Saturday, February 10, 2024

Time Has Not Made Things better...

My apologies, it has been over a month since I have written anything.  I tried a couple of times, but it just wasn't coming.  And I apologize that this one is so long. But let me catch you up.  On January 10th we had the monthly Sista's Lunch and it was the best day that Pam has had in months!  The day didn't start on a good foot, as Pam was up at about at 3:30 am and it appeared that we were going to have another bad day, where she sleeps on the couch all day.  

For those unfamiliar with  Sista's, Pam is the second oldest of six girls.   When we moved back to NH, she mentioned that she was looking forward to spending more time with her sisters.  For whatever reason, that didn't really happen.  They would get together for one another's birthday, but not much contact otherwise.  So I decided to host lunch once a month.  It got the sisters together more often, satisfied my love of cooking for others, especially family, and it gave Pam another opportunity to exercise those brain cells that were slowly being strangled by the Lewy Body Dementia (LBD).  They have been a rousing success.  After a while we invited my sister to join the festivities.   She fit right in and enjoys the encounter.

The day started early, which is not unusual for a LBD patient.  Many times their sleep patterns are erratic with a lot of daytime sleepiness and night time restlessness.  And throw in some hallucinations and delusions just for fun.  She woke about 3:30 am and went to the couch.  I turned the TV to Bones and she was in and out of sleep for the next few hours.  I woke her about 8:45 to get changed into street clothes because the hospice nurse was due in one-half hour.  They met and had a pleasant one-sided conversation, as Pam didn't say much.  When the visit was over, I went back to prepping food for lunch and Pam went back to snoozing in the recliner.  

Pam's sisters starting arriving around noon.  Pam perked right up.  She was chatting, laughing, and reminiscing with her sisters, and my sister for much of the afternoon.  She really loved the appetizer, loaded potato crowns (really McCain Baby Cakes).  When the main course came out, Pam was on her third helping of the appetizer.  I have not seen her eat this much in weeks.  There was one point in  the afternoon that I thought she might nod off, but her sisters got her reinvigorated.  One of our daughters even noted the improvement in Pam's posture.

The next social event was a week later when my niece came to visit from Atlanta.  Michele is only six years older than our oldest daughter.  When they were young, they spent a lot of time together.   We often refer to Michele as our fourth daughter.  

We were hoping that Pam would have another good day so that we could all go out to eat somewhere.  But we had a contingency in place if that didn't work out.   I got Pam up and dressed and we headed out for lunch.   Pam was doing very well interacting with the grandsons during the lunch, but you could see the mental fatigue set in as the afternoon wore on.   By the time we left the restaurant, Pam was pretty much wiped out.  We had a lot of trouble getting her coat on because she wasn't able to follow our directions.   But the lunch was worth the effort.

Despite the fact that Pam is on in-home hospice, we are trying to keep her as socially stimulated as possible.   The next social event was a Olive Garden birthday gathering for Pam's older sister.   Again, Pam's attendance was dependent on what kind of a day she was having.   I was able to get her up and dressed in time for the visit from the hospice nurse's weekly visit.  That went well and her vital signs continue to look good.  So after a short nap, we were off the Olive Garden.  One helpful aspect of this event was the presence of her Home Instead caregiver, Laura. 

We continue to have a care giver from a local agency here three days a week for four hours per day.  This gives me an opportunity to attend to other things like grocery shopping and doctor appointments or just to be on the computer for a while without having to worry about Pam.  We have a had a number of caregivers here, but the current one has done an outstanding job with Pam.  She is able to get Pam to take a shower, exercise, and do some sticker books.  Even more, exciting is that she is able to talk Pam into going outside for a walk.  You can see Pam's face light up when Laura comes to the door.   While the work she does with Pam and the creating of free time for me is all very important, the cost is significant and it is all out of pocket.  She even gets Pam to do funny things...

