I am trying think about what I would like to say about my mom. All I have it that I miss her. People loss a lot of people in their lives, friends, lovers, family. But you only ever lose one mom. My mom gave me life and I miss her. That's all I got. I MISS HER...
.
Thursday 26 December 2013
Monday 14 October 2013
The Dementia Diary: Stuffing
The Dementia Diary: Stuffing: I can remember last Thanksgiving very vividly. It was the start of a journey with my mom. It was the day that I decided I would be by my m...
Stuffing
I can remember last Thanksgiving very vividly. It was the start of a journey with my mom. It was the day that I decided I would be by my mother until her time came. It was the day I realized that mom wasn't going to be around much longer. It was the day that I started feeding my mother like she was a child. It was the day the journey started. It was the beginning of the end, or so I thought. My own life was in shambles. I was a 40 something woman now living in the basement of her father's house and my mother was slowly dieing right in front of my eyes. I was bitter and resentful and I didn't think there was fuck all to be thankful for. I was wrong. I was sooooooo wrong as I have so many things to be thankful for.
I am very thankful for friends, old and new. Coming back home and seeing so many familiar faces brought a happiness back into my life that was very much needed. The phonecalls, the emails, the coffee's at Starbucks and the support of my friends helped me to make it through a very difficult time without completely falling apart. Thank you to my tribe. I am also thankful for the many new friends that came into my life, although some very briefly. We shared a commonality that only the loved ones of a person with dementia know and because of that we bonded very intimately and very quickly. We shared laughter, we shared advice, we shared secrets, we shared tears and we shared pain, a lot of pain. The pain of losing a person to dementia is different from anything else because you lose them twice. You lose them once to the dementia as the pieces of the person they once were slowly disappear and then you lose them again when their body finally decides to go. That pain can take a caregiver to very dark and dank places. Without the love and understanding of the friends I made over the past year I would have gotten lost in that darkness and their light led the way. Thank you all from the top and the bottom of my heart.
I am very thankful for family. My kids have been rock solid through all of this. I really tried to shield them from the reality but you can't. I thought they would fall apart when they saw just how sick their grandmother was, but they didn't. Instead my wonderful kids faced the shit life was giving them with love and compassion. It was my kids that showed me how my bitterness and hatred of the situation wasn't helping anybody and it wasn't helping mom so I turned it around and life seemed that much better. The shit still smelled like shit but I didn't have to step in it. Of course I am thankful for my extended family too who went out of their way to make sure that not only was mom not forgotten but that dad and I weren't either. A lunch date and many tearful phone calls were had during the past year and every one of them lessened the burden that I was feeling. I'm thankful for my dad. When I moved home I expected it to be a nightmare and instead it was a dream come true. I was fortunate to see facets of my father that I didn't know existed. I realized just how patient, loving and wise my father is and how very funny he is too. Most importantly I learned just how strong the roots of my family tree are and how the branches will bend but they will not break.
Finally, I am thankful for the time. I've spent a third of the time in my life trying to please my mom. I've spent a third of the time in my life hating my mom. I've spent another third of the time in my life avoiding my mom. So, I am today so very thankful that I got to spend 11 months of my life caring for my mom. That time with my mom helped to heal a lot of pain. That time together helped me to remember all the good times with my mom and made me literally forget the bad. That time together helped me to relive some of the wonderful experiences we shared and create new ones. That time together helped to even re-write some of the history because mom would go back to moments of her past with me and together we changed the endings. Most importantly that time together made me realize that she was a wonderful, loving and caring woman and that she loved me and I loved her, I really loved her.
I am allergic to celery. Yes, it's 98% water but whatever the other 2% is, I'm deathly allergic. Because of the allergy mom had to modify the traditional turkey stuffing recipe to accomodate me and she did so lovingly. Besides the pies, mom's stuffing ruled. Here's the recipe. Happy Thanksgiving from mom and me.
I am very thankful for friends, old and new. Coming back home and seeing so many familiar faces brought a happiness back into my life that was very much needed. The phonecalls, the emails, the coffee's at Starbucks and the support of my friends helped me to make it through a very difficult time without completely falling apart. Thank you to my tribe. I am also thankful for the many new friends that came into my life, although some very briefly. We shared a commonality that only the loved ones of a person with dementia know and because of that we bonded very intimately and very quickly. We shared laughter, we shared advice, we shared secrets, we shared tears and we shared pain, a lot of pain. The pain of losing a person to dementia is different from anything else because you lose them twice. You lose them once to the dementia as the pieces of the person they once were slowly disappear and then you lose them again when their body finally decides to go. That pain can take a caregiver to very dark and dank places. Without the love and understanding of the friends I made over the past year I would have gotten lost in that darkness and their light led the way. Thank you all from the top and the bottom of my heart.
I am very thankful for family. My kids have been rock solid through all of this. I really tried to shield them from the reality but you can't. I thought they would fall apart when they saw just how sick their grandmother was, but they didn't. Instead my wonderful kids faced the shit life was giving them with love and compassion. It was my kids that showed me how my bitterness and hatred of the situation wasn't helping anybody and it wasn't helping mom so I turned it around and life seemed that much better. The shit still smelled like shit but I didn't have to step in it. Of course I am thankful for my extended family too who went out of their way to make sure that not only was mom not forgotten but that dad and I weren't either. A lunch date and many tearful phone calls were had during the past year and every one of them lessened the burden that I was feeling. I'm thankful for my dad. When I moved home I expected it to be a nightmare and instead it was a dream come true. I was fortunate to see facets of my father that I didn't know existed. I realized just how patient, loving and wise my father is and how very funny he is too. Most importantly I learned just how strong the roots of my family tree are and how the branches will bend but they will not break.
Finally, I am thankful for the time. I've spent a third of the time in my life trying to please my mom. I've spent a third of the time in my life hating my mom. I've spent another third of the time in my life avoiding my mom. So, I am today so very thankful that I got to spend 11 months of my life caring for my mom. That time with my mom helped to heal a lot of pain. That time together helped me to remember all the good times with my mom and made me literally forget the bad. That time together helped me to relive some of the wonderful experiences we shared and create new ones. That time together helped to even re-write some of the history because mom would go back to moments of her past with me and together we changed the endings. Most importantly that time together made me realize that she was a wonderful, loving and caring woman and that she loved me and I loved her, I really loved her.
I am allergic to celery. Yes, it's 98% water but whatever the other 2% is, I'm deathly allergic. Because of the allergy mom had to modify the traditional turkey stuffing recipe to accomodate me and she did so lovingly. Besides the pies, mom's stuffing ruled. Here's the recipe. Happy Thanksgiving from mom and me.
Ingredients
- 2 tablespoons vegetable oil
- 1 pound spicy pork bulk sausage
- 1 cup diced white onion
- 2 cups diced Macintosh apple
- 2 garlic cloves, minced
- 1 tablespoon chopped fresh parsley
- 2 teaspoons minced fresh sage
- 1 bay leaf
- 8 cups bread cubes
- 1 cup milk
- 1 cup chicken broth
- 2 tablespoons (1/4 stick) butter, melted
- 3 large eggs, beaten to blend
Preparation
Heat oil in heavy large skillet over medium heat. Add sausage; sauté until cooked through and brown, breaking into pieces with spoon, about 8 minutes. Using slotted spoon, transfer sausage to large bowl. Add next ingredients to drippings in skillet. Sauté over medium heat until vegetables are soft, about 5 minutes. Discard bay leaf. Add mixture to sausage. (Can be made 1 day ahead. Cover; chill. Reheat to lukewarm before continuing.)
Preheat oven to 350°F. Butter 13x9x2-inch glass baking dish. Add bread to sausage mixture. Whisk milk, broth, and butter in bowl to blend. Mix into stuffing; season stuffing with salt and pepper. Mix in eggs; transfer to prepared dish. Bake uncovered until cooked through and brown, about 50 minutes.
Wednesday 7 August 2013
The time has come.
Elaine Mary Remesoff (Obrigewitsch) was born on May 14,
1936 on the farm near Vibank,
Saskatchewan. She grew up on the
prairies of Saskatchewan. Elaine spent
her childhood both enduring the hardship and enjoying the bounties of farm life
and community. In 1958 she married James
Arthurs and together they had two sons, Douglas and David. Elaine and Jim lived in both Alberta and
Saskatchewan before later divorcing.
Being a single mother, Elaine went back to her roots in
Saskatchewan and returned to school to
get a better education. There she met
Peter Remesoff and in 1968 they were married and later that year had their
daughter, Lisa. Eventually Elaine and
Peter moved the family to Canmore, Alberta where they resided for over 30 years.
Elaine enjoyed many things in her life. She loved to curl, watch baseball and the
Saskatchewan Roughriders. She was a talented seamstress who also
enjoying knitting and was well known for her incredible pie making. Elaine travelled a lot having seen many parts
of Europe, South East Asia, Australia and Central America. She loved her family, she loved her children
and she loved doting on her grandchildren.
She retired from Canada Cement Lafarge in 1998 after 25 years of
employment and eventually her and Peter left the mountain community they loved,
settling in Cochrane, Alberta in 2008.
Elaine was predeceased by her father Jakob Obrigewitsch, step-father Harry Reinhardt and
her mother Agnes Reinhardt (Deck) She
was also predeceased by her older brother
Gerald Obrigewitsch, her younger sister Jacqueline Cross (Obrigewitsch) and her
nephew Lyndon Cross.
She is survived by her devoted husband of 45 years, Peter
Remesoff , her sons Douglas Arthurs, David (Sandra) Arthurs and daughter Lisa
Remesoff as well as her grandchildren Danielle Arthurs, Shayne Arthurs, Dylan
Bardwell and Ryley Sadorsky. Her
brothers Eugene Obrigewitsch and Reg (Clara) Reinhardt are also left mourning
her as are many nephews, nieces,
grand-nephews, a grand-niece and numerous dear friends in Saskatchewan and
Alberta.
A celebration of Elaine’s life will take place at Our
Lady of the Rockies Church, 810-7th Street, Canmore, Alberta on
August 12, 2013 at 11:00 am.
The family asks that in lieu of flowers, donations be
made in Elaine’s name to the Bethany Care Centre, Cochrane, Alberta. Funeral arrangements by Bow Valley Funeral
Service, Canmore, Alberta.
Saturday 27 July 2013
The Dementia Diary: The Dementia Diary: I don't wanna grow up
The Dementia Diary: The Dementia Diary: I don't wanna grow up: The Dementia Diary: I don't wanna grow up : I recently read a story about the world's oldest man. He is 116 years old and he is the...
What's in a word
I'm sure many have noticed that for nearly two months I have not posted on the blog. The reason is simple. My mom asked me not to. Mom has never read the blog and until it was brought to her attention, knew nothing of the blog. She has been led to believe that it contains nasty lies about her and of course, any one who has read it, knows that is far from the truth. So, I will focus the blog less on mom and more on dementia and everything associated with it.
I think one of the reasons mom hates the blog is because it uses the word dementia and she has grown to hate that word. Dementia is a Latin word from de- "without" + ment, the root of mens "mind and it means madness. Close your eyes and say the word out loud. What image comes to mind. I'm sure it is similar to what comes to my mind. I see a dishevelled person in a straight jacket banging their head against the wall of a padded room. That image creates a stigma and a big misunderstanding of what dementia in our modern world actually means. The word is off set when combined with others and sounds more medical. Close your eyes again and say Frontal Lobe dementia or Lewy Body dementia and what image comes to mind. If you are like me, than your mind stays blank because we haven't been conditioned to associate anything with those terms. That is what needs to change. People need to understand what dementia actually is. I hope to do that.
