Mom's brain must be one in a million

My mother was a young woman when she developed mental illness.  I use the term mental illness because not only was she mentally ill (at times) but no one specific diagnosis was ever given.  There is one that was the baseline diagnosis, Bi-polar disorder (or manic depression as it was called).  Even with that baseline though it was then classified to a type 1, then a type 2 and then a shrink threw in rapid cycling once and another doctor added Schizoid Affective Disorder and another doctor mentioned Paranoid Schizophrenia once and yet another shrink threw in Narcissistic Personality Disorder.  It seems to me that whenever a new mental illness was created to add more pages to DSM (diagnostic and statistical manual of mental disorders) then a doctor would add another page to mom's diagnosis.  With every new edition and addition came a new drug or in mom's case drugs.  Over the years I'm sure my mother has taken every psychotropic drug there ever was.  When you add in the fact that she's been treated with ECT (electro-convulsive treatment) enough times to light up a small city, it's really quite amazing that she has any mind left at all.
The sad part of mom's mental illness is that it's a factor in the dementia.  For the last 7 years as mom's mental health continued to decline, me, my father and the family all attributed it to mental illness.  Her psychiatrist did the same and so each time a new symptom developed, he would add another drug or take away another drug or add a different classification of drug to negate the side effects that we all thought were caused by either mental illness or the drugs she was taking.  Really, her medications were changed so often that the pharmacy would not do week long bubble packs.  What makes this sad is not only was my mother essentially treated like a lab rat by the psychiatrists but an error in judgement on our and their parts missed what is now obvious.  Mom had been suffering with dementia for years and it wasn't until the physical symptoms of dementia began was she then and only then properly diagnosed.   Had mom been diagnosed with the obvious let's say 4 years ago, then some of the drugs for dementia could have been prescribed to slow the process.  Well, now it's to late for that and giving her those drugs now would have no effect what so ever.
When mom was getting physically ill early in the year, I begged dad to take her to Canmore hospital and not to the usual Rockyview psych ward.  I told him that this just doesn't seem like her normal mental illness and maybe the medications need to be looked at and Dr. Fedema would do that.  Dad agreed and the first thing that Dr. Fedema did was wean mom off of  8 different medications.  When that weaning process was done mom's physical symptoms were getting worse and Dr. Fedema called in a Geriatric specialist.  After a very intense assessment, the diagnosis of dementia was given.
Over the next few months, mom's physical symptoms got worse and worse.  Dad started the paperwork for admission to an extended care facility but he always intended to keep her at home as long and he could and he intended that would be to the very end.  As I mentioned before, Dad always thought she would get better and even today, there is a part of him that still does.   I also think that dad feels a little guilty because I know that I do.  If we had paid more attention to mom's symptoms, then we would have seen them and not been so complacent with the doctors.  There are days when I pray for forgiveness because I should have seen it, but I was too wrapped up in my own life.
When I moved here one of the first things I did was request to see what medications mom was still on.  Many of them were psychotropic drugs that I felt were no longer needed.  Dad agreed and so did the nurses and the nurse practitioner.  So mom was weaned off of those drugs and since her blood pressure had been stable (especially since she lost 50 lbs.), they weaned her off of those drugs too as they can cause drowsiness.  I must say that just in little over a week of being completely off all but one drug, my mom is the most alert that she's been in months.  Everyone who cares for her and sees her often agrees.  There have been no psychotic episodes and if she is little depressed on some days, well given the situation, that's normal.  She's there more often and I like it.  At lunch yesterday she said to Evelyn "Wake up Evelyn, it's time to eat lunch".  I smiled because Evelyn was on the nod and mom knows that I help Evelyn eat and that she has to be alert or she might choke.
What bothers me the most about this isn't that we missed the obvious.  Rather it's the irony of it all.  Mom needed all those treatments and she needed all of those medications.  They prevented her from getting psychotic and they brought her out of catatonic depressions and made life bearable for her and for all of us.  She was a slave to her mind for almost all of her life and yet today she doesn't need those drugs but is now tortured by her mind with dementia.  It's simply not fair.  Mom's brain really must be one in a million and she's one in a million too and I'm so very glad that she's my mother. 

