The First Family Holiday Where She Is Absent...

 I really look forward to the holidays, like Thanksgiving.  I love getting all of the family together.  I love cooking for everyone.  But in some ways I am glad that this Thanksgiving is behind us.  The daughters and grandsons were all here.  There was no family drama.  The food was excellent.  And there were five pies for nine people.  But Pam was essentially absent.  When the girls and their families arrived, Pam was asleep in bed.  I focused on getting the dinner finished and on the table.  Several of us tried to wake her for dinner, without success.  So we had Thanksgiving dinner without her.

It is just 5 pm.  The kids are all gone.  I just turned off the light in the bedroom.  She is sound asleep again.  We sat down to eat a little after 1:30pm.  Pam came wandering down the hall just as we were starting to clear the table from dinner.  She was walking slowly and was very groggy.  She recognized the grandsons right away and gave each of them a good hug.  Then she greeted the daughters.  I leaned over and asked if she wanted something to eat.  I fixed her a plate of mashed potatoes, cornbread stuffing, turkey, green beans, and squash.  She slowly ate her dinner.  That is another observation since the seizure.  She still feeds herself, but very slow and deliberate.  As we were beginning to cut into the pies, I glanced over at her and there was that completely blank stare again.  Her mouth was open and her head was not moving around the room.  Just a stare.  Like the lights were on but no one was home.

I cut her a piece of chocolate peanut butter pie and set it in front of her.  She was just staring out into space.    Eventually she picked up the pie and started to get out of her chair.  I asked if she was headed back to bed and she said yes.   Courtney and I got her tucked into bed as everyone lined up at the bedroom door.  It was time for folks to leave.  They wanted to give Gmom their good-bye hugs.  Each of the grandsons took turns saying good-bye and Happy Thanksgiving and filed out of the room.  I was the last to leave the room.  I was in tears.  Seeing her this way is so painful.  Thinking that this is probably the last Thanksgiving where she will recognize the grandsons.  I think this is the first time that most of the grandsons saw me crying.  Essentially we had our first holiday without Gmom.

The oldest grandson saw the tears.  He came over and hugged me.  It was a long hug.  I grabbed a tissue and sat back at the table.  He started asking questions about the dementia.  At nineteen years of age he clearly understands what is going on and more importantly understands the impact it is having on me.  For an instant I thought about how men rarely show their vulnerabilities.   But it went away quickly.   I am sad.  Sad to see what it is doing to her.  Sad that the grandsons see how she is being affected.  Sad that this was essentially the first family holiday where she was absent.  The banter around the table at dinner was the same as always.  But there was a hole.  A hole starting to get filled with tears.

We've Come A Long Way Baby...

If I have counted correctly, this is a very special edition of the Change the Journey blog.  Why?  

This is blog entry number 100!  

It does not seem possible.  I was someone that hated language arts in high school.  I even failed it in my junior year and had to go to summer school.   And now I am not only writing a lot, but I am writing about thoughts and emotions that are very personal.  The very first blog post was a description of our stay on Prince Edward Island in Canada and a review of one of our favorite places to take the RV, Sebago Lake State Park in Maine.  What started as a travel blog shortly after Christmas in 2019 has been transformed into a journey of dementia blog.  It is funny because a dear friend recently sent me a quotation about how the storm will change you.  The fact that I am still writing this blog and talking about the things I do is evidence that this storm has changed who I am.  I hope that you enjoy blog number 100.

In the last edition, I mentioned that Pam has had a seizure.  We are blessed that we have not had a recurrence.  But there has been a marked degradation in her condition.  My primary observation is that she is thinking more slowly, speaking more slowly and with a weaker voice, and her movements are more unbalanced and slower.  The most alarming thing to me is that her face is almost expressionless.

 Watching Pam have this seizure was traumatic for me.   I gather that her 30 second seizure was on the short side.  The thought of her having another is terrifying.   And to think that they can last three or more minutes.  The only saving grace is that she has no recollection of the seizure.  Actually, she could not remember anything about what happened that day. 

