A Decade in the Fog – A Journey with Alzheimer’s


My Mom, Maja Hoffmann, passed away on January 18, 2015 after an over decade decline with Alzheimer’s.  It was a long journey to get to the inevitable end. It seems that Alzheimer’s has been with our conscience for a very long time now, with nary a solution in site.  It has increasingly come to the forefront in the news starting with the diagnosis of former President Ronald Reagan n 1993, that ultimately led to his death many years later in 2004.  It is a slow disease that leaves the victim with a shell of a body and a corrosive mind far less than what it used to be.  It was with this backdrop that my mother was diagnosed, not long after the death of my father nearly ten years ago.  The journey has been one that is often documented, but this will just be my own personal account on the route we took to get to where we are today.  My hope is this can be of use and a guide to those who also have loved ones who have been diagnosed with this horrible condition, perhaps to comfort and certainly to educate for what lies ahead.

It started simply enough.  My mom was becoming forgetful.  A year before my father passed away, he was hospitalized after a fall outside a restaurant in Bellevue.  My aunt and her sister were in town visiting from Denmark when this happened.  It was unfortunate timing, but they would go see my Dad every day at the hospital.  My aunt commented to me one day how forgetful my Mom had become.  Every time she said they went to the hospital the aftermath was they could not find the car as my Mom could not remember where in the parking garage she had parked.  We also stated to notice all the dinner parties and girls luncheons that my Mom loved to host, the meals seemed to be shrinking in size.  It was as if side dishes were disappearing.  There was more empty space on the dining room table. than had ever be seen before.  It got to the point at one luncheon that all the woman ate the plain French bread on the table, they were so hungry.  It was comical at the moment. At the time we were more focused on my fathers declining health, this would come back to haunt us, as we neglected to focus on my mom.

Following my father’s death on January 17th 2005, after a lot of scares leading up to his death, we could now focus on my Mom.  She would stay in her home for a year, but we now started getting her in for evaluations at GroupHealth Medical Center.  We did a series of tests.  Some were just following a set of 25 instructions (touch your toes, with two finger touch them over your head..).  We had a cat scan of her brain. The doctor said, “you can see a thinning of the walls”.  I responded, “That could be the normal state of her brain?”  the doctor said, “yes that could be true”.  My take away?  All human brains look like a walnut.  In the end they determined my Mom had Alzheimer’s.  In the days and weeks that followed it would become pretty self-evident.  I would take her to the doctor, which was a mile from her house.  However I went a different way than she was used to (yes she still had a car at this time).  This created great confusion for her, she was even a bit angry.  Not angry in the traditional scenarios you hear with Alzheimer’s, but just general frustration with me. It was something that would become clear as time went by, the ability to recalculate was disappearing.  Everything that was done was in a pattern, no deviation.

During the fall of 2005 we started looking for a new place to live for my Mom as she could no longer manage her house.  A little education for people here when looking for adult family living, the really nice ones have entrance fees. In 2005 they ranged from $60,000 – $100,000.  As far as I could tell this was your initiation fee that says welcome to our club.  I can only imagine how much they cost today.  I looked at 4-5 places before settling on the newly opened Aegis Living of Shoreline.  It had three advantages.  It was in Shoreline about 3 minutes from my house.  It had no entrance fee, so we saved money!  It was a one bedroom apartment with a bathroom, small kitchen and living room that cost in 2005, $2500 per month.  Finally it also had next door a home for people with late stage Alzheimer’s, so when the time came and my mom could no longer function on her own we had a place to move her.  In 2015 it would cost $5000 per month.  The yearly 10% increase was like clockwork. We moved her in on January 1 2006.  She was 73 yrs old.  For the next 9 yrs myself, my brother Karsten, my wife Jean and our three children Henrik, Finn and Jens Christian would spend a lot of time at Aegis.  For my kids the grandmother they remember will be the one who lived there.

Early on a few things we learned.  My mom really was losing her short-term memory quickly.  Questions were asked by her.  Answered by us.  Then asked by her again within a minute.  Conversations were negligible as she could not seem to remember the topics being discussed.  As part of our duties we bought her some whiskey (a gallon jug of McNaughton’s), as Mom liked her evening cocktail.  But it was quickly apparent she was drinking a little too fast as two days later when we checked her supply it was half empty.  So we bought a bottle of wine and a 6 pack of beer instead, but it was non-alcoholic. Early on she read the labels and was none too happy about this development. Threatening to pack up and leave and move to Denmark.  Within a year this argument disappeared as she seemed to not notice anymore and was happy.  Plus Aegis had happy hour every Friday, so she got the real stuff.  The biggest fear about the alcohol was not that she drank so much but what it did to her balance.  At the beginning she made her own coffee, this stopped quickly as we asked that all kitchen appliances be turned off.  This was because she would make a pot of coffee and then leave it on until all liquid evaporated and we were left with a burnt coffee pot.  It was a safety issue.