The Dementia Diary: Reindeer poop

The Dementia Diary: Reindeer poop: Last night I made 160 Reindeer poops for the Christmas market at mom's new home.   Really Reindeer poop are chocolate macaroons, but they ar...

Reindeer poop

Last night I made 160 Reindeer poops for the Christmas market at mom's new home.   Really Reindeer poop are chocolate macaroons, but they aren't like the recipe you can find on the back of the shredded coconut bags.  No, Reindeer poop is my mom's creation and it is part of our Christmas traditions.  She only made them at Christmas and many times over the holidays we would make up many batches because my brother David would eat at least 30 a day, they were like crack to him, highly addictive.  Only I have the family recipe and it's in my  mind because like her pie crust and bread recipes, they were always in mom's mind and never written down.  All I can say is that mom's recipe does NOT use milk.  It's a cup of this, a cup of that, a teaspoon of this and a tablespoon of that, 3 to 4 cups of this, a cup and a half of that, 6 to 8 cups of this and 6 to 8 tablespoons of that.  I know what the this's and that's are, but no one else does and it was always and still is our little secret.  David has searched through mom's recipes looking for THE recipe, but he has never found it.  He tried to replicate it a few years ago but couldn't and he had to swallow his pride and ask me to make them, and I did.  This year when I made them, the only ingredient that was missing was my mother.  Oddly, last year around this time she called me for the recipe because she couldn't remember it.
Mom enjoyed the market, as did many residents and locals who came for the event.  Two of dearest friends came to visit me and mom and the day was absolutely wonderful and it gave me something that I usually don't get, Christmas spirit.  Even my dad, who usually hates shopping, bought a few things and some Reindeer poop.  He was a little pissed off that I only made enough for the event and none for just him.  Still he bought a couple bags and they were gone by the time I got home.  Yep, just like crack, highly addictive and once you start eating them, you can't stop.
There was a little bit of sadness for me too.  Mom loved Christmas and would start her shopping in the summer.  By December, the hallway closet was packed with the little things and big things that she had bought.  But mom hated wrapping the presents, so at a very young age, she taught me to how to wrap and curl the ribbons and make every corner just perfect, like Origami.  Years later when I was on my own, she would leave the x-mas wrapping for me to do when I came home for a visit and seriously, a couple years she actually had me wrapping my own gift.  One year when I was in Vancouver and said I wasn't coming home, she bought the train ticket so I could come home and I swear it was to wrap her gifts.  Another year when I insisted on hosting x-mas, she brought a car full of gifts for me to wrap.  It didn't matter that her friends, neighbors and co-workers would all get the gifts late.  No, what mattered what that they were nicely wrapped with ribbons and bows and expensive paper.  No gift from mom ever came in a dollar store gift bag. 
On the first of December she would do her x-mas cards and that was a three day event because the woman sent out at least a hundred a year, even more.  She would MAIL a x-mas card to the neighbors next door and even to me.  Off course she would also get many x-mas cards in return and by the middle of December the house was strings and strings of x-mas cards.  She had a system with her cards.  If she sent one to you and did not receive one back from you, then you were off her list for the next x-mas season.  I hate doing x-mas cards and gave it up years and years ago.  On the year that I did not send one to my mother, she called me.  "Lisa-Marie, why didn't I get a x-mas card?" she asked.  I responded "Because mom, I want off of your list".  Mom made such a big deal about it and she send me one regardless and kept sending me one even though I begged her to stop.  She believed that with her persistence I would start sending x-mas cards again.  Well, she was wrong and I will say that I haven't sent a x-mas card in over 20 years now, unless it's to my daughter with money or gift cards.  I got my last x-mas card from mom, last year and now I wish I had kept it.
With the x-mas season upon us I have just one x-mas wish.  I hope mom stays with us for even just one more x-mas.  It won't be the same, nothing will ever be the same, but as long as she's here, I'll be happy with that.

