Wednesday 31 October 2012
The Dementia Diary: The Dementia Diary: We are family
The Dementia Diary: The Dementia Diary: We are family: The Dementia Diary: We are family : One of the nurses asked me today why I come everyday. My answer was simply "She's my mother". Mary sai...
Halloween apples
My mom loved holidays. Any holiday and Halloween was no different. Because of my mom, I absolutely love Halloween. It's my favourite time of year, even better than x-mas or my un-birthday.
Mom taught me little tricks over the years and they stuck with me. She would put the hole in the bottom of the pumpkin, not the top where the stem is. She said it was easier to place the candle on the step, light it and then put the pumpkin over it than to struggle to light the candle with a match and burn yourself (there were no bar-b-que lighters then). She taught me that using a large lid of a jar to scrape the seeds out is easier than using a spoon. For pumpkin seeds, she would melt two teaspoons of butter (not oil) and mix the salt or the cinnamon and sugar or garlic salt into the butter and then coat the seeds in the mixture, that way every seed got some flavour.
Canmore was small in those days and Macleod's was the only store that sold costumes so unless a parent made a trip to Calgary, many of the kids were dressed the same. My mom always made my costumes. One year I was a gypsy. She used an old funky quilt, an old ugly orange shirt of my dad's and she sewed them together to make a gypsy dress. One of her scarves was tied around my head and she used mason jars rings as big gaudy earrings. Another year I was the caterpillar from Alice In Wonderland. She sewed a green, bulky body suit, used black hockey tape and made my Uncle Gene send one of his old pipes because she didn't know what a hookah was. One year when I wanted to be an old lady, she made a fake bun out of the hair from an old wig of hers, greased my hair and the bun with Bryll Cream and dusted it with flour to make grey hair. She took the lenses out of an old pair of sunglasses for ugly glasses and stuffed one of her bras so I had saggy boobs. She was great and creating costumes from what ever was around the house and whatever she could sew. I learnt from the best and I always made my kids costumes, except when Ryley was in his superhero phase.
At mom's home this year they had a pumpkin carving contest that was modified to accommodate the fact that many residents shouldn't use sharp objects. Mom didn't do it but I did with Janice and Alma. Instead of carving our pumpkin, we got red feathers and some felt from the art room and created "Angry Bird". Gerrie, a guy, who lost his wife to breast cancer did a pink pumpkin. There was smokin pumpkin and princess pumpkin and a penguin and it was a lot of fun. Mom watched and seemed to enjoy it.
Today they had a Halloween party and kids from the staff and members of the community came too. Some of staff dressed up and some patients too. They told bad Halloween jokes. We encouraged residents to speak about their superstitions or talk about a haunted place they knew and tell everyone what they did for Halloween with their children. There was punch and cookies and candy and the residents were pleased. Mom when was really pleased when I soaked one of the cookies in warm milk and mushed it up fine enough for her to swallow with the punch. She was alert and watching the kids and the people as they spoke. Then, to my surprise she blurted out "Halloween A-a-pples". I smiled and although this wasn't my usual Halloween with the pumpkin eating baby and bloody hand prints, it was fun and I pray she makes it to Christmas.
Mom taught me little tricks over the years and they stuck with me. She would put the hole in the bottom of the pumpkin, not the top where the stem is. She said it was easier to place the candle on the step, light it and then put the pumpkin over it than to struggle to light the candle with a match and burn yourself (there were no bar-b-que lighters then). She taught me that using a large lid of a jar to scrape the seeds out is easier than using a spoon. For pumpkin seeds, she would melt two teaspoons of butter (not oil) and mix the salt or the cinnamon and sugar or garlic salt into the butter and then coat the seeds in the mixture, that way every seed got some flavour.
Canmore was small in those days and Macleod's was the only store that sold costumes so unless a parent made a trip to Calgary, many of the kids were dressed the same. My mom always made my costumes. One year I was a gypsy. She used an old funky quilt, an old ugly orange shirt of my dad's and she sewed them together to make a gypsy dress. One of her scarves was tied around my head and she used mason jars rings as big gaudy earrings. Another year I was the caterpillar from Alice In Wonderland. She sewed a green, bulky body suit, used black hockey tape and made my Uncle Gene send one of his old pipes because she didn't know what a hookah was. One year when I wanted to be an old lady, she made a fake bun out of the hair from an old wig of hers, greased my hair and the bun with Bryll Cream and dusted it with flour to make grey hair. She took the lenses out of an old pair of sunglasses for ugly glasses and stuffed one of her bras so I had saggy boobs. She was great and creating costumes from what ever was around the house and whatever she could sew. I learnt from the best and I always made my kids costumes, except when Ryley was in his superhero phase.
At mom's home this year they had a pumpkin carving contest that was modified to accommodate the fact that many residents shouldn't use sharp objects. Mom didn't do it but I did with Janice and Alma. Instead of carving our pumpkin, we got red feathers and some felt from the art room and created "Angry Bird". Gerrie, a guy, who lost his wife to breast cancer did a pink pumpkin. There was smokin pumpkin and princess pumpkin and a penguin and it was a lot of fun. Mom watched and seemed to enjoy it.
Today they had a Halloween party and kids from the staff and members of the community came too. Some of staff dressed up and some patients too. They told bad Halloween jokes. We encouraged residents to speak about their superstitions or talk about a haunted place they knew and tell everyone what they did for Halloween with their children. There was punch and cookies and candy and the residents were pleased. Mom when was really pleased when I soaked one of the cookies in warm milk and mushed it up fine enough for her to swallow with the punch. She was alert and watching the kids and the people as they spoke. Then, to my surprise she blurted out "Halloween A-a-pples". I smiled and although this wasn't my usual Halloween with the pumpkin eating baby and bloody hand prints, it was fun and I pray she makes it to Christmas.
Monday 29 October 2012
The Dementia Diary: We are family
The Dementia Diary: We are family: One of the nurses asked me today why I come everyday. My answer was simply "She's my mother". Mary said that she wouldn't do it for her mo...
We are family
One of the nurses asked me today why I come everyday. My answer was simply "She's my mother". Mary said that she wouldn't do it for her mother and that my mom and I must be close. I told her the truth, mom and I didn't have a good relationship but we didn't have a bad relationship either. I love her because she's my mom and she loves me because I'm her daughter. We would fight and argue a lot and I really can't think of one thing that we ever saw eye to eye on. I would disown her sometimes and she would go to extremes to try to get me to do things her way but it was 'our' relationship, it was "OUR' relationship. I know that if the roles were reversed and I was the one sick and unable to care for myself that my mother would be there caring for me and if someone were to ask her the same thing she would say "She's my daughter".
