Saturday 29 December 2012
The Dementia Diary: For life
The Dementia Diary: For life: When I was a kid, my friend Laura and I would often venture to her grandparents by the Miner's hall. We would listen to her grandpa and her...
For life
When I was a kid, my friend Laura and I would often venture to her grandparents by the Miner's hall. We would listen to her grandpa and her grandmother would make us tea and cookies. In fact, it was Mrs. Smith who taught me how to brew a proper cuppa. To me and still to me this day, that's the image I have elderly couples. They downsize to a smaller house that is adorned with the remnants and knick knacks of their life together and spend their days together. The old folks home, in my mind, was full of widows and widowers. It was a place where a husband would go if he lost his wife because he couldn't cook or clean and it was a place where a widow would go because she was lonely. Of course, I have since learnt that is not the case.
At mom's facility and at many facilities across the country there are couples who reside at them, together. Many are in the assisted living quarters and some live on different wings of the facilities because they have different needs and capabilities. There is one couple that mom and I dine with everyday. They moved into the assisted living side, 7 years ago, together. Over time the wife developed dementia and had to be moved out of assisted living. That must have been very hard for Bob. Everyday at lunch and dinner he comes to assist his wife with eating. It is the most loving thing to watch. Some days the staff will try to feed her before he arrives and she will close her eyes and pretend to be asleep and some days she will simply say "No". She isn't asleep and she isn't being finicky, she is simply waiting for her husband to come and he always does. If for some reason he can't, he makes sure to find me or a staff and is adamant that we tell his wife he won't be there and always says "Make sure she understands or else she'll keep waiting for me and won't eat". It's true, if she thinks she is waiting for Bob, she won't eat but if she understands that he isn't coming, she will. They recently celebrated 65 years of marriage.
One day Bob asked what my husband thinks of me coming everyday to feed mom lunch and dinner. I had to respond that I'm not married. I had to explain that I'm not married and that I've never been married. "Oh," said Bob, "are you a lesbian then?" he asked. I laughed because when you are 90, I guess you can ask any question you want. I told him that I'm not and that I would rather light myself on fire, than get married, my standard answer to the question. Bob said "Well you must be one of those who think it's an institution". I had to explain to Bob that wasn't the case either. I believe in marriage and I admire people who are committed to each other, the marriage and the vows but I simply haven't met someone who is amazing, and who takes those vows seriously. I explained to Bob that most people today go into marriage not with the belief that it will be forever but with the belief that they can always get divorced and no one wants to put the work into making it work forever. Bob nodded and said "Well that's good and you just keep on waiting then because marriage IS work and you get married for life".
There is a gentleman who at least once a week gets me to relay a message to his wife who is on another ward. "Tell her I love her and that I'm thinking of her," is what he always gets me to say and I do. Sometimes she doesn't know who I am talking about and other times she sends a message back and it too is always the same message "Tell him I miss him". There is another couple who's children have arranged for a private worker to come in everyday at dinner and assist their parents with eating so that they can have at least one meal together a day and at least one hour together a day. Then there are some who walk around in sadness because their spouse has passed. My time at mom's home and my time with the couples and widows and widowers that reside there has given me a different perspective on marriage and my talks with Bob have really helped me gain that perspective.
Many times I have asked Bob how his marriage has endured and if it was always happy and if he ever considered wandering, etc, etc. Bob has graciously always answered my questions with the truth. He admitted that by his estimates, if he added all the nights he spent on the couch, it would total a good year, maybe more. But he also told me that the time spent on the couch was needed because both him and his wife didn't sleep and the quiet of the night forced them to think about the issue and by morning one of both of them would be willing to admit the wrong and then they would work on finding the compromise. "Marriage is work and negotiations," he said.
One day I gave Bob the movie 'Jerry Macguire' to watch and I asked him to give me his opinion on it. A few days later he watched it and over dinner we had a big discussion. There were elements of the movie that he liked. "Working together for a common goal is important," he said. So I asked him, what was your common goal and he laughed "Well, we were farmers so it wasn't to be rich or famous like in the movie, our goal was happiness and we did what we needed to be happy with each other and with our life and we did it together". I asked Bob what he didn't like about the movie and he piped up, loud and clear "That you complete me stuff is utter bullshit." Now I laughed out loud at that one because I too think it is the stupidest line in the movie. Bob explained that he and his wife had lots in common and they had lots of differences too but they were both 'complete' people before they got married. Bob explained to me that the commonalities with him and his wife made some things easier in the marriage but it was the differences that made things interesting in the marriage. He likened it to two links on a strong chain. The links are solid and complete and on their own are strong. When you put two complete and solid links together, they are even stronger. I had my 'aha'/Dr. Phil moment right there and then.
So, I no longer would rather light myself on fire than get married. Not that I'm in any way, shape or form 'marriage minded'. More like if Mr. Amazing were a complete link, I'm ready to consider linking together and 'consider' is the operative word there. As this blog is read by over 8000 people world wide, maybe Mr. Amazing lives in Ireland or is named Johnny Depp or Adrian Brody.
At mom's facility and at many facilities across the country there are couples who reside at them, together. Many are in the assisted living quarters and some live on different wings of the facilities because they have different needs and capabilities. There is one couple that mom and I dine with everyday. They moved into the assisted living side, 7 years ago, together. Over time the wife developed dementia and had to be moved out of assisted living. That must have been very hard for Bob. Everyday at lunch and dinner he comes to assist his wife with eating. It is the most loving thing to watch. Some days the staff will try to feed her before he arrives and she will close her eyes and pretend to be asleep and some days she will simply say "No". She isn't asleep and she isn't being finicky, she is simply waiting for her husband to come and he always does. If for some reason he can't, he makes sure to find me or a staff and is adamant that we tell his wife he won't be there and always says "Make sure she understands or else she'll keep waiting for me and won't eat". It's true, if she thinks she is waiting for Bob, she won't eat but if she understands that he isn't coming, she will. They recently celebrated 65 years of marriage.
One day Bob asked what my husband thinks of me coming everyday to feed mom lunch and dinner. I had to respond that I'm not married. I had to explain that I'm not married and that I've never been married. "Oh," said Bob, "are you a lesbian then?" he asked. I laughed because when you are 90, I guess you can ask any question you want. I told him that I'm not and that I would rather light myself on fire, than get married, my standard answer to the question. Bob said "Well you must be one of those who think it's an institution". I had to explain to Bob that wasn't the case either. I believe in marriage and I admire people who are committed to each other, the marriage and the vows but I simply haven't met someone who is amazing, and who takes those vows seriously. I explained to Bob that most people today go into marriage not with the belief that it will be forever but with the belief that they can always get divorced and no one wants to put the work into making it work forever. Bob nodded and said "Well that's good and you just keep on waiting then because marriage IS work and you get married for life".
There is a gentleman who at least once a week gets me to relay a message to his wife who is on another ward. "Tell her I love her and that I'm thinking of her," is what he always gets me to say and I do. Sometimes she doesn't know who I am talking about and other times she sends a message back and it too is always the same message "Tell him I miss him". There is another couple who's children have arranged for a private worker to come in everyday at dinner and assist their parents with eating so that they can have at least one meal together a day and at least one hour together a day. Then there are some who walk around in sadness because their spouse has passed. My time at mom's home and my time with the couples and widows and widowers that reside there has given me a different perspective on marriage and my talks with Bob have really helped me gain that perspective.
Many times I have asked Bob how his marriage has endured and if it was always happy and if he ever considered wandering, etc, etc. Bob has graciously always answered my questions with the truth. He admitted that by his estimates, if he added all the nights he spent on the couch, it would total a good year, maybe more. But he also told me that the time spent on the couch was needed because both him and his wife didn't sleep and the quiet of the night forced them to think about the issue and by morning one of both of them would be willing to admit the wrong and then they would work on finding the compromise. "Marriage is work and negotiations," he said.
One day I gave Bob the movie 'Jerry Macguire' to watch and I asked him to give me his opinion on it. A few days later he watched it and over dinner we had a big discussion. There were elements of the movie that he liked. "Working together for a common goal is important," he said. So I asked him, what was your common goal and he laughed "Well, we were farmers so it wasn't to be rich or famous like in the movie, our goal was happiness and we did what we needed to be happy with each other and with our life and we did it together". I asked Bob what he didn't like about the movie and he piped up, loud and clear "That you complete me stuff is utter bullshit." Now I laughed out loud at that one because I too think it is the stupidest line in the movie. Bob explained that he and his wife had lots in common and they had lots of differences too but they were both 'complete' people before they got married. Bob explained to me that the commonalities with him and his wife made some things easier in the marriage but it was the differences that made things interesting in the marriage. He likened it to two links on a strong chain. The links are solid and complete and on their own are strong. When you put two complete and solid links together, they are even stronger. I had my 'aha'/Dr. Phil moment right there and then.
