A happy day at the home

The great thing about mom's new home is that regardless of residents health, they always recognize birthdays and anniversaries, even those of the caregivers and spouses.  So on this day a spouse of one of the residents turned 80.  If I look half as good as she does at 80, I'll be well pleased.  She keeps her hair in a current style and wears the trendiest clothes and never dresses like well, like an old woman.
Her husband developed Parkinson's years ago.  Parkinson's is also classified as a dementia.   For many years the Parkinson's was controlled by the regular medications but they stopped working.  They made the decision to move back to Alberta to be closer to their children.  Eventually the dementia started to set in and he was gradually going blind.  His wife noted that as the dementia got worse, the tremors of the Parkinson's got better.  She eventually made the decision to put him in extended care.  By then the tremors had stopped and he was incontinent and unable to get around, not only because he was now completely blind but also because of the dementia.  It just amazes me how it effects every single dementia patient I've met, totally differently. 
For the past 6 years his wife comes everyday and she has dinner with her husband every night.  She has watched him steadily slip away.  He does not speak at all, not even a grunt.  He does not move at all.  He has no expression, no emotion, nothing.  He does chew and swallow though and has only had one bout of pneumonia which didn't even require hospitalization.  She has been a great support to me and she gives great hugs.  She's told me about a caregiver support group that meets the last Thursday of every month.  I've never been one to rely upon others but I'm going to this time and will be at the meeting on Thursday.
Another milestone celebrated on this day was the 63rd wedding anniversary of Tony and Roseanna.  Roseanna is the youngest of 8 children and her father was the third Premiere of this great province of Alberta.  She is in her late 80's and has been in extended care for 3 years now.  She is one of the residents who requires tube feeding and Tony is there everyday by her side.  Theirs is a love story that we see in movies.
Roseanna was a nurse and during WW2 she volunteered to go overseas to Europe to help the troops.  Tony was an officer in the British army.  A bomb or grenade or something went off near him and he was injured and blinded.  Roseanna was his nurse and for a months he didn't know what she looked like but he was already falling in love with her.  Then his eyesight improved and he could see blurred images and it got clearer and clearer and with lens he could see again and when he saw her, he was even more smitten.  After the war they kept in touch and in 1948 he moved to Calgary to be near Roseanna.  They courted and married in 1949.   He became an engineer and Roseanna continued to nurse.  They raised 3 boys, one passed away just a few years ago of cancer and the other two visit as often as they can.  Tony told me that he hopes for many more years together.  She is his best friend and he will never leave her side, and he doesn't except to go to the bathroom or get a tea.  She nursed him and now he nurses her.
Mom cried today.  It could be real emotion or what's left of it, or it could be the dementia as many lose the ability to control emotion and have crying fits or angry outbursts or scream, etc, etc.  I asked her why she was crying.  Mom said "It hurts".  I asked her what hurts, is she in pain.  She could be in pain as dementia can cause neuropathy where patients actually feel pain when they are touched.  She didn't say, all she said was "It hurts" again and she kept crying.  I don't think she's in pain.  I think she's sad because she knows what happening to her and it must be horrible for her.  All I can do is try to make her time more bearable and that's what I'll keep doing.

The Dementia Diary: Is it backwards for forwards

The Dementia Diary: Is it backwards or forwards: Mom had more visitors today and that always brightens her eyes because in there somewhere she still has some long term memory.  Peter Grizan...

Is it backwards or forwards

Mom had more visitors today and that always brightens her eyes because in there somewhere she still has some long term memory.  Peter and Mary-ann  and her daughter came to see mom today.
Some would remember them from 4th street in Canmore.  They lived beside Mrs. Wamboldt in a blue and white little house with a big garden in the back, that we never raided because their dad was a curmudgeon and we were all too scared.  Their Uncle John lived further up 4th beside the late and great Maureen Brass (I miss her dearly).  John was a nice fellow but his brother was just miserable.
Mary-ann would babysit me often and sometimes make sure I got to school okay.  Peter, well Peter was like a third brother.  He was always at our house and usually around dinner time.  Him and David could always be found in the TV room arguing over a hockey game or the Atari game 'Pong'.  How people could find a reason to argue over a blip and two lines as goalies, no rules, no graphics, well I don't know but it would almost come to fist and cuffs sometimes and mom would then send Peter home.  Peter has kept in touch with me over the years but he hadn't seen mom since their uncle's funeral 12 years ago.
Mom perked right up when she saw Peter but you could see her struggle to remember Mary-ann and she called her daughter Dylan although there is no resemblance between the two.  Still mom even said 'Peter' when he asked if she remembered him.  Like I mentioned, he practically lived at our house for many years so of course she would remember him.  Peter always knew how to keep mom's demons at bay and he was great at calming her down when she got riled.  He had a gift and there were often times when we would say, "Peter, go upstairs and talk to mom, she's ranting" and he would.  The trick he had was to listen and agree.  The boys and I tended to argue and interrupt, but Pete would nod and agree, even if he didn't.  My dad always liked him too.  Peter always had an interest in politics and world affairs.  Where Doug was more interested in girls and fashion and David was always wrapped up in sports and I was too young, Peter was well versed so when he stayed for dinner (which was at least 4 days a week) my dad always had someone to have dinner conversation with.  Pete was a good addition to the family.
The Grizans are having their own struggles with dementia as their mother suffers with it.  Mary-ann is a nurse so she stays home to care for her.  Her house has been fitted with everything from a lift to a ramp and Mary-ann takes care of her mom, 7 days a week.  Their mother isn't end stage, yet, but she has had numerous bouts of pneumonia and severe UTI's and was hospitalised regularly because of it.  One of the reasons Mary-ann came to visit is that she wanted to see what extended care facilities have to offer as she realizes that although she is qualified to care for her mother, a time will come when she can't and maybe that time is approaching.
Her and I talked and compared notes and we talked about the old Canmore and the people we grew up with.  Mary-ann was so saddened to hear of Shelley's passing and Maureens.  But that is life.  Mom started parroting our conversation meaning she repeats everything she hears.  She started doing it occasionally a few days earlier and in just that short of time,  now she does it all the time.  Mom is losing more cognitive thought abilities and if you say "Hi Elaine, how are you?"  she will respond "Hi Elaine, how are you?".  She has also started sundowning.  Some of these terms don't sound very 'medical' but they are the terms used to described the symptoms of end stage dementia.  Sundowning means that in the late afternoon mom gets these really blank stares.  Her eyes are opened but she really isn't focusing on anything, it's like a trance and even when you talk to her or snap your fingers in her face, she doesn't respond and will just stare at nothing, see the picture below.  The sundowning will progress into a regular behaviour.  When that happens, eating will be near impossible but the workers did tell me that the kitchen will keep a plate aside for her if she isn't alert enough at lunch or dinner times.
I look at it like like this, which came first, the chicken or the egg.  Is mom slipping backwards to a valley plateau or is she moving forward to the grave. Time will tell.

