I Don't Know How Much Longer I Can Take This....

 Pam had a pretty good nights sleep last night.  She got up to go potty one time and immediately went back to sleep.  She woke up about 9:30 this morning.  After she brushed her teeth and washed her face, she came out of the bathroom into the hall.  I met her there.  I got my morning hug!  Then I took her hand and led her down the hall to the recliner in the living room.  I said that if she were hungry, I would get her breakfast.  She settled on Honey Bunch of Oats with Almonds.  I watched her as she ate her cereal.  Her left arm was shaking with tremors and the milk was rising to the edge of the bowl.  She was scooping up the cereal with her right hand which was also shaking, but not as much.  She successfully finished the cereal and I took the bowl and put it in the kitchen sink. 

 One slipper was on the floor in front of her, but the second was among the missing.  I checked the bedroom and there it was in front of her night stand.  Apparently, she walked down the hall last night with only one slipper on and never noticed.  I grabbed her slipper and the cup with her morning meds and brought them to her in the living room.   A short time later she began taking her nine morning pills.  I went to clean up the kitchen for about ten minutes.  When I returned to check on her she was sitting with her left palm cupped with three pills in it.  I looked at her face and she was staring off into space.  I looked in her eyes.  There was nothing there.  She was not looking at anything or thinking about anything.  It was as if she were having an absence seizure.  Her brain was momentarily disconnected from reality.  The tears began running down my cheeks.  I just can't stand to see this happening to her.  I just don't know how much longer I can take this!

I fear (or is it hope) that she is entering Stage 6 (of 7) on this journey.  For all intents and purposes this disease has already taken her life.  It's just that her heart is still beating.  Am I supposed to feel guilty that I hope some other ailment stops that heart?  Because I don't. The person that I have been married to for over fifty years is not here any more.  The mother of our daughters and the grandmother (Gmom) of our grandsons is not here any more.  It is so painful to think of that and to see her struggle.  When she had those pills cupped in her hand, I rubbed a finger on her palm.  All I could do was shake my head in sorrow.  Her eyes shifted to look into mine. She saw me shake my head and she returned the gesture.  She knows what is happening and that is one of the most painful thoughts.  I can't stop the tears.  Even as I write this, I have to stop and dry my eyes.  This is torturing me.

On the good side, this past week was another Sista's Luncheon.  I made our traditional Thanksgiving dinner and it was a big hit.  I topped of the meal with molten lava cake with some vanilla bean ice cream.  After dinner, Pam and her older sister started talking about high school classmates.  So I went into the den and grabbed two of their yearbooks.  It turned out to be a wonderful idea.  They spent the next two hours reminiscing about their high school  days.  Pam stayed alert and active that whole time.  This broke up her pattern of sleeping all night and then most of the day too.    I hope that she can stay awake on Friday so she can watch her grandson play starting right guard for Central High School.  He would like that.  

Things just continue to fall apart...

My apologies for the big gap in this blog.  I just have not felt much like writing lately.  So much is going on that I don't even know where to begin.  

We have been utilizing a home healthcare aide for a few months now.  The current person is very conscientious and always professional, but only 19 years old.   She has been very diligent about following the care plan, which means keeping Pam occupied and not sleeping.   However, Pam is not one that wants to be pushed.    So they are just not getting along.  With Pam's personality, once she has taken a dislike there is little chance of recovery.  So I have requested a change in personnel.  I think having a person closer to Pam's age would be better.  It is interesting that since I made that request, the HHA and Pam have had some very productive days working together on number puzzles and stickers.  We will see how this goes.

Sleep disturbances are a very common symptom of Lewy Body Dementia and Pam has this in spades.  For more than a decade, she has had issues with  REM Sleep Disorder.  The normal brain effectively paralyzes arm and leg muscles during REM sleep.  It is known as atonia.  People with REM Sleep Disorder, like Pam, act out their dreams both verbally and with their arms & legs.  It is fun (not) getting whacked in the head in the middle of night while she is dreaming.  Another form of sleep disturbance is excessive daytime sleep.   That basically describes one of Pam's 'bad' days.  Last Sunday was an extreme version of a bad day.  She never had any of her morning or evening meds because I could not keep her awake long enough to take them.  It was almost like she was in a coma.  The next day, Labor Day, she was fine.  She interacted with our grandsons and was conversing normally during dinner.   Often when she has sleep quality issues during the night, she has no memory of any of it the next day.