Physically, and I think many experience this with Alzheimer’s, she did not deteriorate much the first 4-5 years.  She had a cane but walked to breakfast and dinner.  If she dropped something on the floor she had no problem bending over and picking up the item.  Actually to begin with she gained weight at Aegis.  I would learn this was pretty normal for everyone at Aegis after they moved in,they would gain weight, and then start a slow decline.  They di  not have to cook, they basically went to an in-house restaurant every night and just ordered.  My mom in the first 5-6 years physically was doing just fine, except for bathing, she could not remember to do that.  Turns out in old folks homes it is a common thing as getting in and out of a shower is a scary thing when you are starting to lose your sense of balance.  Old people do not smell good, but then neither do teenagers.

One thing we did very briefly was give our mom Alzheimer’s medication.  The drug of choice in 2006 was aricept.  A couple of things here.  For starter aricept is expensive, about $325 per month.  A second issue is it has numerous potential side effects. Things like blacking out and having seizures, coughing up blood, painful urination etc..My mom did not have any of these side effects but when you read the warning label you are left scratching your head, “why are we doing this?”.  The bottom line however is all these drugs to this date can only slow down the progress of Alzheimer’s.  With where my mom was at we were already so far along I am not sure what we would be slowing down.  After two months we stopped.

Somewhere along the fifth year we needed to look at getting a walker.  Physically the walking stick was getting a bit dicey.  We were worried she would fall and hurt herself.  We bought her walker at Bartell’s Drug Store, a local Seattle-based company  It was like a fish taking to water.  Mom was motoring around in no time.  Her memory was progressively getting worse.  Early on at Aegis she used to call me at work, always requesting I buy her beer, wine and whiskey.  I never did buy the whiskey and she could drink all the non-alcoholic beer and wine she wanted.  At first she battled us on non-alcoholic, but that only lasted several months before she forgot.  But she could function with the basics.  Get out of bed, go eat, some back to apartment, go eat, etc..She did not need any assistance to do these things.  Aegis was also really good about when they had happy hour (with real alcoholic beverages) they would go get my mom and bring her downstairs for happy hour.  And now that she had her walker she had better balance.

During our time at Aegis on a monthly basis the local Danish Community had a lunch every month they called “Onsdags Klubben”, literal translation the Wednesday Club.  We (and by we I mean Jean) would take my Mom to visit old fiends.  Early on she had fun, especially when she got her beer and Danish Akvavit.  She would react to conversation, but rarely if ever instigate he conversation.  It was good to get her out but as time would go on she would often say she did not want to go.  As the years went by she really did not want to eave the confines of Aegis.  Luckily it did not take much prodding to get her to go and despite her weakening condition it was good to at least attempt to get her spirits up.  Even though the moment was just that, a moment.

As time progressed one thing we noticed is that Mom’s memory did not follow the norms of what you hear about Alzheimer’s.  Usually early on people become very angry and obstinate.  Unless I goaded my mom to get angry at me (which I did from time to time, just to get an emotion from her), she was usually happy and in a good mood.  Another thing you hear is people remember the past with clarity, they just cannot remember one minute ago.  My mom seemed to struggle with memories in general.  I tried to think of an analogy for my mom.  The best I could come up with was as follows.  If you fell a tree and then saw through it, you notice all the rings of a tree, each representing a year and thus telling you how old the tree is.  Now replace years with memories and rather than adding start subtracting.  that was what was happening to my mom.  With each year her ring of memories was shrinking. Towards the end she could still remember her immediate family, but the world inside her mind was increasingly being covered in a thick fog.  However she never lost her smile.

Towards the end in dawned on me that one thing Alzheimer’s does to people is their bodies are under no stress.  The things normal people worry about such as jobs and family do not exist for Alzheimer’s victims.  They have no worries, no fears…no stress.  If it were not for the memory loss most people on the planet would find this liberating. For me it did seem to explain why my mom’s body could keep motoring along.  The mental aspects of life takes a toll on us all physically, whether we want to admit it or not.  Not having any stress reduces the physical toll we pay on a daily basis.

In the last year of my mom’s life she physically began to deteriorate.  She was under a hundred pounds.  Her skin would easily crack and she would bleed a lot on her bed sheets.  This is, I should add, is not Alzheimer’s it is one of those things that just happens with age.  However we were starting to see signs that her body was now beginning to fail.  In early January we had to pick up my youngest son at mom’s, not to complicate the story but he needed to be there for 30 minutes.  After we picked him up he said that he watched TV for the 30 minutes, but even he noticed that my mom was just glazed over watching TV.  I took her to the doctor on January 16, 2015.  She weighed 86 lbs. Her back was just a bunch of scabs.  On Saturday we, being Jean, I and the kids visited my father’s grave in the tenth anniversary of his death.