I then told Mary about my cousin Carrie-lynn. I told her how Carrie came from her home in England, with a toddler in tow, to care for my aunt Jackie who recently passed away after a hard battle with cancer and that Carrie was there fighting with her. I told her about my grandma and how when grandpa couldn't or wouldn't put her in a facility she came to live with us for a quite some time. I told her how when Auntie Jackie split from her husband she moved her three kids and dogs to live with us in Canmore until she could get her own place and I would go everyday after school to check in on my cousins. I told her how when aunt Jackie decided to move up north that uncle Reg and his family helped out how they could. I told how my mom would to Belize every 16 months to see and help uncle Gene who had foolishly moved down there to chase a dream. I told her how when Uncle Gene was broke and stuck in Belize with a sick common-law wife, his sisters brought him back and auntie Jackie then helped him to get set up in Campbell River. I told her how when my cousin Lyndon passed away at a young age leaving two small boys and wife, everyone did what they could and now Maggie is helping out Uncle Gene. I told her how three weeks ago, my brother Doug lifted and carried mom out of bed and to his car and then drove to Canmore so she could see the old house and the neighborhood for one last time. I told her that through my own struggles with my substance abuse disorder, my family (except for my brother David, but he's given up on the family too) have never given up on me. Mary's reaction was "wow".
My uncle Reg came to visit us today. He stopped at the house first and dad and I and him chatted. I made mom some super juice (beets, carrots, kale and apples) and then told him when I'm done, mom will be finished with her nap and we can go and see her. His reaction surprised me "Why", he said. "She won't recognize me anymore". Both dad and I kind of chuckled and told him that she would.
When we got there, mom was still napping. She awoke and when she got more alert I said to her "Look who's here, who is it?" She struggled to get the words out and she said "It's my brother Rennie". Uncle Reg laughed and said "Close enough" and I'm sure I saw a tear in his eye, but he definitely had a happy smile on his face.
We stayed and visited in mom's room. We chatted about this and that and then I said to my uncle. "I hope she makes it to Christmas because that would too much for you to lose both of your sisters in one year".
Uncle Reg agreed and then he said that our family is losing it's matriarchs. Then the only people Uncle Gene can rely on are him, my cousin Brent, and me and dad. Then it hit me. I'm eldest girl of the next generation. I'm the next matriarch. I better keep my shit together and I can think of no better reason to do that. Someone has to keep the stories, recipes, history and the loving dysfunction alive for the next generation, so that they will always know where their roots are and they are deep in this family tree.
We may not talk to each other daily or even monthly. I don't know every detail of their lives or what is always going on. But this much I know for sure, when push comes to shove and someone in the family needs help, well someone in the family will be there. Why, because we are family.
I then told Mary about my cousin Carrie-lynn. I told her how Carrie came from her home in England, with a toddler in tow, to care for my aunt Jackie who recently passed away after a hard battle with cancer and that Carrie was there fighting with her. I told her about my grandma and how when grandpa couldn't or wouldn't put her in a facility she came to live with us for a quite some time. I told her how when Auntie Jackie split from her husband she moved her three kids and dogs to live with us in Canmore until she could get her own place and I would go everyday after school to check in on my cousins. I told her how when aunt Jackie decided to move up north that uncle Reg and his family helped out how they could. I told how my mom would to Belize every 16 months to see and help uncle Gene who had foolishly moved down there to chase a dream. I told her how when Uncle Gene was broke and stuck in Belize with a sick common-law wife, his sisters brought him back and auntie Jackie then helped him to get set up in Campbell River. I told her how when my cousin Lyndon passed away at a young age leaving two small boys and wife, everyone did what they could and now Maggie is helping out Uncle Gene. I told her how three weeks ago, my brother Doug lifted and carried mom out of bed and to his car and then drove to Canmore so she could see the old house and the neighborhood for one last time. I told her that through my own struggles with my substance abuse disorder, my family (except for my brother David, but he's given up on the family too) have never given up on me. Mary's reaction was "wow".
My uncle Reg came to visit us today. He stopped at the house first and dad and I and him chatted. I made mom some super juice (beets, carrots, kale and apples) and then told him when I'm done, mom will be finished with her nap and we can go and see her. His reaction surprised me "Why", he said. "She won't recognize me anymore". Both dad and I kind of chuckled and told him that she would.
When we got there, mom was still napping. She awoke and when she got more alert I said to her "Look who's here, who is it?" She struggled to get the words out and she said "It's my brother Rennie". Uncle Reg laughed and said "Close enough" and I'm sure I saw a tear in his eye, but he definitely had a happy smile on his face.
We stayed and visited in mom's room. We chatted about this and that and then I said to my uncle. "I hope she makes it to Christmas because that would too much for you to lose both of your sisters in one year".
Uncle Reg agreed and then he said that our family is losing it's matriarchs. Then the only people Uncle Gene can rely on are him, my cousin Brent, and me and dad. Then it hit me. I'm eldest girl of the next generation. I'm the next matriarch. I better keep my shit together and I can think of no better reason to do that. Someone has to keep the stories, recipes, history and the loving dysfunction alive for the next generation, so that they will always know where their roots are and they are deep in this family tree.
We may not talk to each other daily or even monthly. I don't know every detail of their lives or what is always going on. But this much I know for sure, when push comes to shove and someone in the family needs help, well someone in the family will be there. Why, because we are family.
Sunday 28 October 2012
The Dementia Diary: Surprise, surprise
The Dementia Diary: Surprise, surprise: The liquid diet that mom is now on consists of my homemade juice (beet, carrot, kale and apples) and a meal replacement powder, protein powd...
Surprise, surprise
The liquid diet that mom is now on consists of my homemade juice (beet, carrot, kale and apples) and a meal replacement powder, protein powder, cream, vanilla yoghurt and milk all mixed together. It's all vanilla flavoured and when you have that 3 times a day, well it gets boring. So I surprised mom and made it with chocolate milk. She loved it and I literally couldn't get the straw out of her mouth. There are a few residents on mom's wing like Arlene, who only eats mashed potatoes and meat mince and Marie who eats only soup. The workers asked I could make a jug so they could try it with Marie and Arlene. Well, they loved it too. Now I am the official super drink maker. As there are so many flavoured milks out there now, like strawberry, banana, orange and even a mocha, I can get a little creative with it.