Pam's loss of the ability to understand time has reared its ugly head yet again.  She had a manicure appoint set up for 8:45am last week.  Pam went to bed around 9 or 9:30pm.  At 10:30pm she was awake and began showering and getting ready for her appointment.  I tried to explain that she needed to go back to bed because her appointment was many hours away.  She just shook her head and continued to get ready.  She sat on the couch for hours in her coat and sunglasses waiting to leave for her appointment.  She finally fell asleep about 3 am.  Needless to say, I got very little sleep that night.  My alarm went off at 7am and I woke her.  She did not remember any of the events from the overnight.  Fortunately her appointment went off without a hitch.

Every morning I am reading the poem hanging by the coffee maker.  The one I included in this blog a few episodes ago.  I need it to continue to remind myself that it is really not Pam that is causing this frustration that I feel.  Our ability to communicate with each other is becoming a real challenge at times.   Sometimes she has no recollection of our previous conversation on the subject.  At other times, she is recalling a conversation that we never actually had.   But more often than not, she is just unable to process the conversation cognitively.  A common example is when I ask her if I can get her anything to eat.  I will mention the things I can get her.  She just stares at me but never actually answers.  She is trying to process the list and decide.  But she just can't do it.  Then twenty minutes later she will ask where her food is.  But you never told me what you wanted.  She just can not evaluate choices. 

Clearly, this problem is my responsibility to work through.  Her damaged brain can not be held accountable.  I am the one accountable.  I am accountable for adapting and changing to fit her needs.  But this is so hard to do, especially for someone like me that tends to be a literal thinker.  It reminds me of a book I bought back in the 1990's entitled You Just Don't Understand by Deborah Tannen.   The book focused on issues of communications between men and women.  It is like were are understanding the words, but our understanding of them is framed in a different context.  But because of the dementia, she is not in control of her frame of reference.  And it is often difficult for me to try and figure out.  And throw into this issue the typical word finding issues of most dementia patients.

On the bright side, we still hug every morning.  I have noticed that she tends to be in a dense fog first thing in the morning and often shortly after dinner.  Some days she does recognize who I am and on others she does not.  At times I don't think she even knows who she is.  If I ask her for her birth date and she just giggles, then I know that she doesn't know.  She has needed more assistance getting dressed lately.    She has problems putting on a coat or her bathrobe.  She can get the first arm in, but the second one is a challenge.  The same is true with shoes and socks.  She is slowly losing the ability to move her legs.  She is also requiring more help getting in or out of the car.  She can get the first leg out, but the second one (left side) is just not cooperating.

As if all of this were not enough, I am having my own health issues.  Suddenly, my body started retaining fluid, known as edema.  There are numerous possible causes but the most common are a medications and heart disease.   In the last few weeks I have had four blood panels, a urine panel, two ultrasounds, a CT scan, and an echo cardiogram.   The good news is that the results of these tests were within normal limits.   The bad news is that all of these tests were all within normal limits.  This echo was the third in the past two years and it shows no changes in the heart.  Last year I had a stress echo, an EKG, and a cardiac catherization.  They all found my heart to be normal.  So now what.  Something has changed, but all the blood test show heart and kidney function  normal.  I am concerned.  But the doctors don't seem to be because of the blood test results.  That is just adding to my stress level.

How Did You and Gmom Meet? How Did That Develop Into a Relationship?

 I thought it might be a good idea to take our minds off the dementia journey for a few minutes, and focus on something more emotionally enjoyable.  So I wrote about how Pam (aka Gmom) and I met.  Enjoy.

Once upon a time, in a location far, far away, I graduated from college.  It was April 1971.  I was single, without a job, and homeless.  Despite the fact that I was engaged when I first started college, I had no girlfriend.  I had several while in college, but none developed into a long-term relationship.  So with few connections and even less money, I headed to Hudson, New Hampshire where my parents lived.

