Friday, 23 November 2012
The Dementia Diary: Teach your children well
The Dementia Diary: Teach your children well: I'm not the only caregiver who is a child of a resident. I might be the only one who goes everyday to feed my mom but there are other child...
Teach your children well
I'm not the only caregiver who is a child of a resident. I might be the only one who goes everyday to feed my mom but there are other children who regularly come to care for their parent. Two sisters share the responsibility and divide the visits between themselves. They come to care for both of their parents who are living in different areas of the facility. It's very touching really as they have a private support worker who also comes in every dinner hour and transports their mother over to their father's wing so that their parents can eat dinner together every night. Many residents have children that come every couple weeks or so and sadly, some residents have no family or children left to come and visit them.
The 'kids of care', as I call us, are often feeding our parent at the same table. Of course we chit chat about our lives but we also use that opportunity to compare notes about our parents and compare notes about the standards of care that our parents are receiving. One thing is very common between us, we all feel that the standard of care could be better and we also have a tendency to complain to management if we feel the need to. The administration staff know us all on a first name basis. It's not that the facility is lacking, in fact honestly, I couldn't ask for better. It's because they are our parents and we insist that they receive the highest quality of care, even more. Because of that we have a tendency to bitch about things that in the scheme of things, are trivial. We do it because that's what our parents did for us. My mother defended me, went to bat for me and always made sure that whatever need I had, was met. I am doing the same for her.
When my daughter was visiting last month I watched her care for her grandmother and it warmed my heart. While she was feeding mom, and a little bit shaky, I told that she needs the practice as she might be feeding me some day. Dylan looked at me and said "Mom, I won't put you in home".
I later thought about that statement and realized how many times I had said the same thing to my mom. Sometimes it was said in reassurance and other times it was said jokingly "No mom, I won't put you in a home because you'll probably out live us all". There was also times in anger where I said "Mom, smarten up, someday I'll be caring for you and I'll reserve a room at the home for you if you don't stop". I didn't know of the foreshadowing in my statement. The fact is that many people my age are facing this dilemma. They watch as the health of their parents deteriorates or they hear the diagnosis of dementia and they have to then stop joking about it and really think about it. Families with an ailing parent need to sit down and start making plans for the future care of their parents. From experience I can say that it's not as easy as you think and services aren't as accessible as they should be. You can't just phone an extended care facility and make a reservation. The wait times for admission are getting longer and longer and anyone whose future includes caring for an ailing parent needs to get a plan in place now. Failing to plan is planning to fail and we can't fail our parents.
Ryley asks about his grandma all the time. He recently asked if she was going to die. It's not something that you can candy coat for kids when they ask something like that so I was honest and I said "Eventually she will but eventually all of us will". He also asked if I'm going to get sick like grandma has. Again, it wasn't something I could candy coat so I was honest and said "I might Ryley, I really don't know but that is years and years in the future and you don't need to think about such things now." Ryley smiled and said "I know mom, but I want you know that you don't need to worry, I'll take of you just like you take care of grandma".
I hugged him closely and I choked back the tears. I am proud of myself and confident in the decision I made to come home. It helped me to teach my children well because my mom taught me well.
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The 'kids of care', as I call us, are often feeding our parent at the same table. Of course we chit chat about our lives but we also use that opportunity to compare notes about our parents and compare notes about the standards of care that our parents are receiving. One thing is very common between us, we all feel that the standard of care could be better and we also have a tendency to complain to management if we feel the need to. The administration staff know us all on a first name basis. It's not that the facility is lacking, in fact honestly, I couldn't ask for better. It's because they are our parents and we insist that they receive the highest quality of care, even more. Because of that we have a tendency to bitch about things that in the scheme of things, are trivial. We do it because that's what our parents did for us. My mother defended me, went to bat for me and always made sure that whatever need I had, was met. I am doing the same for her.
When my daughter was visiting last month I watched her care for her grandmother and it warmed my heart. While she was feeding mom, and a little bit shaky, I told that she needs the practice as she might be feeding me some day. Dylan looked at me and said "Mom, I won't put you in home".