More than half the world still believes that dementia is a normal part of ageing. It isn't, far from it. I know many people in their eighties and even nineties who are as quick and on the ball cognitively as I am, even more so. They move a little slower and might even use a walker. Their bones are weaker. They might be a little incontinent and use Depends. They might have some age on-set diabetes or a bit of a problem with high blood pressure and need some medication. They might forget a person's birthday occasionally or misplace the TV remote, but don't we all, at any age. They still enjoy playing bridge or crib. They read, watch TV, gossip over coffee and complain about the state of affairs in the world. They still engage in normal everyday life. Normal ageing causes atrophy of the brain. However, overall cognitive functioning can remain unaffected as people age. The brain may become less efficient, but still be able to do the job. This is normal ageing and there in no dementia involved, their minds are essentially intact.
Dementia isn't a disease. It's a syndrome meaning that is has a set of signs and symptoms. The symptoms involve the cognitive functions of memory, attention, language and problem solving. Dementia is characterized by a progressive impairment of memory and intellectual function that is severe enough to interfere with social and work skills. Memory, orientation, abstraction, ability to learn, visual-spatial perception, and higher executive functions such as planning, organizing and sequencing may also be impaired. Dementia can be rapid progressing or slow in it's progression. Regardless, plaque building up on portions of the brain and atrophy of the neurons and white matter of the brain eventually causes physical symptoms as organs of the body lose the ability to function properly.
There are over 200 types and sub-types of dementia. Some types are completely genetic like Huntington's disease. Frontal lobe dementia and Alzheimer's can be inherited and it was just recently that the mutated gene for these types was finally identified. There are 11 inherited diseases that will cause dementia. Diseases like Krabbe disease and Urea cycle diseases. There are types of dementia like Wernicke's syndrome and Dementia pugilistic and when the causes of the dementia, in these cases alcohol and repeated brain trauma stop, the progression of the disease stops too. There are 'organic' types of dementia where secondary diseases cause the dementia. Diseases like syphilis, hypertension and vascular diseases will cause dementia if not properly treated. There are chemically induced types of dementia in which damage to the brain is caused by exposure to certain types of prescribed medications including anti-convulsive drugs and chemotherapy drugs. Methamphetamine use and even a one time exposure to anaesthetics can induce dementia also. In these cases some of the symptoms can and sometimes be reversible but the initial damage to the brain tissue and white matter are not and often over time, dementia may develop.
Geriatric medicine is still new in the world of medicine and only a handful of universities and medical schools in North America offer this type of specialization. Sadly, dementia was first seen in 1907 but not studied again until 1976. It's a shame that all those years that could have been spent on research and development were wasted. Regardless, I have faith that things will improve for everyone. For improvements to be seen we have to educate ourselves and become aware of this absolutely insidious illness and most importantly we need to prepare ourselves and our families.
The University of Calgary is one of the medical schools that does offer a geriatric medicine specialization program. Recently the department held an on-line seminar on dementia. Dr. Holroyd-Leduc was the facilitator. Like my mom, she can't stand the word dementia. She mentioned that prefers to use terms like 'Cognitive Disorder Not Otherwise Specified' and 'White Matter Hypodensity'. She also noted the simple fact that people don't understand those terms but they do understand the word dementia. I'm like mom too, I'm starting to hate the word just as much as she does.
I think one of the reasons mom hates the blog is because it uses the word dementia and she has grown to hate that word. Dementia is a Latin word from de- "without" + ment, the root of mens "mind and it means madness. Close your eyes and say the word out loud. What image comes to mind. I'm sure it is similar to what comes to my mind. I see a dishevelled person in a straight jacket banging their head against the wall of a padded room. That image creates a stigma and a big misunderstanding of what dementia in our modern world actually means. The word is off set when combined with others and sounds more medical. Close your eyes again and say Frontal Lobe dementia or Lewy Body dementia and what image comes to mind. If you are like me, than your mind stays blank because we haven't been conditioned to associate anything with those terms. That is what needs to change. People need to understand what dementia actually is. I hope to do that.
More than half the world still believes that dementia is a normal part of ageing. It isn't, far from it. I know many people in their eighties and even nineties who are as quick and on the ball cognitively as I am, even more so. They move a little slower and might even use a walker. Their bones are weaker. They might be a little incontinent and use Depends. They might have some age on-set diabetes or a bit of a problem with high blood pressure and need some medication. They might forget a person's birthday occasionally or misplace the TV remote, but don't we all, at any age. They still enjoy playing bridge or crib. They read, watch TV, gossip over coffee and complain about the state of affairs in the world. They still engage in normal everyday life. Normal ageing causes atrophy of the brain. However, overall cognitive functioning can remain unaffected as people age. The brain may become less efficient, but still be able to do the job. This is normal ageing and there in no dementia involved, their minds are essentially intact.
Dementia isn't a disease. It's a syndrome meaning that is has a set of signs and symptoms. The symptoms involve the cognitive functions of memory, attention, language and problem solving. Dementia is characterized by a progressive impairment of memory and intellectual function that is severe enough to interfere with social and work skills. Memory, orientation, abstraction, ability to learn, visual-spatial perception, and higher executive functions such as planning, organizing and sequencing may also be impaired. Dementia can be rapid progressing or slow in it's progression. Regardless, plaque building up on portions of the brain and atrophy of the neurons and white matter of the brain eventually causes physical symptoms as organs of the body lose the ability to function properly.
There are over 200 types and sub-types of dementia. Some types are completely genetic like Huntington's disease. Frontal lobe dementia and Alzheimer's can be inherited and it was just recently that the mutated gene for these types was finally identified. There are 11 inherited diseases that will cause dementia. Diseases like Krabbe disease and Urea cycle diseases. There are types of dementia like Wernicke's syndrome and Dementia pugilistic and when the causes of the dementia, in these cases alcohol and repeated brain trauma stop, the progression of the disease stops too. There are 'organic' types of dementia where secondary diseases cause the dementia. Diseases like syphilis, hypertension and vascular diseases will cause dementia if not properly treated. There are chemically induced types of dementia in which damage to the brain is caused by exposure to certain types of prescribed medications including anti-convulsive drugs and chemotherapy drugs. Methamphetamine use and even a one time exposure to anaesthetics can induce dementia also. In these cases some of the symptoms can and sometimes be reversible but the initial damage to the brain tissue and white matter are not and often over time, dementia may develop.
Geriatric medicine is still new in the world of medicine and only a handful of universities and medical schools in North America offer this type of specialization. Sadly, dementia was first seen in 1907 but not studied again until 1976. It's a shame that all those years that could have been spent on research and development were wasted. Regardless, I have faith that things will improve for everyone. For improvements to be seen we have to educate ourselves and become aware of this absolutely insidious illness and most importantly we need to prepare ourselves and our families.
The University of Calgary is one of the medical schools that does offer a geriatric medicine specialization program. Recently the department held an on-line seminar on dementia. Dr. Holroyd-Leduc was the facilitator. Like my mom, she can't stand the word dementia. She mentioned that prefers to use terms like 'Cognitive Disorder Not Otherwise Specified' and 'White Matter Hypodensity'. She also noted the simple fact that people don't understand those terms but they do understand the word dementia. I'm like mom too, I'm starting to hate the word just as much as she does.
Monday 3 June 2013
The Dementia Diary: I don't wanna grow up
The Dementia Diary: I don't wanna grow up: I recently read a story about the world's oldest man. He is 116 years old and he is the last person living in the world that was born i...
I don't wanna grow up
I recently read a story about the world's oldest man. He is 116 years old and he is the last person living in the world that was born in the 19th century. I honestly can't fathom all the changes this man has been witness too. Of course the obvious technological changes are many but this is a man who lived in the tail end of the Japanese feudal system who saw changes from a shogunate to an emperor and than to a western like parliamentary system. This is a man who lived through the many wars that Japan fought and remembers his country as an ally in WW 1 and as the enemy in WW 2. This is a man who worked in Korea when it was a colony of Japan. This is man who retired before I was even born, smoked when it was fashionable, still enjoys rice wine, and took up farming at the age of 90. He attributes his longevity not to healthy living but to eating small, sensible meals of fresh, seasonal foods. Go figure that. The secret to the longevity is eating real food in smaller portions.
When I was a child, I wanted to grow up and it wasn't about being 18 and leaving home. I enjoyed hanging around with the elderly and listening to their stories of the days long past. I loved how my grandfather was respected in my family and how other elderly people were respected in their families too. I can remember sitting on my grandfathers knee and staring at the wrinkles of time and hard work on his face. I would rub my hand across the weathered skin of his face and I would pull on the waddle of his chin. I would laugh when he took out his false teeth and laugh even harder when I pulled his finger so he could fart. He would say "When you're my age you can fart anywhere". I never looked at my grandfather as old or decrepit. I always saw him as an honourable man, who worked hard for his family and who did the best he could with what he had. I respected my grandfather and I still do. He wasn't a centurion when he passed away, in fact he was my mom's age now. Regardless, he had lived to see many changes in the world, his children grow, most of his grand-children grow and even few great-grandchildren come into this world. I was very saddened when he died and I still miss him. But I thought he had lived a long enough life and as his health was started to fail him, perhaps it was time.
In our modern world we live longer. We live longer for many reasons and of course medical advancements is the first and foremost reason. However, are some of these medical advancements really worth it. I can stop colouring my hair now and take a pill that stops grey hair. I can get botox or a face lift or a butt lift or a breast lift at any age I want. I can take a variety of remedies to stave off this disease or that disease and I can take a plethora of medications to prevent the advancement of any age related disease that I may develop. So, I could in fact live to be centurion myself. The question is, do I want too? Mr. Kimura in Japan is the last man in a world of 7 billion people to be born in the 19th century. 1 in 7 billion. That fact alone makes him a rarity and makes me think even further. Is the human body made to live that long? I don't think it is.
Everyday I see the elderly at mom's facility. Everyday I hear some sort of complaint of a sore this or a sore that. Everyday someone will say I wish I could still see or I wish I could still dance or I wish my wife was still here. Everyday I watch those elderly who can no longer talk, or walk. I watch as they stare and then suddenly, for no reason they smile. I wonder if they are remembering a happier time in their life or is it simply their befuddled mind. Sometimes I hear them moan for no reason and I wonder if they are in pain and do they feel pain or is it just an involuntary reaction or the only sound they are able to make. I wonder is this the life they envisioned. I wonder if they had a choice, what choice would they make. I wonder if they are happy or if they are just waiting. I wonder a lot. I wonder about my own old age and I envision how I want it to be. Sadly, chances are, it will be nothing close to what I envision.
More and more our world is changing and even now, in my 40's I complain about some of the changes. The one change that I find most disturbing though is the treatment of our elderly. For centuries the elderly were kings and chiefs. They were respected on honoured. Our world is no longer like that. Elderly are blamed for the misfortunes of today's world and for the historical choices they made. The elderly are criticised for everything from the way they drive to costing the systems millions of dollars. Then they are herded away into facilities so they are unseen and then forgotten about. I doubt that this how they envisioned their golden years because really, what's golden about that?