I had grown up in Milford, Connecticut and went away to Daytona Beach for college when I was eighteen.  While I was away, my parents moved to Hudson because my father’s job had been transferred to Massachusetts.  How embarrassing, at twenty-three years of age I had to move back in with my parents.  I had two younger brothers that were still at home while they finished high school.  I set up in a spare room built into the basement.  Penny-less and car-less, I began looking for a job.  I had majored in Aeronautical Engineering. And while there were very few opportunities to find that kind of job in New Hampshire, I focused on any job with the word engineer attached to the title. 

Several weeks into my search, I was finally offered a job.  While it did not have engineer in the title, it was in the engineering department and afforded some opportunity to achieve that goal.  So in July of 1971 I began working at Sanders Data Systems (a division of Sanders Associates) as the Senior Inspector in the model shop.  The model shop built the engineering prototypes for new equipment.  Sanders Data Systems built a display terminal to compete with the IBM 2260.  Later in 1971, IBM introduced the 3270 interactive terminal system and Sanders began engineering a competitor.

One of the first tasks that my new boss had was to introduce me to the company.  That began with a review of the product and shortly after, resulted in a tour of the manufacturing floor.  Off in the front corner of the manufacturing area was Sub-Unit Test.  An array of large test stations that were custom built to test circuit boards.  I was introduced to each of the test operators during the tour.  Among them was Junior Test Technician Pamela Woods.  She was a very skinny blond with very long hair and very pretty smile.  We greeted and then moved on.

 

The model shop was located at the other end of the building from Sub-Unit Test and I had no interaction with them in the execution of my job.  Right next to the Model Shop was the Shipping Department.  I soon got to know Doris, the Senior Inspector in the Refurbish Department, located right next to Shipping.  She introduced me to the secretary in the Shipping Department.  I don’t remember her name but she was about my age and very pretty.  Most noticeable among her attributes were her large hair and her large chest.  Doris was working very hard to get me to date this young secretary. But it never came to be.

One afternoon, around the September timeframe, I had a need to go to the rest room.  It was located about 100 feet from where I was working, down the hall and a hard right turn and down the next hall.  As I was approaching the right turn, that skinny Junior Test Technician from Sub-Unit Test was returning from the rest room.  We physically ran into each other at that right-hand turn.  She immediately said “Hi Bruce” and kept walking to her post.  I was dumbfounded!  I remember having met her, but had no recollection of her name. And I thought to myself… she remembered my name!  Why did she remember my name?  I was impressed.  Besides she was very pretty.

That was it.  That one simple event.  The collision on the way to the rest room.  It made a lasting impression.  An impression that has lasted over fifty years.  It was not long after that that I found a reason to go to Sub-Unit Test and chat with Pam.  We started to get to know each other.  And not long after that that we went on our first date.  It was a mixed affair.  We spent some time in her apartment on Library Hill in Nashua watching TV.  One of the most popular shows at the time featured a skinny blond with long hair as a member of the Mod Squad!  When that was done, we headed to the sea coast to see a local ensemble group known as Mac’s Mob.  They were playing at the Peppermint Lounge in Salisbury Beach MA.

So that is how we met. 

I don’t think either of us felt like it was “love at first sight”.  But clearly, the relationship developed quickly.  We only dated about ten months before we got married.  But there is one interesting side note that should be included here.  As I mentioned, Pam lived in an apartment on Abbott Street in Nashua and I was living at my parent’s home in Hudson.  When we first started our relationship, we would hang around her apartment until late evening.  At that point I needed to get back home to get some sleep.  But I still had no car.  So I would typically leave her apartment around 10 or 11 pm and try to hitchhike back into Hudson.  Not only was this an arduous task late at night, it could also be a little dangerous.  She voiced her concern about the danger and began convincing me to stay overnight at her apartment.  But having been raised as a ‘prim and proper’ young man I was not very aggressive, and maybe even a little shy about intimacy with women.  The result was that on those nights that I did stay over, she would get dressed in her pajamas and slip under the covers and I would sleep, fully dressed in my street clothes, on top of the covers.  I have no idea how long that lasted, but I would guess that it was not too long.  And as they say… the rest is history.