On Sunday morning January 18th my brother called from my moms saying he found my mom on the floor, looking very glazed.  I dressed quickly and jumped into the car and got over to Aegis within 10 minutes of the call.  I got into her room before the ambulance arrived. She was on the floor, her eyes open but unable to track our basic hand movements.  The ER folks showed up and we got her up and into a stretcher.  At the time we could already tell one side of her body was not mobile anymore.  When we got to the Harbor View ER in Seattle it was quickly determined that my mom had suffered a severe stroke that had rendered her right side of the body paralyzed.  We now had to make choices.  In reality it was not hard to make.  Trying to keep her alive with a feeding tube did not seem to make sense.  We decided comfort care was best and we now just had to move her to a room and wait.

We waited throughout Sunday, primarily Jean, Karsten and I.  The three of us went to Vito’s bar and had a few Manhattan’s in honor of Mom (she would have approved of this).  After drinks my brother left and shortly thereafter Jean left to go home and be withe the kids.  I stayed on and at around 8:00 after the Seahawks game my friend Joe stopped by and we chatted until 8:48.  my Mom was struggling but the doctor had said a human body can last up to a week without food, I thought we had a little time and I would come back first thing in the morning.  I got home around 9:15 and took care of a few things around the house.  I looked at my iPhone and saw I had a voice mail left at 9:05, it was now 9:45 (dang phone never seems to ring when I need it to).  The voice mail was simple, my Mom passed away at 9:03.

I drove alone back to the hospital.  Jean had offered to come, but I did not like the idea of leaving the kids home alone especially since they were all asleep.  I could not get in touch with Karsten.  After finding parking and walking to the hospital I found the nurse in the central area of the floor doing paper work.  He took me to the room where my mom came to her final rest.  I shall spare you details.  I went back to the desk where the nurse was.  Filled out some forms and then we discussed where to take the body, I had done this before when my Dad died, so I guess I could say I was experienced.  Then we were done.  I stood there in the hall with nurses up and down the hall going about doing their job.  It seemed busy and yet I was alone.  i realized at that moment it was over, I had no parents.  A new chapter was opening and I walked down the hall of the hospital..alone as I had ever been.

The days that followed were filled with calls and condolences.  I have to be honest I struggled with condolences and my thought is that a lot of people who lose someone to Alzheimer’s do.  My mom’s body had passed on January 18, 2015, but her spirit was long gone.   I had realized this for sometime and by sometime I mean years, maybe a decade.  It is a long journey that is really shared only by a few people, luckily.  It is hard on the caregivers, but in so many ways it just becomes a natural part of your daily life.  The daily visits, the accidents and mishaps that come along the way.  It just blends it self in with the rest of your life.  When the end comes it is more with a sense of relief.

The days that followed were in some ways therapeutic.  For the first time in ten years I actually had a chance to remember my mom and who she was before Alzheimer’s.  I have included the eulogy I gave for my mother so, you the reader, can at least know a little about the person who was before Alzheimer’s, because I do not want you or I to remember the past ten years.  I want you all to know a little about the life that was.

When my mother first passed away I thought I did not want to comment or think about the past ten years.  A time which we literally watched her mentally and physically wither away.  Over the past week I have come to realize it has been about ten years since I thought about who my mom was and what she used to be like.  In a small way it has been rewarding to look back on those years and remember mom.  .

My mother, Maja Hoffmann, born in a small town on the outskirts of Aalborg, but in reality Aalborg is where the story and one of my greatest influences on life, begins.  She was one of 12 siblings.  She lived through the second world war, surviving tuberculosis.  She would tell me how horrible the occupation was.  She could only go to school 3 days a week…I would just look at her as I looked up from my homework, how lucky she was.  But war had it’s costs, one of her sisters did not survive tuberculosis.

When I look back at my youth it seems like  countless hours were spent going to dinner parties or hosting dinner parties.  The litany of people coming to our house or going to theirs is numerous; Hans & Delores, Ruth and Anker, Ruth and Preben, Minna and Otto, Mike and Sonya, Ulla and Sven, Johnny and Henni, Mauri Johnson, Hertha and Charles, Charlie and Sally, Rita and Roy, Ingrid og Trokvy, Greta and Henning,  just to mention a few.  When it was at our house Mom did all the work and dad prepared cocktails. It seemed our house was always people coming and going.  We had a lot of nationalities covered, though the danes outnumbered the other nationalities combined 3-1.  Karsten and I seemed to have permanent reservations at the little kids table

