Saturday, 19 January 2013
The Dementia Diary: A small step
The Dementia Diary: A small step: Months ago I wrote a post about the Broda chairs. In that posting I made a creative analogy in which I likened them to a Hertz only that th...
A small step
Months ago I wrote a post about the Broda chairs. In that posting I made a creative analogy in which I likened them to a Hertz only that the bodies in them were still alive. I got a comment about that post where a reader had told me that I was being over dramatic. I wasn't, I was being honest. When a person is at the point of needing a Broda chair it is because they have no control over their body and are unable to control even their upper body. The Broda chair is padded and it reclines to many positions to accommodate the fact that those using them will lean to one side or the other because they cannot maintain control of their backs, posture, neck, etc, etc. The reality is that when a person is moved from a regular wheelchair to a Broda chair it is because they have physically deteriorated to a point of severity. Most dementia patients that are in a Broda chair are really just a shell of who they once were. So, to me they represented a Hertz because the person in them is essentially already gone. I also said in my response that people who go into a Broda chair, don't come out of the Broda chair and unfortunately, usually the next step is an actual Hertz. Well, leave it to my mother to prove me wrong.
Everyone who follows this post is well aware that my mom has made some cognitive leaps in the past 6 weeks. I am pleased to say that now she is also making physical leaps and she is physically getting better too. A few months ago she was so edemic with fluid that I had to remove her wedding ring and eventually we couldn't even put regular socks on her feet as the edema was so severe, it would cut off her circulation. When I arrived in the fall, my mother couldn't support her upper body, she needed an orthopedic neck support and she was always slouched over. For months she had no control or use of her hands and the muscles were getting so rigid that she was loosing the ability to swallow properly. All of these physical symptoms have disappeared and it's almost like they never existed. The edema is gone, she can use her hands again, she sits up and supports her head and hasn't used the neck support for a month. Then, three weeks ago my mom said that she wanted to walk again and I told her that I would help. Her team, the care givers, her nurses, her nurse practitioner, her doctor, my dad and me, decided she should start using a regular wheelchair. Yesterday that's what we did, we gave mom a new wheelchair and said goodbye to the Broda. It was almost as exciting as watching my children walk for the first time and I was so happy that I could have shit a rainbow, literally.
Mom took to her new wheels quickly and immediately started to paddle her way around with the feet, like many residents who are in a wheelchair do. Dad and I realized that she needs new walking shoes then and off we went. Because she will use the heel of the shoe a lot, we needed to find a shoe with a strong, thick tread that continued up the back into the heel of the shoe. Thank you Merril shoes for making such a shoe and thank you Trailblazers for carrying the Merril line. My dad was hesitant because he wanted to find something more feminine and I laughed "Really dad, a pair of high heels will not work in this situation". He agreed and we purchased a pair of slip on Merril shoes in versatile and stylish black. Mom loved them and the nurses agreed they are stylish and functional.
I realize this is a small step but to me, considering that I came here 5 months ago intending to hold my mother's hand on her final journey, it was like she was running a marathon. I am so happy for her as this gives her some more dignity and freedom back and more importantly, a bit of independence. She is happy too. I am hoping that using the wheelchair to paddle around the facility will strengthen her legs even more and that perhaps in a month or more I can hold her hand while I walk beside her.
Everyone who follows this post is well aware that my mom has made some cognitive leaps in the past 6 weeks. I am pleased to say that now she is also making physical leaps and she is physically getting better too. A few months ago she was so edemic with fluid that I had to remove her wedding ring and eventually we couldn't even put regular socks on her feet as the edema was so severe, it would cut off her circulation. When I arrived in the fall, my mother couldn't support her upper body, she needed an orthopedic neck support and she was always slouched over. For months she had no control or use of her hands and the muscles were getting so rigid that she was loosing the ability to swallow properly. All of these physical symptoms have disappeared and it's almost like they never existed. The edema is gone, she can use her hands again, she sits up and supports her head and hasn't used the neck support for a month. Then, three weeks ago my mom said that she wanted to walk again and I told her that I would help. Her team, the care givers, her nurses, her nurse practitioner, her doctor, my dad and me, decided she should start using a regular wheelchair. Yesterday that's what we did, we gave mom a new wheelchair and said goodbye to the Broda. It was almost as exciting as watching my children walk for the first time and I was so happy that I could have shit a rainbow, literally.
