The Dementia Diary: Up and down like a toilet seat

The Dementia Diary: Up and down like a toilet seat: Mom had drumming this morning.  Like most of the residents, mom enjoys it.  They use maraca's, shakers, a variety of drums and the spoons in...

Up and down like a toilet seat

Mom had drumming this morning.  Like most of the residents, mom enjoys it.  They use maraca's, shakers, a variety of drums and the spoons instruments that my dad makes.  After a drum circle all the residents are more coherent and less agitated.  The drum circle is always before lunch so it makes the mealtime with mom that much more enjoyable because I know, she will be there not just in body but in mind too.
Lunch today was no different.  Mom ate (drank) her lunch and we were able to partake in simple table talk but it qualifies as a conversation all the same.  We talked about her card from Rosalie, and old friend.  Rosalie recently had a driving assessment and she is no longer able to drive.  That can be a big issue for many seniors as it makes them even less independent and it can be difficult for a senior who has driven for 50 or more years to make that sudden change.  I asked mom if she missed driving and she said no but she also said she missed Rosalie and in a roundabout way said Rosalie can't come to visit.  I asked mom what she did miss and she answered "Going out".
The facility has an outing at least once a week.  Some might be to the casino, some are for shopping and some are for coffee and pie in the country and those mom could go on and would enjoy.  I went to the rec people as asked that my mom be included in the next coffee and pie outing or something along that line.  They agreed to and providing that on the day of the excursion, that she is up to it, her and I will go.  She'll like that and I'm sure I will too.
I had some errands to do and mom had nothing on her agenda so I left for a couple hours to do some much needed self-care.  Nothing like a good massage to ease a person of anything that ails them.  I was hoping to completely relax and lose myself for 45 minutes and instead I found myself asking the massage therapist if massage would be beneficial to dementia patients.  A discussion ensued and I learnt about all benefits that many types of massage would have for dementia patients.  I mentioned to him how just a few weeks ago I saw how a simple soak in warm water and a hand massage afterwards eased my mother's hand tremors and he recommended doing that daily if possible and also mentioned that it will help with her edema in her hands.
He told me how a foot massage would do the same and would ease agitation or anxiety and that it will also help with the edema in her feet.  I have almond oil that I massage my knee with but he recommended something with lavender in it and before I left, I bought some for mom.
When I returned to the facility and to mom she had that look.  It's a look that I have come to despise.  It's the look of a deer in the headlights where her eyes are big and she is watching everything around her.  It's the look that tells me she isn't there.  She wasn't.
When she isn't there mom is more alert than in the past and will still communicate quite well.  I slowly approached her and said "Hi, mom".  She immediately asked who I was and I told her that my name is Lisa and I'm her daughter.  She then told me that she doesn't have a daughter.  I told her that she does have a daughter and I am her daughter.  She told me again that she doesn't have a daughter and was starting to get more agitated.  I could see that she was anxious so I wheeled her into her room and armed with lavender oil that I had just purchased, I asked if she would let me massage her hands.  She agreed and I gently massaged her hands.  After 5 minutes her tremors were gone and she was more relaxed.
Now, I'm not a feet person.  I don't like people touching my feet and I especially don't like touching other peoples feet.   In fact, I don't like feet touching me on a couch or in a bed and not even my kids feet do I let touch me.  Regardless,  I asked mom if she wouldn't let me massage her feet and she said yes.  So, I removed the snoozies I bought for her on Saturday and warmed the oil by rubbing my hands.  With what I'm sure was a grimace of my face I proceeded to massage mom's left foot just as the massage therapist had described.  Gently with my thumbs in the sole of the foot and then individually on each toe and in between the toes.  I then massaged the right foot in the same manner.  By the end mom was calm. It didn't bring her cognitive abilities back, but at least she was calm.  She said "Thank you nurse" and throughout the dinner hour and even when I said good night, I was her nurse, not her daughter, but her nurse.
The Lewy-body dementia that mom suffers from differs from Alzheimer's.  The main difference is that patients like my mom will have striking fluctuations in their cognitive performance, especially early on and in the end stages.  An end stage Alzheimers patient will gradually lose their cognitive abilities and once they are gone, they don't come back.  When they lose the ability to talk, they don't anymore and once they don't recognize people, they usually never do again.  An end stage Lewy-body patient will have fluctuations like I describe, where in the morning she is fine but a few hours later she isn't and sometimes she will go into a mute stupor.   When her mind is working I let myself believe sometimes that she is getting better and I shouldn't do that because only hours later she isn't and my heart sinks again.  There are days when I wish that she had just plain Alzheimers because then at least I would know what I'm in for everyday and there would be no changes and no surprises.  But when I think like that I always correct myself because with the Lewy-body at least I still get glimpses of my mom and who she was and who she still is.  Either way I could really do without the up and down like a toilet seat.  It's very draining and some days I wish I could just flush it all away.

The Dementia Diary: Is it half full or half empty

The Dementia Diary: Is it half full or half empty: Mom has had a lot of visitors in the last couple days.  My aunt and uncle and many family friends and course me and dad.  Everyone agrees ju...