Mom went on the nod again at lunch so I wheeled back to her ward. Skate America was on the television. I asked mom if she wanted to watch figure skating or take a nap. I was expecting to hear take a nap but instead mom said "Figure skating". Mom always loved watching three things, figure skating, curling and baseball or and Canadian football but only if the riders were playing. She's not a big fan of football but she was raised in Saskatchewan, so she's riders fan, our whole family are riders fans.
Mom and I sat and watched skating. I haven't watched it for some time and I was amazed by some of the lifts they are now doing. Then out of the blue mom says "Lena Shellian". She surprised me with that. Lena was a much better seamstress than my mom and I'm sure everyone in 'old' Canmore had something made or altered by her at some point. Mom hated working with certain types of material so my skating outfits were all made by Lena. Mom and her were good friends too. We were up at her place often for fittings but more so mom and her could have coffee and some of Lena's cookies or squares and of course to gossip. If Barry wasn't around, I would always wander off to Mr. Shellian's garage and watch him make his one of his bird houses and listen to him talk about his youth.
Eventually she went on the nod again so I tilted her chair back and snuck away to go do some laundry.
When I returned, who do I run into coming out the down but Lloyd and Dawna Evans. Another surprise. Dawna and I had run into each other in June out front of Shopper's Drugmart in Kamloops. We talked back then about how worried we were about mom, comparing notes and trying to figure out what was causing the trouble. Mom was still walking and talking and eating then. Now she can't do any of that.
Lloyd and/or Dawna try to visit as often as they can. Lloyd noted how much ability mom has lost since the last time her saw her in September. I had to tell them that she's lost the ability to chew and swallow solid food and that she was now on a liquid diet. I also had to tell them that she's now a C1 resident and explain to them what that means. They were a little taken back by that revelation. Dawna said that they will be out more often, given the circumstances and that next time she would bring pictures of all the trips her and my mom and Dylan and Cassie took together over the years. Dylan and Cassie were the best of friends when they were young. Dawna and Lloyd have been good friends to the family too. They are wonderful people and they never judged mom or thought any different of her because of her mental illness's.
Lloyd was also a great dentist. Before he started practice in Canmore we had to go to Dr. Knechtal in Banff and he was a donkey dentist. Not Lloyd, he was always comforting and gentle and I've never found another dentist like him. He's worked on three generations of Obrigewitsch teeth. My mom's, mine and Dylan's. Yes, that's my mom's maiden name, what a moniker that one is.
Surprises come in many packages from chocolate milk to a memory to an unexpected visit with old friends. I think mom was a little happier today, at least I hope she was.
Mom went on the nod again at lunch so I wheeled back to her ward. Skate America was on the television. I asked mom if she wanted to watch figure skating or take a nap. I was expecting to hear take a nap but instead mom said "Figure skating". Mom always loved watching three things, figure skating, curling and baseball or and Canadian football but only if the riders were playing. She's not a big fan of football but she was raised in Saskatchewan, so she's riders fan, our whole family are riders fans.
Mom and I sat and watched skating. I haven't watched it for some time and I was amazed by some of the lifts they are now doing. Then out of the blue mom says "Lena Shellian". She surprised me with that. Lena was a much better seamstress than my mom and I'm sure everyone in 'old' Canmore had something made or altered by her at some point. Mom hated working with certain types of material so my skating outfits were all made by Lena. Mom and her were good friends too. We were up at her place often for fittings but more so mom and her could have coffee and some of Lena's cookies or squares and of course to gossip. If Barry wasn't around, I would always wander off to Mr. Shellian's garage and watch him make his one of his bird houses and listen to him talk about his youth.
Eventually she went on the nod again so I tilted her chair back and snuck away to go do some laundry.
When I returned, who do I run into coming out the down but Lloyd and Dawna Evans. Another surprise. Dawna and I had run into each other in June out front of Shopper's Drugmart in Kamloops. We talked back then about how worried we were about mom, comparing notes and trying to figure out what was causing the trouble. Mom was still walking and talking and eating then. Now she can't do any of that.
Lloyd and/or Dawna try to visit as often as they can. Lloyd noted how much ability mom has lost since the last time her saw her in September. I had to tell them that she's lost the ability to chew and swallow solid food and that she was now on a liquid diet. I also had to tell them that she's now a C1 resident and explain to them what that means. They were a little taken back by that revelation. Dawna said that they will be out more often, given the circumstances and that next time she would bring pictures of all the trips her and my mom and Dylan and Cassie took together over the years. Dylan and Cassie were the best of friends when they were young. Dawna and Lloyd have been good friends to the family too. They are wonderful people and they never judged mom or thought any different of her because of her mental illness's.
Lloyd was also a great dentist. Before he started practice in Canmore we had to go to Dr. Knechtal in Banff and he was a donkey dentist. Not Lloyd, he was always comforting and gentle and I've never found another dentist like him. He's worked on three generations of Obrigewitsch teeth. My mom's, mine and Dylan's. Yes, that's my mom's maiden name, what a moniker that one is.
Surprises come in many packages from chocolate milk to a memory to an unexpected visit with old friends. I think mom was a little happier today, at least I hope she was.
Friday 26 October 2012
The Dementia Diary: Now I lay me down to sleep.
The Dementia Diary: Now I lay me down to sleep.: Mom is spending more and more time on the nod and if she's not on the nod, then she is zoned out. In the centre of our brains is the contro...
Now I lay me down to sleep.
Mom is spending more and more time on the nod and if she's not on the nod, then she is zoned out. In the centre of our brains is the control for sleep. Because that is deteriorating in mom, she no longer gets proper REM sleep and her body and her brain simply aren't regulated anymore into a normal sleep pattern or a normal circadian cycle. She'll nod off during lunch or dinner, in therapy, in church, and in even in Bingo. She's not the only one, it's a another symptom of dementia. The more they sleep, the sicker they are.
Evelyn also goes on the nod and quickly into a very deep sleep, so deep that right in the middle of a bite of food she will close her eyes, her head drops and in seconds she is sleeping. A few times I've had to pull the food out of her mouth. Her dementia has made her slightly narcoleptic. Oddly, with Alzheimer's and a few other named types of dementia like dementia pugilistica (what Muhammad Ali has with Parkinson's added to his mix) and Steele-Richardson-Olszewski dementia, the circadian cycle gets flipped. These dementia's effect the hypothalamus so patients will sleep in the day but be up all night and some of them will only get a couple hours of sleep in the day because they still have to eat.