My mom was always interested in Traveling.  She traveled to England as a opar, was a nurse in Paris for 6 months, traveled to Italy and visited Naples, Sorrento and Capri, Saw the World Expo in Belgium, A trip to Mallorca, and the countless vacations we took as kids back to Denmark.  My desire to travel and see the world stems largely from those stories she shared with Karsten and I as kids.    She took Karsten and I to the coast every summer for several years.  We went to Lake Chelan one year.  When I was in college she had already determined my junior year that I should study abroad in Denmark.  In August of 1987 I left for a year in Copenhagen Mom, Dad and Karsten came in December to celebrate their silver anniversary.  I remember coming from school to meet them in Albertslund.  I walked in had two shots of Gammel Dansk and a couple of beers.  Mom was impressed with how Dansh I had become.  Needless to say that year abroad had a huge influence on my life and my desire to travel has stayed with me since that time.

Combing dinner parties and traveling, my Mom was very diligent in saving up her money for some long vacations in Denmark.  We did three major vacations growing up in 1972, 1976 and 1981 – each one six weeks. The first 2 with dad and the last minus dad.  They pretty much all followed a ritualistic routine.  Wake up eat breakfast.  At 10 have coffee and pastries.  At noon get dressed up and go to some huge meal at a relative or old friends house, usually with about 20 other people     or more.  Come back to where ever we were staying, have coffee and pastries at 4:00.  Get dressed up and go to someone else’s house and have huge meal with dessert.  At 9:00 have coffee and pastries.  Go back to where ever we were staying and wake up and do the same thing all over again.  Come home from Denmark and then listen to mom complain how she gained 20 pounds in Denmark for the next 6 months.

My mom also loved to read.  She always had a book around.  She would buy me books for Christmas and my Birthday.  In her youth she would tell me she loved reading about Napoleon.  She liked reading about the different European monarchs, Nicholas and Alexandra was a favorite.  She read classics (Steinbeck, Hemingway etc..) and trash novels.  Even in the latter years when we asked what she had been doing she would say, “reading a book”.  It seemed to comfort her.  She got me interested in Dickens and Victor Hugo.  

Our house always had music playing.  I remember growing up with Johan Strauss, Julie Andrews, Engelbert Humperdinck, Pavarotti, etc..When she could get my dad to go, which was rare, she would go see musicals like “South Pacific” .  She took the family to see Yul Brynner in “The King and I” at the Paramount.  Every Saturday morning she turned on the Scandinavian hour on the Radio.  She made Jon Foro and I sit through this group playing bells at the Harvest Festival.  She attempted to make me musical by signing me up for Accordion lessons.  I will just leave it at that.

If it is not apparent Denmark played an important part of our lives in the Hoffmann household.  My father reveled in the glory participating in the resistance movement..  And it was definitely very cool to have a father that participated in standing up to Nazi Germany.  But make no mistake, Karsten and I are Danish because our mother gave us Denmark.  The traditions, the local Danish community, the trips to Denmark, the sense of pride of being Danish.  I cannot thank her enough for that gift.

But maybe the most important thing I learned from my mom is she just wanted to live.  Most importantly that started with family.  Making sure we experienced life. the trips we did, the parties we hosted, -life rarely stood still at the Hoffmann household. She wanted to experience life with friends.  She did a yearly bike trip in Eastern Washington where her and friends would bike from winery to winery. She joined a hiking club briefly. She boated up with friends and stayed in Stahikan. She was President of Dannevirke, where old Danes helped even older Danes.  My mom got my dad to push wheelchairs of elderly Danes.  He was 80 at the time.   

Yes, my mom has passed.   She has gone to  a better place, where she can cherish all those memories she had from so many years of traveling and life’s adventures.  I have cherished this past week to remember my mom, the mom who bore me, who raised me, who taught me to enjoy life, to experience life. To remember who she was, to remember how influential she has been and continues to be in my life. This is not a time for sadness, but a time to be thankful for all she did.  To my grandparents Kristen and Anna, who I never met, to the city of Aalborg and the country of Denmark whose blood runs through my veins, to my father Johannes Kristian Hoffmann for meeting my mom, thank you for giving us Maja Thomsen, may she rest in peace,….with a bottle of Aalborg Akvavit

Alzheimer’s is cruel.  It is a hard and emotionally taxing journey.  It only takes, it does not give.  It leaves your loved one as a living corpse over the course of time. It can be and is a very frustrating experience.  It has been a long ten years and the end was always foretold.  Now that it is over it will be an experience that remains with me the rest of my life.  There were some good times in the last ten years, but they could never be remembered with my mom or shared as a memory.  The one thing I will do in the days and years to come is to remember my mom before Alzheimer’s.  An energetic and social life.  One that lived versus existed.

Good Night and Good Luck

Hans Henrik Hoffmann February 11, 2015

 

 

 

 

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