatic.  Just as stark has been the weight loss in just the last few weeks.  

I had no expectations when this journey started.  I knew that she wanted to stay home and not be sent to a nursing home.  I could not imagine the work, the energy, or the stamina it would take to fulfill her wish.  I only knew that it was my job,  my responsibility,  my duty to fulfill that wish.  I see the joy of others as they move their loved one to a facility.  They elate in the daily visits and the moments of being together.  Am I missing that joy because I kept her home?  I don't have any feelings one way or the other.  I did what I needed to do.   I did what she needed me to do.  No regrets.

But, it is so hard to see that blank look on her sagging face.  Every day.  To look at her struggle to know who those people are.  People that have always been part of her life.  Her sisters.  She does not know them.  Our daughters.  She does not know them.  The look on her face.  The blank look in those blue eyes.  You can see a mile into those eyes.  There is nothing there.  Every day she struggles to get up out of the chair.  Bouncing up and down building momentum that is never enough.  The withering of fifty two years of marriage.  I consume facial tissues.  I am consuming my own emotional energy.  What will be left of me for those that love me?  Time will tell.

Many have told me that I have done a wonderful job.  They say that I should be proud of what I have done.  That I am some sort of hero.  I don't feel that.  I just did what was expected.  My grandparents taught me about personal integrity.  They reinforced the importance of a strong work ethic.  My grandfathers taught me to hold the door for women.  Although I did not understand it at the time, they were wonderful role models.  They inculcated the so called "Rozett Attitude".  That I am proud  of.   What I did for Pam came from those traits.  I only did what I promised to do over fifty years ago.  Nothing more, nothing less.  No medals or campaign ribbons.  Just teary eyes and wet tissues as I stare into those blue  eyes.

We Appreciate Your Continued Love and Support...

 For those that have been following our dementia journey closely, I wanted to report a significant change in Pam's status.  There has been a marked decline in her condition in the last 48 hours.  While she is still eating, she is eating much less and drinking much less.  She is declining to eat foods that were always her favorites.  And she spends the bulk of each day sleeping.  When trying to converse with her, her replies have little to do with the subject that you are asking about.  I suspect that the hallucinations have returned.

So as of today, April 24, she has been placed on "final days" protocol by the hospice team.   While her final passage may still be weeks away or longer, this protocol results in a significant increase in care visits from both skilled nursing, social workers, and chaplains (if desired).  They have significantly reduced her medications to only those dealing with comfort.  This change is difficult to process, emotionally.  As much as we have all known that this disease has no cure, and that we try to prepare ourselves for this reality.  We have learned that you can never really be prepared.

The family has received many offers of assistance and we appreciated it very much.   Please bear with us as we focus on helping the grandsons navigate what is happening to Gmom.

Now Who Needs The Comforting...

My most recent blog post precipitated a number of comments from people that mean a lot to me.  Thank you for caring and Thank You even more for speaking up.  Please do not be alarmed by my post.   Grief is a normal human response to an important loss.  I am grieving the loss of my wife.  She is gone.  There is still someone named Pam that is living here, but she is not my wife.  She is not the person that I fell in love with and married many years ago.  She is not the person that joined me in raising our daughters.   I am just mourning my loss.  Remember, I am a pragmatist.  Feelings like hopelessness are not on the agenda.  I do feel blessed because Pam knows who I am (most of the time) and responds in-kind to hugs, kisses, and I love you's.   Yes, it can be very challenging when she does not want her clothes changed or to take her medications.  I will continue to deal with these situations as best I can.   But I do not feel especially stressed with the physical aspects of care giving.

Regarding my physical health, rest assured that I do not take it lightly.  In the past six months, I have seen my primary care doc, along with my cardiologist and pulmonologist.   I have further testing scheduled for early June.  It is not being ignored.   There is no doubt that this journey is taking a toll.  But we will get through it.

Loss Is An Extreme Stressor And Can Take A Major Toll On You...