Today was the drum circle day. It's the first time I've gone but mom has been to it before. Chris, on of the rec therapists, told me that mom was a regular participant in the circle and always wanted the big drum. That was months ago when she could still use her hands. Now, she plays a shaker, not because her hand can work well enough to play it, rather because her hands shake so much.
I've been to drum circle's before, but for spiritual reasons not therapeutic reasons and I always enjoyed them. Today was no different. I had a blast and so did my dad. There were 20 people at today's drum circle and it was loud. They move all the tables in the dining area aside and then bring whoever wants to come to the circle and the acoustics are great in the dining room so the sound echoes throughout the facility. Once a month they get some elders from the Stoney reserve to come and lead the circle so when they come next time I'll be there.
The predictability of rhythm provides the framework for repetitive responses that make few cognitive demands on people with dementia. It also helps those with Parkinson's dementia as hearing a slow, steady rhythm helps them move more steadily. Drumming also offers extensive exercise for brain cells and their synapses. It's also a form of physical exercise. But what I saw really amazed me. The self-expression that comes out in the patients that were there from my mom's wing. Eddy is first nations and he is in the same state as mom but not rapid progressing. He doesn't talk or move, he only sleeps and grunts. Yet today he drummed and he sang to the rhythm. Margaret who normally just rocks from side to side stopped rocking and intently kept the beat. Marie found her own rhythm but I watched her watch the drum leader and she wasn't trying to follow his beat she was trying to make sure that her harmony beat was in sync. Even Nora the nurse got into it with her hips. She shook her bootie to the rhythm and everyone loved.
Mom's shaker stopped making noise and when I looked over I couldn't believe what I saw. She was on the nod. Her function is that gone that she could nod off in a loud, pounding drum circle. So, I took her back to her room and tilted her chair back so she could nap a little bit before lunch and after lunch the monthly communal birthday party was happening and she needed to be rested. After lunch I took her back to the common area on her wing. She was slouchy and shaky and those are the usual indications that's she's sleepy. So, I asked her if she wanted to go to the birthday party. She said no and then said "No cake". I knew what she meant. She can't swallow the cake so she can't have the cake. I asked her if she wanted to nap in her bed and she said, "Yes, bed". I got the staff to put her to bed.
When she was settled, I went in and she was staring at the ceiling, 'sundowning' not sleeping. I stroked her hair, what's left of it, and I said this prayer. "Now I lay mom down to sleep, I pray the Lord her soul to keep. If she should die before she wakes, I pray the Lord her soul to take". She closed her eyes.
Evelyn also goes on the nod and quickly into a very deep sleep, so deep that right in the middle of a bite of food she will close her eyes, her head drops and in seconds she is sleeping. A few times I've had to pull the food out of her mouth. Her dementia has made her slightly narcoleptic. Oddly, with Alzheimer's and a few other named types of dementia like dementia pugilistica (what Muhammad Ali has with Parkinson's added to his mix) and Steele-Richardson-Olszewski dementia, the circadian cycle gets flipped. These dementia's effect the hypothalamus so patients will sleep in the day but be up all night and some of them will only get a couple hours of sleep in the day because they still have to eat.
Today was the drum circle day. It's the first time I've gone but mom has been to it before. Chris, on of the rec therapists, told me that mom was a regular participant in the circle and always wanted the big drum. That was months ago when she could still use her hands. Now, she plays a shaker, not because her hand can work well enough to play it, rather because her hands shake so much.
I've been to drum circle's before, but for spiritual reasons not therapeutic reasons and I always enjoyed them. Today was no different. I had a blast and so did my dad. There were 20 people at today's drum circle and it was loud. They move all the tables in the dining area aside and then bring whoever wants to come to the circle and the acoustics are great in the dining room so the sound echoes throughout the facility. Once a month they get some elders from the Stoney reserve to come and lead the circle so when they come next time I'll be there.
The predictability of rhythm provides the framework for repetitive responses that make few cognitive demands on people with dementia. It also helps those with Parkinson's dementia as hearing a slow, steady rhythm helps them move more steadily. Drumming also offers extensive exercise for brain cells and their synapses. It's also a form of physical exercise. But what I saw really amazed me. The self-expression that comes out in the patients that were there from my mom's wing. Eddy is first nations and he is in the same state as mom but not rapid progressing. He doesn't talk or move, he only sleeps and grunts. Yet today he drummed and he sang to the rhythm. Margaret who normally just rocks from side to side stopped rocking and intently kept the beat. Marie found her own rhythm but I watched her watch the drum leader and she wasn't trying to follow his beat she was trying to make sure that her harmony beat was in sync. Even Nora the nurse got into it with her hips. She shook her bootie to the rhythm and everyone loved.
Mom's shaker stopped making noise and when I looked over I couldn't believe what I saw. She was on the nod. Her function is that gone that she could nod off in a loud, pounding drum circle. So, I took her back to her room and tilted her chair back so she could nap a little bit before lunch and after lunch the monthly communal birthday party was happening and she needed to be rested. After lunch I took her back to the common area on her wing. She was slouchy and shaky and those are the usual indications that's she's sleepy. So, I asked her if she wanted to go to the birthday party. She said no and then said "No cake". I knew what she meant. She can't swallow the cake so she can't have the cake. I asked her if she wanted to nap in her bed and she said, "Yes, bed". I got the staff to put her to bed.
When she was settled, I went in and she was staring at the ceiling, 'sundowning' not sleeping. I stroked her hair, what's left of it, and I said this prayer. "Now I lay mom down to sleep, I pray the Lord her soul to keep. If she should die before she wakes, I pray the Lord her soul to take". She closed her eyes.
Thursday 25 October 2012
The Dementia Diary: The brain is amazing
The Dementia Diary: The brain is amazing: 6 years ago I had a severe head trauma. I was chasing Ryley down the stairs and I must have missed a stair and I cracked the tile at the bo...
The brain is amazing
6 years ago I had a severe head trauma. I was chasing Ryley down the stairs and I must have missed a stair and I cracked the tile at the bottom of the stairs, with my head. I was in a coma for 4 days and when I came out of it I couldn't walk, I couldn't talk properly, I couldn't read, I couldn't do a lot of things. I broke the hardest part of the skull, the temporal bone and all the bones in my inner ear. Dr. Chevalier told me I was 4mm from death. Had the skull fracture been 4 mm to the right it would have severed an artery and I probably would have died or at the very least, been left in a vegetative state. I had oodles and oodles of therapy and vestibular therapy for the inner ear damage and overtime I got better. Today the only reminent of my brain injury is darkness and rarely my speech. I get vertigo in the dark or when I close my eyes, so I don't take showers because you have to close your eyes (I do take baths) and I sleep with a nightlight. When I am very tired I wix my mords and I might say something like crappers instead of crackers or affle instead of apple.