Mr. Kimura is cared for by the 89 year old widow of his eldest son. He has out lived two wives, two children and even some of his grand-children as well as his siblings and all of his close friends. At 116 he spends most of his days in bed. As he is the oldest living person in the world he has been interviewed many times. I read over twenty different interviews from news agencies around the globe and not one of them, not one has ever asked him this simple question, "Are you happy Mr. Kimura?". Perhaps they don't ask because they know the answer or they fear the answer. I don't know the answer either but I know what my answer would be and as it stands now, I don't wanna grow up.
When I was a child, I wanted to grow up and it wasn't about being 18 and leaving home. I enjoyed hanging around with the elderly and listening to their stories of the days long past. I loved how my grandfather was respected in my family and how other elderly people were respected in their families too. I can remember sitting on my grandfathers knee and staring at the wrinkles of time and hard work on his face. I would rub my hand across the weathered skin of his face and I would pull on the waddle of his chin. I would laugh when he took out his false teeth and laugh even harder when I pulled his finger so he could fart. He would say "When you're my age you can fart anywhere". I never looked at my grandfather as old or decrepit. I always saw him as an honourable man, who worked hard for his family and who did the best he could with what he had. I respected my grandfather and I still do. He wasn't a centurion when he passed away, in fact he was my mom's age now. Regardless, he had lived to see many changes in the world, his children grow, most of his grand-children grow and even few great-grandchildren come into this world. I was very saddened when he died and I still miss him. But I thought he had lived a long enough life and as his health was started to fail him, perhaps it was time.
In our modern world we live longer. We live longer for many reasons and of course medical advancements is the first and foremost reason. However, are some of these medical advancements really worth it. I can stop colouring my hair now and take a pill that stops grey hair. I can get botox or a face lift or a butt lift or a breast lift at any age I want. I can take a variety of remedies to stave off this disease or that disease and I can take a plethora of medications to prevent the advancement of any age related disease that I may develop. So, I could in fact live to be centurion myself. The question is, do I want too? Mr. Kimura in Japan is the last man in a world of 7 billion people to be born in the 19th century. 1 in 7 billion. That fact alone makes him a rarity and makes me think even further. Is the human body made to live that long? I don't think it is.
Everyday I see the elderly at mom's facility. Everyday I hear some sort of complaint of a sore this or a sore that. Everyday someone will say I wish I could still see or I wish I could still dance or I wish my wife was still here. Everyday I watch those elderly who can no longer talk, or walk. I watch as they stare and then suddenly, for no reason they smile. I wonder if they are remembering a happier time in their life or is it simply their befuddled mind. Sometimes I hear them moan for no reason and I wonder if they are in pain and do they feel pain or is it just an involuntary reaction or the only sound they are able to make. I wonder is this the life they envisioned. I wonder if they had a choice, what choice would they make. I wonder if they are happy or if they are just waiting. I wonder a lot. I wonder about my own old age and I envision how I want it to be. Sadly, chances are, it will be nothing close to what I envision.
More and more our world is changing and even now, in my 40's I complain about some of the changes. The one change that I find most disturbing though is the treatment of our elderly. For centuries the elderly were kings and chiefs. They were respected on honoured. Our world is no longer like that. Elderly are blamed for the misfortunes of today's world and for the historical choices they made. The elderly are criticised for everything from the way they drive to costing the systems millions of dollars. Then they are herded away into facilities so they are unseen and then forgotten about. I doubt that this how they envisioned their golden years because really, what's golden about that?
Mr. Kimura is cared for by the 89 year old widow of his eldest son. He has out lived two wives, two children and even some of his grand-children as well as his siblings and all of his close friends. At 116 he spends most of his days in bed. As he is the oldest living person in the world he has been interviewed many times. I read over twenty different interviews from news agencies around the globe and not one of them, not one has ever asked him this simple question, "Are you happy Mr. Kimura?". Perhaps they don't ask because they know the answer or they fear the answer. I don't know the answer either but I know what my answer would be and as it stands now, I don't wanna grow up.
Thursday 23 May 2013
The Dementia Diary: An Onion Sandwich
The Dementia Diary: An Onion Sandwich: I haven't been writing a lot on the blog lately because it has been a very difficult 3 weeks. There have been a couple deaths on my mom...
An Onion Sandwich
I haven't been writing a lot on the blog lately because it has been a very difficult 3 weeks. There have been a couple deaths on my mom's wing that saddened me more than I thought they would. I've struggled with my own mid-life thoughts and mom, well mom has been helped along to a 'I hate Lisa mode'. Although it isn't unfamiliar territory for me, it hurts and it's depressing to read about so I won't go into detail. It's not what she says that hurts because they are things I have heard before at many times through out my life. They are nasty, hurtful words that in the past could be attributed to mental illness but now not so much. Mom still has some sort of dementia, nobody can really pin point what and mom still has mental illness and what label she is now can't really be defined either. What is for sure is that she isn't firing on all cylinders and it is obvious to everyone. What is for sure is that she isn't at a normal functioning level of thought and that too is obvious to everyone. What is also for sure that her thoughts are being manipulated by a close family member and that is what I find most hurtful and disturbing.
We go through life really believing that we know our family members, that we really know them and trust them. That is until a family crisis hits and often the true colours of the person are revealed. That is the present situation. Two months ago dad and I started bringing mom home on the weekends. Not all the visits were good because mom can't remember things that have always been in the house and insisted they were another woman's. They she couldn't remember that she once weighed almost 200 lbs and the clothes in the closet weren't another 'fat' woman's rather they were hers. To alleviate the possibility of mom getting agitated dad and I would often give the phone and her address book to her. Mom really can't use the phone that well and most calls would not get through but the occasional call would connect and mom would talk away about whatever was in her mind at the time. Regardless, it would occupy a good hour of mom's time and often tire her out to the point of needed an afternoon nap. I guess the phone was a pacifier for mom as it allowed her to feel some connection with the outside world. Some of the conversations were innocuous and I had no concern. But, some required damage control like when she called the husband of her deceased friend and demanded to speak with her or when she laughed at another friend after he told that his wife (who mom really didn't like) has terminal cancer. Many times mom would hit the speaker phone button and from the basement I could monitor the conversations and intervene to do any damage control when needed. It was during these speaker phone calls that I heard my mom's conversations with the family member I speak of.
The first hint of dissidence was in January of this year and it wasn't in a phone call rather it was in person and this family member said things, with lawyers present that were disturbing and confusing. At the time mom was was getting better and had been taken out of the Broda chair and into a regular wheelchair. I thought this family member would pleased with mom's progression but they seemed not notice, let alone care. This person then told lawyers that my mom put herself into the extended care facility that she is in to get away from the abuse of my father. Of course no one present took it seriously because all of us present knew that people don't admit themselves to an extended care home. We all know that any senior or person with disability must be assessed and then they are put on a waiting list and when a bed becomes available then they are placed in a facility. Depending on the level of need is how people are placed in Alberta and because, at the time, mom's need was great, she was placed in an available facility almost immediately. This person knows that mom was in two other extended care facilities before a bed became available where she presently resides. The statement confused everyone and one of the lawyers actually asked me if there were skeletons in the closet. I was confused and began to think that maybe I didn't notice things or I had blocked things out or that perhaps things had happened before I was born. I was shocked and couldn't believe that this person would say such things and to alleviate my own confusion I spoke with other family members. They all reassured me that my father was never abusive to my mother and that I'm not blocking anything out of my memory. We all agreed that this family member has their own mental health issues that aren't being addressed and this is how they perceive things from the past and things now present. So, I just left it at that as no one was taking the statement seriously and we all knew it to be untrue.
Months later when I first overheard a conversation between this person and my mom I still wasn't that concerned. This person has issues not only with the family but with me in particular and the statements they made about me to my mom were hurtful, untrue and uncalled for. I was angered not by what was said about me but that this person, knowing that mom is often confused, would say things to add more confusion to her mind. I thought it very irresponsible and inconsiderate of this person to do so because that is exactly what happened. Mom became more confused and began to question the reasoning as to why I, of all people, returned home to help care for her. I explained to her that at the time we all felt that she would not survive to Christmas and I came home to be with her during that time and to be there for my father. Nothing more became of it and after a nap, mom was fine.
I overheard other conversations between my mom and this person and each one became more and more disturbing. There is a very fine line between being positive and encouraging with mom and encouraging the delusions. When mom gets angry at the walker and says how she hates it dad or I or the workers tell her that the walker is for her safety until she gets her balance back and that there is no shame in using a walker as almost all the people around her use them. We remind her that only a few months ago she couldn't walk at all and we try to encourage her to be grateful. Those are words of reassurance and encouragement and they are positive and they alleviate her anxiety. Mom is nothing short of a small miracle and it is possible that someday she will not need the walker but the reality is that she for now, she needs it and chances are that she will need it for the rest of her life. However this person made statements that if mom could walk without the walker she could move out of the care facility she is in and live on her own. What has happened is mom at times thinks that she should walk more without the walker and then she can leave the extended facility. The fact is that mom does not have good balance without the walker. She can walk without from a chair to a nearby table to keep her balance but no further. She has argued with the caregivers at the facility insisting that she does not need the walker. These beliefs put mom at risk. Mom could easily fall and break a hip or hit or head or anything. But the person who made these statements, the statements that enhance her delusions gave no consideration to the risk that it creates for mom or the facility or for the worry it creates for the rest of family, especially my dad. That I find very disturbing.
For a couple months now mom has worried about money and the power of attorney and how to pay for the facility. She worries that her grand-children's educational funds will be spent up paying for the facility. She worries that dad will sell the house and keep all the money. She is angry that she no longer has credit cards. Others in the facility worry and complain about the exact same things and many families and caregivers deal with these issues regularly. We tell mom that her pensions cover the expenses of the facility and they do. We remind her that she doesn't need money as everything she needs is at the facility and when she needs anything, and I mean anything from ice cream to support hose, dad runs out and gets it for it. When she wants to go shopping, dad takes her. Still the worries of money sit in her mind and some days that is all she can think about and it agitates her. In some of the conversations that mom had with this family member, they too mentioned the power of attorney and how it was there opinion that mom was capable to handle her finances and that they would help her with that but first she had to get the power of attorney revoked. On two occasions after conversations with this family member mom became so agitated that dad and I had to end the home visit and return her to the facility where the workers could calm her down and medicate her if necessary. One of these occasions I got so angry that I called other family members and asked them to speak with this other family member because perhaps they don't realize how it agitates mom and how their words effect her well being. I didn't think it was intentional, I thought they just aren't aware of how to communicate with a person who has an addled mind and how you have to choose your words wisely. I left to the rest of family to deal with and I hoped that this family member would understand and start talking about the weather instead, they didn't.