The doctors in the ER blamed one of her medications for the seizure.  I am very skeptical that was the cause of this seizure.  I am no expert, but Pam had been on that medication for about a decade.  Why would it suddenly cause a seizure?  That is one of the questions for the doctor appointments this coming week.  Shortly after getting home from the ER, I messaged both her Primary Care and her Neurologist about the event.  Both called the next day.  I am pretty sure that her Primary contacted the Neurologist and advocated on Pam's behalf.  The result is an extended appointment first thing on Monday morning.  Pam and I have the same Primary Care Provider and I must say that I am very impressed.   She has always been an excellent listener and a strong advocate within the Elliot organization.  She is a young doctor, but always knowledgeable and  well prepared.

Included in the doctors Discharge Orders from Pam's first visit to the hospital, was a request to evaluate Pam for admission to Home Health Care by the Visiting Nurse Association (VNA).   So the very next day we were visited by the RN who gathered all the information.  The Physical Therapist was out the same day.  The next day the Occupational Therapist paid us a visit.  It was during this encounter that Pam had the seizure.  While I welcome the help that VNA may be able to offer, I must say that I am a little skeptical about this process.  And it is not just me.  I have had this conversation with our oldest daughter.  So far the process feels a little invasive and judgemental.  But we will try to keep an open mind and go with the flow.  

 One of Pam's great joys has always been decorating the house for Christmas.  Given the progression of this disease, both on the physical body and on the brain, I suspect that this may be the last Christmas that she is capable of doing that.  I have asked our daughters to give some thought to ways that their boys can work with Gmom to do the decorating.  I  know that she would love to spend the time with them, and I am hoping that it will leave them with some cherished memories.

And What a Week It Has Been...

 As I mentioned in the last blog, Pam has exhibited some new behaviors.  I became worried about her refusal to eat or take meds and decided to take her to Urgent Care.  As it turned out that was a wise decision.  Urgent Care eventually referred her to the ER and after numerous tests, she was admitted with an infection.  The stay in the hospital was short and she was back home and on antibiotics.   Sounds good, right?  Yea, not so much.

The doctor that wrote the discharge orders included a provision involving the Visiting Nurses Association (VNA).  They evaluate the home situation and offer education and professional care as needed.  The very next day, they were present to coordinate services which insure that you can be safe in your own home despite your medical situation.  For Pam that has involved physical and occupational therapy. 

Wednesday was going to be a busy day for us to begin with.  A crew was due out in the morning to remove the old countertop in the kitchen of our condo, in preparation for a new granite counter.  In the early afternoon, another visit to establish the precise measurements for the new one.  And then there is a the phone call from  the VNA Occupational Therapist arranging her visit with Pam.  With banging and sawing noises coming from the kitchen, Pam and the OT specialist had a long conversation about her condition.  Then Pam lead the tour of our bathrooms and bedroom.  With the tour done they were back sitting in the living room finalizing the visit, when WHAM!

Out of the blue, Pam began to have a Grand Mal seizure.   In the first few seconds, I thought she was fooling around.  Then comes the combination of confusion and the adrenaline rush!   What is happening?  I have never seen this before!  What do I do!  Help!   It is all going through your brain in milliseconds.   Thank goodness the OT specialist was here.  She jumped right up and held Pam in place while I called 911.  After 30 seconds or so the shaking stops and it is replaced by labored breathing with a lot of throaty noises and drooling.  My confusion is quickly replaced by my concern for Pam.  Breath, Pam.  Don't stop.  Breath.  While these thoughts are running through my head, the 911 Operator is asking questions and giving  me directions.  Slowly her breathing stabilized.  Where are those Paramedics?  Why is it taking them so long?  The reality is that they are there quickly.  But my mind is stretching seconds into minutes.  It feels like an eternity.

Once the professionals arrive, I moved out of their way and began calling our daughters.  They answer the phone, but I can not speak.  I am crying and trying to talk  With several pauses to try and collect myself, I talk to each of them.  And while I am on the phone, the in-home caregiver arrives for her shift.  While all of these emotions are still running rampant through my head, she is focused and engaged.  We grab our Go Bag and head to the bedroom to refill it.  The ambulance leaves and some level of calm starts to settle in.  I am in good hands with the caregiver and the VNA specialist.  Their conversation helps me to collect myself.  I am so grateful for their presence.