Is it half full or half empty

Mom has had a lot of visitors in the last couple days.  My aunt and uncle and many family friends and course me and dad.  Everyone agrees just how much more alert she is.  Mom is actually following conversations and able to put her two bits in.  She isn't simply parroting what she hears, she is getting it and participating in her surroundings the best she can.  It isn't complete sentences and most times off topic regardless  the simple glimpses of her that I was getting are now hours again and I love it, I absolutely love it.   She still is still sundowning and yes she will still parrot but when she is there, she's really there and she lets me know it.  Mom has attitude again and for a couple hours, it's just like old times.
The other day she remembered that she was a smoker and said "Get me a cigarette".  I reminded her that she doesn't smoke and she said with anger "Yes I do!!" and for a minute we were arguing back and forth. All the time I was thinking that I have my mother back.  Another day she said "I'm constipated," and demanded that I get her the all mighty orange juice (read an earlier blog to understand this).  Yesterday at lunch, while I was busy helping Evelyn eat her ice cream, mom slowly moved her hand and I helped her to grab the spoon.  She wanted the ice cream that was in front of her and as I fed Evelyn, I watched as mom tried to hard to use the spoon.  Sadly, she threw it down in frustration because physically she isn't better and she is well aware of that too.
I was also hoping that physically she would improve.  I tested that with minced food, praying that she would swallow and that the connection had returned, it hasn't.  Yes, she can swallow liquids but even puree must be chased with a drink of water from a straw.  The ice cream melts to liquid so at least she can still enjoy that.  Her hands and her body still tremble and her muscles are rigid.  She still can't walk.  She still can't use her hands. She still can't dress herself.  She still must rely on everyone around her.  She is still incontinent and she still cries her very sad tears.
Yesterday afternoon dad and I had lunch with my aunt and uncle.  Mom had music therapy so we left her in the capable hands of the staff.  I returned at dinner and in between sips I asked her how music therapy was.  Mom told me that she didn't go and I asked why not.  Mom looked right at me and said "Lisa, I won't get better".  She has said that before but it was the way she said it that struck me.  It was like she was saying, "Lisa, face it, I'm not going to get better and music therapy isn't going to make me better".  I asked what she did instead and she told me "I watched TV and wet my pants".  Again, it wasn't what she said that had me surprised, it was the flippant tone she said it with and look in her eyes, as if she said "Well, I wasn't running a marathon,  I watched an old movie to get my mind off of things and then I pissed my pants because I wear diapers, really for someone so smart, you can really be stupid". 
I am not a is the glass half full or half empty person.  Instead, my thoughts are, whose thirsty.  That's how I have to be with this too.  Is her mind half full or half empty, it doesn't matter.  I will drink up every thought and every moment that I have.  Good or bad, happy or sad, I'll drink it in.

The Dementia Diary: Mom's brain must be one in a million

The Dementia Diary: 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 time...

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

The Dementia Diary: The Broda chairs are a sign

The Dementia Diary: The Broda chairs are a sign: Since I moved back home and started care giving for mom, 3 residents have passed on her wing.   Another dear soul slipped away yesterday mor...

The Broda chairs are a sign

Since I moved back home and started care giving for mom, 3 residents have passed on her wing.   Another dear soul slipped away yesterday morning.
The first resident I didn't really get to know as she passed only a few days after I got here.  Eddie, who I knew years ago and got to know again,  passed away two weeks ago and yesterday Marie.  Like with Eddie it was just two days ago that I helped her with her bib and got her some juice and coffee.  She seemed fine.  That's the thing, I'm there every day and they all seem fine to me.  I am forgetting the reality and the reality is that those on mom's wing, her neighbours, her dinner companions, her new friends and mom well they are all at the end stage of their dementia and at the end stage of their lives.  Death can come very quickly and at any time.
When a resident passes their room is cleaned and all of their personal items are collected.  The families come and thank the staff and say their good byes to the other residents that they too have come to know.  Often the families will donate to the facility, the walker or the wheel chair or even the specialized bed.  They are grateful for the staff and the centre for giving the best care they could in the last days of their loved ones life.  They also know that the items they donate will be used by another resident.
I know the residents are aware when someone passes because I see them feel grief.  Olga was very sad yesterday because Marie sat at her dinner table and the empty space across from her forced her to look at her own mortality.   Some days Robbie still gets me to fetch a cup of coffee for Eddie and then he remembers that Eddie is gone and I see the sadness in his face. 
Within in days the empty spaces are filled with a new resident.  Sometimes a resident from another wing is moved to the end stage wing and sometimes the resident is new.  I watch the families of the new residents because they are just like I was many, many weeks ago.  The wing is a bit shocking at first.  As I have mentioned there are over 200 different types of dementia.  Alzheimer's is the most prevalent and roughly 67% of dementia patients have Alzheimer's.  Dementia presents itself differently in each resident.  Some can walk but not talk.  Some can talk but not walk.  Some grunt or make strange sounds, some rock back and forth or repeat the same sentence over and over and over.  It can be a bit overwhelming at first.  You can see it in the eyes of a new residents family member.  They are thinking "Will this happen to my father, is this how it will progress?"  It's a look of fear and a look of emotional pain.
In my time at mom's home I've noticed lots of changes and not just new residents.  Some residents who were walking just weeks ago now need a walker or a wheel chair.  Some residents who very alert and talkative are now quiet and often sleeping.  Some residents who only weeks ago were eating on their own are now in need of prompting to eat and at times require to be fed.  When someone asks mom how she is feeling so no longer answers that she is fine or good.  Now her response is "I'm won't get better".
But perhaps the most disturbing observation that I have made is with the Broda chairs.  A Broda chair is a specialized wheel chair that is padded and it reclines and has a safety belt and it is for the non mobile residents like my mom.  What I'm noticing is the Broda chairs are like a Hertz only the body in them is still alive.  The three residents that have passed away in the last while were all in Broda chairs, my mom is in a Broda chair.  I don't think it's coincidence, I think it's a sign, the coming of the end.