Mom took to her new wheels quickly and immediately started to paddle her way around with the feet, like many residents who are in a wheelchair do. Dad and I realized that she needs new walking shoes then and off we went. Because she will use the heel of the shoe a lot, we needed to find a shoe with a strong, thick tread that continued up the back into the heel of the shoe. Thank you Merril shoes for making such a shoe and thank you Trailblazers for carrying the Merril line. My dad was hesitant because he wanted to find something more feminine and I laughed "Really dad, a pair of high heels will not work in this situation". He agreed and we purchased a pair of slip on Merril shoes in versatile and stylish black. Mom loved them and the nurses agreed they are stylish and functional.
I realize this is a small step but to me, considering that I came here 5 months ago intending to hold my mother's hand on her final journey, it was like she was running a marathon. I am so happy for her as this gives her some more dignity and freedom back and more importantly, a bit of independence. She is happy too. I am hoping that using the wheelchair to paddle around the facility will strengthen her legs even more and that perhaps in a month or more I can hold her hand while I walk beside her.
Thursday, 17 January 2013
The Dementia Diary: Stuck in a moment
The Dementia Diary: Stuck in a moment: During the first couple months of this journey with mom, I was not enjoying it. It was sad, everyday was sad. Watching her staring aimless...
Stuck in a moment
During the first couple months of this journey with mom, I was not enjoying it. It was sad, everyday was sad. Watching her staring aimlessly at the wall, or slouched over in her Broda chair, or the fear in her eyes at times, well it was heart breaking. But now that mom is alive again, the days are different. Mom still has aimless moments but her fear is gone. She is well aware of where is she and who is around her and what is wrong with her and she seems to accept this. Yet, at the same time, her mind will travel back. She travels back to periods of time that she has already lived and things she has already experienced. It's difficult to explain, so hopefully this post will help to understand what I mean.
With the dementia she gets lost in time. It's like she can't tell the difference between the past and the present. This week she was lost in the 80's. For a day, in her mind, I was a teenager again and when I went to help her with lunch, she asked why I wasn't at school. The strange thing is, she is well aware where she is and why she is there, but part of her brain goes back in time and the rest of us are in that moment too. While I helped with her lunch she talked about my math grades and how she would call Mrs. Crawford and pay for her to tutor me. Well back in 1982, that's what happened. My math grades were crap and I went to Mrs. Crawford for tutoring. So, I let her have her moment of time and although back in 1982 I fought and fought about it and because she wouldn't stop, I reluctantly went for tutoring. Well on this day, I agreed and she was shocked.
Later we were reading Chatelaine. There was an interesting article on HPV and the vaccine. The magazine is dated October 2012 and she read the article intently and the statistics from recent studies in 2009. When she finished reading it, she gave it to me and demanded that I read it, so I did. Then she started.
"Do you see, do you see.... another reason why you shouldn't have sex" and she was off on a rant. This was NOT a conversation we had in 1982 but the ranting about premarital sex, that I remember. Mom was determined that I would be a virgin when I got married. Constantly she would rant on about the evils of premarital sex, the why buy the cow when you can get the milk for free, nobody buys used goods, etc,etc. Her constant threat was that should I engage in premarital sex, she would send me to the convent. It actually wasn't a convent, it was a private girls school in Saskatchewan that was run by nuns, but pretty much a convent. She would rant so much that even my friends would laugh about it and there is an entry in my 1982 yearbook written by one of the Sternloff's and it says something like 'I'm afraid if write anything your mother will send you to the convent, so best wishes'.