The other reoccurring delusion that mom has is that there is another woman living with dad during the week who leaves on the weekend. In the past she had a name, Mary but that morphed to a fat woman wearing size 18 clothes who was using the closet and then mom deciding that she was leaving dad as soon as she could. Most people at the facility simply laughed at the delusions, not in front of mom, but rather with me when I came to help out or to visit. Although very hurtful to hear and hurtful to see how it hurts my dad, we have to laugh at them because it's funny to imagine my father with another woman or someone like my dad carrying on with another woman. For myself, my dad, my daughter and the workers there really was no way to put a positive spin on her delusions so we would attempt to refute them with common sense. That doesn't work either as you can't reason with a person who's mind isn't working properly. More often than not we would all choose just to listen as she would natter on and after a few minutes, because her mind isn't all there, mom would think about something else and the conversation would change. In another conversation that I overhead between my mother and the family member it became very evident that the family member I write about has little concern for the well being of my mother. Rather than refute the delusions that mom spoke off, like other members of the family and friends who she had spoken with on the matter and on that day, this person said that they hire a moving van and in July come and collect mom, her things and help her to resettle in another city, in another province and that all my mom had to do was get the power of attorney back. I couldn't believe what I was hearing and the level of agitation that it created in mom was off the scale. I cried out of anger and I cried out of the realization that this family member is not in denial about mom's mental capability, they are not unaware of how to communicate with mom, they are not trying to help mom, rather they are trying to use mom's weak mind to manipulate the situation. If mom were actually to move and leave dad, live on her own and take care of her money (all of which she can't physically, mentally or competently do) then this person would have access to what money and investments mom has and with the state of mind that mom is in, they could easily manipulative mom for their own financial and personal gain. I can't even comprehend such behaviour by anyone let alone a member of our family and by definition it's a form of elder abuse. I was sickened by the obvious and struggled to find answers as to why this person, this family person would behave in such a way. Is this person so greedy that they will say and do things with the intention of gaining access to mom's finances? Do they hate me and dad so much that they say and do things that will upset mom and in turn make things difficult for dad and myself? Are they delusional or mentally ill themselves and really aren't aware of what they are doing? I simply do not know the reasoning and I never really will but what I do know it that their actions and behaviors are harmful to my mother and her well being but I can't stop it and I feel helpless.
I brought my concerns to other family members. Really nothing can be done and no one wanted to pursue it further because the rest of the family is well aware of mom's limitations, so nothing was said or done. I was left with a very saddened and broken heart and not because I felt no one was listening but because this was another family member who I had trusted and who I had once loved. It breaks my heart to see the confusion this person's statements had for mom and how it bothered her to the point of where my mom is once again a victim of the terrors that are in her own mind. For a few months mom was normal and our relationship was normal and enjoyable. If I left the room she would ask, where's Lisa-Maire and would ask the workers when my dad and I were coming and we would have normal conversations do things together. Life was good, well as good as it gets and this family member has awakened the demons that had been sleeping in mom and they have done that intentionally. When the family member decided to come for what is now an extended visit I simply had to put everything in God's hands, and as difficult as that is for me to do, that's what I've done. So for over a week now mom won't speak to me because this family member told her not too. That hurts, that hurts a lot. Other caregivers and workers on the wing that mom lives on have also over heard what this person says to mom and how they communicate with her and they have concerns too as they see how it agitates and creates anxiety for mom. The other caregivers and workers have noticed how it is affecting my father and his anguish is showing in his health. The other caregivers and workers have noticed how it hurts me because my smile isn't as big as it was. But I tell them not to worry because this person will eventually leave and mom will have a different delusion and that the dust will settle. I said this just yesterday though inside, my heart was throbbing because it is painful.
As I was speaking with another caregiver and explaining to her not to worry one of the residents called me.
"Lisa-Marie," she said. "I can hear you, come over here." This resident is very blind and knows me by the sound of my voice. So I went over to her to see what she wanted.
"Did you make Joan an onion sandwich,' she asked abruptly.
I answered that I had and I was confused by the question and thinking that maybe the smell of sandwich or smell of Joan's breath was disturbing to this resident. Instead she asked how I made the sandwich and I told her with whole wheat bread, butter, mayo, salt, pepper and white vidalia onions.
She smiled at me and said "White onions, right".
"Yes," I responded.
"Perfect," she said. "Can you make me one for supper tomorrow only I like lots of mayo on mine." I smiled and said I would and gave her a hug.
In that moment all the the worry, the fear, the anger and the hurt was gone. It was gone because I realized that people know what is in our souls and that the residents, the staff, the rest of my family and even my mother know that my soul is good. So does God and God really knows what is in our souls so now I fear for this family member because I'm pretty sure that they are digging themselves to hell.
We go through life really believing that we know our family members, that we really know them and trust them. That is until a family crisis hits and often the true colours of the person are revealed. That is the present situation. Two months ago dad and I started bringing mom home on the weekends. Not all the visits were good because mom can't remember things that have always been in the house and insisted they were another woman's. They she couldn't remember that she once weighed almost 200 lbs and the clothes in the closet weren't another 'fat' woman's rather they were hers. To alleviate the possibility of mom getting agitated dad and I would often give the phone and her address book to her. Mom really can't use the phone that well and most calls would not get through but the occasional call would connect and mom would talk away about whatever was in her mind at the time. Regardless, it would occupy a good hour of mom's time and often tire her out to the point of needed an afternoon nap. I guess the phone was a pacifier for mom as it allowed her to feel some connection with the outside world. Some of the conversations were innocuous and I had no concern. But, some required damage control like when she called the husband of her deceased friend and demanded to speak with her or when she laughed at another friend after he told that his wife (who mom really didn't like) has terminal cancer. Many times mom would hit the speaker phone button and from the basement I could monitor the conversations and intervene to do any damage control when needed. It was during these speaker phone calls that I heard my mom's conversations with the family member I speak of.
The first hint of dissidence was in January of this year and it wasn't in a phone call rather it was in person and this family member said things, with lawyers present that were disturbing and confusing. At the time mom was was getting better and had been taken out of the Broda chair and into a regular wheelchair. I thought this family member would pleased with mom's progression but they seemed not notice, let alone care. This person then told lawyers that my mom put herself into the extended care facility that she is in to get away from the abuse of my father. Of course no one present took it seriously because all of us present knew that people don't admit themselves to an extended care home. We all know that any senior or person with disability must be assessed and then they are put on a waiting list and when a bed becomes available then they are placed in a facility. Depending on the level of need is how people are placed in Alberta and because, at the time, mom's need was great, she was placed in an available facility almost immediately. This person knows that mom was in two other extended care facilities before a bed became available where she presently resides. The statement confused everyone and one of the lawyers actually asked me if there were skeletons in the closet. I was confused and began to think that maybe I didn't notice things or I had blocked things out or that perhaps things had happened before I was born. I was shocked and couldn't believe that this person would say such things and to alleviate my own confusion I spoke with other family members. They all reassured me that my father was never abusive to my mother and that I'm not blocking anything out of my memory. We all agreed that this family member has their own mental health issues that aren't being addressed and this is how they perceive things from the past and things now present. So, I just left it at that as no one was taking the statement seriously and we all knew it to be untrue.
Months later when I first overheard a conversation between this person and my mom I still wasn't that concerned. This person has issues not only with the family but with me in particular and the statements they made about me to my mom were hurtful, untrue and uncalled for. I was angered not by what was said about me but that this person, knowing that mom is often confused, would say things to add more confusion to her mind. I thought it very irresponsible and inconsiderate of this person to do so because that is exactly what happened. Mom became more confused and began to question the reasoning as to why I, of all people, returned home to help care for her. I explained to her that at the time we all felt that she would not survive to Christmas and I came home to be with her during that time and to be there for my father. Nothing more became of it and after a nap, mom was fine.
I overheard other conversations between my mom and this person and each one became more and more disturbing. There is a very fine line between being positive and encouraging with mom and encouraging the delusions. When mom gets angry at the walker and says how she hates it dad or I or the workers tell her that the walker is for her safety until she gets her balance back and that there is no shame in using a walker as almost all the people around her use them. We remind her that only a few months ago she couldn't walk at all and we try to encourage her to be grateful. Those are words of reassurance and encouragement and they are positive and they alleviate her anxiety. Mom is nothing short of a small miracle and it is possible that someday she will not need the walker but the reality is that she for now, she needs it and chances are that she will need it for the rest of her life. However this person made statements that if mom could walk without the walker she could move out of the care facility she is in and live on her own. What has happened is mom at times thinks that she should walk more without the walker and then she can leave the extended facility. The fact is that mom does not have good balance without the walker. She can walk without from a chair to a nearby table to keep her balance but no further. She has argued with the caregivers at the facility insisting that she does not need the walker. These beliefs put mom at risk. Mom could easily fall and break a hip or hit or head or anything. But the person who made these statements, the statements that enhance her delusions gave no consideration to the risk that it creates for mom or the facility or for the worry it creates for the rest of family, especially my dad. That I find very disturbing.
For a couple months now mom has worried about money and the power of attorney and how to pay for the facility. She worries that her grand-children's educational funds will be spent up paying for the facility. She worries that dad will sell the house and keep all the money. She is angry that she no longer has credit cards. Others in the facility worry and complain about the exact same things and many families and caregivers deal with these issues regularly. We tell mom that her pensions cover the expenses of the facility and they do. We remind her that she doesn't need money as everything she needs is at the facility and when she needs anything, and I mean anything from ice cream to support hose, dad runs out and gets it for it. When she wants to go shopping, dad takes her. Still the worries of money sit in her mind and some days that is all she can think about and it agitates her. In some of the conversations that mom had with this family member, they too mentioned the power of attorney and how it was there opinion that mom was capable to handle her finances and that they would help her with that but first she had to get the power of attorney revoked. On two occasions after conversations with this family member mom became so agitated that dad and I had to end the home visit and return her to the facility where the workers could calm her down and medicate her if necessary. One of these occasions I got so angry that I called other family members and asked them to speak with this other family member because perhaps they don't realize how it agitates mom and how their words effect her well being. I didn't think it was intentional, I thought they just aren't aware of how to communicate with a person who has an addled mind and how you have to choose your words wisely. I left to the rest of family to deal with and I hoped that this family member would understand and start talking about the weather instead, they didn't.
The other reoccurring delusion that mom has is that there is another woman living with dad during the week who leaves on the weekend. In the past she had a name, Mary but that morphed to a fat woman wearing size 18 clothes who was using the closet and then mom deciding that she was leaving dad as soon as she could. Most people at the facility simply laughed at the delusions, not in front of mom, but rather with me when I came to help out or to visit. Although very hurtful to hear and hurtful to see how it hurts my dad, we have to laugh at them because it's funny to imagine my father with another woman or someone like my dad carrying on with another woman. For myself, my dad, my daughter and the workers there really was no way to put a positive spin on her delusions so we would attempt to refute them with common sense. That doesn't work either as you can't reason with a person who's mind isn't working properly. More often than not we would all choose just to listen as she would natter on and after a few minutes, because her mind isn't all there, mom would think about something else and the conversation would change. In another conversation that I overhead between my mother and the family member it became very evident that the family member I write about has little concern for the well being of my mother. Rather than refute the delusions that mom spoke off, like other members of the family and friends who she had spoken with on the matter and on that day, this person said that they hire a moving van and in July come and collect mom, her things and help her to resettle in another city, in another province and that all my mom had to do was get the power of attorney back. I couldn't believe what I was hearing and the level of agitation that it created in mom was off the scale. I cried out of anger and I cried out of the realization that this family member is not in denial about mom's mental capability, they are not unaware of how to communicate with mom, they are not trying to help mom, rather they are trying to use mom's weak mind to manipulate the situation. If mom were actually to move and leave dad, live on her own and take care of her money (all of which she can't physically, mentally or competently do) then this person would have access to what money and investments mom has and with the state of mind that mom is in, they could easily manipulative mom for their own financial and personal gain. I can't even comprehend such behaviour by anyone let alone a member of our family and by definition it's a form of elder abuse. I was sickened by the obvious and struggled to find answers as to why this person, this family person would behave in such a way. Is this person so greedy that they will say and do things with the intention of gaining access to mom's finances? Do they hate me and dad so much that they say and do things that will upset mom and in turn make things difficult for dad and myself? Are they delusional or mentally ill themselves and really aren't aware of what they are doing? I simply do not know the reasoning and I never really will but what I do know it that their actions and behaviors are harmful to my mother and her well being but I can't stop it and I feel helpless.