We are now about a month into in-home hospice.  For those that are unfamiliar with it, two doctors have signed off that they believe that Pam has six-months or less.  Not really a thought that I am interested in entertaining but it is the reality.  Personally, I think it is longer than that, but that is only gut feel.  Even her primary care doc is amazed at how quickly the symptoms have progressed.  As I have said numerous times, I can not change the destination, but I can certainly influence the journey.   Pam has no sense of time.  She can read a clock, but her brain just can't understand it, especially duration.  Her biological clock is screwed.  She is often up early morning and then sleeping all day.  A recent trip to a local restaurant was trying to say the least.  It took fifteen minutes to arrive at a meal choice.  Her brain can no longer process multiple choice questions.

Recently things have gotten worse.   Lewy Body dementia includes Parkinson's symptoms.  She has lost most of the range of motion and strength in her legs.  She needs assistance getting dressed.  She often tries to move around the condo with her eyes closed.  Her footsteps are four to six inches long.  Worse yet, her ability to communicate is diminishing.  Often, if you ask a question, she looks at me but does not answer.  For example, I woke up at about 4 am with her whimpering.  I spent fifteen minutes trying to ascertain what was bothering her.  Was she in pain?  Where did it hurt?  No answers.  I finally convinced her to change into dry PJs.  Maybe that was it because she soon feel asleep again.  It is just so hard for the caregiver.  My job is to keep her comfortable and safe.  But it is hard when they can not communicate.  It is like working with a crying infant.   Only the infant is 74 years old.

The decision to keep her at home was hers.  Many in the support group I am a member of have made the very hard decision to move their loved one to a care facility.  And almost to the person, they say that they waited too long to make that decision.  To them I say, I hear you.  I really do.  Maybe when she no longer knows where she is.  But this is what she wanted.  And just as I am living up to the promises I made almost 52 years ago, I am going to live up to this one too.   One significant effect of that decision is the emotional impact on me.  I am wiping away tears several times a day.  It is so hard to see how this disease has taken the person that I married.  Even our two oldest grandsons, the ones that spent the most time with Gmom, are emotionally affected by what they have seen.   

Our three daughters  have been wonderfully supportive.  And I have had several neighbors and friends offer to help.  I really appreciate the offers.  I may call upon you at some point, but I am handling it at this point.  I even got her out for a short walk today.  I continue to be thankful for every day that we have together.  I steal hugs every chance I get.  When I reflect on our time together, I feel good about how it turned out.  Our daughters are all productive citizens and two of our grandsons are finalists for Youth of the Year and Junior Youth of the Year  by the Boys & Girls Club of Manchester.  It is obvious that their parents have done a wonderful job raising the future citizens of this country.  We are immensely proud of our three daughters and their five sons.  However this ends, I feel like we will leave this place a better place for being here.

Wednesday, January 10, 2024

The Story of Our First Car....

I received a lot of positive feedback about my story of how Pam and I met, so I thought I would throw out another story.   This one is about our first car.  When Pam and I met, I was fresh out of college and neither of us owned a car.   I had decided to leave my 58 Pontiac Super Chief in Florida when I graduated because I wasn't sure it would make it back up the coast to New Hampshire.  So I found a buyer and flew home.  Boy do I regret that decision. 

When we first started dating, she lived in Nashua and I lived across the river at my parent's house in Hudson.  We had both arranged rides to and from work and occasionally mooching a ride somewhere.   I used to go to her apartment after work and we would eat and hang around.  But at the end of the night I would try to thumb my way back to my parent's house.  The trip was only  about six miles.  But people didn't like to pick up hitchhikers at ten or eleven at night.  So you relied on finding a young person driving your way.  But Pam worried about my safety and started to encourage me to stay overnight.  So several days a week I would sleep over.  A funny side story about that... when I did stay overnight, Pam slept in her pajamas under the covers and I slept in my street clothes on top of the covers.  Obviously, that did not go on for too long as our relationship progressed.  But that is a true story.  But it was clear to me that I needed to find a car.