I later thought about that statement and realized how many times I had said the same thing to my mom. Sometimes it was said in reassurance and other times it was said jokingly "No mom, I won't put you in a home because you'll probably out live us all". There was also times in anger where I said "Mom, smarten up, someday I'll be caring for you and I'll reserve a room at the home for you if you don't stop". I didn't know of the foreshadowing in my statement. The fact is that many people my age are facing this dilemma. They watch as the health of their parents deteriorates or they hear the diagnosis of dementia and they have to then stop joking about it and really think about it. Families with an ailing parent need to sit down and start making plans for the future care of their parents. From experience I can say that it's not as easy as you think and services aren't as accessible as they should be. You can't just phone an extended care facility and make a reservation. The wait times for admission are getting longer and longer and anyone whose future includes caring for an ailing parent needs to get a plan in place now. Failing to plan is planning to fail and we can't fail our parents.
Ryley asks about his grandma all the time. He recently asked if she was going to die. It's not something that you can candy coat for kids when they ask something like that so I was honest and I said "Eventually she will but eventually all of us will". He also asked if I'm going to get sick like grandma has. Again, it wasn't something I could candy coat so I was honest and said "I might Ryley, I really don't know but that is years and years in the future and you don't need to think about such things now." Ryley smiled and said "I know mom, but I want you know that you don't need to worry, I'll take of you just like you take care of grandma".
I hugged him closely and I choked back the tears. I am proud of myself and confident in the decision I made to come home. It helped me to teach my children well because my mom taught me well.
.JPG)
Monday, 19 November 2012
The Dementia Diary: A history lesson
The Dementia Diary: A history lesson: The word dementia is a Latin word meaning without mind. For centuries the word was used to describe madness or mental illnesses and even ...
A history lesson
The word dementia is a Latin word meaning without mind. For centuries the word was used to describe madness or mental illnesses and even mental handicaps. It makes me think that dementia, in the use that it is today, has in fact been around for a very long time. The simple fact that up until the 19th century, most people did not live to see 65, let alone 75 or 85, is probably the only reason why it wasn't as prevalent throughout history. Oddly, one form of dementia was very prevalent until the creation of Penicillin. That well known type of dementia was seen in royalty and commoners alike. Syphilitic dementia, caused by the untreated sexually transmitted disease, was very common and many famous people suffered from it. People like Christopher Columbus, Napoleon, Al Capone and my favourite George Washington, all suffered and eventually died from complications of Syphilitic dementia.
It's sad really because historically, those who suffered with dementia were put into insane asylums or essentially left to die. Luckily because of plagues and flu's etc, many didn't live to develop dementia. Dr. Alois Alzheimer was a German doctor who worked in an asylum. He followed many patients who had been admitted with 'madness' and who's madness developed other physical characteristics, like incontinence and the inability to walk or talk. When a 51 year old woman that he had be following passed away he did an autopsy on her brain and discovered that the cerebral cortex was covered in what her termed as 'plaque'.
He presented his findings to his colleagues who really weren't that interested. Yet he continued his research until his death at age 51. He would never know the importance of his discovery or the illness that would bear his name.
In 1995 the neurology department in Munich discovered the slides and research papers that Dr. Alzheimer had collected. With modern technology they determined the importance of what he had documented. The slides he had of many patients showed the progression of the disease and labelled what symptoms were present in the patient at their time of death and since the doctor had patients in the same family, it showed the genetic possibilities. The same research that Dr. Alzheimer conducted between 1905 and 1916 was not studied again until 1976. If only war had not broken out and had any university shown interest in his research, then perhaps our knowledge and advancement of dementia would be so much greater than what it is today.