I brought my concerns to other family members. Really nothing can be done and no one wanted to pursue it further because the rest of the family is well aware of mom's limitations, so nothing was said or done. I was left with a very saddened and broken heart and not because I felt no one was listening but because this was another family member who I had trusted and who I had once loved. It breaks my heart to see the confusion this person's statements had for mom and how it bothered her to the point of where my mom is once again a victim of the terrors that are in her own mind. For a few months mom was normal and our relationship was normal and enjoyable. If I left the room she would ask, where's Lisa-Maire and would ask the workers when my dad and I were coming and we would have normal conversations do things together. Life was good, well as good as it gets and this family member has awakened the demons that had been sleeping in mom and they have done that intentionally. When the family member decided to come for what is now an extended visit I simply had to put everything in God's hands, and as difficult as that is for me to do, that's what I've done. So for over a week now mom won't speak to me because this family member told her not too. That hurts, that hurts a lot. Other caregivers and workers on the wing that mom lives on have also over heard what this person says to mom and how they communicate with her and they have concerns too as they see how it agitates and creates anxiety for mom. The other caregivers and workers have noticed how it is affecting my father and his anguish is showing in his health. The other caregivers and workers have noticed how it hurts me because my smile isn't as big as it was. But I tell them not to worry because this person will eventually leave and mom will have a different delusion and that the dust will settle. I said this just yesterday though inside, my heart was throbbing because it is painful.
As I was speaking with another caregiver and explaining to her not to worry one of the residents called me.
"Lisa-Marie," she said. "I can hear you, come over here." This resident is very blind and knows me by the sound of my voice. So I went over to her to see what she wanted.
"Did you make Joan an onion sandwich,' she asked abruptly.
I answered that I had and I was confused by the question and thinking that maybe the smell of sandwich or smell of Joan's breath was disturbing to this resident. Instead she asked how I made the sandwich and I told her with whole wheat bread, butter, mayo, salt, pepper and white vidalia onions.
She smiled at me and said "White onions, right".
"Yes," I responded.
"Perfect," she said. "Can you make me one for supper tomorrow only I like lots of mayo on mine." I smiled and said I would and gave her a hug.
In that moment all the the worry, the fear, the anger and the hurt was gone. It was gone because I realized that people know what is in our souls and that the residents, the staff, the rest of my family and even my mother know that my soul is good. So does God and God really knows what is in our souls so now I fear for this family member because I'm pretty sure that they are digging themselves to hell.
Monday 6 May 2013
The Dementia Diary: The Dementia Diary: Stupid is as stupid does.
The Dementia Diary: The Dementia Diary: Stupid is as stupid does.: The Dementia Diary: Stupid is as stupid does. : Government has never made sense to me. I think it's a lot like Wal-mart, stupidity is a...
Sunday 5 May 2013
The Dementia Diary: Stupid is as stupid does.
The Dementia Diary: Stupid is as stupid does.: Government has never made sense to me. I think it's a lot like Wal-mart, stupidity is a requirement for employment. The new model of a...
Stupid is as stupid does.
Government has never made sense to me. I think it's a lot like Wal-mart, stupidity is a requirement for employment. The new model of activity based funding for Alberta Heath Services is no different. Stupid, that's the only word to describe it, stupid.
The new model will be beneficial to some areas of health care in this province. It has the potential to speed up treatment time in hospital wait rooms and decrease surgery wait times and even simple procedures like ultra sound. It provides incentives for health care providers to ensure quality care. Pay for performance is another name for this payment model as it rewards physicians, hospitals, medical groups, and other health care providers for meeting certain performance measures for quality and efficiency. The quality and efficiency are rated on turn over and turn over times. The idea is that doctors and health service providers will see more patients because the more they see and the more they treat than more funding is available to them.
This funding model works well for long-term facilities that operate to rehabilitate an individual. 70% of the long-term facilities in Alberta are for the care of our senior citizens. Roughly 40,000 of those seniors have dementia. Dementia is a progressive disease, with no cure. Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living and lasts more than 6 months. Dementia is a terminal illness. Allison Redford, our premiere, knows what dementia is. Ron Casey, our local MLA, knows what dementia is. Fred Horne, the minister of health in Alberta, surely must know what dementia is and I'm sure, George VanderBurg, the associate minister for seniors, knows what dementia is. Yet, I have to wonder if they do, because they have applied this new funding model to long care facilities across the province knowing that 70% of those facilities are for seniors and knowing that 40,000 tax-paying Albertans have some form of dementia. Long-term care facilities and especially those that cater to seniors with dementia, don't have turn over, so the funding that they have been receiving in the past is now gone and they can't possibly qualify for additional funding with the new model. The name long-term care says it all. Long-term is self explanatory it means a patient is at the facility for a long term.
I have sent emails to all of those involved in the changes to the funding model. They have a standard answer written by the communications officer. It states 'the service provider at the facility where your mother resides, was made aware of the forthcoming changes in 2009. They have had 3 years in which to adjust their budgeting, costing and expense requirements accordingly. Therefore your concerns should be addressed to them'. Passing the buck, the one thing all politicians are good at. It isn't the service providers fault that the government is applying such a funding model to facilities that can't possibly rehabilitate those that reside there.
To manage the loss in funding, the society that runs my mom's facility did lay-offs from the top to the bottom. The loss of an executive position has no relevance in the care of my mother but the loss of a nurse or an LPN or a health care worker certainly does and everyone has noticed the difference. The staff that still have jobs are already tired and burning out. There are two workers and one nurse on a wing with 26 residents. The nurse is usually very busy giving medications and checking everything from minor to major complaints. In addition, the government, in their infinite wisdom now requires a tracking system for each individual patient that must be recorded daily and then input into a government database. It can take almost an hour to record and input the data required for 1 PATIENT, yes for 1 patient. The nurses work 8 hour shifts, there are 24 hours in a day there are 26 patients so everyday they are already behind. Then they fall further behind because there is only 1 nurse on the midnight shift for 3 wings that have 78 long-term care patients and she must input every report that hasn't been entered and make adjustments if there is any incident that happens in any of the three wings overnight. If you think that people with dementia actually sleep at night then you are wrong. The reports are sent to the government every two weeks and if any report is late or missing then there is no money given to the facility for that period. If a computer glitches up and the reports are not submitted then there is no money given to the facility for that period.. If a resident is rehabilitated and moves out of the facility during that period, then the government does give money to the facility and even more money. But in a 'dementia' wing, the only way out is by death and death doesn't meet the funding criteria so if a resident dies during that reporting period, then no money is given to the facility.
The nurses are busy but the government expects them to properly adhere to the medication requirements in a timely manner and do the residents reports and help with the basic day to day care of the facility residents. They don't have the time so the onus for the basic care of course falls on the tired shoulders of the health care workers. It takes anywhere from 20 to 45 minutes to wake, wash and dress a dementia resident. That is providing that the resident is agreeable, aware and in good spirits. The health care workers start waking residents up at 7:00 am. People with dementia sometimes get aggressive and it's near impossible to wash or dress them if they don't want to. They are like toddlers but in adult bodies and one person can't do it alone. People with dementia are confused and scared and don't remember faces and don't want someone that they view as a stranger touching them or helping them. Dementia patients are often very weak and feeble and can't help in any way. Needless to say, by noon some of the residents are having breakfast while others are getting lunch.
Most people with dementia either require to be fed or they are a choking risk and must be watched. Some will put too much food into their mouths because they have lost the ability to eat normally. Others won't eat and need encouragement and others might pocket the food in their mouths and could aspirate on it later and cause aspiration pneumonia. Again, there are 26 residents and 2 workers at breakfast, lunch and dinner. Any family or volunteer that comes during meal times to assist their loved one is so greatly appreciated. Some of residents that do require feeding are unfortunately getting cold food or have fallen asleep by the time a worker is able to get to them and they won't wake up. I know from experience that it takes a minimal of 30 minutes to feed a person who requires meal assistance.
In addition, most people with dementia are incontinent and require toileting. An adult diaper is changed in the same way that a babies diaper is. They are laid down, the dirty diaper is removed, they are cleaned, a fresh diaper is put on and they are redressed. With a baby it is actually quite easy, but not so easy with an adult. It is time consuming and often requires two workers and a mechanical lift to get the resident safely from their chair, to the bed and back again. Many dementia patients do use the toilet but they still require assistance and often it requires two workers to get them safely to, on and back from the toilet and change the adult pull-up if needed.
Then, again with their infinite wisdom the government has assured, under an act no less, that all residents of long-term care facilities will receive two assisted bathes or showers per week. To accommodate this there is a floater. The floater is assigned to do all the bathing or showering AND help with meals, toileting, lifting, portering AND covers breaks. There is one floater who works an 8 hour day/7 days a week. That is 56 hours and there are 78 residents that require bathing and as they are to get two bathes or showers a week, that is 156 bathes and showers. I take hour long bathes on a regular basis and even in a rush, I'll take a 20 minute shower and that's just my wet time and not including getting naked, towelling dry and getting dressed again. It takes close to an hour to properly bathe or shower a person with dementia. Again, not enough hours in the day or days in the week.
Forrest Gump said it best "Stupid is as stupid does". The new funding model is just about as stupid as stupid can get. I always took that line to mean that your character is defined by your actions, so our government representatives have very questionable characters. I am not impressed, in fact I am pissed off, really fucking pissed off. Those that know me, know I must be pissed off because I used the f-bomb. And I am really fucking pissed off. I'm pissed off because our seniors deserve better. I'm pissed off because a simple bladder infection can mean the end for a dementia patient and because they no longer can get toileted or changed regularly they are going to get infections. I'm pissed off because my mom needs assistance to get to the toilet and if she can't get a worker to help her she will go on her own and she might fall and break a hip or get a concussion, or something. I'm pissed off because our seniors might choke on a boiled egg. I'm pissed off because sometimes all a dementia patient needs is someone to hold their hand and no one has the time to hold their hand anymore. I'm pissed off because my mom has dementia. I'm pissed off because my dad is a senior. I'm pissed off because I too will be a senior someday. I'm really pissed off because right now, in some ER in the city, some bimbo is getting top notch medical care because she has a little infection from a botched manicure and my mom is anxiously awaiting for a worker to help her get dressed and into bed because she's tired. I'm pissed off because my mom has paid more taxes in her life time then the bimbo with a bad hang nail at the Foothills emergency room right now. Yep, I'm just pissed off.
That's why we organized the rally against cutbacks. I hope that you reading this will do the same where ever you live. The pay for performance funding system is prevalent in the US, the UK and Europe. More and more countries are moving towards this model of health care funding. That means more and more seniors will not get the quality of care that they not only deserve but that they earned. We have to do something and if we don't then we are stupider than the politicians. I'm not stupid, my mother didn't raise a fool.
The new model will be beneficial to some areas of health care in this province. It has the potential to speed up treatment time in hospital wait rooms and decrease surgery wait times and even simple procedures like ultra sound. It provides incentives for health care providers to ensure quality care. Pay for performance is another name for this payment model as it rewards physicians, hospitals, medical groups, and other health care providers for meeting certain performance measures for quality and efficiency. The quality and efficiency are rated on turn over and turn over times. The idea is that doctors and health service providers will see more patients because the more they see and the more they treat than more funding is available to them.