Mom's new slippers.

The Dementia Diary: Teach your children well

The Dementia Diary: Teach your children well: I'm not the only caregiver who is a child of a resident.  I might be the only one who goes everyday to feed my mom but there are other child...

Teach your children well

I'm not the only caregiver who is a child of a resident.  I might be the only one who goes everyday to feed my mom but there are other children who regularly come to care for their parent.  Two sisters share the responsibility and divide the visits between themselves.  They come to care for both of their parents who are living in different areas of the facility.  It's very touching really as they have a private support worker who also comes in every dinner hour and transports their mother over to their father's wing so that their parents can eat dinner together every night.  Many residents have children that come every couple weeks or so and sadly, some residents have no family or children left to come and visit them.
The 'kids of care', as I call us, are often feeding our parent at the same table.  Of course we chit chat about our lives but we also use that opportunity to compare notes about our parents and compare notes about the standards of care that our parents are receiving.  One thing is very common between us, we all feel that the standard of care could be better and we also have a tendency to complain to management if we feel the need to.  The administration staff know us all on a first name basis.  It's not that the facility is lacking, in fact honestly, I couldn't ask for better.  It's because they are our parents and we insist that they receive the highest quality of care, even more.  Because of that  we have a tendency to bitch about things that in the scheme of things, are trivial.  We do it because that's what our parents did for us.  My mother defended me, went to bat for me and always made sure that whatever need I had, was met.  I am doing the same for her.
When my daughter was visiting last month I watched her care for her grandmother and it warmed my heart.  While she was feeding mom, and a little bit shaky, I told that she needs the practice as she might be feeding me some day.  Dylan looked at me and said "Mom, I won't put you in home".
I later thought about that statement and realized how many times I had said the same thing to my mom.  Sometimes it was said in reassurance and other times it was said jokingly "No mom, I won't  put you in a home because you'll probably out live us all".  There was also times in anger where I said "Mom, smarten up, someday I'll be caring for you and I'll reserve a room at the home for you if you don't stop".   I didn't know of the foreshadowing in my statement.  The fact is that many people my age are facing this dilemma.  They watch as the health of their parents deteriorates or they hear the diagnosis of dementia and they have to then stop joking about it and really think about it.  Families with an ailing parent need to sit down and start making plans for the future care of their parents.  From experience I can say that it's not as easy as you think and services aren't as accessible as they should be.  You can't just phone an extended care facility and make a reservation.  The wait times for admission are getting longer and longer and anyone whose future includes caring for an ailing parent needs to get a plan in place now.  Failing to plan is planning to fail and we can't fail our parents.
Ryley asks about his grandma all the time.  He recently asked if she was going to die.  It's not something that you can candy coat for kids when they ask something like that so I was honest and I said "Eventually she will but eventually all of us will".  He also asked if I'm going to get sick like grandma has.  Again, it wasn't something I could candy coat so I was honest and said "I might Ryley, I really don't know but that is years and years in the future and you don't need to think about such things now."  Ryley smiled and said "I know mom, but I want you know that you don't need to worry, I'll take of you just like you take care of grandma".
I hugged him closely and I choked back the tears.  I am proud of myself and confident in the decision I made to come home.  It helped me to teach my children well because my mom taught me well.

The Dementia Diary: A history lesson

The Dementia Diary: A history lesson: The word dementia is a Latin word meaning without mind.    For centuries the word was used to describe madness or mental illnesses and even ...