The Dementia Diary: Wake up everyone

The Dementia Diary: Wake up everyone: My mother is a very caring and giving person.  If someone needed help of any sort, she would help.  Mom knew what it was like being poor and...

Wake up everyone

My mother is a very caring and giving person.  If someone needed help of any sort, she would help.  Mom knew what it was like being poor and going hungry so wherever and however she could help, she would.  Mom to this day has half a dozen 'foster kids' all over the world.  Even month money is automatically withdrawn from her account to help these 'foster kids' and she kept every card or letter they ever sent.  The funny thing is, her first foster kid is older than me, but he still gets twelve bucks a month.  Regardless, compassionate is a trait my mother had and one she made sure her children had too and we do.
Just the other day one of the residents asked about my brother Doug.  She was touched by him when he visited last month.  Marg doesn't get a lot of visitors and while Doug was here, he made a point of sitting and chatting with her everyday.  She said she was awed when she watched Doug carry mom in his arms down the hall and out to his car and that she will take the memory of that love and compassionate with her when it's her time.  She also told me that my mother is proud of us and even though she can't say it, she is.
For many years I was very political.  But I realized that a party or politician representing them can't really make changes.  The citizens of the world must make the changes and since realizing that I try to make changes.  I have worked for so many non-profits both as a volunteer and paid and it has given so much satisfaction in my life and in my career.  Most of the people I know, I've met through my work or volunteering with a variety of organizations.  So, my new cause is dementia awareness.
Over the past year I have been educating and educated about dementia.  So many people think that dementia is a normal process of ageing and that it's nothing more than forgetfulness.  It's not.  People die from dementia and it is a hell of a lot more than forgetfulness.  Forgetfulness is normal in ageing, dementia isn't.
I started looking at statistics and the information that I have gathered through researching and talking to people is shocking.  There are roughly 40,000 people in Alberta with some form of dementia.  Roughly, because many are at present undiagnosed.  In Canada there are 747,000 people with dementia or some cognitive impairment that will lead to dementia.  Worldwide there are 35.6 million people living with dementia.   Our world is a different world and people are living much longer than they did even 30 years ago.  For this reason and others, the numbers of people with dementia is continuing to rise at an astronomical rate.  The World Health Organization did a international study, the first, just this year and because of that study they have deemed the rising rates in dementia a public health priority.  Worldwide there is a new diagnosis of dementia every 4 seconds.   So, what does that mean in Canada.  That means that by 2030, in just 18 years there will be about 1.5 million Canadians with dementia.
Experience has taught me that numbers of people don't shock anyone anymore.  But what will shock most people is money especially us Canadians with our wonderful health care system.  Unfortunately our health care system isn't equipped to deal with dementia.  Studies done by the Alzheimer's Society of Canada, just this past September, show that the direct cost of dementia (meaning doctors, facility expansion, health care workers, etc, etc) combined with the indirect costs (meaning lost wages of care givers like myself) is already 33 BILLION dollars a year.  Do the math, by 2030 that will be over 200 BILLION dollars a year.  Just to put it in perspective, the direct costs and indirect costs for cancer will be 177 BILLION.
When I discussed this with a friend of mine, she said "Well, the government will have to build more facilities".
That is not an answer because this country doesn't have the money to build the amount of facilities needed to accommodate over a million people with dementia.  The extended care facilities that we have now in this country can't accommodate the demand already and by 2030 it will be worse. There are 97 extended care facilities in Alberta that house and care for about 14,000 patients with end stage dementia.  Where are the other 26,000 Albertans who WILL need extended care or are already in need of extended care.  Chances are a family member is caring for them.
What is even more frightening for anyone between 35-50 is it is our parents currently in the facilities or at greater risk of developing dementia.  Many of the mothers (67% of dementia patients are women) didn't work so their old age pension is the bare minimum and won't cover the expenses of extended care.  Which means that my generation will have to quit working to care for their parent or parents or work harder to pay for a facility. Then factor in that those of us under the age of 50 will not get old age pension because it won't exist anymore and if any of us in this age group develop dementia, who will care for us when we don't have the money for an extended care facility or while we wait for a bed in a facility.
When I look at this on a personal level, I get scared and I get angry.  I was told by a specialist that it is probable that I will develop dementia.  I don't have stats for the probability but I do have to think about it.  I can hope and pray that I don't develop it.  I can hope and pray that my kids marry rich or have lucrative careers.  My RRSP investments will cover some of the cost but not enough if I were to live 10 years in a facility and that means there will be no inheritance (except for my ashes) for my kids.
I've started to eat as much Omega-3's and fish and I possibly can.  I do what I can to keep my brain sharp.  I get plenty of rest.  I quit drinking and I will quit smoking (again).  I exercise and keep myself healthy.  I do what I can for preventative medicine.  These things I can do for myself and my kids and my grand kids but will there be a place for me to go in 30 years if and when I do need extended care.
Now, this gets me thinking differently.  Building facilities isn't the solution.   There needs to be a national plan for dementia like in other countries (there isn't one in Canada).  More money needs to be put into research and prevention and early diagnosis and possible medications and a CURE.  There needs to be funding and assistance in place for families who have no choice but to become a care giver to a parent or a spouse or a sibling.  There needs to be training for family care givers and allowances for equipment requirements.  There needs to be a lot done in Canada or in 30 years we will all be walking around like zombies, with no one to help us.
Mom is lucky, she has a loving and financially smart husband.  She has a daughter who is more than willing to put her life on hold.  She is in a wonderful facility.  Yes, it is a terrible thing that is happening to her but it can happen to anyone and it can happen to you and it can happen to me.  In fact, our chances of developing dementia are greater than the chances of developing cancer.  So, wake up everyone and eat some blueberries for breakfast and fish for lunch.