This funding model works well for long-term facilities that operate to rehabilitate an individual. 70% of the long-term facilities in Alberta are for the care of our senior citizens. Roughly 40,000 of those seniors have dementia. Dementia is a progressive disease, with no cure. Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living and lasts more than 6 months. Dementia is a terminal illness. Allison Redford, our premiere, knows what dementia is. Ron Casey, our local MLA, knows what dementia is. Fred Horne, the minister of health in Alberta, surely must know what dementia is and I'm sure, George VanderBurg, the associate minister for seniors, knows what dementia is. Yet, I have to wonder if they do, because they have applied this new funding model to long care facilities across the province knowing that 70% of those facilities are for seniors and knowing that 40,000 tax-paying Albertans have some form of dementia. Long-term care facilities and especially those that cater to seniors with dementia, don't have turn over, so the funding that they have been receiving in the past is now gone and they can't possibly qualify for additional funding with the new model. The name long-term care says it all. Long-term is self explanatory it means a patient is at the facility for a long term.
I have sent emails to all of those involved in the changes to the funding model. They have a standard answer written by the communications officer. It states 'the service provider at the facility where your mother resides, was made aware of the forthcoming changes in 2009. They have had 3 years in which to adjust their budgeting, costing and expense requirements accordingly. Therefore your concerns should be addressed to them'. Passing the buck, the one thing all politicians are good at. It isn't the service providers fault that the government is applying such a funding model to facilities that can't possibly rehabilitate those that reside there.
To manage the loss in funding, the society that runs my mom's facility did lay-offs from the top to the bottom. The loss of an executive position has no relevance in the care of my mother but the loss of a nurse or an LPN or a health care worker certainly does and everyone has noticed the difference. The staff that still have jobs are already tired and burning out. There are two workers and one nurse on a wing with 26 residents. The nurse is usually very busy giving medications and checking everything from minor to major complaints. In addition, the government, in their infinite wisdom now requires a tracking system for each individual patient that must be recorded daily and then input into a government database. It can take almost an hour to record and input the data required for 1 PATIENT, yes for 1 patient. The nurses work 8 hour shifts, there are 24 hours in a day there are 26 patients so everyday they are already behind. Then they fall further behind because there is only 1 nurse on the midnight shift for 3 wings that have 78 long-term care patients and she must input every report that hasn't been entered and make adjustments if there is any incident that happens in any of the three wings overnight. If you think that people with dementia actually sleep at night then you are wrong. The reports are sent to the government every two weeks and if any report is late or missing then there is no money given to the facility for that period. If a computer glitches up and the reports are not submitted then there is no money given to the facility for that period.. If a resident is rehabilitated and moves out of the facility during that period, then the government does give money to the facility and even more money. But in a 'dementia' wing, the only way out is by death and death doesn't meet the funding criteria so if a resident dies during that reporting period, then no money is given to the facility.
The nurses are busy but the government expects them to properly adhere to the medication requirements in a timely manner and do the residents reports and help with the basic day to day care of the facility residents. They don't have the time so the onus for the basic care of course falls on the tired shoulders of the health care workers. It takes anywhere from 20 to 45 minutes to wake, wash and dress a dementia resident. That is providing that the resident is agreeable, aware and in good spirits. The health care workers start waking residents up at 7:00 am. People with dementia sometimes get aggressive and it's near impossible to wash or dress them if they don't want to. They are like toddlers but in adult bodies and one person can't do it alone. People with dementia are confused and scared and don't remember faces and don't want someone that they view as a stranger touching them or helping them. Dementia patients are often very weak and feeble and can't help in any way. Needless to say, by noon some of the residents are having breakfast while others are getting lunch.
Most people with dementia either require to be fed or they are a choking risk and must be watched. Some will put too much food into their mouths because they have lost the ability to eat normally. Others won't eat and need encouragement and others might pocket the food in their mouths and could aspirate on it later and cause aspiration pneumonia. Again, there are 26 residents and 2 workers at breakfast, lunch and dinner. Any family or volunteer that comes during meal times to assist their loved one is so greatly appreciated. Some of residents that do require feeding are unfortunately getting cold food or have fallen asleep by the time a worker is able to get to them and they won't wake up. I know from experience that it takes a minimal of 30 minutes to feed a person who requires meal assistance.
In addition, most people with dementia are incontinent and require toileting. An adult diaper is changed in the same way that a babies diaper is. They are laid down, the dirty diaper is removed, they are cleaned, a fresh diaper is put on and they are redressed. With a baby it is actually quite easy, but not so easy with an adult. It is time consuming and often requires two workers and a mechanical lift to get the resident safely from their chair, to the bed and back again. Many dementia patients do use the toilet but they still require assistance and often it requires two workers to get them safely to, on and back from the toilet and change the adult pull-up if needed.
Then, again with their infinite wisdom the government has assured, under an act no less, that all residents of long-term care facilities will receive two assisted bathes or showers per week. To accommodate this there is a floater. The floater is assigned to do all the bathing or showering AND help with meals, toileting, lifting, portering AND covers breaks. There is one floater who works an 8 hour day/7 days a week. That is 56 hours and there are 78 residents that require bathing and as they are to get two bathes or showers a week, that is 156 bathes and showers. I take hour long bathes on a regular basis and even in a rush, I'll take a 20 minute shower and that's just my wet time and not including getting naked, towelling dry and getting dressed again. It takes close to an hour to properly bathe or shower a person with dementia. Again, not enough hours in the day or days in the week.
Forrest Gump said it best "Stupid is as stupid does". The new funding model is just about as stupid as stupid can get. I always took that line to mean that your character is defined by your actions, so our government representatives have very questionable characters. I am not impressed, in fact I am pissed off, really fucking pissed off. Those that know me, know I must be pissed off because I used the f-bomb. And I am really fucking pissed off. I'm pissed off because our seniors deserve better. I'm pissed off because a simple bladder infection can mean the end for a dementia patient and because they no longer can get toileted or changed regularly they are going to get infections. I'm pissed off because my mom needs assistance to get to the toilet and if she can't get a worker to help her she will go on her own and she might fall and break a hip or get a concussion, or something. I'm pissed off because our seniors might choke on a boiled egg. I'm pissed off because sometimes all a dementia patient needs is someone to hold their hand and no one has the time to hold their hand anymore. I'm pissed off because my mom has dementia. I'm pissed off because my dad is a senior. I'm pissed off because I too will be a senior someday. I'm really pissed off because right now, in some ER in the city, some bimbo is getting top notch medical care because she has a little infection from a botched manicure and my mom is anxiously awaiting for a worker to help her get dressed and into bed because she's tired. I'm pissed off because my mom has paid more taxes in her life time then the bimbo with a bad hang nail at the Foothills emergency room right now. Yep, I'm just pissed off.
That's why we organized the rally against cutbacks. I hope that you reading this will do the same where ever you live. The pay for performance funding system is prevalent in the US, the UK and Europe. More and more countries are moving towards this model of health care funding. That means more and more seniors will not get the quality of care that they not only deserve but that they earned. We have to do something and if we don't then we are stupider than the politicians. I'm not stupid, my mother didn't raise a fool.
Sunday 21 April 2013
The Dementia Diary: Care givers care for each other
The Dementia Diary: Care givers care for each other: My dad and I aren't the only caregivers that go daily or many times a week for our loved one. There are two wives of residents on mom&#...
Care givers care for each other
My dad and I aren't the only caregivers that go daily or many times a week for our loved one. There are two wives of residents on mom's wing that are there everyday. There are two sisters that come several times a week to care for not one parent but both parents. There are sons, daughters and siblings that try to get to the home as often as they can. I have the pleasure of getting to know these people and other caregivers through a support group that I belong too. The similarities between us are many. Of course our loved ones all have dementia. We compare histories, we compare symptoms, we share ideas and solutions to the similar problems that arise in our loved ones. Mostly, we share emotions and feelings and that is where I find the most similarities.
Often we will chat and reminisce about our loved one before the dementia. We talk about what they were and they accomplished. We share funny stories, family histories and even open the doors for a skeleton or two in the closet to come out. I love these conversations because we laugh and smile and for a few moments we are able to forget the present situation and we're feeling happy. It also allows me to get to know the resident, albeit vicariously. It gives me a sense of who they were and overtime they begin to feel like good friends that I have known a life time. It gives us a sense of community and fellowship and security because they know when they aren't there I'm looking out for their loved one as well as mom and I know when I'm not there that they are looking out for their loved one and my mom too.
There are moments in our lives when the frustration we feel will bring us to tears. This we share too. In Lewy-body dementia the levels of cognisance fluctuate often, even throughout the day. In the early afternoon mom can be there and understanding the situation but by the late afternoon she is paranoid and not understanding and thinking that dad and I have done something terrible. The frustration comes when I try to reason with mom, still hoping she will understand. I am learning not to bother trying to reason with a dementia patient and instead I sit silently listening to the accusations and all the while my insides are churning and I bite my lips. One resident won't eat anything that his care giver makes for him anymore thinking it has been poisoned and it's the poison that makes him forget. Other caregivers are frustrated because it only weeks ago that their loved one could still walk with a walker and now is using a wheelchair almost all of the time or they won't eat now but weeks ago were eating normally. While others are frustrated with themselves because they wish they could do more for their loved one and others but their personal lives and other responsibilities simply don't allow for it.
Guilty feelings are also shared. Many of us had an inkling that our loved one may be suffering from dementia but we all shoved those thoughts away instead of listening to what we knew. Some years ago I found an article on dementia symptoms and I sent to my father, my aunt and my brother David. My father read it and concluded that the doctors would know if it was dementia, putting all his faith in a medical system where 90% of the doctors know nothing about dementia. My aunt read it and commented that it was interesting reading and very possible. My brother David said he read it but I don't think he did. I just left it at that because nobody ever listens to me anyways, they hear me, but they don't listen. Other care givers had similar experiences. They tried to talk to other family members and discuss the possibility that it might be dementia but they too were shot down. We all wish we had pursued our hunches and pushed for more evaluations and testing. It's not that it would have changed the outcomes but perhaps it would have changed the present situations that we are all in.
There are many reasons why we feel guilt. One of care givers honestly wishes her loved one would pass away. It's guilt that they feel for saying it out loud and wishing and praying for it. Yet, I understand those wishes so well. Many times I prayed for God or the universe or who or whatever to either end mom's suffering or make her better. Of course the latter happened but my prayers weren't on behalf of my mother, they were for me. It's so hard and painful to see a person you love suffer in any way. There were days when my own pain was so overwhelming that I felt I couldn't bear it any longer and I would fall to my knees and pray for God to take mom to end her suffering but also to end mine. Unless you experience your loved one, unable to really talk or think or walk or enjoy life or living you don't know the feelings of helplessness a caregiver experiences. If they had a headache you could get them an aspirin. If they were hungry you could get them food. If they were thirsty, you could help them with a glass of water. But when a loved one, just sits there staring at a window or a wall, unable to say what they need and the care giver is unable to really help them, well your heart is constantly breaking and you feel absolutely useless and truly helpless.
Anger is another very common feeling we share. We are angry at the system that makes cut backs to extended health care and workers that are needed are getting laid off and us care givers are given no choice but to pick up the slack and fill that void. We get angry at our loved one that we are caring for because we always remember who they were and that they did have the capacity to reason, feel emotion, talk, walk, eat and go to the bathroom and often I feel like screaming out "Jesus Christ Mother, you know how to do this !!" but I don't. Then I get angry at myself for feeling angry at my mom.