So, I no longer would rather light myself on fire than get married. Not that I'm in any way, shape or form 'marriage minded'. More like if Mr. Amazing were a complete link, I'm ready to consider linking together and 'consider' is the operative word there. As this blog is read by over 8000 people world wide, maybe Mr. Amazing lives in Ireland or is named Johnny Depp or Adrian Brody.
Thursday 27 December 2012
The Dementia Diary: My special Christmas gift
The Dementia Diary: My special Christmas gift: X-mas for mom was great. My dad made an album of all the cards and wishes and letters that she received and they spent an hour on x-mas day...
My special Christmas gift
X-mas for mom was great. My dad made an album of all the cards and wishes and letters that she received and they spent an hour on x-mas day looking over them and reading them. Another gift was a proper turkey dinner. Mom's swallowing has improved and as long as she is reminded to chew and then swallow with liquid, she is fine. It has improved so much, I convinced the nutritionist to observe her and we started mom on small portions of regular food on Christmas Day. Then, my gift to mom was a SKYPE with family that could not join us. She was thrilled to see my brother, his wife and the kids. She knew who everyone was and even noted that David is now wearing glasses. But I will say that I received the greatest gift. It's a gift that I have always wanted.
Anyone who knows mom and I will agree that we had a very unique relationship. All mothers and daughters have their differences but mom and I had more than the norm. For pretty much my entire life everything I did in some way, shape or form revolving around my relationship with my mom. To keep mom happy I did the things that she liked, but I hated. For example, ballet and music lessons. Regardless, anything I did, I did well and very well so that she would happy with me, so she would be pleased with me and proud of me and love me. I was always chasing the natural love.
But I never got it. My mother's love always came with a condition. I will love you if... was always the message. I always felt she didn't love me, who I am and if I was someone different, she would. Her praise was never real praise. It was more of a comparison and at times even criticism. Yes you did well but _______ fill in a name, did better. It just always seemed to me, as a child, that I was never good enough. I new that I was, but never in my mother's eyes was I good enough.
I realized at a very young age that is wasn't my fault. Mom was the way she was because of her mental illness and the drugs that stopped her from getting psychotic. I knew she was a good person at heart but mom had a deep hole in her, an empty hole that could never be filled. She tried to fill it, my father tried to fill it and us kids tried to fill it for her. We did things that she could never do or wouldn't do to try to fill that hole that was deep, deep inside her soul. It never could be filled and eventually we all just gave up and accepted that this is the wife, the mother, the sister and the friend that we have and will always have and that was okay.
Still, always in the back of my mind was a fear. The fear was that I would never please my mom and that she would someday pass away and I would never know the feeling of true natural love from my mother. A fear that I would never know the feelings of seeing your mother accepting of you and proud of you. It didn't matter what I have done in my life or what I have yet to do, I just always had this fear and at times anger that I will never know those feelings or the love.
2012 was a crossroads year for me. The mountains kept calling me and I didn't listen and I was slowly getting buried in the desert sands of Kamloops. I had to do something and knowing that my father and my mother needed me, I went home. When I got home, my mom was literally one foot from the grave and at first I resigned myself that I had come home to be with her on her last journey. Once the shock wore off and I had completed writing mom's obituary and on paper, not just in my head, a feeling came over me. It was a feeling that I knew. The feeling was telling me that I had to do better. So I did better then just keeping my mom company and reading to her. I got involved and active in her care. I questioned everything from the food she was eating, to the meds she was on and to the recreation that she wasn't doing. I convinced them to change her diet and assured the professionals that I would make sure she would be alright. I convinced the doctors to take her off of the medications because something told me that she didn't need them anymore. I made her get active again and if that meant I would sit and help her beat a drum, then I would beat the drum with her. Over time, mom came alive again and literally reborn. I say reborn because, yes it's still my mother but she is a different person.
Here is what I think has happened. The Lewy bodies that ravish my mom's brain tissue and create the plaque that prevents her from walking and make her shake and forgot have also eaten the parts of her brain that made her mentally ill for all of her adult life. So the real Elaine Mary Obrigewitsch had emerged. My mother. This is now a woman who tells me everyday, twice a day, "I love you Lisa-Marie". They aren't just words either. For no reason sometimes, she'll grab my hand to hold it. We'll glance the pages of Chatelaine and she'll see something and say "You would look good in that" and it's something that is MY style, that I like, not what I grew up with, of her always criticizing my choice in clothes or style. I'm trying to grow my hair, again. Most of my life I've kept it short and my mother always criticized it. But last week she gently brushed my hair from eyes and said "You should cut your hair, it hides your pretty green eyes". I nearly fainted but I was so happy that I had to hold back the tears.
I got the greatest gift on Christmas Day. I was helping was a resident near to our table. I helped her to sit down and then I went and got her a coffee. She thanked me and said "What would do without you". I jokingly said something back and sat down beside mom. Mom looked me straight in the eyes and said to me "You make me proud, that's my girl". I have waited all of my life to hear those words and on Christmas Day, I heard them, loud and clear for the first time in my life. I have been chasing that cup of love all my life and I thought I would never get. On that day, I got it.
I have wondered many times over the past months as to why I was led home. I thought it was to help mom but now I see, it was to help me too. So now, both of us are healed.
Anyone who knows mom and I will agree that we had a very unique relationship. All mothers and daughters have their differences but mom and I had more than the norm. For pretty much my entire life everything I did in some way, shape or form revolving around my relationship with my mom. To keep mom happy I did the things that she liked, but I hated. For example, ballet and music lessons. Regardless, anything I did, I did well and very well so that she would happy with me, so she would be pleased with me and proud of me and love me. I was always chasing the natural love.
But I never got it. My mother's love always came with a condition. I will love you if... was always the message. I always felt she didn't love me, who I am and if I was someone different, she would. Her praise was never real praise. It was more of a comparison and at times even criticism. Yes you did well but _______ fill in a name, did better. It just always seemed to me, as a child, that I was never good enough. I new that I was, but never in my mother's eyes was I good enough.
I realized at a very young age that is wasn't my fault. Mom was the way she was because of her mental illness and the drugs that stopped her from getting psychotic. I knew she was a good person at heart but mom had a deep hole in her, an empty hole that could never be filled. She tried to fill it, my father tried to fill it and us kids tried to fill it for her. We did things that she could never do or wouldn't do to try to fill that hole that was deep, deep inside her soul. It never could be filled and eventually we all just gave up and accepted that this is the wife, the mother, the sister and the friend that we have and will always have and that was okay.
Still, always in the back of my mind was a fear. The fear was that I would never please my mom and that she would someday pass away and I would never know the feeling of true natural love from my mother. A fear that I would never know the feelings of seeing your mother accepting of you and proud of you. It didn't matter what I have done in my life or what I have yet to do, I just always had this fear and at times anger that I will never know those feelings or the love.
2012 was a crossroads year for me. The mountains kept calling me and I didn't listen and I was slowly getting buried in the desert sands of Kamloops. I had to do something and knowing that my father and my mother needed me, I went home. When I got home, my mom was literally one foot from the grave and at first I resigned myself that I had come home to be with her on her last journey. Once the shock wore off and I had completed writing mom's obituary and on paper, not just in my head, a feeling came over me. It was a feeling that I knew. The feeling was telling me that I had to do better. So I did better then just keeping my mom company and reading to her. I got involved and active in her care. I questioned everything from the food she was eating, to the meds she was on and to the recreation that she wasn't doing. I convinced them to change her diet and assured the professionals that I would make sure she would be alright. I convinced the doctors to take her off of the medications because something told me that she didn't need them anymore. I made her get active again and if that meant I would sit and help her beat a drum, then I would beat the drum with her. Over time, mom came alive again and literally reborn. I say reborn because, yes it's still my mother but she is a different person.
Here is what I think has happened. The Lewy bodies that ravish my mom's brain tissue and create the plaque that prevents her from walking and make her shake and forgot have also eaten the parts of her brain that made her mentally ill for all of her adult life. So the real Elaine Mary Obrigewitsch had emerged. My mother. This is now a woman who tells me everyday, twice a day, "I love you Lisa-Marie". They aren't just words either. For no reason sometimes, she'll grab my hand to hold it. We'll glance the pages of Chatelaine and she'll see something and say "You would look good in that" and it's something that is MY style, that I like, not what I grew up with, of her always criticizing my choice in clothes or style. I'm trying to grow my hair, again. Most of my life I've kept it short and my mother always criticized it. But last week she gently brushed my hair from eyes and said "You should cut your hair, it hides your pretty green eyes". I nearly fainted but I was so happy that I had to hold back the tears.