Having grown up outside of New Haven, I was still plugged into the social scene down there.  One nice thing about living near New York City is that Broadway shows often rehearsed some performances at places like the Schubert Theater in New Haven.   So as our relationship started to get serious, I tried to get some tickets to shows in New Haven.  I was able to buy tickets to see Jesus Christ Superstar and Hair at the Schubert.  But how were we going to get there?  I had no car and she didn't even have a driver's license.  Asking around, I found that you could rent cars from the local Chevy dealer.   I went to MacMulkin Chevrolet in Nashua and rented a car.  I rented a 1971 Chevelle Malibu with a 350 cid V8.  It was a pretty car in dark red metallic paint and a white interior.   The first trip to Connecticut was uneventful and I went back and rented the same car for the second show.  After renting the car for both trips to Connecticut, I asked the rental agent  how many miles they put on them before selling them.  He responded that they would sell it an any time.  So for the cost of about $2,500, I bought the car.

Shortly before we were married, one of my fraternity brothers was due to get married and we were  invited.  He lived in very far western New York.   So on a Friday night, immediately after work, Pam and I jumped into the car and headed out towards Busti, New York.   Busti was a very small town at the intersection of five roads and very near the boarder with Pennsylvania.  The drive to Busti was almost nine hours.  Considering that we had worked all day, I became really tired and I asked Pam to drive.  We were on the NY Thruway and it was very late at night.  Pam and I swapped places in the front seat and I slept while she drove.  Something woke me up at one point, just as we were driving by a sign that said two miles to next service area.  I glanced at the dash and the fuel gauge read "E"!    Sure enough, about a mile later that 350 motor ran out of fuel and shut down.  Taking with it the power steering and power brakes.  Pam stood on the brake pedal and that Chevelle slid toward the guard rail on the rain slicked roadway.  When it came to a stop, you could not slip a piece of paper between the side of our new car and the guard rail.   After about fifteen minutes of standing in the rain with my thumb out, along came a State Trooper.  He was very professional and took me to the service station for fuel and then back to the car.  I told him that I was driving, knowing that she had no license.  

Steve's wedding was a real blast.  The crowd was made up of older friends and relatives and his young college friends.  After the reception dinner, all of the fraternity brothers and their partners decided that dancing was boring and we left the building.  We drove the short distance to his parents home and began a game of tag football on the lawn.  When we had enough of that, we returned to the reception.  The older folks were still dancing.  So we rounded up a bunch of chairs at one end of the dance floor and began playing a drinking game called Zoom Schwartz.  The elders were so amused that they stopped dancing and watched us play and drink.  We all had a great time at that wedding.  Most of us were not married, so we also got to shack-up in a motel.  😁

Another funny story about this Chevelle was related to our wedding and honeymoon.   While we were entertaining the guests at our reception, several people decorated our new car, orchestrated by my two brothers.  There was writing all over the car declaring our marriage along with a lot of streamers.  After the reception, we drove back to our townhouse for a nap before driving to Cape Cod.  After the nap, we stripped the streamers off the car and headed south.  Pam was still pretty tired so she laid down across the front seat with her head in my lap.   Somewhere on route 495 South, a truck pulled up next to me.   As I looked over, he was pointing to all the writing on the car about just married, but he could not see Pam.  So I pointed down at her head to show that she was asleep in my lap.  The truck driver got a huge grin on his face and gave me a big thumbs up sign and sped off.  He obviously had mistaken her nap for another activity.  We both got a big chuckle out of that later in the day.










Since this story is mostly about our 71 Chevelle, I will tell the final story about it.   A few years after we were married, the division of Sanders that we worked for was sold to Harris Corporation.  One year later, I was being transferred to Dallas, Texas.  By that time we also owned a Ford pickup truck.  Obviously, we could not drive two vehicles from New Hampshire to Dallas.  So our Chevelle was loaded onto the moving van with all of our belongings for the trip south.  We only lived in Texas for about eighteen months before we (I) decided to move back to New England.  By now, the New England winters had caught up with our wonderful car.  The rear quarters were starting to show rust, as well as around the bottom of the rear window.  Since it would cost more to move the car back to New England than it was worth, we decided to sell it.  Our beloved red metallic Chevelle was now owned by a native Texan who purchased it for his daughter.