 A few years ago there was an elderly couple in the States that committed suicide.  The wife had end stage dementia and the husband had been recently diagnosed with Alzheimer's.  They took their motorhome and went for a drive.  He shot his wife and then killed himself.  At the time I thought it so selfish of the husband to do such a thing.  However now that I have experienced first hand how dementia effects the loved ones and how a proud person must feel so helpless and lost.  I understand why he did it.  I don't condone it, but I get it.

The Dementia Diary: A day at the spa

The Dementia Diary: A day at the spa: One of the many things that always stays in my mind about my mom is her fingernails.  Mom was obsessed with her fingernails and keeping them...

A day at the spa

One of the many things that always stays in my mind about my mom is her fingernails.  Mom was obsessed with her fingernails and keeping them long.  Nature must have blessed her with a lot of biotin because her nails were rock solid, long and they never chipped.  She could open anything with her nails and if she sharpened them, I'm sure they could be used as a weapon.   Rarely would one break and she would freak right out because that meant she would have to trim down all the other nails and file and do the thing with the cuticles and then repaint with two coats and a top coat.  Needless to say, doing her nails was an entire night in front of the TV and a continuum of "Lisa-Marie, make me coffee or Lisa-Marie change the channel, I'm doing my nails," and I would have to stop everything I was doing because of her nails.  Why she never went for a manicure, I don't know, but she never did, she always did her own.  In every purse that she owned you could find two things, kleenex and a Emory board for filing her nails.  Always beside her chair you could find, clippers, a nail file, the cuticle thing and clear top coat.  For what ever reason, I don't know why, mom always stored her nail polishes in the refrigerator.  Instead of butter being in the door of the fridge, you would find a half dozen nail polishes, all different shades of brown and one red and one pastel pink  Oddly, she would always put on the red and then decide it was too loud and take it off and put on one of the shades of brown. Occasionally she would put on the pastel pink and then decide that she didn't like pink and take it off and put on one of the shades of brown.  Really, mom only wore brownish nail polish.
Another thing that stays in my mind is my mom's hair.  Her hair was so thick, like a horses mane.  In order to keep it that way mom would spend a lot of money on hair products, hair treatments, hair cuts and hair brushes.  She got her hair cut and styled faithfully every two weeks and a highlight or colour every six weeks. Her main hair dresser was Hans at Chez Monique in Banff and for over 25 years she was as faithful to him as she was to my dad.  Once in awhile Hans would be away or she couldn't get an appointment, and then and only then would she go to a different stylist and only when Hans retired 2 years ago did she stop seeing him.  She couldn't drive then but would make my dad drive her to Banff from Cochrane, in rain or snow, for her hair appointment.  At a hundred bucks a cut (Banff prices of course), Hans was able to retire on my mothers hair and the two centimetres that he would cut off every two weeks and whatever new hair product her could sell her.  Mom would buy whatever hair spray or shampoo or hair gloss and anything Hans recommended and it's funny how Hans never found one product that he liked enough to recommend over and over again.   Now this wasn't once every couple months, this was every two weeks and every two weeks mom would come back from her hair appointment with a new product that Hans recommended.  The cupboards under the bathroom sink in both bathrooms were full of hair products.  Hair gloss, pomade, volumizers, texturizers, waxes, gels, mousses, a dozen kinds of hair sprays, curling irons, flat irons, attachments for hair dryers and at least a dozen different kinds of shampoo and conditioners.  Seriously, if you needed a hair product, you could find it in one of the bathrooms.   My dad still has all of his hair and it's barely grey.  Dad never bought shampoo, he would always use whatever shampoo he could find under the sink.  It didn't matter what, hell dad would use dish soap if he had to because shampoo was all the same to him.  I often wonder if he still has all of his hair because for all those years he used quality women's shampoos.
Mom has apraxia.  Apraxia means that she has no real control of her body movements.  She can't use her hands and so she can't do her nails.  At the facility once every couple weeks volunteers come and will do a simple manicure for the residents who request it.  I requested it for my mom and so she had her first official manicure in an extended care facility.
Mom also suffers from tremors.  The tremors are mainly in her hands but on occasion her entire body will tremble and so will her head.   I didn't know if the volunteers would be able to do a manicure with her tremors, they said they will try.  They started by soaking moms hands in warm water and some foo foo stuff.  She was still a little shaky and a bit of water splashed but it was no big deal.  Then they did a hand massage with some exfoliant.  Moms hands trembled less.  They they rinsed her hands in warm water and did another hand massage with some cream.  By the end of the massage, the hand tremors had stopped and they were able to complete her manicure and polish her nails.  Mom really enjoyed it.
At the facility there is a hair stylist.  Mom has lost so much of her hair that I didn't think much could be done with it.  I find it sad really because she always had such thick, healthy hair and now there is nothing but thin wiry grey hair and  very little of it.  The stylist assured me that she could do something with her hair but it would hair to be after her bath when her hair is still wet.  Mom is in a Broda chair because she can't support her body.  The Broda is too big to allow the stylist to wash mom's hair in the sink so I arranged to take mom down for her hair appointment after her bath.  Again mom loved it.  There was no need for a cut but just getting it styled and curled seem to make really happy.  It's funny how things don't change.  When dad came later in the day he failed to notice mom's hair.  After 10 minutes of staring at him mom finally said "My hair," and dad looked and said "Oh yeah mother, it looks nice".
I try, I really try to find even little ways to make her life happier.  For an hour or two maybe she is but then the reality of the situation sinks in.  After dinner last night mom and I stayed in the dining room while I sipped a tea and we looked at the Avon Christmas book.  Then mom said "I won't get better".  I looked into her eyes and I cried "No mom, you won't get better this time".  She kept looking at me and then she started to cry.  "I want to be with Jackie and my dad," she said.  I knew what she meant and I said "Whenever you're ready mom we'll be here and you don't have to worry about anything, I'll make sure dad and the kids are always okay".  Mom looked intently into my eyes and said "I'm ready".