I got the greatest gift on Christmas Day. I was helping was a resident near to our table. I helped her to sit down and then I went and got her a coffee. She thanked me and said "What would do without you". I jokingly said something back and sat down beside mom. Mom looked me straight in the eyes and said to me "You make me proud, that's my girl". I have waited all of my life to hear those words and on Christmas Day, I heard them, loud and clear for the first time in my life. I have been chasing that cup of love all my life and I thought I would never get. On that day, I got it.
I have wondered many times over the past months as to why I was led home. I thought it was to help mom but now I see, it was to help me too. So now, both of us are healed.
Monday 24 December 2012
The Dementia Diary: Happy ho-ho-ho
The Dementia Diary: Happy ho-ho-ho: Today on this eve, I would like to wish everyone a very, very MERRY CHRISTMAS. The support and prayers and encouragement for me and mom has...
Happy ho-ho-ho
Today on this eve, I would like to wish everyone a very, very MERRY CHRISTMAS. The support and prayers and encouragement for me and mom has been the best gift ever. Thank you.
Friday 21 December 2012
The Dementia Diary: Come and get it !!!!
The Dementia Diary: Come and get it !!!!: The majority of the time I spend with mom is centred around meal times. Many people have messaged me wondering why the meal time is so impo...
Come and get it !!!!
The majority of the time I spend with mom is centred around meal times. Many people have messaged me wondering why the meal time is so important and why is occupies roughly 3 hours of my day. There are many reasons but mainly because is takes roughly an hour to feed mom.
Most people with advanced dementia have difficulties eating and drinking, this too is for many reasons. Some patients don't recognise the food in front of them, especially if it is minced or pureed as is often the case and this is the case with mom. Now that she is more alert I am feeding her the minced food again as well as fortified liquid. Mom insists that everything put in front of her is fish or if the vegetable is green, then it's cooked spinach and mom hates both, needless to say, she won't eat them. Some patients will eat the condiments on the table or sugar packs or even take a bite of their napkin and again this is because the dementia has taken away that part of the brain that identifies what is food and what isn't.
Depression can also play a role in eating. Although a person may not be able to express it, they might be depressed and often a depressed person does not have an appetite. In many, the plaque that destroys the tissue and areas of the brain has taken away the hunger response, so they simply don't feel hungry. It's very hard to feed a person who isn't hungry at designated meal times. This is why, in most facilities like mom's there are small kitchen areas where sandwiches, cookies, fruit, yogurt and beverages are always available.
There can also be the opposite changes in dementia patients. Some of them will crave sweets and only eat sweet foods or they will eat only certain foods. My mom seems to only want to eat soup, mashed potatoes and dessert, but she always liked dessert. Other patients literally forget that they already have a mouthful of food but with continue to take bite after bite after bite without swallowing so of course this puts them at risk for choking. Other patients completely forget to swallow and they also pose a risk for choking. With mom, she will chew and chew and chew and chew and not swallow unless she is encouraged to take a drink of water. When she does try to swallow, instead of pushing the bolus of food to the back of her mouth she pushes it to the front of her mouth and out all over her chin. We have a system. I give her a bite of food, watch her chew about 10 to 12 times and then I either encourage her to take a drink (she can lift the cups to her mouth now) or if she is too shaky, I give her a drink and the food is properly swallowed.
Patients like mom also have a tendency of pocketing food. Instead of swallowing they move the food towards their cheeks and it sits there, not swallowed like a chipmunk. Mom occasionally does this so I always check her mouth after every meal. This isn't an intention behaviour, it's another symptom. Pocketing not only can cause choking but it can also cause aspiration pneumonia as over time little particles of food will be inhaled. Pneumonia is one of the major causes of death in dementia patients, so the pocketing of food has to always be checked.
Of course any dementia patient who has Parkinson like symptoms has difficulty eating. They simply can't control the shaking or the muscles in their hands. Lately, I have been trying to encourage mom to hold a spoon and get a bite of food and then eat it. Sometimes she tries and can do it but then a minute later instead of putting the food in her mouth she will put it into her cup of water. Other times, she is just to shaky to hold a utensil.
As dementia progresses the muscles become rigid. This applies to all muscles, including those in the jaw and the throat. A few months ago we were starting to see this in mom but the muscles have gotten some strength back again and her swallowing is much better. Her swallowing is so much better now, we no longer need to use the straws to drink liquids. When the muscles get too rigid, a dementia patient simply can't chew or swallow. If they can't chew or swallow then they can't eat solid food. If they can't swallow at all, they can't take in any food and unfortunately they can't take in liquid either. People can last 3 minutes without oxygen, 3 weeks without any food but only 3 days without any water. I watched mom's swallowing for months and will keep on watching it because when any person can no longer take water and without medical intervention, well the end is near. Mom's personal directive is no tube feeding and this includes water.
The other reason why I feed mom is because it's time together. As we wait for the food we will chat and often I will eat a meal while I feed mom because it gives both of us a sense of togetherness and family time. We all grew up with our parents and we all spent time around a kitchen table or in a dining room, eating, talking, arguing or laughing and everyday I do that with mom. It doesn't matter that we are eating in a large dining room with other people and not at home around the table or that I am feeding her. What does matter is that it's meal time, together but I do miss the sound of my mother's voice, yelling through out the house or the neighbourhood "Come and get it!!!!'.
Most people with advanced dementia have difficulties eating and drinking, this too is for many reasons. Some patients don't recognise the food in front of them, especially if it is minced or pureed as is often the case and this is the case with mom. Now that she is more alert I am feeding her the minced food again as well as fortified liquid. Mom insists that everything put in front of her is fish or if the vegetable is green, then it's cooked spinach and mom hates both, needless to say, she won't eat them. Some patients will eat the condiments on the table or sugar packs or even take a bite of their napkin and again this is because the dementia has taken away that part of the brain that identifies what is food and what isn't.
Depression can also play a role in eating. Although a person may not be able to express it, they might be depressed and often a depressed person does not have an appetite. In many, the plaque that destroys the tissue and areas of the brain has taken away the hunger response, so they simply don't feel hungry. It's very hard to feed a person who isn't hungry at designated meal times. This is why, in most facilities like mom's there are small kitchen areas where sandwiches, cookies, fruit, yogurt and beverages are always available.
There can also be the opposite changes in dementia patients. Some of them will crave sweets and only eat sweet foods or they will eat only certain foods. My mom seems to only want to eat soup, mashed potatoes and dessert, but she always liked dessert. Other patients literally forget that they already have a mouthful of food but with continue to take bite after bite after bite without swallowing so of course this puts them at risk for choking. Other patients completely forget to swallow and they also pose a risk for choking. With mom, she will chew and chew and chew and chew and not swallow unless she is encouraged to take a drink of water. When she does try to swallow, instead of pushing the bolus of food to the back of her mouth she pushes it to the front of her mouth and out all over her chin. We have a system. I give her a bite of food, watch her chew about 10 to 12 times and then I either encourage her to take a drink (she can lift the cups to her mouth now) or if she is too shaky, I give her a drink and the food is properly swallowed.
Patients like mom also have a tendency of pocketing food. Instead of swallowing they move the food towards their cheeks and it sits there, not swallowed like a chipmunk. Mom occasionally does this so I always check her mouth after every meal. This isn't an intention behaviour, it's another symptom. Pocketing not only can cause choking but it can also cause aspiration pneumonia as over time little particles of food will be inhaled. Pneumonia is one of the major causes of death in dementia patients, so the pocketing of food has to always be checked.
Of course any dementia patient who has Parkinson like symptoms has difficulty eating. They simply can't control the shaking or the muscles in their hands. Lately, I have been trying to encourage mom to hold a spoon and get a bite of food and then eat it. Sometimes she tries and can do it but then a minute later instead of putting the food in her mouth she will put it into her cup of water. Other times, she is just to shaky to hold a utensil.
As dementia progresses the muscles become rigid. This applies to all muscles, including those in the jaw and the throat. A few months ago we were starting to see this in mom but the muscles have gotten some strength back again and her swallowing is much better. Her swallowing is so much better now, we no longer need to use the straws to drink liquids. When the muscles get too rigid, a dementia patient simply can't chew or swallow. If they can't chew or swallow then they can't eat solid food. If they can't swallow at all, they can't take in any food and unfortunately they can't take in liquid either. People can last 3 minutes without oxygen, 3 weeks without any food but only 3 days without any water. I watched mom's swallowing for months and will keep on watching it because when any person can no longer take water and without medical intervention, well the end is near. Mom's personal directive is no tube feeding and this includes water.