 This past week we hosted the monthly Sista's Lunch and I thought it was the one that I have been dreading for months.  It was not because we had guest chef, Allyson.  No, she put together some wonderful stuffed shrooms, a very tasty Apricot Chicken, and a beautiful fresh fruit tart.  The one that I have been dreading is the one where Pam is bedridden and can no longer show up.  I know it will happen.  And that is exactly how the day started out.

Pam went to bed around 10 pm and the night was uneventful.  The hospice nurse came for her weekly visit late in the morning.  When she arrived, Pam was still sound sleep.   The nurse tried to get Pam to recognize her but she was unresponsive.  The nurse took the vital signs and we discussed changes in symptoms.  Shortly after the nurse left, the Sista's started arriving.  Each paid Pam a visit.  Each tried to arouse her for the luncheon.  Each came back out of the room with a tear or two.   It is difficult for them to watch their sister deteriorate like this.  I am the oldest of five siblings.  I have lost three of mine.  But they have not lost any.... yet.  Eventually, she rose and joined us.  Staring around the room but not speaking much at all.

As each day passes, I struggle with the grief.  Watching her peering the outdoors with a totally blank stare on her face.  The stare is one of confusion.  She no longer understands the world around her.  She once was a master of Trivial Pursuit.  She once excelled at charming her retail customers, in sharing her vast knowledge of custom window coverings.  She was such an impeccable dresser and now can't wear matching shoes.  Some of her is still there.  When gathering clothes for her to wear, she still evaluates colors and patterns.  She can't communicate her thoughts, only patting the shirt that she thinks goes with those pants.  How can this world turn loving and caring people into vegetables?  How can that happen in front of the people that have adored her.  I guess it is good that I am agnostic.  Watching this, feeling this, could turn one.

While this is going on I am crashing.  My weigh is ascending and my health is declining.  The winter season makes it worse.  I want to be traveling.  My bucket list is extensive.  But I can't.  I want to be out making things in my shop in the garage.  I have window boxes to build and plant.  I can't.  I am banging on the keyboard instead of banging on the nails.  We loved spending time with our grandsons.  We can no longer do that together.  The two oldest are most affected by what they see.  They spent the most time with her.  They will experience the grief more than the other three.  So much grief.  One of my friends from the support group made a very profound statement about that this week.  He said that he has been grieving for the past couple of years..... there is just no grief left.  I long for the day when there is no grief left.

 

Any Time Family is Together, We Are Blessed...

Another difficult night.  This was the third in a row.  Pam went to bed about 9:30 in the evening.  She woke shortly after midnight and remained up much of the night watching TV.  Sometime she was falling asleep.  Repeated attempts to get her to go back to bed are met with angry resistance.  When she is reluctant to go to the bedroom I will try to get her to move to a motorized recliner gifted from our youngest.  Once she's seated in it, I can raise the foot support and lower the back to put her into a position where she can't fall out onto the floor.  

This morning was another interesting morning.  Technically it was morning, it was 2 am.  Pam got up and dressed herself and came out to watch TV.   I made myself some toast and sat down at my laptop.  She asked if I had any for her.  I volunteered to go make it but she insisted that she would.  A few minutes later I go to the kitchen to check on her.  Her loss of cognitive abilities is very evident.  Instead of toasting the bread and then applying the butter, she had it buttered and sprinkled with cinnamon sugar before going to the toaster.  I intervened and started again.  While I was doing that, her pants started falling off, revealing a second pair of jeans under the first.  Those are only two examples of her cognitive loss.  Dressing herself affords several.  More often than not, her shirts or pants are on inside out.   Almost always she has two different shoes on her feet, usually on the wrong feet.  And sometimes one of the shoes has a sock over it.  When I make cookies, she will remove four or five from the bin, take a bite, and then return them to the bin.  Sometimes she will come out with a watch on her wrist.  One on each wrist.  She likes to drink Crystal Light.   Often she will dump a load of sugar in the cup before adding the packet of the mix.  Last week she pulled the top off the salt grinder that we've had for several years and dumped the salt onto her food and then began eating it.    Little things that we don't even think about during our day become a major appearance or safety issue.  Which is why she can not be left alone anymore.  Sad.