The Dementia Diary: My heart is smiling

The Dementia Diary: My heart is smiling: When my brothers left home, I was just a kid.  First Doug left and then David.  I felt abandoned because they left me, just a kid, to deal w...

My heart is smiling

When my brothers left home, I was just a kid.  First Doug left and then David.  I felt abandoned because they left me, just a kid, to deal with mom and everything that went along with dealing with mom and for a kid, that was a lot.
Life with mom was never normal or easy.  Life with mom was interesting and challenging.  I can say that now but for many years, I couldn't.  I spent the first part of life and childhood doing every thing I could to please her, to get that cup of love from her and to keep her sane.  It never worked, she would always have a psychotic episode and end up in the hospital.  So I never felt that what I did or accomplished was good enough for her and then I twisted that to mean that she doesn't love me.
By the time I was a teenager full of the normal teenage angst, I stopped chasing that cup of love, that I never did get.  I became resentful, bitter and angry, so the next 15 years were spent trying to hate her.  But I could never really hate her either.
At some point I realized that the resent and bitterness served no purpose what so ever and I became accepting of my mother and the person she was.  I looked at it like this, I loved my mother and I really didn't like her but I certainly didn't need to hate her or even try to hate her, because I just couldn't.  Even with all the crap that she pulled, I couldn't hold it against her and I always forgave her, just like she always forgave me.
Being home again and with mom everyday is one of the best decisions I've ever made and not only for mom and dad but for me too.  Suddenly I have been able to look back in time and look at the times with my mother and smile, yes I smile from my heart.  Now I'm seeing that the best thing that happened was my older brothers leaving the nest.  Why, because then it was just me and mom.  Now mom could be not a bit of a controlaholic but a lot of a controlaholic, and looking back, that's wasn't such a bad thing after all.  I can still do plies and petit jetes because she forced me to take ballet and I love going to the ballet to this day.  She forced me to into figure skating but I can skate so well that I was able to teach my kids and I play hockey and appreciate winter sports. She forced me into Jr. Forest Wardens but dammit, I learnt how to camp, light a fire without matches, use a compass, build a lean-to and I'm pretty sure I could do well on Survivor.  I hated music lessons but I can read music and appreciate music and I made sure that my kids do too and my daughter is a very talented musician.  
Mom liked to travel and to get it out my childhood system she took me to both Disneyland and Disney world.   Now, I did not want to go to Britain, mom forced me and I pretended to hate it but Stone hedge was cool as was everything else we saw.  Pearl Harbour didn't really appeal to me but I'm so glad she forced me on that tour because I learnt so much history in one day.  Thanks to mom I know that Mexico is more than tacos and Spain is still one of my favourite places in the world.  Asia, England, Greece, Spain, Hawaii, Mexico and the States were all stamps in my passport by the time I was 13 and that wanderlust stayed with me.  Thanks to mom, half of my bucket list is complete and at a young age I started to view the entire world as my home and not just Canmore.  She planted in me a global awareness that formed who I am.
When mom was sick, it wasn't good.  I had to tend to myself and do many things my self.  I think the term they use today is 'parentified' and everyone, family or friends would always say that Lisa-Marie is 12 going on 30.  I don't think that's a bad thing anymore.  Dammit I'm a strong woman and I was strong young woman and a strong girl and that is thanks to my mom and I'm glad I am.
I owe you mom, I owe you a lot.  So thanks, thank you from the bottom of my smiling heart.

The Dementia Diary: Just what I needed

The Dementia Diary: Just what I needed: I had an absolutely fabulous time away,  I cannot lie.  Yes, if the phone rang, my heart stopped a bit and I worried that the staff wouldn't...