Not long after our first date, Pam’s landlord let her out of the lease because her “friend” had bailed out and left her hanging for the full cost.  Pam was able to move in with me at my parents’ house, although my mother was not pleased with the example it set for my younger brothers.  To be respectful of her concerns, Pam and I quickly found our own place.  We rented a house not far away, with another couple.  That didn’t last long because the other guy was pretty strange. So we rented one unit in a three-family town house in Litchfield.
  I distinctly remember the day we were married.  We were planning to go to Cape Cod for a quick honeymoon. After the reception, we returned to the town house to rest up before the long drive.  As we got out of the car, many of the neighbors were outside and Pam yelled out “I finally got him!  We’re married now.”

An interesting side story about the town house… one day there was a knock on the door.  A gentleman announced that he was the new owner of the building.  After leaving, Pam mentioned that she did not trust him because he was from Lowell, Mass and he talked out of the side of his mouth.  Sure enough, a few months later he was arrested for trying to have his wife killed for the insurance money.

But just before our lease was up, we met another Sanders employee that had a mobile home for sale.  She had been divorced and was getting remarried, so she no longer needed it as a home.  So Pam went to the local bank branch and took out a personal loan to cover the down payment.  A week or so later, I went in and took out a loan for the balance of the price of the mobile home.  The unit was located at Olsen’s Trailer Park on Route 3A in Litchfield.  There were two sections to the park.  The lower section was a loop road with mobile homes placed in line right next to each other all the way around the loop.  If you continued in on the access road, and up the hill, you would find the upper section.  It was an L-shaped road with just a few units spaced out from each other and a large open field across the street.  We bought that mobile home and lived there for several years.

 

This Stranger Makes Me Very Nervous...

After having a good week of socializing, Pam has seen a major decline.  Wednesday was the monthly lunch with her sisters.   Saturday morning was the monthly Condo Coffee Hour.  A small group of the residents congregate, drink coffee and consume home-made cakes and snacks.  Just like when we were in high school, the women congregate in one room and the men in the other.  Of course, the  men are closer to the food.  And the crowning event of the week is what I refer to as the gathering of the GDTC Old Folks.   They are a small group of couples that have been friends for many years.  The men all used to run and hike together.   It has been quite a while since we gathered and it was a wonderful time of memories.

 The Old Folks met as a result of their membership in the Greater Derry Track Club, beginning in the 1980's.  I began my involvement by writing a few club newsletters and eventually became President for a couple of years.  We ran fun runs, road races, and even a few marathons together.   In an effort to expand our horizons, we began hiking together.  We climbed a number of the four thousand footers in New Hampshire, including several trips up Mount Washington.  We also did some backpacking, across the Pemigewassett Wilderness.  Eventually, we began winter hiking.  This was both challenging and exhilarating.  Our expeditions up Mount Lafayette and Mount Madison began in sub-zero temperatures at the parking lot.  Fresh snowfall made for some beautiful pictures and lots of practice on the snowshoes.

Pam seemed to have a good time on Saturday, engaging with friends and talking about old times.   Sunday night seems to have been a major turning point for her.  Near midnight I heard her crying in her sleep.  I went in to console her and let her know that she was safe.  But she never woke up.   She did wake about 4 am and seemed very confused.  We sat on the couch together and I was rubbing her knee, but she seemed very nervous.  Eventually, I asked if she knew who I was.   Her first response was a giggle, which I have come to expect when she doesn't want to answer the question.  But I eventually got my answer.... she does not know me.  I have tried to prepare myself for this moment.  but there is no adequate preparation for this.  She still remembers our daughters, so I am hoping with their help I can make Pam feel safe with me.