For years I was able to hide the fact that I wasn't a virgin from my mother. It took some skill. I had two diaries. Diary one and then two were compilations of innocuous teenage ramblings and often hidden under my mattress or in a drawer. Diaries three, four and five weren't diaries, they were journals and from the covers they looked liked regular books or day-timers. They were never hidden. The one I was writing in was always with me or locked in my school locker and when they were full, they were stored in plain view, in my bookcase (I still have every journal, now on my 56th so when I die, someone can write an authentic biography). So, needless to say, my mother believed that I kept my virginity until I went to Europe, years after the fact.
On this day, since she was stuck in 1982 or around then, I thought it was time to come clean. When she finished ranting I took her hands and told her that I had something very important to say and I told her that I was no longer a virgin. The reason I took her hands was because I was fully expecting some loud, angry ranting and possibly a slap across the face. Instead she was calm. She didn't rant, she didn't yell, she didn't scream. In fact, she was eerily silent. "I suspected as much," she said. Then she wanted to know who. Well, I wasn't giving it all up so she preceded to name just about every boy she could think of.
"One of those Sternloff boys?"
"No".
"One of those Brock boys?"
"No".
"Well not that Seow boy, he's an alter boy".
"No".
"That skinny Blackwood boy?"
"No".
"One of the Eklof boys?"
"No".
"Well it's not that Kitteringham boy because his family moved".
"No".
"That red headed Whelan boy, his parents smoke dope you know".
"No".
And so on and so on and I think she named just about every boy that ever lived in Canmore before finally saying "It doesn't matter, but I'll call Dr. Balharry and we'll get you on the birth control pill and get this vaccine because you don't want to get cancer from sex".
I laughed and told her to call Dr. Balharry and that I had to get back to school. I kissed her and thanked her for not getting angry.
As I walked down the hall I kept wondering if I had told her 30 years ago, would she have reacted the same. I think she would have because that is a moment that mothers and daughters should have. Then I started to cry. They were tears of gratitude because I just had that moment with my mom. More importantly, my mom finally got her moment with her daughter. Suddenly, I felt closer to my mom than I have in my entire life simply because we got stuck in a moment.
With the dementia she gets lost in time. It's like she can't tell the difference between the past and the present. This week she was lost in the 80's. For a day, in her mind, I was a teenager again and when I went to help her with lunch, she asked why I wasn't at school. The strange thing is, she is well aware where she is and why she is there, but part of her brain goes back in time and the rest of us are in that moment too. While I helped with her lunch she talked about my math grades and how she would call Mrs. Crawford and pay for her to tutor me. Well back in 1982, that's what happened. My math grades were crap and I went to Mrs. Crawford for tutoring. So, I let her have her moment of time and although back in 1982 I fought and fought about it and because she wouldn't stop, I reluctantly went for tutoring. Well on this day, I agreed and she was shocked.
Later we were reading Chatelaine. There was an interesting article on HPV and the vaccine. The magazine is dated October 2012 and she read the article intently and the statistics from recent studies in 2009. When she finished reading it, she gave it to me and demanded that I read it, so I did. Then she started.
"Do you see, do you see.... another reason why you shouldn't have sex" and she was off on a rant. This was NOT a conversation we had in 1982 but the ranting about premarital sex, that I remember. Mom was determined that I would be a virgin when I got married. Constantly she would rant on about the evils of premarital sex, the why buy the cow when you can get the milk for free, nobody buys used goods, etc,etc. Her constant threat was that should I engage in premarital sex, she would send me to the convent. It actually wasn't a convent, it was a private girls school in Saskatchewan that was run by nuns, but pretty much a convent. She would rant so much that even my friends would laugh about it and there is an entry in my 1982 yearbook written by one of the Sternloff's and it says something like 'I'm afraid if write anything your mother will send you to the convent, so best wishes'.
For years I was able to hide the fact that I wasn't a virgin from my mother. It took some skill. I had two diaries. Diary one and then two were compilations of innocuous teenage ramblings and often hidden under my mattress or in a drawer. Diaries three, four and five weren't diaries, they were journals and from the covers they looked liked regular books or day-timers. They were never hidden. The one I was writing in was always with me or locked in my school locker and when they were full, they were stored in plain view, in my bookcase (I still have every journal, now on my 56th so when I die, someone can write an authentic biography). So, needless to say, my mother believed that I kept my virginity until I went to Europe, years after the fact.