I saw Dr. Chevalier for one last time the week before I moved home to Alberta. He is still amazed. By all accounts I should still have some cognitive difficulties or something. But I don't. His office is located in the Step Down Unit of the Kamloops hospital. It's a unit where stroke and brain injury patients go to recover. I volunteered there about a year after my injury and twice a week I would go and read to patients or take them for a little stroll or do a puzzle with them or just chat. I would see people who didn't have as severe head trauma as I had experienced but they were struggling with everything from speech to walking. I was amazed then and now seeing how dementia effects different people, I am even more amazed. The brain is simply amazing. I managed to retrain my brain but people with dementia can't.
Marie and Brenda are on mom's ward and they are both considered end stage. They both walk with walkers, can talk and tell me wonderful stories of their youth and childhood. Both of them have very similar symptoms. Like incontinence and no short term memory. Everyday and I do mean everyday they sit beside each other by the fish tank and everyday the conversation is the same. "Hi, I'm Marie, what's your name?"
"I'm Brenda, nice to meet to you Marie, where are you from?" Marie will smile, "Well Brenda, I'm from Water Valley, my husband Ansfrid and I have a ranch there" (her husband has been gone for many, many years) and so the conversation continues and everyday the same two ladies become new friends. It must be wonderful to make a new friend everyday, even if it is the same friend as yesterday.
Everyday I feed my mom and Evelyn. Evelyn can talk, she walks with a walker and she can feed herself but she goes on the nod a lot so I have to help her. Mom actually got jealous one day and snapped at Evelyn and said "MY daughter!". But Evelyn is going blind because of the dementia and she has no long term or short term memory. She thinks she's 103 years old but really she is 83 years old. I'll ask her "Evelyn, how was your morning?". She'll answer "I think it was good". If I ask her if she likes broccoli she'll answer "I don't know". She doesn't know, she can't remember and she knows it. Some days she gets really depressed and doesn't want to eat and she'll ask me to let her die. I try as best I can to cheer her up by telling her that I need her and she can't go yet. I do need her, she is giving my life a lot of purpose right now.
Robbie is also on the end stage ward. He can't talk, he can't walk but he does shuffle himself around in a wheelchair and gets himself in and out of it. He's on oxygen but has never smoked in his life. Some dementia patients will develop a constant breathlessness and are on oxygen 24/7. Robbie is an incredible crib player. He plays just like my grandpa did. He gently slaps my hand when I miss a point and then he takes the point from me. He skunks me often. When I get him coffee or put his bib on him he always grabs my hand in both of his to say thank you and he always waves when I or my dad pass him in the hallway.
Arlene is a sad soul. She's 93 and also end stage. She can't walk, she does talk and she does eat but only mashed potatoes with gravy and minced meat. That's it, for breakfast too. She sadly sits in the doorway of her room and repeats the same thing all day. One day it might be "Nurse, please help me my stomach hurts".
The next day it will be "Nurse, please help me my leg hurts". The next day it might be "Nurse, please help me, my finger hurts" (Actually her finger probably does hurt as they found a skin cancer under the finger nail and had to remove the tip). But all day she will repeat the same phrase. I stop and talk to her, she will talk and carry on a conversation about the weather or whatever, but within seconds of me leaving she reverts back to "Nurse, please help me, my arm hurts".
There is Marjorie who sometimes walks with her walker and other times prefers her chair. She was on the lock down ward with Pick's dementia but the wandering has stopped. She needs help with everything including eating and she tends babble nonsensical words that aren't words. Then out of the blue she will burst into 'Some Enchanted Evening' or 'New York, New York' or whatever tune comes into her mind. Her husband lives in the supportive living and comes every night to feed her dinner. She was voice/singing coach and in her youth in the 40's was a singer in the dance halls of Ontario.
My mom, well even in the short time I've been here I've watched her slip. She doesn't rock or moan and make weird noises like some of the residents do. She just watches people and now often cries when she watches them. Somewhere in her brain she remembers what she could do just a short time ago. She's sad and it shows. She can still read though. When the news comes on, she always reads aloud the by-lines that flash at the bottom of the screen. It's like she's trying to hang on to the one thing she has left. Just a few days ago she lost another connection in her brain. She can chew and she can swallow liquid but she can no longer chew food and then swallow. Her brain has forgotten how. So, she chews and chews and chews and even a gentle press to the neck won't trigger the swallow response, nor will touching the right side of her tongue. What she does do is chew and chew and chew and the instead of pushing the bolus to the back of her mouth, she pushes it to the front and it all comes out. Vermont has put her on a liquid diet of protein drinks, fortified breakfast drinks and fruit and vegetable juices. We still put the food in front of her and give her little bites to swallow with a drink. It only a matter of time before the rest of the chewing and swallowing connections in her brain disappear. They have changed her designation from M1 resident to C1 resident. C1 means that it's no longer controlling or treating symptoms, it means it's now pallative care.
I was watching the fish today. They swim around and around and around. Some fish only have a 30 second memory span. Imagine that every 30 seconds you forget everything you ever knew and start fresh again with new memory. The residents are like the fish. They wander around and around the ward and everyday they don't know where they are or why they are there and one day, they'll float to the top.
I saw Dr. Chevalier for one last time the week before I moved home to Alberta. He is still amazed. By all accounts I should still have some cognitive difficulties or something. But I don't. His office is located in the Step Down Unit of the Kamloops hospital. It's a unit where stroke and brain injury patients go to recover. I volunteered there about a year after my injury and twice a week I would go and read to patients or take them for a little stroll or do a puzzle with them or just chat. I would see people who didn't have as severe head trauma as I had experienced but they were struggling with everything from speech to walking. I was amazed then and now seeing how dementia effects different people, I am even more amazed. The brain is simply amazing. I managed to retrain my brain but people with dementia can't.
Marie and Brenda are on mom's ward and they are both considered end stage. They both walk with walkers, can talk and tell me wonderful stories of their youth and childhood. Both of them have very similar symptoms. Like incontinence and no short term memory. Everyday and I do mean everyday they sit beside each other by the fish tank and everyday the conversation is the same. "Hi, I'm Marie, what's your name?"
"I'm Brenda, nice to meet to you Marie, where are you from?" Marie will smile, "Well Brenda, I'm from Water Valley, my husband Ansfrid and I have a ranch there" (her husband has been gone for many, many years) and so the conversation continues and everyday the same two ladies become new friends. It must be wonderful to make a new friend everyday, even if it is the same friend as yesterday.