Now that our family gathering for the Easter buffet is over, I will note that Pam did pretty well.  She was up early.  Her clothes were soaked and she was very willing to have me change them.  She was awake and alert the entire day, but she did not speak much at all.  I had spent all day Saturday cooking and with the help of daughter Allyson, we finished up the cooking and everyone sat together to eat.   Pam ate very little.  That was funny considering that she was always trying to raid the cookies and muffins that were made on Saturday.  And once the cinnamon rolls came out of the oven, they became the focus of her attention.  Most of time she sat in a chair and looked at everyone around the table.  At one point, I lost it and had to leave the room.  Kendra and Pam were sitting next to each other at the table and Pam didn't recognize who she was.  I was in tears. This is such torture watching this happen.  But in the end, the family was together.  There was love and laughter in the air and a ton of good food shared on the table.  We are blessed.  We all hope that you had a blessed Easter as well.

While it actually might be a year or two away, we have begun the end of life planning.  We have decided to do a burial at sea, like her mother.  We have chosen an urn made for that purpose and selected a maritime operator.   The immediate family will be joined by her sisters and my sister.  Her family used to rent a cottage near York Beach, Maine for vacations, so we will head offshore of York.  Before the burial we will have a celebration of her life at our condo clubhouse.  I have already begun assembling pictures of her from our collections to run as a slideshow.  Planning these things feels so creepy.

Easter Buffet With Food To Feed An Army...

As the ravages of this disease march on, it just keeps getting harder being the caregiver.  It is so hard to watch your loved one suffering.  Although the reality is that most of the time she does not even understand her suffering.  When Pam wakes in the morning she has no clue where she is or who I am and often won't even open her eyes.  It takes about an hour for her brain to 'clear'.  When she is unsure of who I am, she is very reluctant to accept help changing her clothes.  If I question her about who I am or can I help her change, I often just get that giggle.

After the seizure on November 1st, they removed her prescription for the anti-depressant that she was on for many years.  Lately I have seen some signs of depression, so they prescribed a newer med.  Since then her zombie-like state has gotten much worse.  I don't know if it is the acclimation period for the new med or not, but it has been noticeable by myself and our caregiver.  But lets be honest, Pam was well aware of her diagnosis and the prognosis.  That would be depressing for almost anyone.   The doctor has taken her off the new med as of today.

I still think that putting Pam into hospice was premature.  My assessment is that she is in Stage Six of the seven stage model for Lewy Body Dementia.  She is having more and more difficulty in putting her thoughts into a sentence. So she is talking much less often.  She can still eat on her own but it has become much slower.  She needs assistance in dressing, bathing, walking, etc.  Lately she is sleeping for much of the day or in a zombie-like state. 

I must say that I have nothing but praise for the folks from Home Health &  Hospice.  Her assigned RN is out here weekly and the social worker is out monthly.  With vacation time and scheduling issues, we have had several RN's visit.  Each one is completely in touch with Pam's situation.  We have had a need for the on-call nurse several times and we have been very pleased.  We have also had several volunteers out here to help.  I have a ton of respect for all of them.   Anyone that can work in this environment every day and still show empathy for both the patient and the caregiver has a reserved seat in Heaven.  And even more-so for the volunteers.

Almost daily, I am questioning the decision to keep Pam out of a long-term care facility.  But she is adamant that this is what she wants.  She would probably get more well-rounded care in a facility, but I know that she remains safe and comfortable here.  I wonder if this is at all related to her mother, who had Frontotemporal dementia and was in a care home for many years.  The reality is that I am trading off my long-term health for that decision.   The stress and emotional drain is not doing good things to my blood pressure.  My cardiologist has said that my heart is in great shape.  I wish that my breathing was just as good.  We'll see what the Pulmonologist says in a couple of weeks.

I assume that my need to be cooking or baking something all the time is a form of release for that pressure.  In the last week, I have made a chocolate cake, chocolate pecan coffee cake, pizza, oatmeal honey bread, and a loaf of banana nut bread.  No wonder I can't lose weight.  Easter is coming up in a week.  Our family always went out to a Easter Buffet when the girls were younger.  There are fewer of them and they have become very expensive.  So again this year, we are putting on a buffet here at home.  Food to feed an army of guests.  Ten days later is the next Sista's Lunch.  I wonder how many more of these Pam can participate in?   In any case, there will continue to be a lot cooking going on in our kitchen.