The other reason why I feed mom is because it's time together. As we wait for the food we will chat and often I will eat a meal while I feed mom because it gives both of us a sense of togetherness and family time. We all grew up with our parents and we all spent time around a kitchen table or in a dining room, eating, talking, arguing or laughing and everyday I do that with mom. It doesn't matter that we are eating in a large dining room with other people and not at home around the table or that I am feeding her. What does matter is that it's meal time, together but I do miss the sound of my mother's voice, yelling through out the house or the neighbourhood "Come and get it!!!!'.
Tuesday 18 December 2012
The Dementia Diary: Clinker dust, tsunami, fugedda bout it
The Dementia Diary: Clinker dust, tsunami, fugedda bout it: My mom loved x-mas and x-mas baking and giving gifts and sending cards and singing x-mas carols and everything about x-mas. Here's the stra...
Clinker dust, tsunami, fugedda bout it
My mom loved x-mas and x-mas baking and giving gifts and sending cards and singing x-mas carols and everything about x-mas. Here's the strange thing, mom never put up x-mas outside x-mas lights or decorate the outside short of a wreath on the door. For years I thought it was because of my dad and maybe he didn't want to put them up. My father is a very frugal man and I could just see my dad calling they lights a waste of money and an additional cost on the utility bills. One year I asked mom why we didn't put up outside lights and I fully expected to hear that it was because of my father. However much to my surprise, it wasn't. In fact it was my mom who didn't believe in outside decorations. She told me that x-mas is a time for the warmth and comfort of the home and she decorated the inside so that instead of looking at the outside, people would come in and enjoy the togetherness and love inside our home. It made sense. Regardless, mom always liked to drive around Canmore and see what the townspeople had put up in their yards and on the outside of the houses. So, this year when I heard that the facility would be doing some x-mas light tours I signed mom up for the outing.
Getting a dozen residents into the handi-bus is not small feat. Many of the residents, although walking, don't have have the strength to use the stairs to get up into the bus, so the lift must be used. Others are in wheelchairs so the lift must be used again to get them in, then with help they are transferred into a seat and then to get the wheelchair back down, the lift must be used again. Most of the wheelchairs look exactly alike so when they are lined up they must be labelled so no one gets the wrong chair upon return. Many residents are very attached to their chairs and don't like the idea of them being left unattended and we have to explain to them that it is okay and their chair will still be there upon the return. Then getting the big Broda chairs into the bus is an even bigger feat. The platform on the lift is very sensitive to anything touching the safety holds and if one little screw or foot rest is touching the lift will not move. The Broda chairs are not at all like a regular wheel chair. They weigh, I swear 150 lbs and then add the weight of the person in them and they are heavy. There are little screws and levers all over them so that any part of the chair can be manipulated for comfort and to accommodate bathing or commode use or whatever. Loading the Broda's onto the lift means a series of adjusting and lifting parts of the chair until the lift platform is clear and it moves the resident up into the bus. Then manoeuvring them around in the bus to be able to attach the safety belts and chains is another feat. Needless to say, getting 10 residents and 3 Broda chairs onto the handi-bus, at night, takes at least a half an hour.
Now that mom is off of the drugs and out of the drug induced zombie-like state, yes she more alert. However, what we are now seeing are more dementia symptoms and traits surfacing. When mom is tired many of these traits appear. Sometimes mom will be sitting at a table and she will fold and unfold and fold and unfold a paper napkin, over and over. This is common in dementia patients and some days, as I sit with mom and others at the dining room table, the whole table will be playing with their napkins or playing with the bowl of sugar packs. Another common symptom is the repetition of phrases or words. It's like someone with OCD, turning the lights on and off a hundred times. Mom was tired by the time the light tour started and 5 minutes into the tour she started repeating, over and over and over these three things, "Clinker dust, tsunami, fugedda bout it". I just let mom repeat and repeat and repeat. When I engaged her in conversation or pointed out a house on her right to look at, she would stop and say "Those are nice lights," but then immediately go back to repeating "Clinker dust, tsunami, fugedda bout it". For the entire hour mom repeated those words.
I know where the words she repeated came from. What I don't know is how her mind is working that she would fixate on those three and at the same time. The clinker dust of course comes from her years of working at Canada Cement Lafarge. Mom was always washing her car because it was always covered in clinker dust and it always bothered her that her vehicles never looked pristine and new because of the clinker dust. I'm sure at some point she must have requested that the management do something about the clinker dust on her car. The tsunami of course is because of the big one that happened in the areas of the Indian ocean that killed over two hundred thousand people on Boxing day 2004. Mom had travelled over the years to many of the places that were devastated and it bothered her that so many people that she had met, were probably now gone. But the 'fugedda bout it' and in a Jersey shore accent yet, now that I didn't understand at all. Mom never liked the Soprano's. She didn't like the sex and violence and she especially didn't like the mental health issues that were prevalent in most of the episodes. She hated even more the early seasons when Tony struggles were blamed on his mother Livia. Those who are reading this that know of our family history will understand why portions of the TV show disturbed her. Still it was funny to listen her talk in a Jersey accent.
When we returned to the facility mom was disappointed and told me "I didn't like the tour". As I rolled her back to her ward, I asked her why. Her answer astounded me and at the same time it made me smile from ear to ear. Mom said "We didn't go to Gary and Lana's". It didn't matter that mom didn't realize that we weren't in Canmore or that Gary had passed away a few years ago. What did matter is that she remembers. Every year we would walk to Gary and Lana's house to see the spectacular lights and figurines. There are pictures of me as a child in front of their house by the school and pictures of my kids at their house on 9th ave. It was another Christmas tradition that mom remembered.
Getting a dozen residents into the handi-bus is not small feat. Many of the residents, although walking, don't have have the strength to use the stairs to get up into the bus, so the lift must be used. Others are in wheelchairs so the lift must be used again to get them in, then with help they are transferred into a seat and then to get the wheelchair back down, the lift must be used again. Most of the wheelchairs look exactly alike so when they are lined up they must be labelled so no one gets the wrong chair upon return. Many residents are very attached to their chairs and don't like the idea of them being left unattended and we have to explain to them that it is okay and their chair will still be there upon the return. Then getting the big Broda chairs into the bus is an even bigger feat. The platform on the lift is very sensitive to anything touching the safety holds and if one little screw or foot rest is touching the lift will not move. The Broda chairs are not at all like a regular wheel chair. They weigh, I swear 150 lbs and then add the weight of the person in them and they are heavy. There are little screws and levers all over them so that any part of the chair can be manipulated for comfort and to accommodate bathing or commode use or whatever. Loading the Broda's onto the lift means a series of adjusting and lifting parts of the chair until the lift platform is clear and it moves the resident up into the bus. Then manoeuvring them around in the bus to be able to attach the safety belts and chains is another feat. Needless to say, getting 10 residents and 3 Broda chairs onto the handi-bus, at night, takes at least a half an hour.
Now that mom is off of the drugs and out of the drug induced zombie-like state, yes she more alert. However, what we are now seeing are more dementia symptoms and traits surfacing. When mom is tired many of these traits appear. Sometimes mom will be sitting at a table and she will fold and unfold and fold and unfold a paper napkin, over and over. This is common in dementia patients and some days, as I sit with mom and others at the dining room table, the whole table will be playing with their napkins or playing with the bowl of sugar packs. Another common symptom is the repetition of phrases or words. It's like someone with OCD, turning the lights on and off a hundred times. Mom was tired by the time the light tour started and 5 minutes into the tour she started repeating, over and over and over these three things, "Clinker dust, tsunami, fugedda bout it". I just let mom repeat and repeat and repeat. When I engaged her in conversation or pointed out a house on her right to look at, she would stop and say "Those are nice lights," but then immediately go back to repeating "Clinker dust, tsunami, fugedda bout it". For the entire hour mom repeated those words.
I know where the words she repeated came from. What I don't know is how her mind is working that she would fixate on those three and at the same time. The clinker dust of course comes from her years of working at Canada Cement Lafarge. Mom was always washing her car because it was always covered in clinker dust and it always bothered her that her vehicles never looked pristine and new because of the clinker dust. I'm sure at some point she must have requested that the management do something about the clinker dust on her car. The tsunami of course is because of the big one that happened in the areas of the Indian ocean that killed over two hundred thousand people on Boxing day 2004. Mom had travelled over the years to many of the places that were devastated and it bothered her that so many people that she had met, were probably now gone. But the 'fugedda bout it' and in a Jersey shore accent yet, now that I didn't understand at all. Mom never liked the Soprano's. She didn't like the sex and violence and she especially didn't like the mental health issues that were prevalent in most of the episodes. She hated even more the early seasons when Tony struggles were blamed on his mother Livia. Those who are reading this that know of our family history will understand why portions of the TV show disturbed her. Still it was funny to listen her talk in a Jersey accent.