 So that is the story of our first car.  We loved it and it served us well.  We hope that she is still on the roadway traveling around Texas.


Thursday, January 04, 2024

We are now in Hospice Care.... but am I next?

 The Christmas holiday has come and gone.  Basically, I would call it a success.  The family was all here.  It took several of us to get Pam dressed and presentable.  She opened some gifts.  I felt a little funny about that.  The thought of Christmas shopping never even crossed her mind.  Holiday shopping was always very important to her.  She did love the LL Bean coat I bought her.  After gifts, we sat at the table and had dinner.  She didn't say a word the entire time.  But she smiled and laughed at the grandson's antics.  She ate some dinner.  Then she retired to the recliner for a nap.  She was there and she participated.  That has to be a success.  We even took some family photos to remember it by.

Then came New Year's Day.  It is a major milestone in our dementia journey.  It was a good day for both of us, but not so much for my emotional side.  Today Pam was admitted into in-home hospice.  We will no longer worry about her blood sugar, or her blood pressure, or her mammogram.   We will now just focus on the symptoms of her Lewy Body Dementia and how we can best keep her safe and comfortable.  Her primary care provider was an advocate.  The doctor continues to be concerned with the burden on me.  Without me, Pam can not stay at home.  This will bring new, specialized resources to the team.  But we will not stop using the wonderful home aid, from Home Instead, that we bring in three afternoons a week.  She and Pam seem to have a good and respectful relationship together.  It would be nice if Medicare paid for that also.  But it is too important to Pam for it to stop.

The process went very smoothly.  Behind the scenes, the doctors decided that the entry criteria were met.  All of the information that they needed was in our medical providers database.  A nurse runs through the medical history and verifies the need.  I got a call to set up the in-home meeting.  The intake nurse runs though all of the benefits, what is covered or not and asked some questions.  I felt very comfortable going through the meeting with our three daughters present and asking questions.  I have tried to be very transparent and inclusive when  it came to our daughters.  I felt that they needed to know exactly what was going on at all times. Then comes decision time.  If you want to take this step, they are prepared.  The key team members are identified and the paperwork is ready for signature.  It was done!

 The next day, we met with the medical social worker, who reviewed benefits and worked at building a rapport with the family.  This care is as much for the family as it is for the patient.  They have as much support lined up for the spiritual and emotional side as they do for the medical.  The following day we met with the lead nurse on our case.  In the background, they have already checked to make sure that you are not an abuser of scheduled drugs.  They check both Massachusetts and New Hampshire PDMP.  Of course, they do not tell you that.  I wonder if George Orwell knew of DPDM?  But I digress.  The nurse reviews the benefits available from the medical perspective.  Pam slept through the visit with the social worker and most of the visit with the nurse.  She did wake up right near the end and greeted the nurse.  The nurse assesses the severity of the situation and schedules regular followup visits.

My first impression is that these folks know what they are doing and have the process worked out.  There was no pressure from them to do this.  If you feel it necessary, you can always pull out of the program.  There are a ton of benefits for the family, as well as the patient.  They must be connected to the VNA (Visiting Nurses Assoc.) because I see some major similarities between the two care plans.  Although we are going to keep Pam at home, this provider also has a hospice facility nearby.  But that is the facility that my father was in a decade ago.  Based on the experience with my father, Pam will never see the inside of that building.  But so far, the experience has been positive.

So, how am I feeling about putting Pam into hospice care?  To be honest, I am not feeling much.  The thought of giving up came to mind for an instant.  But what does giving up mean in the context of a progressive and fatal disease.  I am grateful for the full involvement of our three girls.  They have been advocating this for a while as a means of providing additional support for me.   I am probably the typical male that is reluctant to make use of the wide variety if resources that are available.  But I often think of the time our oldest had a major medical issue and was lying in recovery writhing in pain.  All I wanted to do was to go run ten miles... alone!  I am still brought to tears at times seeing what this disease is doing to Pam.  When the end does come, I am sure that I will be a basket case.  And I am starting to worry about my own cognitive situation.  I feel like I am having trouble with concentration, especially when reading a document.  I feel the need to get up and walk around.  Hopefully, I am just being a hypochondriac. 