Anger often turns to resent. Sometimes I feel resent towards mom and my dad. I resent her for having dementia, I resent dementia, I resent dad for really no reason, I resent my brothers for not being here. In fact I spent an entire month burning up with resent towards my brother when he went for a holiday to Australia. I resent them more when mom gets in a mood and blames dad and I for the situation and says that Doug and David will come and take care her. Again I just want to scream at her "Where are your fucking precious boys now mother!!" but I don't. I see some of this resent in all of us care givers. Wives and husbands are resentful towards the children they raised with their spouse and who don't or can't help out. Siblings that care give for a parent are resentful to their brothers and sisters who don't. We are all slightly resentful towards those who don't understand why we do what we do or those close to us who stay in denial and believe that a diagnosis was wrong simply because they see the loved on a good day as opposed to a bad day. Dementia creates resent in many forms for many people.
Sadly and often this hurly-whirly gamut of emotions causes care givers to break. We are constantly advised to be sure to take time for ourselves and to do some self-care. I laugh at that. Every time I go away for a couple of days, I am overcome with worry and I phone and check up on mom. Do I really enjoy my self-care, no, I feel guilt, worry and fear. My self-care now comes in form of a pill called Prozac as it does for many care givers.
So we care givers stick together. We hug each other often and tightly. We trade off the shoulder to cry on. We talk to each other. We laugh together, we share together and we mourn together. I have met some incredible and wonderful people during this time and I am so very glad they were put on my path because each and every one of them has helped me in some way. I care for each and every one of them because that is another role that care givers have. Care givers must care for each other too.
Often we will chat and reminisce about our loved one before the dementia. We talk about what they were and they accomplished. We share funny stories, family histories and even open the doors for a skeleton or two in the closet to come out. I love these conversations because we laugh and smile and for a few moments we are able to forget the present situation and we're feeling happy. It also allows me to get to know the resident, albeit vicariously. It gives me a sense of who they were and overtime they begin to feel like good friends that I have known a life time. It gives us a sense of community and fellowship and security because they know when they aren't there I'm looking out for their loved one as well as mom and I know when I'm not there that they are looking out for their loved one and my mom too.
There are moments in our lives when the frustration we feel will bring us to tears. This we share too. In Lewy-body dementia the levels of cognisance fluctuate often, even throughout the day. In the early afternoon mom can be there and understanding the situation but by the late afternoon she is paranoid and not understanding and thinking that dad and I have done something terrible. The frustration comes when I try to reason with mom, still hoping she will understand. I am learning not to bother trying to reason with a dementia patient and instead I sit silently listening to the accusations and all the while my insides are churning and I bite my lips. One resident won't eat anything that his care giver makes for him anymore thinking it has been poisoned and it's the poison that makes him forget. Other caregivers are frustrated because it only weeks ago that their loved one could still walk with a walker and now is using a wheelchair almost all of the time or they won't eat now but weeks ago were eating normally. While others are frustrated with themselves because they wish they could do more for their loved one and others but their personal lives and other responsibilities simply don't allow for it.
Guilty feelings are also shared. Many of us had an inkling that our loved one may be suffering from dementia but we all shoved those thoughts away instead of listening to what we knew. Some years ago I found an article on dementia symptoms and I sent to my father, my aunt and my brother David. My father read it and concluded that the doctors would know if it was dementia, putting all his faith in a medical system where 90% of the doctors know nothing about dementia. My aunt read it and commented that it was interesting reading and very possible. My brother David said he read it but I don't think he did. I just left it at that because nobody ever listens to me anyways, they hear me, but they don't listen. Other care givers had similar experiences. They tried to talk to other family members and discuss the possibility that it might be dementia but they too were shot down. We all wish we had pursued our hunches and pushed for more evaluations and testing. It's not that it would have changed the outcomes but perhaps it would have changed the present situations that we are all in.
There are many reasons why we feel guilt. One of care givers honestly wishes her loved one would pass away. It's guilt that they feel for saying it out loud and wishing and praying for it. Yet, I understand those wishes so well. Many times I prayed for God or the universe or who or whatever to either end mom's suffering or make her better. Of course the latter happened but my prayers weren't on behalf of my mother, they were for me. It's so hard and painful to see a person you love suffer in any way. There were days when my own pain was so overwhelming that I felt I couldn't bear it any longer and I would fall to my knees and pray for God to take mom to end her suffering but also to end mine. Unless you experience your loved one, unable to really talk or think or walk or enjoy life or living you don't know the feelings of helplessness a caregiver experiences. If they had a headache you could get them an aspirin. If they were hungry you could get them food. If they were thirsty, you could help them with a glass of water. But when a loved one, just sits there staring at a window or a wall, unable to say what they need and the care giver is unable to really help them, well your heart is constantly breaking and you feel absolutely useless and truly helpless.
Anger is another very common feeling we share. We are angry at the system that makes cut backs to extended health care and workers that are needed are getting laid off and us care givers are given no choice but to pick up the slack and fill that void. We get angry at our loved one that we are caring for because we always remember who they were and that they did have the capacity to reason, feel emotion, talk, walk, eat and go to the bathroom and often I feel like screaming out "Jesus Christ Mother, you know how to do this !!" but I don't. Then I get angry at myself for feeling angry at my mom.
Anger often turns to resent. Sometimes I feel resent towards mom and my dad. I resent her for having dementia, I resent dementia, I resent dad for really no reason, I resent my brothers for not being here. In fact I spent an entire month burning up with resent towards my brother when he went for a holiday to Australia. I resent them more when mom gets in a mood and blames dad and I for the situation and says that Doug and David will come and take care her. Again I just want to scream at her "Where are your fucking precious boys now mother!!" but I don't. I see some of this resent in all of us care givers. Wives and husbands are resentful towards the children they raised with their spouse and who don't or can't help out. Siblings that care give for a parent are resentful to their brothers and sisters who don't. We are all slightly resentful towards those who don't understand why we do what we do or those close to us who stay in denial and believe that a diagnosis was wrong simply because they see the loved on a good day as opposed to a bad day. Dementia creates resent in many forms for many people.
Sadly and often this hurly-whirly gamut of emotions causes care givers to break. We are constantly advised to be sure to take time for ourselves and to do some self-care. I laugh at that. Every time I go away for a couple of days, I am overcome with worry and I phone and check up on mom. Do I really enjoy my self-care, no, I feel guilt, worry and fear. My self-care now comes in form of a pill called Prozac as it does for many care givers.
So we care givers stick together. We hug each other often and tightly. We trade off the shoulder to cry on. We talk to each other. We laugh together, we share together and we mourn together. I have met some incredible and wonderful people during this time and I am so very glad they were put on my path because each and every one of them has helped me in some way. I care for each and every one of them because that is another role that care givers have. Care givers must care for each other too.
Friday 12 April 2013
The Dementia Diary: When the end is near
The Dementia Diary: When the end is near: All of us have a life cycle and we all know that it ends with death. In an extended care facility death is always present. It is something...
When the end is near
All of us have a life cycle and we all know that it ends with death. In an extended care facility death is always present. It is something I have become accustomed to. Since my arrival, in late summer of 2012, eight residents on mom's wing have passed away. The first resident I didn't know very well but I still found it shocking. But today, I'm no longer shocked rather I see it as a blessing because I know, the suffering is over for everyone. The resident is no longer in pain and the friends and family can finally find peace and relief.
Over the past months I have observed things and I see similarities. When a resident is taken from the facility it means that they are very sick and their personal directives indicate that extraordinary measures to maintain life are to be taken. So their room sits empty. There is no point in asking any of the workers how they are doing because they either don't know and if they do, they are not allowed to divulge such information without family consent. So, workers, volunteers and residents watch and wait. We watch the room and we wait for the name to come off the door and NEW resident move in. Then we wait for an obituary on the memorial wall. It's sad really as many of the healthier residents knew them for quite some time and even before the dementia got a hold of them, yet they aren't given the chance to say goodbye before they pass. I find it sad too because I see them everyday and I develop a bond with all of them at some level. I know their names and I most times I get to know the family or the caregiver and I am fortunate to get to know about the person they were.
There was a resident when I first arrived. She was old and she was sick. She never spoke much and if she did, often it made no sense. Yet when I would bring her a juice, she would always say thank-you. One day I set another resident at her table. She motioned for me to come close and I did.
"Get that f*****g bitch away from my table." she said. I was shocked by what she said and also by the fact that she said it so clearly and concisely.
This resident loved small stuffed animals and when I found some of my daughters old 'Beanie Babies' I picked one out, a squirrel, and I gave it to her. She loved it and for many months the squirrel was by her side. When I saw the paramedics take her from her room, I was happy to see that the squirrel was with her on the gurney as they took her away. That was the last time I saw her and I was saddened by the news of her death only days later. Yet, at the same the time, relieved.
In other situations the residents will have a personal directive that indicates they want palliative care only, which is provided at the facility so the resident is in a quieter, less intrusive environment than a hospital. Family members and friends will come together. A cart of food and beverages will be outside the room and staff will keep it stocked with anything the family needs. Pastoral workers will come and go. Sometimes for days, tired family members will take shifts, never leaving the side of their loved one. Until one day the cart is gone and then we know that the person has passed away. Family will gather their belongings and in what seems an instance, any memory of them is gone. Again, it is saddening but at the same time very heart-warming knowing they did not die alone and that they were deeply loved.
Finally, dead comes very unexpected at times. On one occasion as I was helping my mother with her lunch, I watched the undertaker come and go towards mom's wing. I quickly looked around to see who wasn't there. Two of the 26 residents weren't at lunch that day and I could not resist the need to go and see. I caught up to the undertaker and he went towards the nurses station. I stopped at the open doorway of one of the residents who wasn't at lunch and I saw her, peacefully forever asleep on her bed. Just the night before her and I were joking how jiggling the Jell-o was as it literally bounced out of the bowl. We both laughed and now there she was, in front me, gone.
Today when I went in I saw the daughter of a resident in the hall. Her father had been ill but seemed to be on the mend. I asked her how her dad was today and to my surprise she told me he passed away in his sleep, last night. Again, I was shocked as only two days ago I patted his shoulder and he said, "Hello my raven haired beauty" because he could never remember my name.
There was an eerie quiet on the ward, just like when the other resident had passed away in her sleep. I don't know if the calm is death lingering in the air or if it is the peaceful spirit of the person that has passed. It is a pleasant serenity that I can't seem to describe as it is almost surreal. But I do know that when a resident passes in their sleep they leave a presence and I don't fear death anymore. I hope that when the end in near for mom that she simply goes to sleep. I don't welcome the day but I know the day will come.
Over the past months I have observed things and I see similarities. When a resident is taken from the facility it means that they are very sick and their personal directives indicate that extraordinary measures to maintain life are to be taken. So their room sits empty. There is no point in asking any of the workers how they are doing because they either don't know and if they do, they are not allowed to divulge such information without family consent. So, workers, volunteers and residents watch and wait. We watch the room and we wait for the name to come off the door and NEW resident move in. Then we wait for an obituary on the memorial wall. It's sad really as many of the healthier residents knew them for quite some time and even before the dementia got a hold of them, yet they aren't given the chance to say goodbye before they pass. I find it sad too because I see them everyday and I develop a bond with all of them at some level. I know their names and I most times I get to know the family or the caregiver and I am fortunate to get to know about the person they were.
There was a resident when I first arrived. She was old and she was sick. She never spoke much and if she did, often it made no sense. Yet when I would bring her a juice, she would always say thank-you. One day I set another resident at her table. She motioned for me to come close and I did.