Grieving Over What Has Not Yet Happened....

Last Thursday was one of my toughest days ever.  It was just a very frustrating day, all day.  Intellectually I understand that this is not Pam's fault.  She is not doing anything intentionally.  Yet the obstruction and resistance can be very frustrating.   All I am trying to do is insure that she is comfortable, safe, and pain-free.  Yea, I know, that was my logical self talking.

It started as soon as she woke up.  Her bed clothes were very wet.  I asked her if I could change her clothes and her 'pantaloons', which is my way of saying Depends without actually saying it.  She answered in the affirmative.  So I lead her to the bathroom and asked her to sit on the toilet.  I grabbed the clean stuff from the bedroom and went back to start changing her.  As I start lifting her shirt to remove it, she is pulling it back down.  As I try to remove her arm from a sleeve, she grasps the end of the sleeve, preventing it from coming off her arm.  I told her that I understand that she doesn't like this, but she needs to get the wet clothes off.  When it came to the pants, her reaction was the same.  She wanted no part in it.  She has always be very puritanical (protective) when it came to her body.  And I respect her a lot for that.  But because of the effects of the dementia, we need to get past this.

I made her some breakfast and she sat there watching TV.  After eating some of it, she began falling asleep at the table.  I was concerned about her falling out of the chair, so I woke her and asked if she would move to the recliner?  Again, she was resistant and wanted to stay where she was.  This resistance continued all morning.  When the caregiver showed up at 1 pm, I was like... good, you're here.  She's all yours.  But I went into the kitchen and read the poem.  For more than a year, I have kept a copy of the Alzheimer's Poem hanging in the kitchen.  I try to read it every day.  It helps me refocus my logical brain to understand the realities of this disease and what it has done to Pam.  It is not the Pam I married.  and it is most importantly not her fault.  Again, the tears flow.  Grieving over what is happening and grieving over what has not yet happened.

Speaking of the caregiver... she is amazing.  Regardless of Pam's state when Laura arrives, Pam just brightens right up.  Her expression and her voice are positive and happy.  Laura is able to get her into the shower without (much) resistance.   Pam just loves how Laura takes care of her hair and adds some makeup.  The primping is good for her.  She deserves it.  Laura has talked Pam into going outside and walking.  Yesterday, Pam walked completely around the block.  Laura has such a great rapport with Pam. 

But the disease continues to take its toll on Pam.  Most days, she wakes up in a complete fog.  She doesn't really know where she is or who she is with.  It takes about an hour for her to regain her self-awareness to time and place.  I am concerned about her blood pressure and temperature regulation.  She always had excellent BP.  Lately it has been high.  Often her skin is very cold to the touch.  I keep turning the heat up because she is cold.  I am starting to see signs of depression in her.  But who would not be depressed knowing what is happening to you.  She is still feeding herself, although the process of eating dinner is taking longer now.  We are going through a lot of Depends and doing laundry daily.  Her movements are slower and she is using the walker more often. Getting dressed is sometimes an adventure.  She wants to do these things herself.   Yesterday, she was having trouble with her pants.  When I offered to help, I found that she had on two pair of pants.  Cognitively she can no longer process simple choices.  It is best to just decide for her.  Wednesday of this week was another Sista's luncheon.  When my sister arrived, Pam did not recognize her.  We have called the hospice nurse several times in the past two weeks.  

But again, I read the poem....

Do not ask me to remember,

Don’t try to make me understand,

Let me rest and know you’re with me,

Kiss my cheek and hold my hand.

I’m confused beyond your concept,

I am sad and sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me,

Do not scold or curse or cry.

I can’t help the way I’m acting,

Can’t be different though I try.

Just remember that I need you,

That the best of me is gone,

Please don’t fail to stand beside me,

Love me ’til my life is done.