A history lesson

The word dementia is a Latin word meaning without mind.    For centuries the word was used to describe madness or mental illnesses and even mental handicaps.  It makes me think that dementia, in the use that it is today, has in fact been around for a very long time.  The simple fact that up until the 19th century, most people did not live to see 65, let alone 75 or 85, is probably the only reason why it wasn't as prevalent throughout history.  Oddly, one form of dementia was very prevalent until the creation of Penicillin.  That well known type of dementia was seen in royalty and commoners alike.  Syphilitic dementia, caused by the untreated sexually transmitted disease, was very common and many famous people suffered from it.  People like Christopher Columbus,  Napoleon, Al Capone and my favourite George Washington, all suffered and eventually died from complications of Syphilitic dementia.
It's sad really because historically, those who suffered with dementia were put into insane asylums or essentially left to die.  Luckily because of plagues and flu's etc, many didn't live to develop dementia.  Dr. Alois Alzheimer was a German doctor who worked in an asylum.  He followed many patients who had been admitted with 'madness' and who's madness developed other physical characteristics, like incontinence and the inability to walk or talk.  When a 51 year old woman that he had be following passed away he did an autopsy on her brain and discovered that the cerebral cortex was covered in what her termed as 'plaque'.
He presented his findings to his colleagues who really weren't that interested.  Yet he continued his research until his death at age 51.  He would never know the importance of his discovery or the illness that would bear his name.
In 1995 the neurology department in Munich discovered the slides and research papers  that Dr. Alzheimer had collected.  With modern technology they determined the importance of what he had documented.  The slides he had of many patients showed the progression of the disease and labelled what symptoms were present in the patient at their time of death and since the doctor had patients in the same family, it showed the genetic possibilities.  The same research that Dr. Alzheimer conducted between 1905 and 1916 was not studied again until 1976.  If only war had not broken out and had any university shown interest in his research, then perhaps our knowledge and advancement of dementia would be so much greater than what it is today.
Mom had another visitor, her second cousin Dwight.  Dwight took over from where my late great aunt had in her tracing of my grandmother's family tree.  With technology and the memory of many relatives he has successfully traced the roots of the Deck family all the way back to Kaspar and Franziska Dek, the year 1760.  I was astonished with the information that he had compiled and put into an individual binder, specific to my grandmother, Agatha.  Kaspar was born in Alsace, France.  Because of war, famine and whatever at the time, he settled in a village outside of Odessa, Russia.  Kaspar had 7 children and they all lived to grow their own families.  Today, you can find Deck that descended from Kaspar everywhere from Argentina, to South Dakota, to Russia, to Germany and to Saskatchewan.
I asked Dwight about some of the information that he had discovered.   As I child when my grandparents and my relatives wanted to discuss something that small ears shouldn't hear, they would speak in German.  It didn't work, we knew enough to figure out the just of the conversations.  One thing I remember was my great uncle Peter and how he, in his later years had developed some sort of 'mental' problem.  I was very young when he died and I don't remember him.  Knowing that dementia and mental illness can be hereditary I asked Dwight if he uncovered anything about dementia and mental illness.  He answered with a resounding "Oh my goodness yes!"
My great, great grandfather Peter had 5 sons with his first wife Annemarie.  When she died he remarried and had 4 more children with his second wife.  In all the generations that followed and only in Peters genetic line (none of his siblings genetic lines), there are writings and documentation of some sort of mental problem and not only in the women but in the men too.  Furthermore, those problems are only found in the families of the 5 sons that Peter Deck had with his first wife, none is found in the families of the children he had with his second wife.  At least two of his sons had some sort of known 'mental' problem.   One of them blew a load of money and on a whim moved to Argentina (very bi-polar behaviour).  The next generation showed some mental health issues in the form of depression.    One of Peter's and Annemarie's sons was of course named Peter and he married Lucia Herzog and one of their 13 children was my grandmother Agatha, who begot Elaine, who begot me.  As absurd as this seems, I was relieved to hear that information.  That means that the dementia isn't just striking the women in the family but also the men.  Something else that he discovered is that 'mental' problems were very prevalent in the older generations of the family appear to lessen with each generation both in the degree of illness and the number of family members afflicted.  Maybe I won't develop dementia and it's very likely that my kids won't either. 
Just 4 days ago researchers found the genetic link to dementia.  In a few years there will be a test that family members can take to see if they have the genetic markers.  Based on my family history, I'll be first in line for that DNA test.

Dr. Alois Alzheimer