On this day, since she was stuck in 1982 or around then, I thought it was time to come clean. When she finished ranting I took her hands and told her that I had something very important to say and I told her that I was no longer a virgin. The reason I took her hands was because I was fully expecting some loud, angry ranting and possibly a slap across the face. Instead she was calm. She didn't rant, she didn't yell, she didn't scream. In fact, she was eerily silent. "I suspected as much," she said. Then she wanted to know who. Well, I wasn't giving it all up so she preceded to name just about every boy she could think of.
"One of those Sternloff boys?"
"No".
"One of those Brock boys?"
"No".
"Well not that Seow boy, he's an alter boy".
"No".
"That skinny Blackwood boy?"
"No".
"One of the Eklof boys?"
"No".
"Well it's not that Kitteringham boy because his family moved".
"No".
"That red headed Whelan boy, his parents smoke dope you know".
"No".
And so on and so on and I think she named just about every boy that ever lived in Canmore before finally saying "It doesn't matter, but I'll call Dr. Balharry and we'll get you on the birth control pill and get this vaccine because you don't want to get cancer from sex".
I laughed and told her to call Dr. Balharry and that I had to get back to school. I kissed her and thanked her for not getting angry.
As I walked down the hall I kept wondering if I had told her 30 years ago, would she have reacted the same. I think she would have because that is a moment that mothers and daughters should have. Then I started to cry. They were tears of gratitude because I just had that moment with my mom. More importantly, my mom finally got her moment with her daughter. Suddenly, I felt closer to my mom than I have in my entire life simply because we got stuck in a moment.
Sunday, 13 January 2013
The Dementia Diary: Just like old times.
The Dementia Diary: Just like old times.: My mom loved a good argument and goodness knows her and I had more than a few doozies and frequently. I honestly can't think of one thing w...
Just like old times.
My mom loved a good argument and goodness knows her and I had more than a few doozies and frequently. I honestly can't think of one thing we ever agreed upon because it was hard to agree with mom. Mom is a very black and white thinker and is not one to compromise her views or opinions. Basically, if my mom said the sky was green, then she would argue that it was and no matter what evidence was presented to her to say otherwise and she would argue with you until you agreed that the sky was in fact green. Sometimes other people would agree that the sky is green, simply to end the argument, but not me, never. Needless to say, our arguments could and would go on and on and on. Our motto was who could yell the loudest and the longest. I pity those who over the years tried to intervene, it was futile.
One disagreement that comes to mind was the naming of my daughter. Two ultrasounds had said that I was having a boy and so her father and I named 'him' accordingly. We chose the name Dylan, to honour of one of her dad's favourite musicians and to honour one of my favourite poets. When Dylan came into this world a girl, well her dad and I couldn't find another name that we liked and we toyed with Dylana and didn't like the sound of it, so we decided to keep the name we chose. My mother did not agree and kept insisting that we find another name as she was not going to allow her granddaughter to be named after a drunkard and hippie and have what she felt was a boys name.
Later in the day the unit clerk arrived with paper work that I needed to complete to register the live birth. I completed them with the name Dylan. My mother ripped up the form. The unit clerk returned and explained to my mother that the form is a legal, government document that is officially numbered and she would now have to complete more paperwork to explain the out of sequence numbers and she gave me another form to complete to register the live birth. I completed it and again my mother ripped it up. The unit clerk was angered now and told mom that if she did it again, she would be removed from the hospital by security and she gave me another form to complete to register the live birth. I completed it and again my mom ripped it up. You guess what happened but she was allowed to return 12 hours later when all the paperwork had been completed and filed.