When we returned to the facility mom was disappointed and told me "I didn't like the tour". As I rolled her back to her ward, I asked her why. Her answer astounded me and at the same time it made me smile from ear to ear. Mom said "We didn't go to Gary and Lana's". It didn't matter that mom didn't realize that we weren't in Canmore or that Gary had passed away a few years ago. What did matter is that she remembers. Every year we would walk to Gary and Lana's house to see the spectacular lights and figurines. There are pictures of me as a child in front of their house by the school and pictures of my kids at their house on 9th ave. It was another Christmas tradition that mom remembered.
Sunday 16 December 2012
The Dementia Diary: Early x-mas gifts
The Dementia Diary: Early x-mas gifts: For the past week, I really haven't felt like writing. Not just the blog but anything. I'm tired and saddened by the weeks events in my li...
Early x-mas gifts
For the past week, I really haven't felt like writing. Not just the blog but anything. I'm tired and saddened by the weeks events in my life and in the world. But, there is nothing like a x-mas party to turn that around.
The facility mom is in hosted a x-mas party for all the residents and their families. I honestly wasn't expecting a big turn out because I am there everyday and so many of the residents don't have family or friends near by and often and those who do, don't see them as much as I feel they should. So, when well over 150 people showed up, my sadness was replaced with Christmas cheer. There was x-mas punch, coffee and tea and sweet treats and music and Santa. The room was so full of love for the season and for the residents that often I was smiling. I got to meet some of the residents kids and grand kids and great grand kids and even a great-great grandchild, although she was only weeks old. I truly enjoyed it as did my dad and as did mom.
It made me look over the events of the week and not with sadness but with a feeling of gratitude for what I do have in my life and for the little miracles that happen everyday that we often don't see. Here are a few of the little miracles that I got from mom this week, early x-mas gifts.
On Monday she told me that I need to get a haircut. Mom has always hated that I keep my bangs long and in my face. As she said it, she moved her hand up and brushed my bangs away from my eyes and for a moment I was a little girl again.
On Tuesday at lunch mom she grabbed a spoon and tried so very hard to get herself a spoonful of pudding. With a little help she was able to.
On Wednesday Ryley said "I'm so happy that you're my mom and not someone else's."
On Thursday mom told me that I looked tired and I should go home for a nap. She was right and I did.
On Friday my daughter FB'd messaged me from somewhere in South America with 'I love you Maw."
Yesterday mom drank from the plastic cups, by herself. Without any assistance she picked up the cup and brought it to her mouth, took a gulp and set the cup back down on the table. I cried a few happy tears.
Today will be happy again because I choose so. Anytime I spend angry or resentful is time wasted and it's time that I should have spent happy. Today I will be happy and so will mom because dad brought her an early x-mas gift too. He designed and built a contraption that she can rest books or magazines on and read. She loved it and it will get a lot of use.
The facility mom is in hosted a x-mas party for all the residents and their families. I honestly wasn't expecting a big turn out because I am there everyday and so many of the residents don't have family or friends near by and often and those who do, don't see them as much as I feel they should. So, when well over 150 people showed up, my sadness was replaced with Christmas cheer. There was x-mas punch, coffee and tea and sweet treats and music and Santa. The room was so full of love for the season and for the residents that often I was smiling. I got to meet some of the residents kids and grand kids and great grand kids and even a great-great grandchild, although she was only weeks old. I truly enjoyed it as did my dad and as did mom.
It made me look over the events of the week and not with sadness but with a feeling of gratitude for what I do have in my life and for the little miracles that happen everyday that we often don't see. Here are a few of the little miracles that I got from mom this week, early x-mas gifts.
On Monday she told me that I need to get a haircut. Mom has always hated that I keep my bangs long and in my face. As she said it, she moved her hand up and brushed my bangs away from my eyes and for a moment I was a little girl again.
On Tuesday at lunch mom she grabbed a spoon and tried so very hard to get herself a spoonful of pudding. With a little help she was able to.
On Wednesday Ryley said "I'm so happy that you're my mom and not someone else's."
On Thursday mom told me that I looked tired and I should go home for a nap. She was right and I did.
On Friday my daughter FB'd messaged me from somewhere in South America with 'I love you Maw."
Yesterday mom drank from the plastic cups, by herself. Without any assistance she picked up the cup and brought it to her mouth, took a gulp and set the cup back down on the table. I cried a few happy tears.
Today will be happy again because I choose so. Anytime I spend angry or resentful is time wasted and it's time that I should have spent happy. Today I will be happy and so will mom because dad brought her an early x-mas gift too. He designed and built a contraption that she can rest books or magazines on and read. She loved it and it will get a lot of use.
Tuesday 11 December 2012
The Dementia Diary: I'm not imagining things
The Dementia Diary: I'm not imagining things: As I mentioned in other posts, I had mom's drug regime changed. Now it's simple, one pill at night to help her sleep and that's it. No mo...
I'm not imagining things
As I mentioned in other posts, I had mom's drug regime changed. Now it's simple, one pill at night to help her sleep and that's it. No more anti-epileptics pills. No more anti-anxiety pills. No more anti-depressants. No more anti-coagulants and no more anti-psychotics. NO MORE ANTI ANYTHING.
The change has been absolutely mind-blowing. When I got here three months ago my mom barely talked. She could not use her hands, even to scratch her face. She basically slept all the time and was rigid and couldn't support her head. As she was gradually weaned off the drugs, more and more of her began to re-appear. Now more and more and more of her has come back. She is so alert and so aware and so there, most of the time, that it's like she doesn't have dementia. Well, not really, it's still very obvious that she has dementia, but the changes are heart warming and make everyday that much more enjoyable.
This morning when I went to get mom for mass, one of her care givers told me how she had to stop mom from trying to get out of bed, "She's trying to get outta of Dodge," she said with a big smile. We are all so amazed at the bounce back. The only medical explanation or reason for it is stopping the drug regime. In fact, the doctor who had her on all those drugs for all those years is in such disbelief that he is coming out this week to see for himself. At times, I myself can't believe it but I know because others notice the changes and differences in mom. I am though chalking up some of those changes to prayer and support. Many people besides me have been praying for mom and many people besides me come to see her regularly and let her know that although she may forget, they don't forget her. Really, I don't care if it's prayer, the universe, no drugs or support, I'm just glad that the times when she is 'there' now out number the times when she isn't 'there'.
Three months ago I was really quite pessimistic. Now, I'm optimistic. I know that not only will mom make to Christmas, but God willing she will be around for awhile. The joy that fills my heart when I see my mom turn the page of a magazine now and try to use her hands and then her even trying to get out of bed means that she feels the changes too and her zest for life has been renewed. She actually tells me now, that she's bored. To rid her of the boredom I keep her in a steady supply of books and magazines and colouring books and anything that occupies her time. I have a belief that if you snooze, you lose, so I have asked to Occupational therapists to work with mom so she can maintain using her hands and possibly even get more use back.
I am even hopeful that her swallowing will improve. I realize that I might be setting myself up for disappointment but I'm hoping and I will keep hoping because I never expected for her hands to come back or her mind to ever improve. Yes parts of her brain are gone and they won't come back. But, maybe because of persistence and determination on both my part and mom's, we have retrained parts of her brain or who knows, maybe parts that have never been used are now being utilized. The brain is still such a mystery that this is what I think has happened with mom. I'm no neurologist or doctor but what I have learnt from my own brain injury and rehab and from mom's great improvements, anything is possible.
For those of you who are still in doubt, below are two video's of my mom. The first is about 3 weeks ago and the second is from this morning. You be the judge, because I'm not imagining things.
The change has been absolutely mind-blowing. When I got here three months ago my mom barely talked. She could not use her hands, even to scratch her face. She basically slept all the time and was rigid and couldn't support her head. As she was gradually weaned off the drugs, more and more of her began to re-appear. Now more and more and more of her has come back. She is so alert and so aware and so there, most of the time, that it's like she doesn't have dementia. Well, not really, it's still very obvious that she has dementia, but the changes are heart warming and make everyday that much more enjoyable.
This morning when I went to get mom for mass, one of her care givers told me how she had to stop mom from trying to get out of bed, "She's trying to get outta of Dodge," she said with a big smile. We are all so amazed at the bounce back. The only medical explanation or reason for it is stopping the drug regime. In fact, the doctor who had her on all those drugs for all those years is in such disbelief that he is coming out this week to see for himself. At times, I myself can't believe it but I know because others notice the changes and differences in mom. I am though chalking up some of those changes to prayer and support. Many people besides me have been praying for mom and many people besides me come to see her regularly and let her know that although she may forget, they don't forget her. Really, I don't care if it's prayer, the universe, no drugs or support, I'm just glad that the times when she is 'there' now out number the times when she isn't 'there'.