Friday, December 22, 2023

The next time that she says No, the answer will be YES!...

A little before 6 am on Sunday morning, I am in the kitchen making NY Crumb cake for breakfast.  Suddenly, the noise of the spatula scraping the bowl was interrupted by a crash.  Sure enough, Pam is laying on the living room floor.  She had spent the entire evening sleeping on the couch.  Not laying down and sleeping.  No, sitting up and sleeping.  Despite repeated attempts to move her to the bed, her answer was always "No" or "leave me alone".  From now on, the answer will be "Yes".  But how do I get that done?  Physically forcing her violates my Use of Force Policy.  I don't care what Teepa Snow says.  She was not here.  And Pam's safety is MY responsibility.  Yes, you are moving to the bed!

Our preparations for the holiday are moving right along.  For the first year ever, I set a dollar limit on Christmas presents and stuck too it.   Amazon is not going to be happy with me.  I have spent considerable less than previous years.  Jeff Bazos will just have to forget that extra car.  I am very anxious about this Christmas.  Will Pam have a good day and participate or will she have a bad day and sleep through it?  I suspect that this will be the last that she recognizes family and I am hoping that it is a good day.

I did go a little overboard in one area.  Our family tradition has been turkey, etc and pies for dessert on Thanksgiving and then spiral ham, Au gratin potatoes, and cookies galore for dessert on Christmas.  We would each bring two or three varieties of cookies and fill a three-tiered tray to overflow.  So where did I go crazy?  Well, the ham of course.  Since they were on sale, I bought a 19+ pound spiral cut whole ham.    This baby is huge.  It is going to take 5 hours to cook it.  But there will be plenty of leftovers for sandwiches, western omelets, and quiche.  Having the entire family together for the holidays has always been so important to me.    And this year has special importance.  So lets hope she has a good day.

 On the medical front, I am still dealing with this infection in my left elbow.  We have no idea where it came from.  A week in the hospital on IV antibiotics every three hours knocked it down some.  I then did ten days of oral antibiotics.  The arm looks much better.  But only two days after the oral dose was complete, I could feel it flare up again.  It was swollen and red and you could actually feel the heat coming from the core area of the infection.  So we are back on another ten days of oral antibiotics.  I had a followup with our Primary Care doc about my elbow.  But we spent half the time talking about Pam, who slept through the entire 30 minute appointment.  The doctor admitted that she was surprised by how rapid the decline has been.

In the mean time, Pam has had an MRI of the brain and an EEG to see if they could pinpoint the cause of her seizure.  They found nothing extraordinary.   She has begun having trouble speaking.  Sometimes she will start a sentence and stop half-way through because the idea is gone.  At other times she speaks words which don't really relate to the context of the conversation.  At other times she just remains silent.  It is getting difficult to communicate with her.  Our daughters have been encouraging me to find a place for her where she can get the care that she needs.  They say that it's not that I can't give her that care.  It is just that providing that care, alone, is taking a significant toll on me.   I know that they are right.

Our bright spot is the home health aid from Home Instead.  We now have the same person all three days a week.  She and Pam seem to have a great relationship.  She doesn't let Pam sleep, but keeps her engaged in various activities.  Yesterday they made sugar cookies.   If the weather is at all decent outside, she takes Pam out for fresh air, pushing her in the transport chair.   The end of the session every day is marked with some upper body exercises left by the physical therapist.

I am really hoping that the holiday will be a good day for Pam.  She had her nails done in festive red.  She hasn't asked about doing any Christmas shopping, but I have everyone covered.  I would love the grandsons to have joyous time with Gmom so that will be what they remember.  We have our fingers crossed.

To all of my readers, the entire Rozett family wishes you a very Merry Christmas or Happy Hanukkah, as appropriate.  If you are a heathen, it is just another Monday.  Stop whining and go to work.  (only kidding).  Happy Holidays to everyone.



Thursday, December 14, 2023

Is there life after giving up?....

