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...
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