 In addition, Pam is having more and more trouble moving around the condo.  Her balance is really bad at times.  She seems to be in a fog for the first hour or so after getting up in the morning.  She is needing more assistance in the bathroom  and getting dressed.  Last night she was looking for our current home health aide to assist her in the bathroom.  And I have noticed that the tremors in her arms have gotten stronger.  We are about one month into having home health aides providing some coverage for Pam.  I will need to spend some time thinking about what will be the most effective use of their time.  They are currently here four hours a day Tuesday thru Thursday afternoons.

This dementia journey takes another turn.  I have done a lot of reading to prepare myself for what is coming.  But when it arrives, I am completely ill prepared emotionally.  No one deserves what this journey forces us to endure.

The Long, Slow Decline Continues...

 Hello, dufus husband here!   That whole conversation still cracks me up.  But I don't mind.  I know that it is the damaged brain cells that are doing it.  The good brain cells would never call me that.  😀  This is going to be a very boring blog post.   While Pam continues her decline, there have been no major new issues.

We are into our third week of home health aides (HHA).  They are here for four hours every Tuesday, Wednesday, and Thursday.   So far things are working well.  I sat down and spent some time thinking about just what should the HHA be doing.  I put together a list and prioritized it.  I then sent it to the agency.  They incorporated my thoughts into their Care Plan.  Number one on the list is keep Pam engaged and socializing.  Also on the list is assisting her when she moves around the condo, takes a shower,  or gets dressed.  I purchased a number of sticker books, paint with water pictures and a couple of puzzles.  The objective is to keep Pam engaged.  When there is little to do, Pam just nods of.

Having someone here allows me to go run errands, putter around the workbench, or just be on the computer.  Today I was able to run to the hardware store and pick up some supplies.  Last week, I was able to run to the pharmacy.  So I am pleased so far, but not sure of how Pam feels.  She has always been fiercely independent and that continues despite her decline.  She gets annoyed when I or the HHA are constantly asking if there is something we can help with.

Speaking of decline, the physical decline continues to be the most visible.  She has lost both strength and range of motion in her legs, to the point where she can only lift them about two or three inches off the ground.  So walking is a shuffle more than anything.   When the ground is uneven,  it becomes a real chore.  Getting into or out of the car is nearly impossible without assistance.  She drags her foot across the floor and then can't lift it over the door thresh hold.  I noticed that she has tremors in her arms while she is sleeping.  And coughing is a real problem.  I assume that she does not have the strength to cough normally.  Instead, it is a steady chirping sound.

On the cognitive side, I saw a new one today.  Pam is diabetic and is supposed to prick her finger and measure her blood sugar.   The HHA sat with her today to help her do that.  But Pam could not remember the sequence of events to arm the pricker, ready the meter, and do the test.  The HHA is not allowed to actually do the testing, so I had to step in and do it.  The reason the HHA can't do the test is that it is considered a medical procedure.  The agency charges a higher wage for an aid with nursing credentials.  I am also starting to see a change in personality.  We were sitting at the table eating breakfast and I mentioned that she didn't seem happy and wondered if something was bothering her.  That conversation led nowhere.  I wonder if she knows who I am?

And Pam's short-term memory is just non-existent.  For example, just before the HHA arrived today, I asked Pam if she wanted some lunch.  She answered in the affirmative.  I slowly listed the things I can make her and left her some time to decide.  About an hour later, the HHA came to me and said that Pam is still waiting for her soup for lunch.  But she never told me what she wanted.  Another example is the shower.  This morning we had a discussion about her need to shower today.  She agreed.  After dinner, I asked her about a shower and she insisted that she had already showered.  I can see that this shower business is going to be a real issue.   Maybe I can get her to shower with me.  😆  Yea, I am not going to count on that.

We went to a concert in Stark Park in Manchester on Sunday.  One of our daughters and our neighbor were there.  Pam spent the entire time in the transport chair.  We tried to keep her engaged in conversation, but at times she just nodded off.    It was a little funny because we were only about 30-40 feet from the stage.  And with the music blasting, Pam was asleep.  Yet at times her legs and arms were tapping to the beat of an Eagles song.  The rest of us enjoyed a great performance.

As I am typing this, I hear the shower running.  I guess it won't be so bad after all.  I tried the door handle on the bathroom and it is locked.   I guess I am not allowed in.