Three months ago I was really quite pessimistic. Now, I'm optimistic. I know that not only will mom make to Christmas, but God willing she will be around for awhile. The joy that fills my heart when I see my mom turn the page of a magazine now and try to use her hands and then her even trying to get out of bed means that she feels the changes too and her zest for life has been renewed. She actually tells me now, that she's bored. To rid her of the boredom I keep her in a steady supply of books and magazines and colouring books and anything that occupies her time. I have a belief that if you snooze, you lose, so I have asked to Occupational therapists to work with mom so she can maintain using her hands and possibly even get more use back.
I am even hopeful that her swallowing will improve. I realize that I might be setting myself up for disappointment but I'm hoping and I will keep hoping because I never expected for her hands to come back or her mind to ever improve. Yes parts of her brain are gone and they won't come back. But, maybe because of persistence and determination on both my part and mom's, we have retrained parts of her brain or who knows, maybe parts that have never been used are now being utilized. The brain is still such a mystery that this is what I think has happened with mom. I'm no neurologist or doctor but what I have learnt from my own brain injury and rehab and from mom's great improvements, anything is possible.
For those of you who are still in doubt, below are two video's of my mom. The first is about 3 weeks ago and the second is from this morning. You be the judge, because I'm not imagining things.
Sunday 9 December 2012
The Dementia Diary: There are so many things to miss
The Dementia Diary: There are so many things to miss: I'm often asked what I miss the most about mom. I know that sounds like she's already gone and in a way she is. There are so many things t...
There are so many things to miss
I'm often asked what I miss the most about mom. I know that sounds like she's already gone and in a way she is. There are so many things to miss and the list is long but I can narrow it down to two things that I miss the most.
I honestly believed that my mom would be on the other end of the phone until the end of eternity. Some people like to sit and watch TV but my mom liked to sit and talk on the phone. She thought that cordless phones were best invention ever as then she could walk around the house and even go to the bathroom, while on the phone.
When I was young, mom had a routine. After dinner was done and us kids had tidied up she would move a chair over to the phone and start calling. Her calls were information seeking (gossip). If she heard a rumour or even a whisper of a rumour, she was determined to get to the bottom of it, she just had to know. So, she would call her circle of friends and under the guise of wanting a recipe or bitching about us kids and dad, she would skillfully extract information from them. Let's say mom had heard that Bob and Linda were having marriage problems. She would never come out and say "Sylvia, I heard Bob and Linda are having troubles in the marriage". No, mom was like a spy she would say "Sylvia, I saw Linda today at Marra's and she seemed so sad, I hope she's not sick". The person at the other end of the line didn't want my mom to get the wrong idea so if they had the information, they would divulge it and mom got her confirmation. If they didn't have an answer, mom would wrap of the conversation with the usual "Well, I should let you go, I'm sure you have things to do," and that was that. Then she would call someone else and try again to solicit information. Really, she had gossipping down to a science.
When I moved away from home mom would call me at least twice a day, in the morning before she left for work and in the evening. If I wasn't home to answer the evening call, she'd call and call and call and call and call until I answered. She would never leave a message but often I could hear remnants of a message in her commentary she would say to herself like "Really, where is she?" or the always popular big SIGH of frustration. Sometimes just to piss her off I wouldn't call back and I would leave it until the following morning when she would call and not even say hello before reaming me out for not calling her back. It was too funny.
When the dementia started to set in, mom would call me and everybody in her address book at least a half a dozen times a day. Many of the calls I wouldn't answer because I had just talked to her maybe an hour earlier. However now, I miss those calls. I miss hearing that blueberries are on sale at Safeway and she'll get dad to go to the store so she can make muffins or that she just saw on CBC that bomb went off in the Gaza and how terrible that is. I miss the sound of her voice on the other end of the phone.
The other thing I miss and most caregivers of dementia patients miss it too, is mom's smile. It's a sad symptom of dementia as not only do they lose emotions and feelings but they lose control of the muscles that are needed to smile. Dementia patients have a very blank, emotionless look over their face and it's sad to see and even sadder to see in my mother. Mom had a big, tooth shining smile and her big brown eyes would light up with joy. You could tell when mom was happy, she couldn't hide it and her smile would say it all and mom smiled a lot. Mom wasn't a woman who gave a lot of praise in the form of words. To this day I've never heard "Lisa-Marie, I'm proud of you," but then I don't need to. I don't need to because mom was always there at any function or school awards day and her smile would say it all. She smiles on the inside now and I can see it because it shines through.
I honestly believed that my mom would be on the other end of the phone until the end of eternity. Some people like to sit and watch TV but my mom liked to sit and talk on the phone. She thought that cordless phones were best invention ever as then she could walk around the house and even go to the bathroom, while on the phone.
When I was young, mom had a routine. After dinner was done and us kids had tidied up she would move a chair over to the phone and start calling. Her calls were information seeking (gossip). If she heard a rumour or even a whisper of a rumour, she was determined to get to the bottom of it, she just had to know. So, she would call her circle of friends and under the guise of wanting a recipe or bitching about us kids and dad, she would skillfully extract information from them. Let's say mom had heard that Bob and Linda were having marriage problems. She would never come out and say "Sylvia, I heard Bob and Linda are having troubles in the marriage". No, mom was like a spy she would say "Sylvia, I saw Linda today at Marra's and she seemed so sad, I hope she's not sick". The person at the other end of the line didn't want my mom to get the wrong idea so if they had the information, they would divulge it and mom got her confirmation. If they didn't have an answer, mom would wrap of the conversation with the usual "Well, I should let you go, I'm sure you have things to do," and that was that. Then she would call someone else and try again to solicit information. Really, she had gossipping down to a science.
When I moved away from home mom would call me at least twice a day, in the morning before she left for work and in the evening. If I wasn't home to answer the evening call, she'd call and call and call and call and call until I answered. She would never leave a message but often I could hear remnants of a message in her commentary she would say to herself like "Really, where is she?" or the always popular big SIGH of frustration. Sometimes just to piss her off I wouldn't call back and I would leave it until the following morning when she would call and not even say hello before reaming me out for not calling her back. It was too funny.
When the dementia started to set in, mom would call me and everybody in her address book at least a half a dozen times a day. Many of the calls I wouldn't answer because I had just talked to her maybe an hour earlier. However now, I miss those calls. I miss hearing that blueberries are on sale at Safeway and she'll get dad to go to the store so she can make muffins or that she just saw on CBC that bomb went off in the Gaza and how terrible that is. I miss the sound of her voice on the other end of the phone.
Wednesday 5 December 2012
The Dementia Diary: It tastes just like mother's
The Dementia Diary: It tastes just like mother's: My mother didn't teach me to cook. Mom didn't like cooking. Cooking to her was a duty that was performed only to ensure that your family a...
It tastes just like mother's
My mother didn't teach me to cook. Mom didn't like cooking. Cooking to her was a duty that was performed only to ensure that your family ate. It was a chore she really didn't like but performed daily. Like most mother's of the time, the crock pot and anything of convienence set the meals. So, our cupboard had plenty of Hamburger Helper, Count Chocula, Tang and any vegetable that the Jolly Green Giant could put in a can. Crock pot roast beef, crock pot stew, crock pot chilie, crock pot chicken etc, etc. My mom would put anything and everything into a crock pot. We never complained because she drilled it in to us that if someone takes the time to cook a meal, then you shut up, eat it and never complain. We never did. But I would often think that she really isn't cooking, the crock pot did the cooking and the vegetables were out of a can and one of the after school chores was to peel the potatoes, so I never really understood her 'cooking' mentality.
Making pies was different. Making pies was an art form to my mother and she loved it. Because she loved making pies, she made the most incredible pies. Her homemade lemon meringue (never from a box of convenience), Saskatoon berry or raspberry peach or just plain apple, it didn't matter, they were heaven to eat. I don't think her recipe was handed down to her as my grandmother made incredible bread but I don't remember her pies being as tasty as my mom's. Mom never made just one pie. Pie making was a full day's event done a couple times a year, depending on the fruits in season and she would make at least a dozen pies, even more, per session. Her recipe was never written down and I was told, at a very young age, to watch and learn. I never did and there were countless numbers of pie making sessions. I have tried many times over the years to master her secret recipe and I never did. I would phone and ask her for the recipe and she would always answer the same, "Lisa-marie, there is no recipe and I've shown you hundreds of times to touch and taste it". The problem is I never knew her touch or her taste while making the crust, only that the finished product was the flakiest, tastiest pie crust ever created on God's green earth.
It wasn't only the pie crust, but the fillings too. Her apple pie filling was thick and chunky and not too sweet. Any filling with berries or cherries was never runny or messy and again, always thick. The homemade lemon filling was never too tart or too sweet and was absolutely refreshing on the palate. Even her meat pies were incredible. The crust would always hold the meat and together in, they never fell apart and again simply wonderful to eat.
