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.
Tuesday 2 April 2013
The Dementia Diary: Filial Piety
The Dementia Diary: Filial Piety: In other cultures, care giving for the elderly is a natural occurrence. In many Chinese families, parents move in with their children when...
Filial Piety
In other cultures, care giving for the elderly is a natural occurrence. In many Chinese families, parents move in with their children when their children get married. The parents help raise their children’s’ children, and, when the parents themselves need care, their children are prepared to care for their parents until the end of their life. Many Asian countries and cultures, including the Philippines and Vietnam, also hold to these traditions. Japan even has a national holiday called Respect for the Aged Day and in East Asian countries, like India and Pakistan, the eldest son WILL take care of and provide for his parents.
In African history, families stayed together, no matter how big they grew. Families of more than 50 people started their own villages, with the eldest grandfather and grandmother leading the rest. This is also found in many tribes of South America, Australia. In the North American First Nations people, the tribes to this day, hold the utmost respect for their elders and do what they can to care and provide for them.
However, in the westernized world our seniors have become invisible. We herd our seniors into large, impersonal institutions where they are out of everyone's view. It's almost like they no longer exist and sadly for some, even a simple visit is considered a chore or an inconvenience but their own family. Now, let's add the recent Alberta government budget cuts that adds injury to the insult of how we treat our elderly.
On March 7th when the provincial government delivered the new budget they allotted 2.1 billion dollars, over the next three years, to hospitals, family clinics and long-term care facilities. 2.1 billion dollars seems like a lot of money and most Albertans seem pleased. Our population is growing and continues to grow and it will continue to do so over the next three years. People still get sick and still need to see doctors and specialists and in all honesty, it seems like we are getting sicker. The rates of cancer continue to rise as does heart disease and diabetes and they will continue to rise over the next three years. Our population also continues to grow older and they will continue to do so over the next three years. More seniors will develop Alzheimer's and dementia and many, many, many more will require long-term care over the next three years. Factor in inflation, cost of living and a few other economic factors then the 3% increase isn't an increase at all, it is actually a cut.
By the end of this week, a month after the budget was delivered, the cuts will be felt at the facility where my mother resides and the society that runs hers and five others in the province. At the end of this week 53 full-time positions and 17 part-time positions have been eliminated from mom's home and the five others. This is just one society. There are 192 long-term facilities across this province that care for our elderly and those facilities will be doing similar cuts. Now, my math isn't that great but statistically it means that instead of a ratio of one health care worker for every eight patients, the new ratio will be one health care worker for every 13 patients. With that ratio the word 'healthcare' is now an oxymoron. Our seniors in extended care across this province need more care, not less.
I hope that those of you who read this blog realize that the care of our elderly is a societal responsibility. There are only a few countries that get that concept and had adapted health care and seniors care accordingly. In a post on the Facebook page attached to this blog I mentioned the city of Bruges in Belgium where they have adapted policies that everyone adheres to that keep seniors, and especially those with dementia, safe and provided for. The video is called Dementia: Pioneering City of Bruges, look for it on line. In the Scandinavian countries, the seniors are encouraged to remain at home as long as they can. To allow this, doctors and nurses are on call 24 hours a day and do regular house calls to ensure the health and safety of their seniors and in some areas, even the dentists will do house calls. In addition, health care workers will come to cook, clean, do personal hygiene and spend time with the seniors still at home. They have adult day care centres, not just simple one day a week programs, rather entire adult day care centres with free transportation to and from the centre. When the time comes that a Scandinavian senior needs extended care, the facilities are mainly built with wide open spaces in the back, that are secure, but allow residents to walk and get fresh air and enjoy nature. Here's the kicker, most of the services are free and the extended health care facilities cost no more than 15% of the seniors pension.
Sweden, Denmark and Norway all seem like a senior's Utopia and as a caregiver to my mom, I wish we could move there. That of course is an impossible dream. But what I can do is ask the readers of this blog to do two things. First, volunteer. With all the cuts that are happening in Canada and other countries, volunteers are now needed more than ever. A couple hours a week of your life can make so much difference to a facility struggling to keep activities going and it can make so much more of a difference in the life of a senior. Without your grandparents and your parents, where would you be? Well, you wouldn't be here, so we owe them and should respect them for gifting us with those lives.
Secondly, send some emails the premiere and the MLA's of your area. Tell them that we need more funding for the care of our seniors, not less and that the candy-coated budget is bullshit. Here are the names, addresses, phone numbers and emails of some of the MLA's in this region.
Dr. David Swann, MLA Calgary-Mountain View
calgary.mountainview@assembly.ab.ca
Constituency Office: 102, 723 - 14 Street NW, Calgary, AB T2N 2A4
403-216-5445 (Calgary constituency office) 780-427-2292 (Legislature office)
Rob Anderson, MLA Airdrie
airdrie@assembly.ab.ca
Constituency Office: 209 Bowers Street, Airdrie, AB T4B 0R6
403-948-8741 (Airdrie constituency office) 1-888-948-8741 (Toll-free) 780-415-0975 (Legislature office)
Ron Casey, MLA Banff-Cochrane
banff.cochrane@assembly.ab.ca
Constituency Office: 109, 1205 Bow Valley Trail, Canmore, AB T1W 1P5
403-609-4509 (Canmore Constituency office) 1-866-760-8281 (Constituency office, toll-free) 780-415-8429 (Legislature office)
CONSIDERING I USED TO BABYSIT HIS GIRLS HE'D BETTER DAMN WELL DO SOMETHING!!!
Hon. Cal Dallas, MLA, Red Deer-South
reddeer.south@assembly.ab.ca
Constituency Office: 503, 4901 - 48 Street, Red Deer, AB T4N 6M4
403-340-3565 (Red Deer constituency office) 780-643-6225 (Legislature office)
Hon. Teresa Woo-Paw MLA, Calgary-Northern Hills
calgary.northernhills@assembly.ab.ca
Constituency Office: 103, 200 Country Hills Landing NW, Calgary, AB T3K 5P3
403-274-1931 (Calgary constituency office) 780-415-2363 (Legislature office)
Kerry Towle, MLA, Innisfail-Sylvan Lake
innisfail.sylvanlake@assembly.ab.ca
Constituency Office: #18, 4804 - 42 Avenue, Innisfail, AB T4G 1T4
403-227-1500 (Innisfail constituency office) 1-888-655-2535 (Toll-free) 780-427-1865 (Legislature office)
Associate Minister of Seniors, Hon. George VanderBurg
whitecourt.steanne@assembly.ab.ca
227 Legislature Building 10800 97 Avenue, Edmonton, AB T5K 2B6
780-415-9550 (Legislature office)
Just for good measure any of the international readers of this blog could also make a difference by contacting our provincial leader, and please do so. I want her to realize the gravity of the situation and the importance of the simple fact the dementia is not just forgetting where your keys are. It's a terminal illness.
Premier of Alberta Hon. Alison Redford
calgary.elbow@assembly.ab.ca
307 Legislature Building 10800 97 Avenue, Edmonton, AB T5K 2B6
780-427-2251 (Legislature office)
Confucius, the famous Chinese philosopher, championed that our elders deserve our complete and total respect. It's called filial piety and the wisdom in that is ancient.
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| One of the workers who is layed off, mom just loves her. |
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