The last two weeks have been absolutely crazy.  Being the primary caregiver for a loved one with a significant medical problem may not always be physically demanding, but the stress and the emotional toll as they decline can be harmful to your own health.   I am so grateful for family and friends that have gone out of their way to support us.  And that was really put to the test in the past ten days.  But before I explain more, I want to talk about the Help Gmom Decorate for Christmas event that was planned for Saturday, December 2nd.  My intuition has been telling me that this might be the last Christmas that Pam will be able to understand and enjoy with family.  Christmas has always been Pam's favorite holiday and she has always done an amazing job decorating the house for the holiday.  The Lewy Body is making it harder and harder for her to motivate around, so I thought that this would be a fun activity that would allow Gmom and all five grandson to work together and get the decorating done.


Just as we had with Thanksgiving, the family was all here (except me... more later) but Pam was mostly absent.  The crock pot hot chocolate and snacks were enjoyed by all.  And they all pitched in and got the decorating done.  But Pam has more and more bad days lately.  Some of which she can just not stay awake.  And like Thanksgiving, she slept through most of this event.  We planned for two weeks, but you just can't predict what kind of day she will be having.   She did get to participate, just not as planned.  The real core of Pam's Christmas decorations is her Santa collection.  We are now somewhere in excess of twenty  Santa's.  Each year she gets a few new ones, and this year broke the height barrier with two three-foot tall Santa's.  These things are even named in the will.




I wish I could say that our family is going to enjoy this holiday season, but I am afraid not.  The Lewy Bodies just keep marching through her brain, leaving dead brain cells in their wake.  When Pam had the DATscan, they clearly saw a deficit on the left side.  The latest symptom is her speech.  The Broca area in the left hemisphere controls speech formation.  Her's is losing the battle with the Lewy Bodies.  Most of the time, she will say sounds, that are either gibberish or words with no meaning to the current context.  She does not even realize that we do not understand.  To her, all is OK.

A very common symptom of Lewy Body Dementia  is excessive daytime sleep.  It is not uncommon for Pam to sleep all day and then have a rough night of up and down.  Pam's biological clock is just plain screwed!  Another new trait is her eyes.  She often sits there in front of the TV with her eyes closed.  She will get up and shuffle to the bathroom, with her eyes closed.  

Several people, including her PCP have recently mentioned hospice.  Personally, I think it is too early for that.  But I will admit that initiating hospice care, whether at-home or in a facility will be a devastating point for me in this journey.  It will be the equivalent of throwing up the white flag.  Declaring defeat!  Giving up.  I don't want that day to come.   Intellectually, I know that this affliction is progressive and fatal.  But with every other cell in my body, I want to have as much time with her as I can.  Who am I going to make blueberry muffins  for at 1:30 am?

So I mentioned earlier that I was not in attendance for the Help Gmom Decorate for Christmas  event.  The reason was that I was a guest of The Elliot Hospital for a week with a significant infection in my left arm.  It went from a small area just behind the elbow to consuming my entire left arm up to the shoulder in about 48 hours!  My arm looked like The Hulk.  It took a combination of three IV antibiotics administered every two to three hours for a week.  Our oldest daughter did an outstanding job of herding cats in order to see that Pam had 24 hour coverage.  I am extremely grateful to several family friends, Pam's sister, Paula, and our daughters for their sacrifices to insure Pam's safety and comfort.  And I don't want to leave out our caregivers from Home Instead.  I am not yet back to normal.   The orthopedic surgeon says that it will take a month to heal and I am still finishing a ten-day supply of oral antibiotics.

The problem with being in the hospital was that I felt fine.  I was not in any pain and I maintained both the sense of touch and a pulse in the left arm.  I was just very bored.   Not to mention that this facility is always full.  It made no sense to me to consume a bed when all I really needed was access to IV meds.

The bottom line is that caregiver must take their own health just as seriously as that of their loved one.  A lot of people sacrificed to do my job while I was in the hospital.  And if I were in there much longer, someone would have had to make sure that all of the bills got paid, prescriptions filled, etc.  So it is just as much about me as it is about Pam.  It is taking time to learn this.