There were other notable arguments and often I would have no choice but you refuse to speak with her, even changing my phone number once. That drove mom nuts. It wasn't the fact that she couldn't speak with me, it was the fact that she couldn't yell on the phone to me or leave an argumentative message on my machine. So, for two months I would find envelopes on the windshield of my car. The woman would drive from Canmore to Bragg Creek, to search for my car and would leave argumentative notes on the windshield of my car. She was determined, I'll give her that much and eventually I gave in and gave her my phone number but only because I didn't want her driving the roads in the winter.
In the past month, so much of mom has returned. She refers to the staff by name and has no qualms about demanding their help when she needs it, not asking, demanding. I have advised them to not give her a bedside buzzer. She is also demanding of my dad and myself. "Peter, get me more chocolate milk and Lisa Marie, get me a blanket or _________", is the norm again and I love it. And, what also has returned is her love of arguing and arguing with me.
Assisting mom to eat is now different also. She is never hungry and often argues with me that she just ate as she doesn't realize that it's been 5 hours since her last meal. Other times she will argue that it's too much food. So, I take the exact same portion and put it onto a smaller plate and then she is fine. Most times she forgets to swallow or puts too much food onto the fork, so now assisting mom is reminding her swallow what is already in her mouth. I make mom feed herself and will not give in when she demands help. My dad still does, so sometimes she will sit and sit and wait for dad to come and when he gets there, he feeds her. I kid you not, when she does that, she looks over to me and grins, pleased that she got her way.
Last night at dinner was no different. First she argued that she wasn't hungry and I reminded her that she hasn't eaten anything since noon and she needs to eat. She took a little bite. Then she argued that it's too much food, so I went to the kitchen and put the stew and biscuit into a bowl. She took another bite. Then she stopped eating and I told her that she needs to eat and she said she didn't want the stew. So I asked if she wanted a sandwich and she demanded a tuna sandwich, and I'm sure she was thinking there wouldn't be one, but there was. I put the sandwich on a SMALL plate and placed it in front of her. She took a little bite and then stopped. By now, I admit, I was slightly agitated and I asked her what was the problem. She didn't answer, so I reminded her that she has to eat something. Then this happened.
"What don't you understand," she yelled "are you deaf?"
"I'm not deaf mom," I answered.
She pushed the two plates of food away and yelled even louder "I'm not hungry!!!"
I yelled back "I don't care if you're not hungry you have to eat!!"
She yelled louder "I don't have to do anything I don't want to !!!!"
I yelled "MOTHER, if you don't eat, you'll get sick, I'm here everyday to help you eat, so eat, PLEASE!"
"NO," she yelled louder "JUST GO AWAY AND DON'T COME BACK"
"FINE," I yelled "STARVE THEN, I DON'T CARE!!!" I turned my chair so that she would see nothing but my back and proceeded to help Evie finish her stew. I then realized that the rest of the dining room was quiet and all eyes were fixed on us. Typical of our arguments, we never cleared a room but everyone always stopped what they were doing and watched to see the outcome. It didn't matter if it was a shopping mall, a parking lot, a school function, the foyer at the Catholic church, an air plane, a maternity ward or a seniors home dining room.
Eventually dad arrived and asked what was going on. Mom said "Talk to her".
Dad knew and he laughed as he sat down and gave mom a bite of the sandwich, which she ate. Then dad said "Just like old times," and laughed some more.
One disagreement that comes to mind was the naming of my daughter. Two ultrasounds had said that I was having a boy and so her father and I named 'him' accordingly. We chose the name Dylan, to honour of one of her dad's favourite musicians and to honour one of my favourite poets. When Dylan came into this world a girl, well her dad and I couldn't find another name that we liked and we toyed with Dylana and didn't like the sound of it, so we decided to keep the name we chose. My mother did not agree and kept insisting that we find another name as she was not going to allow her granddaughter to be named after a drunkard and hippie and have what she felt was a boys name.
Later in the day the unit clerk arrived with paper work that I needed to complete to register the live birth. I completed them with the name Dylan. My mother ripped up the form. The unit clerk returned and explained to my mother that the form is a legal, government document that is officially numbered and she would now have to complete more paperwork to explain the out of sequence numbers and she gave me another form to complete to register the live birth. I completed it and again my mother ripped it up. The unit clerk was angered now and told mom that if she did it again, she would be removed from the hospital by security and she gave me another form to complete to register the live birth. I completed it and again my mom ripped it up. You guess what happened but she was allowed to return 12 hours later when all the paperwork had been completed and filed.