Mom had another visitor, her second cousin Dwight. Dwight took over from where my late great aunt had in her tracing of my grandmother's family tree. With technology and the memory of many relatives he has successfully traced the roots of the Deck family all the way back to Kaspar and Franziska Dek, the year 1760. I was astonished with the information that he had compiled and put into an individual binder, specific to my grandmother, Agatha. Kaspar was born in Alsace, France. Because of war, famine and whatever at the time, he settled in a village outside of Odessa, Russia. Kaspar had 7 children and they all lived to grow their own families. Today, you can find Deck that descended from Kaspar everywhere from Argentina, to South Dakota, to Russia, to Germany and to Saskatchewan.
I asked Dwight about some of the information that he had discovered. As I child when my grandparents and my relatives wanted to discuss something that small ears shouldn't hear, they would speak in German. It didn't work, we knew enough to figure out the just of the conversations. One thing I remember was my great uncle Peter and how he, in his later years had developed some sort of 'mental' problem. I was very young when he died and I don't remember him. Knowing that dementia and mental illness can be hereditary I asked Dwight if he uncovered anything about dementia and mental illness. He answered with a resounding "Oh my goodness yes!"
My great, great grandfather Peter had 5 sons with his first wife Annemarie. When she died he remarried and had 4 more children with his second wife. In all the generations that followed and only in Peters genetic line (none of his siblings genetic lines), there are writings and documentation of some sort of mental problem and not only in the women but in the men too. Furthermore, those problems are only found in the families of the 5 sons that Peter Deck had with his first wife, none is found in the families of the children he had with his second wife. At least two of his sons had some sort of known 'mental' problem. One of them blew a load of money and on a whim moved to Argentina (very bi-polar behaviour). The next generation showed some mental health issues in the form of depression. One of Peter's and Annemarie's sons was of course named Peter and he married Lucia Herzog and one of their 13 children was my grandmother Agatha, who begot Elaine, who begot me. As absurd as this seems, I was relieved to hear that information. That means that the dementia isn't just striking the women in the family but also the men. Something else that he discovered is that 'mental' problems were very prevalent in the older generations of the family appear to lessen with each generation both in the degree of illness and the number of family members afflicted. Maybe I won't develop dementia and it's very likely that my kids won't either.
Just 4 days ago researchers found the genetic link to dementia. In a few years there will be a test that family members can take to see if they have the genetic markers. Based on my family history, I'll be first in line for that DNA test.
It's sad really because historically, those who suffered with dementia were put into insane asylums or essentially left to die. Luckily because of plagues and flu's etc, many didn't live to develop dementia. Dr. Alois Alzheimer was a German doctor who worked in an asylum. He followed many patients who had been admitted with 'madness' and who's madness developed other physical characteristics, like incontinence and the inability to walk or talk. When a 51 year old woman that he had be following passed away he did an autopsy on her brain and discovered that the cerebral cortex was covered in what her termed as 'plaque'.
He presented his findings to his colleagues who really weren't that interested. Yet he continued his research until his death at age 51. He would never know the importance of his discovery or the illness that would bear his name.
In 1995 the neurology department in Munich discovered the slides and research papers that Dr. Alzheimer had collected. With modern technology they determined the importance of what he had documented. The slides he had of many patients showed the progression of the disease and labelled what symptoms were present in the patient at their time of death and since the doctor had patients in the same family, it showed the genetic possibilities. The same research that Dr. Alzheimer conducted between 1905 and 1916 was not studied again until 1976. If only war had not broken out and had any university shown interest in his research, then perhaps our knowledge and advancement of dementia would be so much greater than what it is today.
Mom had another visitor, her second cousin Dwight. Dwight took over from where my late great aunt had in her tracing of my grandmother's family tree. With technology and the memory of many relatives he has successfully traced the roots of the Deck family all the way back to Kaspar and Franziska Dek, the year 1760. I was astonished with the information that he had compiled and put into an individual binder, specific to my grandmother, Agatha. Kaspar was born in Alsace, France. Because of war, famine and whatever at the time, he settled in a village outside of Odessa, Russia. Kaspar had 7 children and they all lived to grow their own families. Today, you can find Deck that descended from Kaspar everywhere from Argentina, to South Dakota, to Russia, to Germany and to Saskatchewan.