Just what I needed

I had an absolutely fabulous time away,  I cannot lie.  Yes, if the phone rang, my heart stopped a bit and I worried that the staff wouldn't feed mom properly, but otherwise, I had a great getaway.
I returned last night and of course the first place I went was to see mom.  The look on her face said it all, her eyes brighten up and she said "You were gone."  The staff told me that she asked about me a couple times and so did Evelyn and Olga and Violet and Bob.   Evelyn said "You left without me," as she thought I had taken the train we were scheduled to take together.  I told her she didn't miss anything and that it broke down and we were stranded for 2 days.  When Robbie saw me he wheeled himself over and grabbed my hand as if to say "Welcome back, I missed you."  It felt really good to know that presence on the ward is appreciated and even better that even with their addled minds, some of residents have emblazoned me in their memories.
The time away was just what I needed and I'm so very glad that I moved back home.  Time in nature, communing with the trees, the water, the mountains and all the creatures that call it home forces me to see the simple loveliness in this world.  When it's in your face, you can't deny it.  The crisp air as it bites at your nose.   The trickle of water as it makes its path in the world.  The majesty of the mountains and the hard beauty they display.  The trees glistening with hoar frost.  The mule deer staring at me while she rested.  The ram who grunted "Leave me alone," when I got near and ran off to find a more desolate spot.  The woodpecker who was too busy to notice me.  Add friends and family and food to the mix and you have a fantabulous 3 days. 
I had times like this with mom.  Mom liked to walk and hike.  She liked to walk by the river and stop and listen to sounds.  Sometimes she would throw rocks into the water and sometimes she would just sit on the riverbanks and enjoy the beauty that this world offered her.   We hiked Mt. Assiniboine, Yamunska, Lady Macdonald, Stanely Glacier and Marble and Johnson Canyons, just to name a few.  It was during these hikes that we had our best arguments, sometimes so loud that the animals would run off and birds in the trees would fly off.  I would bolt ahead and would scream from a distance.  But in nature we would always come to a compromise and the issue would be resolved for now.
It  hurts my heart that mom couldn't join us this weekend.   It hurts my heart that she'll never be able to hike or walk with me again.  But, I'm so grateful that we had those treks together and were always able to put aside our differences and see the peace and beauty in the world.  Today I'll take outside and at least let her feel the crisp, cool air and watch the sunlight dance on the snow.  That's the best I can do.

A bit of respite

It was recommended to me by other caregivers and staff and the facility that after 7 weeks of being there everyday, that perhaps I might take some time to myself.  I was against the idea.  I felt guilty even thinking about it.  It made me anxious thinking that something could happen while I was away.  Then Audrey, who has been caring for her husband for 7 years, told me that caregivers will burn out.  Most of the caregivers are considerably older then I am, but still it could happen.  So, with much prodding I am taking a couple days off from care giving and will spend it with friends and family.  I hope mom will be all right.  The staff assured me that they will take good care of her.  They have my number in case of emergency
Wow, the child really is the parent now.

The Dementia Diary: The daily rollercoaster ride

The Dementia Diary: The daily rollercoaster ride: Everyday I go through the full gamut of emotions.  Happy, sad, angry, indifferent and even numb and sometimes even all of these at once.  Wh...

The daily rollercoaster ride

Everyday I go through the full gamut of emotions.  Happy, sad, angry, indifferent and even numb and sometimes even all of these at once.  When mother is alert and in the present I am happy.  She will say something or be aware of the conversation and add her two bits in or she will read the news or enjoy the pages of a magazine or sing the words to a song and she knows who I am and who the nurses are and where she is.  I know she is there so I cherish those minutes or hours that's she is with me.  But also during these times I will get sad.  It is during these times that mom is maybe too aware.  She wants to say something but can't.  She wants to go for a walk but can't.  She wants be knitting or having coffee with a friend, but she can't.  She is well aware that she is peeing in a diaper and that her hands won't let her scratch her nose and that her back might be hurting but she can't tell anyone.  She'll watch the people who can and then she will cry.  So I cry too.  It is during the crying times that I sometimes hope that something in her mind will switch and she'll start sun downing and get lost in the voids in her brain, just so she won't cry.  Then I feel guilty for thinking that and then I get angry that the universe or God or whoever has allowed this to happen and then I get numb because there is nothing I can do to change the fact that my mother is dieing in a slow and cruel manner.
Just this past Sunday one of the residents of mom's ward passed away.  He and mom were both C1 status and although their dementia's were different, they were very much the same.  On Saturday night at dinner, I took Eddie his soup as he could still feed himself and swallow minced food.  He didn't talk but he grunted a thank-you and I put his bib on him.  Sometime in his sleep, he peaked a fever and was unresponsive in the morning.  The staff called his family and early Sunday afternoon he quietly and peacefully passed away.   He was a former chief of his reserve so they laid his body for viewing in one of the large rec rooms.  In the afternoon at least 300 hundred people from the reserve came to pay their respects.  I did too because I knew him and  two of his daughters, Eddie and Elsie had 11 kids, and I'm some of you reading this played hockey with his boys.
Robbie and Eddie were friends and I saw Robbie sitting solemnly in the dining area.  The two of them always ate together and everyday Robbie would come to me to get Eddie's coffee for him.   Robbie plays crib everyday and everyday he would have the staff go and get Eddie so that he could watch the game.   I went over to Robbie and I asked him if he would like to go and pay his respects.  He nodded yes and I wheeled him over to the rec room.  Robbie took his friends hand and sat for a moments and then he nodded and smiled at Eddie's body, as if they had just spoken some unheard words to each other.  Robbie then motioned me to take him back to the dining room and I did.  He grabbed my hand in his hands and as he cried he mouthed the words thank you.  I nodded and left him to his grief.  Robbie is 96 and has outlived so many people in his life including a wife and children.  As I walked towards mom's room I cried for Robbie because it must be terrible to slowly lose yourself AND the people around you. One of the workers asked how Robbie was and I told her.  Deneen told me that I need to be prepared and I asked why.  She said that it can happen that quick and they prefer that, a peaceful passing not one of infection and pain.  I went and said good night to mom.
The next day when I went to collect mom I noticed that her hands were swollen and her wedding ring was tight on her finger.  I used some cream and gently removed it.  I checked her feet and ankles and they too were swollen, so much so that I removed her socks.  I went and found the nurse practitioner and she too looked at the edema.  All she could say is that she would keep tabs on it and tell the workers to monitor it and not to put socks on if it continues and she rubbed my shoulder.  Mom is a C1 resident, so no intervention will be done.
Mom discovered at age 70 that she only has one kidney.  The woman had three kids, numerous surgeries and injuries but having one kidney was not noticed until she was 70.  Edema is one of the first signs of kidney failure.  I found it odd that only days after losing a resident, mom's kidney might be headed for failure.  Having worked with renal patients and the Kidney Foundation I have seen many people pass away from renal failure.  Many of the them by choice.  When the realize that they will never get a kidney transplant or they are told that they are no longer a candidate for transplant they choose to stop dialysis.  Many that I knew had been on dialysis for 7 or more years and they have no life being hooked up to a machine 3 to 5 times a week for 5 hours at a time.  Their disease is their life and they choose to go to a hospice for their remaining days and that's all it takes, days.  One guy I knew well, Bob was his name, and he called me and told me he was stopping dialysis as he had been removed from the transplant list.  He was going to the hospice the following day and he asked if I would bring him a couple packs of smokes and two bottles of Rye, things he wasn't allowed for many years.  I did and 5 days later Bob peacefully passed away.
So as I thought about it, I said to myself that if mom's kidney is starting to fail, that's a good thing because it is a pain-free and gentle death and I was pleased.  Then moments later I was angered because mom can't choose to stop dialysis today and pass away in 5 days and then I was sad because I'm really enjoying this time we have together.
Later in the day mom and I sat in the dining area and we looked at a magazine.  There was an article about the Mayan Caribbean.  I read it out loud to mom and she looked at the pictures.  She started to cry again.  Mom loved to travel and has been to the Mayan Caribbean many times.  I started to cry again.  I cried happy tears though because I've had some good times on holidays with mom.   We met some wonderful people and I have incredible memories.  Mom cried because she is sad, she knows she will travel again.  In that moment my tears changed to sad tears.  I cried because I realized I'll never travel ever again with mom.  I cried because I feel her pain.

