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.