The Dementia Diary: Music gives wings to the mind

The Dementia Diary: Music gives wings to the mind: I make sure that mom doesn't spend her days in bed waiting to die.  At the facility there are plenty of activities that with my help she can...

The Dementia Diary: I learn something new everyday

The Dementia Diary: I learn something new everyday: There are more than 200 variations of dementia.  Alzheimer's of course is the most known but Parkinson's is also a type of dementia.  There ...

I learn something new everyday

There are more than 200 variations of dementia.  Alzheimer's of course is the most known but Parkinson's is also a type of dementia.  There is Vascular dementia which develops after suffering a stroke and Frontotemporal dementia in which the patient doesn't suffer memory loss rather they display schizophrenic behaviours and depression.  Then there is everything in between and often combinations of symptoms and they vary in each patient and they are simply called dementia.
On this day I met with the Geriatric psychiatrist who has been treating mom and now I'm expert and I know better what to expect.  He told me that mom has a type of dementia called RPD, Rapid Progressing Dementia.  This time last year my mom was still walking, talking, using the phone, eating and eating a lot, she sent me a beautiful card for my birthday and wrote an uplifting saying in it. Now she has apraxia (can't walk or control body movements), dysgraphia (can't write), she's bowel and urinary incontinent, she's aphasic (can't speak properly), she's aphonic (can't hear properly) and she is gradually getting dysphasia (she's slowly losing the ability to swallow).  All these new terms that I learnt apply to my mom.
The psychiatrist also believes, based on mom's history that she has rapid progressing dementia with Lewy bodies.  Lewy bodies are a by product of proteins that we need for normal neurotransmissions of messages to the brain.  When the Lewy bodies are created they attack the cortex of the brain.  That's where all the grey matter is and that's what pretty much controls every body function, emotion, memory, thought and language.  The cortex contains the cerebellum and the cerebrum. It makes up 2/3's of our brain and that's what is being attacked and slowly killing my mother.  He said she meets enough of the Lewy bodies criteria but that they can't determine if they are present until after she has passed and an autopsy is done and the brain tissue examined.  There is nothing that stops it, no medication that will slow it and it also presents differently in each patient.  It's also genetic and tends to run in families.
My grandmother died of cancer.  Really she died of dementia.  Hers was slower in the progression and she spent 6 years living in extended care.  When they diagnosis of cancer came, my grandfather, my mother and my aunts and uncles all decided that it would serve no purpose to torture her with treatments and surgery.  In addition, she was so weakened by the dementia that chances were, she wouldn't survive the treatments or surgery.  So the decision was made to make her as pain-free and as comfortable as possible.  She passed away 2 months later, in her sleep.
Now my mother has dementia only hers, like I mentioned, is rapid progressing dementia with Lewy bodies.  I had to ask what is the prognosis.  The doctor was very honest and told me he has seen RPD cases that get to point where they plateau and patients don't get worse but they don't get better and they live like that for about a year before pneumonia or infection gets them and many just slip into a type of coma and pass away peacefully.  But he also said that based on mom's history she IS end-stage and she could have anywhere from 6 weeks if the progression continues at the rate it has followed in the last 8 months and if it plateau's them maybe a year or slightly more.
At that point realizing that it is hitting the women in my family and coming to the conclusion that I'm next in line I asked him what are the chances that I will develop dementia.  All he could say was "It's very probable". Not the answer I wanted to hear.  But he also said that both my mother and grandmother were on Lithium for many, many years and although it isn't proven, many researchers believe that Lithium and other heavy metals that people are exposed to will contribute to the development of the Lewy bodies and that may be the case in my family.  If that is the case, then the simple fact that I don't take Lithium may be my saving grace. 
So that was the wake up call.  It could be 6 weeks or 6 months or a year.  Regardless I going to lose more and more of my mom in the near future until she is finally gone.  I went and sat with her and I cried again.  My mother has been tortured all of her life by her mind and by her brain and now it's going to torture her to her death.  It's just not fair.
For my dear friends that read this, please someone listen.  If in 25 years I get dementia I don't want my kids or my family or my friends to suffer along with me.  So someone do me a favour and do like chief did at the end of 'One Flew Over the Cuckoo's Nest' and just put a soft pillow over my face.

The Dementia Diary: BINGO was his name-o

The Dementia Diary: BINGO was his name-o: I must say that keeping mom busy and amused is fun.  I refuse to let her lay in bed  and die and I don't think that vegetated in front of a ...