          This is my finger with the wedding/anniversary ring that dad had made for mom. 

 

The Dementia Diary: My birthday wish

The Dementia Diary: My birthday wish: I was born in Saskatchewan, by accident.  Mom and dad had travelled with the boys out to my grandparents farm because I was due to arrive in...

My birthday wish

I was born in Saskatchewan, by accident.  Mom and dad had travelled with the boys out to my grandparents farm because I was due to arrive in December and they didn't want to travel with a newborn at x-mas.  Instead, they drove in November to have an early x-mas for my brothers.  On the drive back my dad clipped the ass end of a moose and that was that.  No one was hurt, except the car, but it put my mom into early labour.  Dad stayed with the car and my brothers and my mom was taken to the medical clinic in Swift Current, Saskatchewan by an old trucker who had stopped to help.  So, my actually birthday was quite the affair and my mom always made the birthdays that followed quite an affair too.
Everyone from the 'real' Canmore (I won't refer to it as 'old' Canmore anymore) will remember their childhood birthdays because they were fun.  My mom always made chocolate cake, from scratch with vanilla butter cream icing.  She would wrap dimes, and quarters in parchment paper, not wax paper, and she always put a lot in the cake batter so that every kid at the party would get some money, except Mike Eklof who was allergic to chocolate and she would give him a piece of pie and make sure that a quarter was stuffed in it too.
I'm sure some of you remember how we would all 'dress' for a birthday party, or at least us girls did.  I was such a tomboy and I hated wearing dresses and mom knew that but that didn't stop her.  Every year, the weekend before my birthday party off to Calgary we would go to Sears at North hill mall to buy a new party dress and a new pair of Buster Brown shoes. She would always pick the frilliest, girliest dress she could find and they were always uncomfortable. I would debut the dress at my party and then I would be forced to wear to every party I was invited to through out the following year.  That thankfully stopped at age 11. 
We would play fun inside games because usually by November, there was snow on the ground.  Mom would make dad rearrange the furniture so we had room to play.   She would boil up eggs for the egg races.  We would race with eggs in teaspoons (not tablespoons because my mom liked to challenge us) and later do a race where he had to roll them on the carpet with our noses (Again, she had to make it challenging,  in the normal game an orange would be used).  The clothespin drop was always fun.  We had mason jars and  each of us was given 10 clothespins and whoever dropped the most into their mason jar, won.  Pin the tail on the donkey of course and I can never forget, musical chairs to who else, but Elvis Presley and mom would dance.
Mom never made hot dogs.  I think it's German thing but because they weren't real sausage, she would never serve them.  Mom always made sandwiches, finger sandwiches with the crusts cut off, I guess to make it elegant, yes Bologna can be elegant.  She would also mix a jar of Cheese Whiz with a can of pineapple bits, well drained and make a sandwich spread, they were great and I still make them on occasion.  Another sandwich spread she would make is devilled ham, mixed with mayo, diced bits of cheese, green onion and a bit of hot mustard and it was tasty, tasty.  I don't know where she got these recipes or if she invented them but the sandwiches served with homemade pickles and potato chips were always a hit.  So was her punch.  Every year she would bring out her crystal punch bowl and mix ginger ale, grape juice, raspberry juice and a container of frozen raspberries.  It was lovely but us kids never got to use the crystal punch tea cups, but mom always bought the little paper punch cups that had handles, again I guess to make it more elegant.
Thanks to Kurtis, Tyrone and Trent Auger, Doug Swift, Richard Chapelow, Lana Riva, Sasha Lowther, Mike Eklof, the late Danny Leblanc, Karen Saunders, Tara and Cory Manning, Colleen Mironuck, Laura Smith,  and any others that I've forgotten for some great parties and gifts.  Thank you mom for always making my birthday special.
My birthday November 6, 2011 was the last birthday that I got a card and a gift from my mom.  I always keep the birthday cards from her and my kids.  In it she wrote 'Be thankful for the difficult times, it is during these times that you grow'.  Mom always knew what I needed to hear.  It also included a 200.00 gift certificate and a note, 'Go and buy yourself a new party dress and some shoes' ( every year since I left home, that's what she sent me for my birthday).
I know that this will be the last birthday I spend with my mother.  Instead of shopping and partying I'm going to spend it with my mom.  When I blow out the candles on my cake I will make a wish.  It won't be a wish to make her dementia go away because I know that wish will never come true.  My birthday wish will be that when the time comes that she goes in comfort, with grace and style, with no regrets and mostly that she go peacefully. 