So we are back in the ER for the second time in less than 48 hours.  The brand new Emergency wing at Elliot Hospital is impressive.  Thirty five treatment rooms, and a couple of triage rooms.  Our three daughters are all there Again!  But poor Pam hates the hospital.  And there is more poking and prodding.  Only two people are allowed in with the patient, so we take shifts.  Fortunately, this is a short visit.  It only took about five hours to do all the tests, consult all the specialties, and decide that Pam can go home and this was just a reaction to one of her medications.  A med that she has taken for years.  This time it caused a seizure.  Heaven knows why. 

With Pam safely tucked into bed, I begin to unwind.  I send a note to her Primary and her Neurologist.  I review the events of the day in my head.  I am VERY thank for for the presence of the VNA OT specialist.  I could not have handled this situation alone.  Trying to keep Pam safe on the recliner and talk to 911 is tough.  I am also very thankful to the professionals of the Litchfield Fire Department.  I think the ambulance may have been from Hudson.  If so, I give them Thanks also.  They were all very professional and efficient and they understand how to handle the freaked out family.  I can not forget the caregiver from Home Instead.  She arrived in the middle of it and was very helpful in getting me prepared and calmed.

And this journey continues.  You can read and study the details of the dementia.  But you can never really be prepared.  No one can predict what will happen next.  And even if you could, your  emotions change everything

This Is Not The Yellow Brick Road....

 I think we may be entering a new phase of this journey.  I have noticed several changes in Pam.  One occurs around dinner time.   I have found her sitting in the recliner with a blank stare and she doesn't even respond to my voice.  I suspect that she has no idea of where she is or who I am.  It is like an extreme case of 'sundowning'.   

The other change that I am seeing is a behavioral one.  She woke up early on Thursday and eventually settled into the recliner.   For the entire day she was negative and obstinate.  She refused to have anything to eat  She refused to take her meds.  She  refused to even refuse when the care provider arrived and suggested some activities.  She would not even answer questions about whether we could help her or not.  I have heard some real horror stories about behavior issues from other caregivers.  I hope that we are not going there.

Pam has been taking an OTC pain reliever for her back pain.  Recently, she has had great difficulty  swallowing the pills.  My last trip to the pharmacy included getting the gelcaps and the liquid version of that pain reliever.  Given her extensive medication list, I don't even want to think about what this portends for the future.

One of the problems that we are having is the height of our bed.  The bed frame with box spring is fifteen inches tall and then the mattress is another eleven inches.  With her loss of range and strength in her legs, it is very difficult for her to climb into bed.  We tried an old pink step stool that we have had since our  girls were toddlers, but that did not work.  So I purchased a two-step stool that seems to work much better.   We got a hospital-style bed rail to keep her from falling out while she's sleeping, but it has presented another unforeseen problem.  When she needs to go to the bathroom in the middle of the night, she hangs her legs over the side of the bed, right through the bed rail.  When I ask her to lay back so that I can pull her feet out, she complains.  So I have ordered a solid cover for the bed rail.

Recently, she has begun crying or whimpering at night.  At times, she seems to be awake and at other times she appears to be asleep.  I have asked if she is in any pain or how I can help or what can I do and there is little to no response.  She does not know how I can help.  It is very hard to listen to this.  Much like the mother of a crying infant, there is a desperate need to respond and relieve whatever is causing the discomfort.  But I have been unable to find out the cause.

Experts have broken the lifespan of dementia into seven stages, and generalized which symptoms are prevalent in which stage.   When I reviewed that list for Dementia with Lewy Bodies, Pam appears to be in Stage 5 and leaning into Stage 6.  She can still shower, eat, and go to the bathroom on her own.  She does need helping getting dressed and getting into and out of bed.   Walking and balance are her biggest physical issues right now.  That and extensive sleep disorder.  In the two short years since the original diagnosis, this disease has progressed quickly.  As a caregiver, I am dreading what the future holds.

So Much Going On. So Many Decisions...

 For those that also see my Facebook page, this will be old news.  But worth repeating...

I feel compelled to give kudos, in a very public way, to my eldest daughter. As most of you know I am the primary caregiver for my wife, her mother. Dementia is an insidious disease, that takes an awful toll on both the patient and the caregiver. But whenever an opportunity comes up for me to go do something, she is the first to raise her hand. She has her hands full with a job, a husband, and three very busy boys. Yet she is always there. This is not to diminish the fact that the other two daughters help tremendously. They do. But Courtney's hand is always the first up. For that I am immensely grateful. I guess that is just an indicator that Pam and I did a pretty good job as parents. Not at all perfect. But pretty good. THANK YOU, Court.  