I asked Dwight about some of the information that he had discovered. As I child when my grandparents and my relatives wanted to discuss something that small ears shouldn't hear, they would speak in German. It didn't work, we knew enough to figure out the just of the conversations. One thing I remember was my great uncle Peter and how he, in his later years had developed some sort of 'mental' problem. I was very young when he died and I don't remember him. Knowing that dementia and mental illness can be hereditary I asked Dwight if he uncovered anything about dementia and mental illness. He answered with a resounding "Oh my goodness yes!"
My great, great grandfather Peter had 5 sons with his first wife Annemarie. When she died he remarried and had 4 more children with his second wife. In all the generations that followed and only in Peters genetic line (none of his siblings genetic lines), there are writings and documentation of some sort of mental problem and not only in the women but in the men too. Furthermore, those problems are only found in the families of the 5 sons that Peter Deck had with his first wife, none is found in the families of the children he had with his second wife. At least two of his sons had some sort of known 'mental' problem. One of them blew a load of money and on a whim moved to Argentina (very bi-polar behaviour). The next generation showed some mental health issues in the form of depression. One of Peter's and Annemarie's sons was of course named Peter and he married Lucia Herzog and one of their 13 children was my grandmother Agatha, who begot Elaine, who begot me. As absurd as this seems, I was relieved to hear that information. That means that the dementia isn't just striking the women in the family but also the men. Something else that he discovered is that 'mental' problems were very prevalent in the older generations of the family appear to lessen with each generation both in the degree of illness and the number of family members afflicted. Maybe I won't develop dementia and it's very likely that my kids won't either.
Just 4 days ago researchers found the genetic link to dementia. In a few years there will be a test that family members can take to see if they have the genetic markers. Based on my family history, I'll be first in line for that DNA test.
 |
| Dr. Alois Alzheimer |
Sunday, 18 November 2012
The Dementia Diary: The Broda chairs are a sign
The Dementia Diary: The Broda chairs are a sign: Since I moved back home and started care giving for mom, 3 residents have passed on her wing. Another dear soul slipped away yesterday mor...
The Broda chairs are a sign
Since I moved back home and started care giving for mom, 3 residents have passed on her wing. Another dear soul slipped away yesterday morning.
The first resident I didn't really get to know as she passed only a few days after I got here. Eddie, who I knew years ago and got to know again, passed away two weeks ago and yesterday Marie. Like with Eddie it was just two days ago that I helped her with her bib and got her some juice and coffee. She seemed fine. That's the thing, I'm there every day and they all seem fine to me. I am forgetting the reality and the reality is that those on mom's wing, her neighbours, her dinner companions, her new friends and mom well they are all at the end stage of their dementia and at the end stage of their lives. Death can come very quickly and at any time.
When a resident passes their room is cleaned and all of their personal items are collected. The families come and thank the staff and say their good byes to the other residents that they too have come to know. Often the families will donate to the facility, the walker or the wheel chair or even the specialized bed. They are grateful for the staff and the centre for giving the best care they could in the last days of their loved ones life. They also know that the items they donate will be used by another resident.
I know the residents are aware when someone passes because I see them feel grief. Olga was very sad yesterday because Marie sat at her dinner table and the empty space across from her forced her to look at her own mortality. Some days Robbie still gets me to fetch a cup of coffee for Eddie and then he remembers that Eddie is gone and I see the sadness in his face.
Within in days the empty spaces are filled with a new resident. Sometimes a resident from another wing is moved to the end stage wing and sometimes the resident is new. I watch the families of the new residents because they are just like I was many, many weeks ago. The wing is a bit shocking at first. As I have mentioned there are over 200 different types of dementia. Alzheimer's is the most prevalent and roughly 67% of dementia patients have Alzheimer's. Dementia presents itself differently in each resident. Some can walk but not talk. Some can talk but not walk. Some grunt or make strange sounds, some rock back and forth or repeat the same sentence over and over and over. It can be a bit overwhelming at first. You can see it in the eyes of a new residents family member. They are thinking "Will this happen to my father, is this how it will progress?" It's a look of fear and a look of emotional pain.