The Dementia Diary: Blinded by love

The Dementia Diary: Blinded by love: Many people have pm'd me on Facebook and or sent me e-mails praising me for what I am doing for and with my mother.  Thank you all because i...

Blinded by love

Many people have pm'd me on Facebook and or sent me e-mails praising me for what I am doing for and with my mother.  Thank you all because it helps to keep me upbeat.  But the real praise should go to my father because life with mom was always, shall I say interesting.  Many of you know why.  Many of you know that long before the dementia  mom struggled with mental illness.  It's my father who was there every time she fell, to pick her back up.  And he's still there and he still picks her up. 
When dad married mom she was pregnant.  Some would say it was the times and that's what men when they got a girl pregnant.  I don't believe that.  I believe he genuinely loved her and he still does.  I asked him many, many years ago, as we waited in the ER of the Rockyview in Calgary for a bed in the psych ward, that if he knew then what he knows now, would he have still married mom.  Without any hesitation and a glaring look of surprise that I would even ask such a question, he answered a resounding "Yes."
What amazes me about my dad is that many men would have cut and run at the first psychotic episode, not my dad.   What amazes me even more is that most men would have cut and run at the second, third, fourth.....20th psychotic episode, not my dad.  My dad always believed that mom would get better and that some day a medication would be created that would help her even more and he was right.  Seraquil did wonders for my mom's mental health and they enjoyed many years together without a breakdown every few months.  Maybe it helped that all three kids were out of the house by then too but either way, it brought some semblence of normality to their retirement years and they had many good times together.
Dad kept mom at home for as long as he could.  He had some of the house refitted with devices for mom.  He built with his own hands a ramp so she could get in and out of the house.  He cooked for her, he helped her to the bathroom and did everything that she needed help with, everything.  Eventually though with a lot prompting from family and friends, dad made the hard decision to place mom in a care facility.  It was probably the hardest decision he has ever made.  Yet he still would bring her home on the weekends and unfortunately over a short time, that was no longer an option.
After that my dad went in to a depression.  It was obvious to everyone.  Whenever I would call he was emotional and often crying.  You see my dad has always been blinded by his love.  For years when mom would get psychotic or manic or depressed I would watch my dad try to get mom to take her medication.  He didn't want to ever take her to the psych ward because he knew what that meant.  It meant that someone from the family would have to come to help care for us kids or that he would have to ask a friend to take me into their home until mom was better.  But it also meant there would be ECT (shock treatments)  for mom and usually numerous ECT's and he hated them, we all did.  Everytime mom had those treatments she would lose a little bit of memory and I think dad was afraid that she would lose the memories of him and us kids.  Thankfully she never did.
With the dementia dad really believed that the doctors were wrong and that she would get better.  He again was blinded by his love and I know he really thought that she would snap out of it.   He watched as she continued to fade and he finally had to accept and realize that she wasn't going to ever get better and that she was going to get worse and that she will pass away.  That is another reason why I decided to move back to Alberta.  My mom needs me but my dad needs me too.
Everyday my dad goes to see mom.  He sits with her and watches tv, or he will take her for a walk to watch the fish and the birds and outside if it's not to cold, or he will sometimes go to music therapy or drumming with her.  He always does her laundry and he decided that homemade Borscht would be better for her than the soups they make at the facility, so he's breaking a rule and we are bringing in Borscht for her.  He cries when she remembers something but they are happy tears because sometimes he doesn't remember what she does and it makes him smile at the roses that he's getting in November.  We drove to Calgary in the first season snowstorm to get mom an orthopedic neck pillow because she needed one.  When mom needs cream or Kleenex's or lip balm or more socks, everything stops for dad and he does it.  Then again, he was always that way with mom.  Dad believed that if mother was happy, we would all be happy and he was right.  Perhaps he could be a little over indulgent with her, but, well he loved her.
I was recently asked why I have never married.  The answer is because I have yet to meet a man that is equal to my father.  He loves unconditionally, he is hard working, he is determined, he is faithful, he is enduring, he is accepting, he is a rock when you need it and has always been my mom's soft place to land when she fell.  Maybe I'll find that someday and I won't settle for anything less.  I want a man that can be blinded by love.