Everyday I feed my mom and Evelyn. Evelyn can talk, she walks with a walker and she can feed herself but she goes on the nod a lot so I have to help her. Mom actually got jealous one day and snapped at Evelyn and said "MY daughter!". But Evelyn is going blind because of the dementia and she has no long term or short term memory. She thinks she's 103 years old but really she is 83 years old. I'll ask her "Evelyn, how was your morning?". She'll answer "I think it was good". If I ask her if she likes broccoli she'll answer "I don't know". She doesn't know, she can't remember and she knows it. Some days she gets really depressed and doesn't want to eat and she'll ask me to let her die. I try as best I can to cheer her up by telling her that I need her and she can't go yet. I do need her, she is giving my life a lot of purpose right now.
Robbie is also on the end stage ward. He can't talk, he can't walk but he does shuffle himself around in a wheelchair and gets himself in and out of it. He's on oxygen but has never smoked in his life. Some dementia patients will develop a constant breathlessness and are on oxygen 24/7. Robbie is an incredible crib player. He plays just like my grandpa did. He gently slaps my hand when I miss a point and then he takes the point from me. He skunks me often. When I get him coffee or put his bib on him he always grabs my hand in both of his to say thank you and he always waves when I or my dad pass him in the hallway.
Arlene is a sad soul. She's 93 and also end stage. She can't walk, she does talk and she does eat but only mashed potatoes with gravy and minced meat. That's it, for breakfast too. She sadly sits in the doorway of her room and repeats the same thing all day. One day it might be "Nurse, please help me my stomach hurts".
The next day it will be "Nurse, please help me my leg hurts". The next day it might be "Nurse, please help me, my finger hurts" (Actually her finger probably does hurt as they found a skin cancer under the finger nail and had to remove the tip). But all day she will repeat the same phrase. I stop and talk to her, she will talk and carry on a conversation about the weather or whatever, but within seconds of me leaving she reverts back to "Nurse, please help me, my arm hurts".
There is Marjorie who sometimes walks with her walker and other times prefers her chair. She was on the lock down ward with Pick's dementia but the wandering has stopped. She needs help with everything including eating and she tends babble nonsensical words that aren't words. Then out of the blue she will burst into 'Some Enchanted Evening' or 'New York, New York' or whatever tune comes into her mind. Her husband lives in the supportive living and comes every night to feed her dinner. She was voice/singing coach and in her youth in the 40's was a singer in the dance halls of Ontario.
My mom, well even in the short time I've been here I've watched her slip. She doesn't rock or moan and make weird noises like some of the residents do. She just watches people and now often cries when she watches them. Somewhere in her brain she remembers what she could do just a short time ago. She's sad and it shows. She can still read though. When the news comes on, she always reads aloud the by-lines that flash at the bottom of the screen. It's like she's trying to hang on to the one thing she has left. Just a few days ago she lost another connection in her brain. She can chew and she can swallow liquid but she can no longer chew food and then swallow. Her brain has forgotten how. So, she chews and chews and chews and even a gentle press to the neck won't trigger the swallow response, nor will touching the right side of her tongue. What she does do is chew and chew and chew and the instead of pushing the bolus to the back of her mouth, she pushes it to the front and it all comes out. Vermont has put her on a liquid diet of protein drinks, fortified breakfast drinks and fruit and vegetable juices. We still put the food in front of her and give her little bites to swallow with a drink. It only a matter of time before the rest of the chewing and swallowing connections in her brain disappear. They have changed her designation from M1 resident to C1 resident. C1 means that it's no longer controlling or treating symptoms, it means it's now pallative care.
I was watching the fish today. They swim around and around and around. Some fish only have a 30 second memory span. Imagine that every 30 seconds you forget everything you ever knew and start fresh again with new memory. The residents are like the fish. They wander around and around the ward and everyday they don't know where they are or why they are there and one day, they'll float to the top.
Wednesday 24 October 2012
The Dementia Diary: It's like high school sometimes
The Dementia Diary: It's like high school sometimes: It's thought that when we age that we actually regress. After 3 weeks everyday in a seniors care centre, well I believe that it's true, we ...
It's like high school sometimes
It's thought that when we age that we actually regress. After 3 weeks everyday in a seniors care centre, well I believe that it's true, we do regress.
Sam (Santo) is an Italian gentleman on mom's ward. On some days he will follow me around, the best he can, like a lost puppy. He calls me 'piccolo' which means little one. One these days he wants to sit by me and he's sings me Italian songs. He will sit there and smile at me and speak Italian, which I do now agree is a very romantic language even though I don't know what he's saying but he's definitely flirting. The other days he remembers that he's married and all he does is scream at me in Italian and demand that I put his bib on him and get his caffe. I prefer the romantic singing.
On another day, I was helping with one of the wings afternoon tea and couldn't help with the music therapy. We had a big snowfall that day and one of the volunteers called to say that she wouldn't be coming so Ashley, was one her own. I couldn't help port the residents down but the tea would be finished before the end of music therapy and I said I'd be there to help her port them all back. When I got there the doors opened and one of the participants just bolted past me, literally running with her walker. Shannon started talking to me about today's therapy with mom and I thought maybe that lady had to really go to the washroom and she seemed okay with her walker and obviously not blind so I didn't chase her down. Ashley can and we lined up all the people in the walkers and mom and I brought up the then end. Then Ashley did a head count and noticed that Margaret was gone. She told me that she could handle getting them all back, including mom and told me to go to the lock down ward and tell a nurse that Margaret has gone wandering. I was panicked when I realized she was from the lock down and I suggested that maybe I should go outside and look for her, it was cold, she had no coat and she couldn't have gotten far. Ashley was very non-chalant and told me that Margaret does this all the time and she never leaves the building.
I rushed to the lock down ward and buzzed myself in (I know the code). I ran to the nurses station and told them that Margaret had wandered off. They didn't seem to worried either. I watched the nurse go to the computer and type something and then she said "Yep, I knew it, she's in room 406 in assisted living". I didn't realize it until then but the residents of the lock down have a little GPS sensor attached to their wrist bands and can be easily found within a 10 km area surrounding the facility. Well isn't that nifty I thought. She then asked me to go and get Margaret. I apologized over and over as I felt so bad to not stopping her when she bolted. The nurse responded "Don't worry, when she gets an opportunity, she bolts and she can always be found at room 406".