So, determined to make a pie just like mom's pie I first combed through all of her recipe boxes, hoping it was written somewhere. After two days of looking, it wasn't there. I meditate daily for 10 minutes after yoga. Normally I meditate to clear my mind and keep it clear. Today, my mantra was pie crust. I meditated for a long time and went back 15 years to the last time mom and I made pie together. I visualized every step of the crust and every step of the apple filling and when I came out of my trance, I jumped up and wrote everything that I saw in my mind down on a piece of paper. Then I went to Safeway, bought what I thought I needed and went back home to start baking mom's pie.
First I put the butter and the vegetable shortening into the freezer along with a bottle of white vinegar (yes her secret was using both butter and lard and they had to be really chilled and the vinegar did too). While meditating I remembered her repeating that over and over, that they must be chilled. I then sifted both the cake flour and the all purpose flour (that was another trick of hers, two types of flour and sift them even if you have sifted flour). Then I mixed a bit of flour with brown sugar, nutmeg, cinnamon, salt and cornstarch. I peeled and roughly cubed the apples and squeezed a lemon over them. I mixed the apples with the flour and sugar mixture and set them aside in the fridge.
When the butter and shortening were well chilled I cut chunks into the flour and mixed it with a pastry cutter. I spritzed it with chilled vinegar and added more flour and mixed again and added more vinegar and mixed again. When the mixture held together when squeezed, I tasted it. I really didn't know what I was tasting for but I did it anyways. Then I put the mixture into a plastic bag and formed it into a ball. I put the bag of pie dough AND the pie pan, into the fridge. I preheated the oven to 425 degrees. Then I anxiously waited.
After half an hour I took the dough from the fridge. I cut the pie dough ball in half and floured the two halves, not the counter (I recalled that during meditation). I put some wax paper on the counter and rolled the first dough ball until it was flat and round. It transferred successfully to the pie pan without a crack so I knew then I was headed down the right pie path. I put the filling in, rolled out the other dough, crimped the edges, egg washed it and sprinkled just a hint of cinnamon over the top crust. I said a prayer before putting it in the oven.
After 10 minutes, I lowered the temperature to 375 degrees (another thought that came to me while meditating). I baked it for another 35 minutes and I took it out. It looked my mom's pie, it smelled like mom's pie but the true test would have to wait for 30 minutes while it rested.
Dad complained that it was too early for pie but I insisted he try it and I cut him a slice. It held together and and filling slowly and gently slid onto the plate. I cut myself a piece. I watched as dad made a coffee and then dicked about at the sink and took a bag out to the garage and dicked about some more before I finally piped up "Would you just eat the damn pie, please".
Finally he took a bite. He chewed and chewed for what seemed and eternity before swallowing. He said nothing as he took another bite. He chewed and swallowed and cleared his throat before saying "It tastes just like mother's". I smiled, mom would be so pleased I thought.
I rushed over for lunch to mom's home. I wished that she could eat the pie but I know she can't and I didn't want to risk her choking on pie. But I told her. I told her how I thought and thought and I was able to remember all the little tricks and I told her that I used both lard and butter and I chilled them and I used two types of flour and chilled vinegar, not water and it worked. I told her I mastered her recipe. Mom didn't smile but she was smiling on the inside because I could see it and then she said "Finally".
Making pies was different. Making pies was an art form to my mother and she loved it. Because she loved making pies, she made the most incredible pies. Her homemade lemon meringue (never from a box of convenience), Saskatoon berry or raspberry peach or just plain apple, it didn't matter, they were heaven to eat. I don't think her recipe was handed down to her as my grandmother made incredible bread but I don't remember her pies being as tasty as my mom's. Mom never made just one pie. Pie making was a full day's event done a couple times a year, depending on the fruits in season and she would make at least a dozen pies, even more, per session. Her recipe was never written down and I was told, at a very young age, to watch and learn. I never did and there were countless numbers of pie making sessions. I have tried many times over the years to master her secret recipe and I never did. I would phone and ask her for the recipe and she would always answer the same, "Lisa-marie, there is no recipe and I've shown you hundreds of times to touch and taste it". The problem is I never knew her touch or her taste while making the crust, only that the finished product was the flakiest, tastiest pie crust ever created on God's green earth.
It wasn't only the pie crust, but the fillings too. Her apple pie filling was thick and chunky and not too sweet. Any filling with berries or cherries was never runny or messy and again, always thick. The homemade lemon filling was never too tart or too sweet and was absolutely refreshing on the palate. Even her meat pies were incredible. The crust would always hold the meat and together in, they never fell apart and again simply wonderful to eat.
So, determined to make a pie just like mom's pie I first combed through all of her recipe boxes, hoping it was written somewhere. After two days of looking, it wasn't there. I meditate daily for 10 minutes after yoga. Normally I meditate to clear my mind and keep it clear. Today, my mantra was pie crust. I meditated for a long time and went back 15 years to the last time mom and I made pie together. I visualized every step of the crust and every step of the apple filling and when I came out of my trance, I jumped up and wrote everything that I saw in my mind down on a piece of paper. Then I went to Safeway, bought what I thought I needed and went back home to start baking mom's pie.
First I put the butter and the vegetable shortening into the freezer along with a bottle of white vinegar (yes her secret was using both butter and lard and they had to be really chilled and the vinegar did too). While meditating I remembered her repeating that over and over, that they must be chilled. I then sifted both the cake flour and the all purpose flour (that was another trick of hers, two types of flour and sift them even if you have sifted flour). Then I mixed a bit of flour with brown sugar, nutmeg, cinnamon, salt and cornstarch. I peeled and roughly cubed the apples and squeezed a lemon over them. I mixed the apples with the flour and sugar mixture and set them aside in the fridge.
When the butter and shortening were well chilled I cut chunks into the flour and mixed it with a pastry cutter. I spritzed it with chilled vinegar and added more flour and mixed again and added more vinegar and mixed again. When the mixture held together when squeezed, I tasted it. I really didn't know what I was tasting for but I did it anyways. Then I put the mixture into a plastic bag and formed it into a ball. I put the bag of pie dough AND the pie pan, into the fridge. I preheated the oven to 425 degrees. Then I anxiously waited.
After half an hour I took the dough from the fridge. I cut the pie dough ball in half and floured the two halves, not the counter (I recalled that during meditation). I put some wax paper on the counter and rolled the first dough ball until it was flat and round. It transferred successfully to the pie pan without a crack so I knew then I was headed down the right pie path. I put the filling in, rolled out the other dough, crimped the edges, egg washed it and sprinkled just a hint of cinnamon over the top crust. I said a prayer before putting it in the oven.
After 10 minutes, I lowered the temperature to 375 degrees (another thought that came to me while meditating). I baked it for another 35 minutes and I took it out. It looked my mom's pie, it smelled like mom's pie but the true test would have to wait for 30 minutes while it rested.
Dad complained that it was too early for pie but I insisted he try it and I cut him a slice. It held together and and filling slowly and gently slid onto the plate. I cut myself a piece. I watched as dad made a coffee and then dicked about at the sink and took a bag out to the garage and dicked about some more before I finally piped up "Would you just eat the damn pie, please".
Finally he took a bite. He chewed and chewed for what seemed and eternity before swallowing. He said nothing as he took another bite. He chewed and swallowed and cleared his throat before saying "It tastes just like mother's". I smiled, mom would be so pleased I thought.
I rushed over for lunch to mom's home. I wished that she could eat the pie but I know she can't and I didn't want to risk her choking on pie. But I told her. I told her how I thought and thought and I was able to remember all the little tricks and I told her that I used both lard and butter and I chilled them and I used two types of flour and chilled vinegar, not water and it worked. I told her I mastered her recipe. Mom didn't smile but she was smiling on the inside because I could see it and then she said "Finally".
Tuesday 4 December 2012
The Dementia Diary: Why a diary about dementia
The Dementia Diary: Why a diary about dementia: This is not a horror story. Well it is, because this is diary about a mother and a daughter and their journey into the depths of Dementia. ...
Monday 3 December 2012
The Dementia Diary: Roses in the winter
The Dementia Diary: Roses in the winter: Another resident passed away yesterday afternoon. I am very saddened by his passing. He didn't know me as he was blind and unable to talk ...
Roses in the winter
Another resident passed away yesterday afternoon. I am very saddened by his passing. He didn't know me as he was blind and unable to talk or really form any thought but I knew him. But people on mom's ward become like family and when they pass, it's saddening.