There is so much going on around here that I don't know where to begin.  A couple of weeks ago, were were in a quandary about  whether to try traveling to Atlanta with Pam.   My niece just got married in Italy and they have scheduled a celebration for friends and family about a month later near their home outside of Atlanta.   This niece is very special to us.  We really do not want to miss this.  But can we safely take Pam on a plane to Atlanta?  If she is having a good day, then there is no doubt that she could travel without issues.  However, a bad day could make the trip a nightmare.  Excessive daytime sleep is common with Lewy Body patients.  On a bad day, it almost seems like she is in a coma.  On a couple of occasions, I have not been able to wake her long enough to even take her meds.  Add to that, her frequent hallucinations, I dare to think of what kind of issues we would have on an airplane.  Sadly, we have decided that it would not be safe.  My oldest daughter wants me to make the trip and she would mommy-sit.  But I think it is more important for her to go. 

We left Maine in late 2020 to travel full-time in our motor home.  Because of COVID, we spent seven months in Silver Springs, Florida.  On our trip back to the Northeast, we camped at Stone Mountain, in Georgia.  We had a wonderful time visiting this niece and her then fiance.  We share the love of cooking and made raviolis together.  We also had a fantastic visit to the Botanical Gardens.  This trip would just add more great memories for everyone.   I know that she will be disappointed, but she will understand.

 

 We also have a lot of stuff going on in the background.  The daughters and I have an appointment with an elder attorney in mid-October.   So far I have done most of the legal documents  using the templates provided by the states.  But I want to make sure that everything is in place and done properly before we actually need to use them.  I am also adding one of the daughters as an authorized representative on all of the utility accounts.  And while our plan is to keep Pam at home rather than a memory or assisted living facility, I have begun the process developing an inventory of all of the nearby facilities, their services, and costs.  The hope is to narrow the list to a few and visit them.  If something were to happen to me or Pam's safety at home were at risk, we want to be prepared.

We anticipated a wonderful summer when we moved our motor home to a seasonal site about an hour north of here.   But that is not how the summer worked out.  The bed in the RV is tall because of the storage space and fresh water tank located under it.  Pam  had a lot of difficulty getting into and out of bed.  And I dread the thought of what would happen in an emergency.  Plus, every time we did go north it rained.  It was not a great experience.  So one of my grandsons and I retrieved the RV and it is back in storage.  Now I am faced with the decision to sell it or not.  I don't really want to sell it, but the cost of storage will add up if we are not using it.  I think that decision is getting more clear.   If we do sell the RV, then what?  I made a promise when we sold everything and left Maine that if we sold the RV I would buy another Dodge Challenger.   I loved that car.  It was more than a passion, it was almost an obsession. 

 

Pam has been very clear since her diagnosis that she does not want to be relegated to a facility and that she would prefer to stay at home.  While I wholeheartedly signed up to satisfy her wishes, I came to a very stark realization early this morning (about 2am).   I was asleep in the recliner in the living room when I awoke to the sound of a bell ringing.  I had given Pam a couple of bells to keep nearby in the event that she needed any help.  Awakened by the bell, I pranced to the bedroom to find her on the floor.  Much of the contents of the top of her nightstand was also on the floor and the back of her shirt was soaking wet.  In trying to get out of bed, she fell on the floor, spilling her drink all down her back.  In attempting to lift her up off the floor, I realized that I can not do this!

 

 The effects of the Parkinson's symptoms has caused her to lose much of her strength and range of motion in her legs.  Her inability to provide some lifting force meant that I was trying to pick up a dead weight.  I did finally get her to sit on the edge of the bed, but I was significantly out of breath.  The realization that I am not going to be able to help in all the ways necessary, hit me hard.  Thoughts of my grandfather succumbing to a heart attack trying to lift himself off the floor ran through my mind.  The local fire department says "call us, we are equipped to do this".   This event caused me to reevaluate just what it is going to mean to keep Pam at home when she can't move, or eat, or speak on her own.  My own health issues are going to make it very difficult to care for her properly.  I am agonizing over this issue.  Am I betraying her wishes or am I trying to provide the best care I can.  This emotional roller coaster continues its journey.  And I am hanging on for dear life.