I went down to room 406 and there she was, sitting on the bed, next to a gentlemen named George. In fact the workers call him 'Gorgeous George' and he has many female residents that are interested in him. Honestly, for an 80 year old man, he is good looking. He has silver hair and blue, blue eyes and resembles Paul Newman. If I was 80, I'd be chasing him too. Well Margaret did not want to leave and she pleaded for just 5 more minutes. George, in a very charming manner, stood up, took her hand, gently helped her up from the bed and said "Now Margaret, go with the young lady, you don't want to get in any trouble and you can come back anytime" and he smiled. Margaret reluctantly walked to the door and in a flirtatious voice "Okay George, I'll sneak away soon". Then in the hallway she told me "I hate you". Further down the hallway she said "And you better not get designs on him, he's mine". I had to bite my lip to stop from laughing. If she wasn't grey and wrinkled, I would have sworn I was talking to a 14 year old teen aged girl.
That same night at dinner, Gord was demanding again. Gord has money. His wife drives a Hummer and was in L.A (Los Angeles, not Lethbridge, Alberta) visiting their daughter. Normally he eats in his room with his wife who like me is a trained VMA (volunteer meal assistant). The patients in the end stage ward are not allowed to eat alone, they have to be monitored for choking and aspiration. When his wife is away, he must sit in the dining area with the other end stage residents whom he feels he is better than and refused to sit with any of them. The only person he will dine with is Alvin. But Alvin doesn't like Gord, Alvin likes to sit with Sam (Santo). Alvin enjoys sitting with Sam because Sam only speaks Italian and always nods in agreement with everything that Alvin says, and Alvin says a lot. Alvin often lets Sam watch TV in his private room and it appears that they are friends. Because Gord's dementia makes him prone to angry outbursts that have resulted in him throwing food, the staff accommodate and give him his own table. Of course this means that everyone else must be shuffled around.
Gord got his own table that meant Bob (Marjorie's husband) who comes and feeds her dinner every night would sit at our table with Evelyn and mom and me. Weetska would be moved to Jean and Alma's table and Margaret would go and join her husband Leo (who is the lock down). Livey and Olga would move to the corner and so on and so on. Everyone ate and I did a two handed double duty as the arrangement threw the service staff off and they had to find where everyone was that night so mom's and Evelyn's food came out at the same time instead of being staggered.
When dinner was over the staff started porting the residents back to the ward. Jean called me over. I went to her table and said "What can I get you Jean?". She answered in a very stern voice "You can get this bitch out of here now and I don't ever want her at my table again". She meant Weetska who is the gentlest soul in the ward and who doesn't speak, so I didn't see how it could be determined that she was bitch. I told Jean that's not a nice thing to say and she responded "Shut up and move her". Oddly enough, Jean never has much to say either but she sure spoke loud and clear that night.
Yep, high school confidential and it makes things very interesting.
Sam (Santo) is an Italian gentleman on mom's ward. On some days he will follow me around, the best he can, like a lost puppy. He calls me 'piccolo' which means little one. One these days he wants to sit by me and he's sings me Italian songs. He will sit there and smile at me and speak Italian, which I do now agree is a very romantic language even though I don't know what he's saying but he's definitely flirting. The other days he remembers that he's married and all he does is scream at me in Italian and demand that I put his bib on him and get his caffe. I prefer the romantic singing.
On another day, I was helping with one of the wings afternoon tea and couldn't help with the music therapy. We had a big snowfall that day and one of the volunteers called to say that she wouldn't be coming so Ashley, was one her own. I couldn't help port the residents down but the tea would be finished before the end of music therapy and I said I'd be there to help her port them all back. When I got there the doors opened and one of the participants just bolted past me, literally running with her walker. Shannon started talking to me about today's therapy with mom and I thought maybe that lady had to really go to the washroom and she seemed okay with her walker and obviously not blind so I didn't chase her down. Ashley can and we lined up all the people in the walkers and mom and I brought up the then end. Then Ashley did a head count and noticed that Margaret was gone. She told me that she could handle getting them all back, including mom and told me to go to the lock down ward and tell a nurse that Margaret has gone wandering. I was panicked when I realized she was from the lock down and I suggested that maybe I should go outside and look for her, it was cold, she had no coat and she couldn't have gotten far. Ashley was very non-chalant and told me that Margaret does this all the time and she never leaves the building.
I rushed to the lock down ward and buzzed myself in (I know the code). I ran to the nurses station and told them that Margaret had wandered off. They didn't seem to worried either. I watched the nurse go to the computer and type something and then she said "Yep, I knew it, she's in room 406 in assisted living". I didn't realize it until then but the residents of the lock down have a little GPS sensor attached to their wrist bands and can be easily found within a 10 km area surrounding the facility. Well isn't that nifty I thought. She then asked me to go and get Margaret. I apologized over and over as I felt so bad to not stopping her when she bolted. The nurse responded "Don't worry, when she gets an opportunity, she bolts and she can always be found at room 406".
I went down to room 406 and there she was, sitting on the bed, next to a gentlemen named George. In fact the workers call him 'Gorgeous George' and he has many female residents that are interested in him. Honestly, for an 80 year old man, he is good looking. He has silver hair and blue, blue eyes and resembles Paul Newman. If I was 80, I'd be chasing him too. Well Margaret did not want to leave and she pleaded for just 5 more minutes. George, in a very charming manner, stood up, took her hand, gently helped her up from the bed and said "Now Margaret, go with the young lady, you don't want to get in any trouble and you can come back anytime" and he smiled. Margaret reluctantly walked to the door and in a flirtatious voice "Okay George, I'll sneak away soon". Then in the hallway she told me "I hate you". Further down the hallway she said "And you better not get designs on him, he's mine". I had to bite my lip to stop from laughing. If she wasn't grey and wrinkled, I would have sworn I was talking to a 14 year old teen aged girl.
That same night at dinner, Gord was demanding again. Gord has money. His wife drives a Hummer and was in L.A (Los Angeles, not Lethbridge, Alberta) visiting their daughter. Normally he eats in his room with his wife who like me is a trained VMA (volunteer meal assistant). The patients in the end stage ward are not allowed to eat alone, they have to be monitored for choking and aspiration. When his wife is away, he must sit in the dining area with the other end stage residents whom he feels he is better than and refused to sit with any of them. The only person he will dine with is Alvin. But Alvin doesn't like Gord, Alvin likes to sit with Sam (Santo). Alvin enjoys sitting with Sam because Sam only speaks Italian and always nods in agreement with everything that Alvin says, and Alvin says a lot. Alvin often lets Sam watch TV in his private room and it appears that they are friends. Because Gord's dementia makes him prone to angry outbursts that have resulted in him throwing food, the staff accommodate and give him his own table. Of course this means that everyone else must be shuffled around.