In my time at mom's home I've noticed lots of changes and not just new residents. Some residents who were walking just weeks ago now need a walker or a wheel chair. Some residents who very alert and talkative are now quiet and often sleeping. Some residents who only weeks ago were eating on their own are now in need of prompting to eat and at times require to be fed. When someone asks mom how she is feeling so no longer answers that she is fine or good. Now her response is "I'm won't get better".
But perhaps the most disturbing observation that I have made is with the Broda chairs. A Broda chair is a specialized wheel chair that is padded and it reclines and has a safety belt and it is for the non mobile residents like my mom. What I'm noticing is the Broda chairs are like a Hertz only the body in them is still alive. The three residents that have passed away in the last while were all in Broda chairs, my mom is in a Broda chair. I don't think it's coincidence, I think it's a sign, the coming of the end.
The first resident I didn't really get to know as she passed only a few days after I got here. Eddie, who I knew years ago and got to know again, passed away two weeks ago and yesterday Marie. Like with Eddie it was just two days ago that I helped her with her bib and got her some juice and coffee. She seemed fine. That's the thing, I'm there every day and they all seem fine to me. I am forgetting the reality and the reality is that those on mom's wing, her neighbours, her dinner companions, her new friends and mom well they are all at the end stage of their dementia and at the end stage of their lives. Death can come very quickly and at any time.
When a resident passes their room is cleaned and all of their personal items are collected. The families come and thank the staff and say their good byes to the other residents that they too have come to know. Often the families will donate to the facility, the walker or the wheel chair or even the specialized bed. They are grateful for the staff and the centre for giving the best care they could in the last days of their loved ones life. They also know that the items they donate will be used by another resident.
I know the residents are aware when someone passes because I see them feel grief. Olga was very sad yesterday because Marie sat at her dinner table and the empty space across from her forced her to look at her own mortality. Some days Robbie still gets me to fetch a cup of coffee for Eddie and then he remembers that Eddie is gone and I see the sadness in his face.
Within in days the empty spaces are filled with a new resident. Sometimes a resident from another wing is moved to the end stage wing and sometimes the resident is new. I watch the families of the new residents because they are just like I was many, many weeks ago. The wing is a bit shocking at first. As I have mentioned there are over 200 different types of dementia. Alzheimer's is the most prevalent and roughly 67% of dementia patients have Alzheimer's. Dementia presents itself differently in each resident. Some can walk but not talk. Some can talk but not walk. Some grunt or make strange sounds, some rock back and forth or repeat the same sentence over and over and over. It can be a bit overwhelming at first. You can see it in the eyes of a new residents family member. They are thinking "Will this happen to my father, is this how it will progress?" It's a look of fear and a look of emotional pain.
In my time at mom's home I've noticed lots of changes and not just new residents. Some residents who were walking just weeks ago now need a walker or a wheel chair. Some residents who very alert and talkative are now quiet and often sleeping. Some residents who only weeks ago were eating on their own are now in need of prompting to eat and at times require to be fed. When someone asks mom how she is feeling so no longer answers that she is fine or good. Now her response is "I'm won't get better".
But perhaps the most disturbing observation that I have made is with the Broda chairs. A Broda chair is a specialized wheel chair that is padded and it reclines and has a safety belt and it is for the non mobile residents like my mom. What I'm noticing is the Broda chairs are like a Hertz only the body in them is still alive. The three residents that have passed away in the last while were all in Broda chairs, my mom is in a Broda chair. I don't think it's coincidence, I think it's a sign, the coming of the end.
Friday, 16 November 2012
The Dementia Diary: Wake up everyone
The Dementia Diary: Wake up everyone: My mother is a very caring and giving person. If someone needed help of any sort, she would help. Mom knew what it was like being poor and...
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