"Get that f*****g bitch away from my table." she said. I was shocked by what she said and also by the fact that she said it so clearly and concisely.
This resident loved small stuffed animals and when I found some of my daughters old 'Beanie Babies' I picked one out, a squirrel, and I gave it to her. She loved it and for many months the squirrel was by her side. When I saw the paramedics take her from her room, I was happy to see that the squirrel was with her on the gurney as they took her away. That was the last time I saw her and I was saddened by the news of her death only days later. Yet, at the same the time, relieved.
In other situations the residents will have a personal directive that indicates they want palliative care only, which is provided at the facility so the resident is in a quieter, less intrusive environment than a hospital. Family members and friends will come together. A cart of food and beverages will be outside the room and staff will keep it stocked with anything the family needs. Pastoral workers will come and go. Sometimes for days, tired family members will take shifts, never leaving the side of their loved one. Until one day the cart is gone and then we know that the person has passed away. Family will gather their belongings and in what seems an instance, any memory of them is gone. Again, it is saddening but at the same time very heart-warming knowing they did not die alone and that they were deeply loved.
Finally, dead comes very unexpected at times. On one occasion as I was helping my mother with her lunch, I watched the undertaker come and go towards mom's wing. I quickly looked around to see who wasn't there. Two of the 26 residents weren't at lunch that day and I could not resist the need to go and see. I caught up to the undertaker and he went towards the nurses station. I stopped at the open doorway of one of the residents who wasn't at lunch and I saw her, peacefully forever asleep on her bed. Just the night before her and I were joking how jiggling the Jell-o was as it literally bounced out of the bowl. We both laughed and now there she was, in front me, gone.
Today when I went in I saw the daughter of a resident in the hall. Her father had been ill but seemed to be on the mend. I asked her how her dad was today and to my surprise she told me he passed away in his sleep, last night. Again, I was shocked as only two days ago I patted his shoulder and he said, "Hello my raven haired beauty" because he could never remember my name.
There was an eerie quiet on the ward, just like when the other resident had passed away in her sleep. I don't know if the calm is death lingering in the air or if it is the peaceful spirit of the person that has passed. It is a pleasant serenity that I can't seem to describe as it is almost surreal. But I do know that when a resident passes in their sleep they leave a presence and I don't fear death anymore. I hope that when the end in near for mom that she simply goes to sleep. I don't welcome the day but I know the day will come.
Sunday 7 April 2013
The Dementia Diary: The king is dead.
The Dementia Diary: The king is dead.: I remember Ralph Klein from my childhood. With no cable TV then, CFCN was one of the three channels that we got. Our TV was limited and in...
The king is dead.
I remember Ralph Klein from my childhood. With no cable TV then, CFCN was one of the three channels that we got. Our TV was limited and in those days we never watched a lot anyways but mom always watched the news and I would often watch it with her. Ralph Klein was a top-notch reporter who seemed to get the stories that no one, including CBC, the Calgary Herald or the Calgary Albertan (now the Calgary Sun), could dig up. I always loved some of the stories he did, like when he paid for a homeless mans reservation at the Palliser that included a day of golf at a very prestigious private golf club. The reaction from club members, all caught on film, when they saw a homeless man teeing off was priceless. His intention was not to bring mockery to the plight of the homeless, rather it was to bring awareness to the plight of the homeless. In all honesty, when he had to leave CFCN to run in the Calgary mayoral campaign, I fully expected him to be back on the news when he lost, but he didn't lose.
It's my opinion that Calgary would be what it is today had it not been for Ralph Klein. Of course, his tireless effort to bid for the 1988 Olympics and win helped but it goes beyond that. He expanded the LRT to the northeast of Calgary, forever changing the geography of the city. He built a city hall that he felt was worthy of the city it represented and he made being a Calgarian something to be proud of, not something to hide. At the Olympics he mistook the King of Norway as his driver. When the King revealed to Klein who he was, he apologized and then bummed a cigarette. He never hid his Albertan ways.
I always followed his political career closely, whether I was in BC or not. When he jumped into provincial politics I considered moving back to campaign for him. At the time I was a die hard Liberal so it conflicted with my own party following and being the rep for the Young Liberals at SFU, I really couldn't do it. Regardless, I was happy when he won and I will admit, that years later when I returned to Alberta, I did vote for him even though I was still a die hard Liberal. I loved it in 2003, when Mad Cow disease was found in Albertan cattle Klein said, "I guess any self-respecting rancher would have shot, shovelled and shut up, but he didn't do that," referring to the farmer in northern Alberta whose animal was found to have the disease when it was taken to a slaughterhouse. He was honest to a fault.
I saw Klein speak many times. The last time was in 2006 in Lethbridge. I noticed something then. Ralph Klein was known for his sharp tongue and quick wit. He shot from the hip and anytime prior to that day when I saw him live or on TV, whether making an appearance or a speech, he never used cue cards. On this day, his speech was written on a piece of paper that he read from, not deviating his eyes once from the paper hidden on the podium. Later, during a question and answer period he forget the questions that were asked to him only moments earlier. At the time I thought, wow, he must be really hungover. Only a week earlier to that appearance he had thrown a Liberal health policy book at a page in the provincial legislature. He was mad is what I thought. Months later when he made his famous statement about Belinda Stronach and her defection to the Liberals, "I don't think she ever did have a Conservative bone in her body.. well, except for one." (referring to Peter MacKay, her former boyfriend, who is a Conservative) I laughed and laughed because it was funny. A few years later it was revealed that he was suffering from Pick's disease and all those behaviours now made sense. Dementia takes years eat away the brain and early symptoms are so subtle, that people rarely notice and no one ever thinks that it might be dementia.
Pick's disease affects the frontal lobe and temporal lobes of the brain. Early symptoms include, behavioural changes and impaired regulation of social conduct (e.g. breaches of etiquette, tactlessness, dis-inhibition). Hell, some would say that Klein was suffering from it for 20 years prior to the diagnosis, and that is very possible. In later stages, people lose the ability to speak and read and write. They will pace and pace compulsively and others with put anything that they see in front of them into their mouths, kleenex, keys or packets of sugar in a bowl. It's very sad to watch and I have much sympathy for what his family and friends must have endured over the past few years. It's a true blessing that he went quickly. But what I can't imagine is Ralph Klein unable to speak or pacing aimlessly down the hallways of the extended care he was put into in 2011. I can't picture him thin or with the lost look in his eyes that all the dementia patients get. Yet, I hope that his family will eventually release some photos of him in his last years, not to see his gradual decline, but in hopes that it will bring home the fact that dementia is a terminal illness.
I see so many dementia patients everyday. All of them had lives and minds. They all had minds, some greater than others but everyone of them could talk and read and write and walk and eat and live, really live. I believe that somewhere in their addled minds there still is a person with free will and I believe that many dementia patients WILL themselves to die because I doubt there is end stage dementia patient out there who wants to live without the abilities to exist as nothing more than a shell of the person they once were. The king is dead and it's dementia that he died from.
To some, death is punishment and to others it's a gift. Here are some names of known people who died from dementia and dementia related illnesses and for them, it was a gift.
Pierre Michelot Barry Goldwater
Rosa Parks Sparky Anderson
Colleen Howe (Gordie's wife) Ronald Reagan
Charles Bronson Rita Hayworth
Norman Rockwell Charlton Heston
E.B. White Norman Kaye
Otto Preminger Jimmy Stewart
The list could go on and on and on.
It's my opinion that Calgary would be what it is today had it not been for Ralph Klein. Of course, his tireless effort to bid for the 1988 Olympics and win helped but it goes beyond that. He expanded the LRT to the northeast of Calgary, forever changing the geography of the city. He built a city hall that he felt was worthy of the city it represented and he made being a Calgarian something to be proud of, not something to hide. At the Olympics he mistook the King of Norway as his driver. When the King revealed to Klein who he was, he apologized and then bummed a cigarette. He never hid his Albertan ways.
I always followed his political career closely, whether I was in BC or not. When he jumped into provincial politics I considered moving back to campaign for him. At the time I was a die hard Liberal so it conflicted with my own party following and being the rep for the Young Liberals at SFU, I really couldn't do it. Regardless, I was happy when he won and I will admit, that years later when I returned to Alberta, I did vote for him even though I was still a die hard Liberal. I loved it in 2003, when Mad Cow disease was found in Albertan cattle Klein said, "I guess any self-respecting rancher would have shot, shovelled and shut up, but he didn't do that," referring to the farmer in northern Alberta whose animal was found to have the disease when it was taken to a slaughterhouse. He was honest to a fault.
I saw Klein speak many times. The last time was in 2006 in Lethbridge. I noticed something then. Ralph Klein was known for his sharp tongue and quick wit. He shot from the hip and anytime prior to that day when I saw him live or on TV, whether making an appearance or a speech, he never used cue cards. On this day, his speech was written on a piece of paper that he read from, not deviating his eyes once from the paper hidden on the podium. Later, during a question and answer period he forget the questions that were asked to him only moments earlier. At the time I thought, wow, he must be really hungover. Only a week earlier to that appearance he had thrown a Liberal health policy book at a page in the provincial legislature. He was mad is what I thought. Months later when he made his famous statement about Belinda Stronach and her defection to the Liberals, "I don't think she ever did have a Conservative bone in her body.. well, except for one." (referring to Peter MacKay, her former boyfriend, who is a Conservative) I laughed and laughed because it was funny. A few years later it was revealed that he was suffering from Pick's disease and all those behaviours now made sense. Dementia takes years eat away the brain and early symptoms are so subtle, that people rarely notice and no one ever thinks that it might be dementia.
Pick's disease affects the frontal lobe and temporal lobes of the brain. Early symptoms include, behavioural changes and impaired regulation of social conduct (e.g. breaches of etiquette, tactlessness, dis-inhibition). Hell, some would say that Klein was suffering from it for 20 years prior to the diagnosis, and that is very possible. In later stages, people lose the ability to speak and read and write. They will pace and pace compulsively and others with put anything that they see in front of them into their mouths, kleenex, keys or packets of sugar in a bowl. It's very sad to watch and I have much sympathy for what his family and friends must have endured over the past few years. It's a true blessing that he went quickly. But what I can't imagine is Ralph Klein unable to speak or pacing aimlessly down the hallways of the extended care he was put into in 2011. I can't picture him thin or with the lost look in his eyes that all the dementia patients get. Yet, I hope that his family will eventually release some photos of him in his last years, not to see his gradual decline, but in hopes that it will bring home the fact that dementia is a terminal illness.
I see so many dementia patients everyday. All of them had lives and minds. They all had minds, some greater than others but everyone of them could talk and read and write and walk and eat and live, really live. I believe that somewhere in their addled minds there still is a person with free will and I believe that many dementia patients WILL themselves to die because I doubt there is end stage dementia patient out there who wants to live without the abilities to exist as nothing more than a shell of the person they once were. The king is dead and it's dementia that he died from.
To some, death is punishment and to others it's a gift. Here are some names of known people who died from dementia and dementia related illnesses and for them, it was a gift.
Pierre Michelot Barry Goldwater
Rosa Parks Sparky Anderson
Colleen Howe (Gordie's wife) Ronald Reagan
Charles Bronson Rita Hayworth
Norman Rockwell Charlton Heston
E.B. White Norman Kaye
Otto Preminger Jimmy Stewart
The list could go on and on and on.
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