His wife was a God send to me. Like me she was a care giver and had been at the facility everyday for the last 5 years to help with the care and feeding of her husband. When I arrived she could see and sense my sadness. One day she joined me for a coffee and we got to know each other. She told me to stop holding in your tears and just cry, and you can cry with me and I did. I bawled into her shoulder. What I loved about her is she is like me, she doesn't candy coat the truth or the reality. She spoke to me of her journey along side her husband and how difficult it is has been and told me that it doesn't get easier. She helped me to accept what is happening to mom and face the future with strength and grace. She reminisced with me as she knew my mother as a volunteer and how gentle and loving mom was with the residents. It made me proud. But she told me the most important thing I ever heard, a quote from Sir John Barrie, the author of Peter Pan, he once said 'God gave all of his children memory so that they might have roses in December'. I have heard that quote so many times but to hear it that day made me stop and think. It was fall and winter was coming and caring for my mother would be cold and dreary but I would always have the memories of the woman she was and our countless moments together and those would be my roses in the winter. But in those early days I looked at the trees and all the beauty of the fall and I wished that aging was like the leaves, who in their last days are so colourful and full of life.
Losing a loved one to dementia is an interminable loss. It seems to have no beginning or end. First you lose their short term memory. Then their ability to do simple tasks is lost and you no longer can rely on them to even put groceries away properly or take a phone message. Suddenly they can't remember simple words or context and they will make up nonsensical words and conversation is difficult so you can no longer talk to your loved one. They then lose the ability to write or sign their name. Eventually they lose the concept of time and days get mixed and they will be up all night and you can't sleep. Dementia will take away their ability to orientate themselves and they won't know where they are, even if it's a familiar place. A person will lose their ability to judge appropriately and on a hot day they might wear a toque or many layers of clothing. They lose their ability to manage their moods and will have extreme mood swings for no reason until they lose their emotions completely and become essentially lifeless. A person with dementia may seem different from his or her usual self in ways that are difficult to pinpoint. A person may become suspicious, irritable, depressed, apathetic or anxious and agitated especially in situations where memory problems are causing difficulties. They will also lose their initiative for simple daily things like social outings or time with family and become very passive, sitting for hours in front of the TV or sleeping all day.
His wife was a God send to me. Like me she was a care giver and had been at the facility everyday for the last 5 years to help with the care and feeding of her husband. When I arrived she could see and sense my sadness. One day she joined me for a coffee and we got to know each other. She told me to stop holding in your tears and just cry, and you can cry with me and I did. I bawled into her shoulder. What I loved about her is she is like me, she doesn't candy coat the truth or the reality. She spoke to me of her journey along side her husband and how difficult it is has been and told me that it doesn't get easier. She helped me to accept what is happening to mom and face the future with strength and grace. She reminisced with me as she knew my mother as a volunteer and how gentle and loving mom was with the residents. It made me proud. But she told me the most important thing I ever heard, a quote from Sir John Barrie, the author of Peter Pan, he once said 'God gave all of his children memory so that they might have roses in December'. I have heard that quote so many times but to hear it that day made me stop and think. It was fall and winter was coming and caring for my mother would be cold and dreary but I would always have the memories of the woman she was and our countless moments together and those would be my roses in the winter. But in those early days I looked at the trees and all the beauty of the fall and I wished that aging was like the leaves, who in their last days are so colourful and full of life.
Losing a loved one to dementia is an interminable loss. It seems to have no beginning or end. First you lose their short term memory. Then their ability to do simple tasks is lost and you no longer can rely on them to even put groceries away properly or take a phone message. Suddenly they can't remember simple words or context and they will make up nonsensical words and conversation is difficult so you can no longer talk to your loved one. They then lose the ability to write or sign their name. Eventually they lose the concept of time and days get mixed and they will be up all night and you can't sleep. Dementia will take away their ability to orientate themselves and they won't know where they are, even if it's a familiar place. A person will lose their ability to judge appropriately and on a hot day they might wear a toque or many layers of clothing. They lose their ability to manage their moods and will have extreme mood swings for no reason until they lose their emotions completely and become essentially lifeless. A person with dementia may seem different from his or her usual self in ways that are difficult to pinpoint. A person may become suspicious, irritable, depressed, apathetic or anxious and agitated especially in situations where memory problems are causing difficulties. They will also lose their initiative for simple daily things like social outings or time with family and become very passive, sitting for hours in front of the TV or sleeping all day.
Eventually a person with dementia loses themselves and then the physical losses will begin. Due to changes in the cerebral cortex, persons with dementia often
experience changes in mobility and balance. Thus, basic functions like walking,
standing, and sitting may become increasingly difficult as the disease
progresses and eventually they lose the ability to walk. A person in the later stages of dementia
has uncontrolled bowel and bladder function. This should not be confused with a
person who cannot remember how to use the restroom or simply cannot find the
restroom, even in their own home. A person in late stages of dementia may not
receive the nerve signals in the brain signalling the necessity to urinate or
have a bowel movement. Appetite is lost in most dementias so many won't eat and sometimes they lose the ability to swallow properly (like mom) and they lose to ability to eat. Eventually they lose control of their muscles and they can't hold a spoon or even scratch their nose. It's retrogenesis literally because it's back to birth and it describes the gradual loss of everything by the dementia patient
as the person ultimately functions much as a newborn baby. They are helpless, need diapering and feeding and the only way left for many dementia patients to communicate is by crying or grunting.
I'm going to send roses to the widow today and I will keep my roses in my mind.
Saturday 1 December 2012
The Dementia Diary: Sometimes you just gotta laugh
The Dementia Diary: Sometimes you just gotta laugh: I cry a lot lately. Some are happy tears and some are sad tears and some are anger tears and some are just release. Tears are the words th...
Sometimes you just gotta laugh
I cry a lot lately. Some are happy tears and some are sad tears and some are anger tears and some are just release. Tears are the words that the heart can't say. Apparently this blog makes many people cry. They cry because they know me or mom or they cry because they have or are experiencing the same emotional roller coaster that I'm on. I appreciate the tears, the tears of any kind. Well today, I hope you read this blog and you cry again, only today I hope you are laughing so hard that the tears stream your face and maybe you even pee a little.
An
elderly couple, each widowed, had been dating for a long time. Urged on by
their friends, they finally decided to get married.
Prior to the ceremony, they went out to dinner and had a long conversation regarding how their marriage might work. They discussed finances, living arrangements, etc. Finally, the old gentleman approached the subject of their physical relationship.
'How do you feel about sex?' he asked, rather tentatively.
'I would like it infrequently', she replied.
The old gentleman sat quietly for a moment, adjusted his glasses, then leaned over towards her and whispered, 'Is that one word or two?'
Prior to the ceremony, they went out to dinner and had a long conversation regarding how their marriage might work. They discussed finances, living arrangements, etc. Finally, the old gentleman approached the subject of their physical relationship.
'How do you feel about sex?' he asked, rather tentatively.
'I would like it infrequently', she replied.
The old gentleman sat quietly for a moment, adjusted his glasses, then leaned over towards her and whispered, 'Is that one word or two?'
Now that
I'm old here's what I've discovered:
1. I started out with nothing, and I still have most of it.
2. My wild oats have turned into prunes and all-bran.
3. I finally got my head together, and now my body is falling apart.
1. I started out with nothing, and I still have most of it.
2. My wild oats have turned into prunes and all-bran.
3. I finally got my head together, and now my body is falling apart.
4. Funny,
I don't remember being absent-minded.
5. Funny, I don't remember being absent-minded.
6. If all is not lost, where is it?
7. It is easier to get older than it is to get wiser.
5. Funny, I don't remember being absent-minded.
6. If all is not lost, where is it?
7. It is easier to get older than it is to get wiser.
8. Some
days, you're the dog; some days you're the hydrant.
9. I wish the buck stopped here; I sure could use a few.
10. Kids in the back seat cause accidents.
9. I wish the buck stopped here; I sure could use a few.
10. Kids in the back seat cause accidents.
11.
Accidents in the back seat cause kids.
12. It's hard to make a comeback when you haven't been anywhere.
13. The only time the world beats a path to your door is when you're in the bathroom.
12. It's hard to make a comeback when you haven't been anywhere.
13. The only time the world beats a path to your door is when you're in the bathroom.
14. If
God wanted me to touch my toes, he'd have put them on my knees.
15. When I'm finally holding all the cards, why does everyone want to play chess?
16. Its not hard to meet expenses . . . they're everywhere.
17. The only difference between a rut and a grave is the depth.
18. These days, I spend a lot of time thinking about the hereafter. I go somewhere to get something, and then wonder what I'm hereafter.
19. Funny, I don't remember being absent-minded.
15. When I'm finally holding all the cards, why does everyone want to play chess?
16. Its not hard to meet expenses . . . they're everywhere.
17. The only difference between a rut and a grave is the depth.
18. These days, I spend a lot of time thinking about the hereafter. I go somewhere to get something, and then wonder what I'm hereafter.
19. Funny, I don't remember being absent-minded.
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