There were other notable arguments and often I would have no choice but you refuse to speak with her, even changing my phone number once. That drove mom nuts. It wasn't the fact that she couldn't speak with me, it was the fact that she couldn't yell on the phone to me or leave an argumentative message on my machine. So, for two months I would find envelopes on the windshield of my car. The woman would drive from Canmore to Bragg Creek, to search for my car and would leave argumentative notes on the windshield of my car. She was determined, I'll give her that much and eventually I gave in and gave her my phone number but only because I didn't want her driving the roads in the winter.
In the past month, so much of mom has returned. She refers to the staff by name and has no qualms about demanding their help when she needs it, not asking, demanding. I have advised them to not give her a bedside buzzer. She is also demanding of my dad and myself. "Peter, get me more chocolate milk and Lisa Marie, get me a blanket or _________", is the norm again and I love it. And, what also has returned is her love of arguing and arguing with me.
Assisting mom to eat is now different also. She is never hungry and often argues with me that she just ate as she doesn't realize that it's been 5 hours since her last meal. Other times she will argue that it's too much food. So, I take the exact same portion and put it onto a smaller plate and then she is fine. Most times she forgets to swallow or puts too much food onto the fork, so now assisting mom is reminding her swallow what is already in her mouth. I make mom feed herself and will not give in when she demands help. My dad still does, so sometimes she will sit and sit and wait for dad to come and when he gets there, he feeds her. I kid you not, when she does that, she looks over to me and grins, pleased that she got her way.
Last night at dinner was no different. First she argued that she wasn't hungry and I reminded her that she hasn't eaten anything since noon and she needs to eat. She took a little bite. Then she argued that it's too much food, so I went to the kitchen and put the stew and biscuit into a bowl. She took another bite. Then she stopped eating and I told her that she needs to eat and she said she didn't want the stew. So I asked if she wanted a sandwich and she demanded a tuna sandwich, and I'm sure she was thinking there wouldn't be one, but there was. I put the sandwich on a SMALL plate and placed it in front of her. She took a little bite and then stopped. By now, I admit, I was slightly agitated and I asked her what was the problem. She didn't answer, so I reminded her that she has to eat something. Then this happened.
"What don't you understand," she yelled "are you deaf?"
"I'm not deaf mom," I answered.
She pushed the two plates of food away and yelled even louder "I'm not hungry!!!"
I yelled back "I don't care if you're not hungry you have to eat!!"
She yelled louder "I don't have to do anything I don't want to !!!!"
I yelled "MOTHER, if you don't eat, you'll get sick, I'm here everyday to help you eat, so eat, PLEASE!"
"NO," she yelled louder "JUST GO AWAY AND DON'T COME BACK"
"FINE," I yelled "STARVE THEN, I DON'T CARE!!!" I turned my chair so that she would see nothing but my back and proceeded to help Evie finish her stew. I then realized that the rest of the dining room was quiet and all eyes were fixed on us. Typical of our arguments, we never cleared a room but everyone always stopped what they were doing and watched to see the outcome. It didn't matter if it was a shopping mall, a parking lot, a school function, the foyer at the Catholic church, an air plane, a maternity ward or a seniors home dining room.
Eventually dad arrived and asked what was going on. Mom said "Talk to her".
Dad knew and he laughed as he sat down and gave mom a bite of the sandwich, which she ate. Then dad said "Just like old times," and laughed some more.
 | |
| Mom and I post argument at a wedding. |
 | |||
| She didn't win the argument but she won a grand-daughter, named Dylan, who mom nicknamed Dillie Bear or Dill Pickle. |
Thursday, 10 January 2013
The Dementia Diary: With a smile
The Dementia Diary: With a smile: My New Year's resolution this year was to smile more. Everyone of every age responds to a smile, from babies to dementia patients. Many de...
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