Gord got his own table that meant Bob (Marjorie's husband) who comes and feeds her dinner every night would sit at our table with Evelyn and mom and me. Weetska would be moved to Jean and Alma's table and Margaret would go and join her husband Leo (who is the lock down). Livey and Olga would move to the corner and so on and so on. Everyone ate and I did a two handed double duty as the arrangement threw the service staff off and they had to find where everyone was that night so mom's and Evelyn's food came out at the same time instead of being staggered.
When dinner was over the staff started porting the residents back to the ward. Jean called me over. I went to her table and said "What can I get you Jean?". She answered in a very stern voice "You can get this bitch out of here now and I don't ever want her at my table again". She meant Weetska who is the gentlest soul in the ward and who doesn't speak, so I didn't see how it could be determined that she was bitch. I told Jean that's not a nice thing to say and she responded "Shut up and move her". Oddly enough, Jean never has much to say either but she sure spoke loud and clear that night.
Yep, high school confidential and it makes things very interesting.
Tuesday 23 October 2012
The Dementia Diary: A happy day at the home
The Dementia Diary: A happy day at the home: The great thing about Bethany is that regardless of residents health, they always recognize birthdays and anniversaries, even those of the c...
A happy day at the home
The great thing about mom's new home is that regardless of residents health, they always recognize birthdays and anniversaries, even those of the caregivers and spouses. So on this day a spouse of one of the residents turned 80. If I look half as good as she does at 80, I'll be well pleased. She keeps her hair in a current style and wears the trendiest clothes and never dresses like well, like an old woman.
Her husband developed Parkinson's years ago. Parkinson's is also classified as a dementia. For many years the Parkinson's was controlled by the regular medications but they stopped working. They made the decision to move back to Alberta to be closer to their children. Eventually the dementia started to set in and he was gradually going blind. His wife noted that as the dementia got worse, the tremors of the Parkinson's got better. She eventually made the decision to put him in extended care. By then the tremors had stopped and he was incontinent and unable to get around, not only because he was now completely blind but also because of the dementia. It just amazes me how it effects every single dementia patient I've met, totally differently.
For the past 6 years his wife comes everyday and she has dinner with her husband every night. She has watched him steadily slip away. He does not speak at all, not even a grunt. He does not move at all. He has no expression, no emotion, nothing. He does chew and swallow though and has only had one bout of pneumonia which didn't even require hospitalization. She has been a great support to me and she gives great hugs. She's told me about a caregiver support group that meets the last Thursday of every month. I've never been one to rely upon others but I'm going to this time and will be at the meeting on Thursday.
Another milestone celebrated on this day was the 63rd wedding anniversary of Tony and Roseanna. Roseanna is the youngest of 8 children and her father was the third Premiere of this great province of Alberta. She is in her late 80's and has been in extended care for 3 years now. She is one of the residents who requires tube feeding and Tony is there everyday by her side. Theirs is a love story that we see in movies.
Roseanna was a nurse and during WW2 she volunteered to go overseas to Europe to help the troops. Tony was an officer in the British army. A bomb or grenade or something went off near him and he was injured and blinded. Roseanna was his nurse and for a months he didn't know what she looked like but he was already falling in love with her. Then his eyesight improved and he could see blurred images and it got clearer and clearer and with lens he could see again and when he saw her, he was even more smitten. After the war they kept in touch and in 1948 he moved to Calgary to be near Roseanna. They courted and married in 1949. He became an engineer and Roseanna continued to nurse. They raised 3 boys, one passed away just a few years ago of cancer and the other two visit as often as they can. Tony told me that he hopes for many more years together. She is his best friend and he will never leave her side, and he doesn't except to go to the bathroom or get a tea. She nursed him and now he nurses her.
Mom cried today. It could be real emotion or what's left of it, or it could be the dementia as many lose the ability to control emotion and have crying fits or angry outbursts or scream, etc, etc. I asked her why she was crying. Mom said "It hurts". I asked her what hurts, is she in pain. She could be in pain as dementia can cause neuropathy where patients actually feel pain when they are touched. She didn't say, all she said was "It hurts" again and she kept crying. I don't think she's in pain. I think she's sad because she knows what happening to her and it must be horrible for her. All I can do is try to make her time more bearable and that's what I'll keep doing.
Her husband developed Parkinson's years ago. Parkinson's is also classified as a dementia. For many years the Parkinson's was controlled by the regular medications but they stopped working. They made the decision to move back to Alberta to be closer to their children. Eventually the dementia started to set in and he was gradually going blind. His wife noted that as the dementia got worse, the tremors of the Parkinson's got better. She eventually made the decision to put him in extended care. By then the tremors had stopped and he was incontinent and unable to get around, not only because he was now completely blind but also because of the dementia. It just amazes me how it effects every single dementia patient I've met, totally differently.
For the past 6 years his wife comes everyday and she has dinner with her husband every night. She has watched him steadily slip away. He does not speak at all, not even a grunt. He does not move at all. He has no expression, no emotion, nothing. He does chew and swallow though and has only had one bout of pneumonia which didn't even require hospitalization. She has been a great support to me and she gives great hugs. She's told me about a caregiver support group that meets the last Thursday of every month. I've never been one to rely upon others but I'm going to this time and will be at the meeting on Thursday.
Another milestone celebrated on this day was the 63rd wedding anniversary of Tony and Roseanna. Roseanna is the youngest of 8 children and her father was the third Premiere of this great province of Alberta. She is in her late 80's and has been in extended care for 3 years now. She is one of the residents who requires tube feeding and Tony is there everyday by her side. Theirs is a love story that we see in movies.
Roseanna was a nurse and during WW2 she volunteered to go overseas to Europe to help the troops. Tony was an officer in the British army. A bomb or grenade or something went off near him and he was injured and blinded. Roseanna was his nurse and for a months he didn't know what she looked like but he was already falling in love with her. Then his eyesight improved and he could see blurred images and it got clearer and clearer and with lens he could see again and when he saw her, he was even more smitten. After the war they kept in touch and in 1948 he moved to Calgary to be near Roseanna. They courted and married in 1949. He became an engineer and Roseanna continued to nurse. They raised 3 boys, one passed away just a few years ago of cancer and the other two visit as often as they can. Tony told me that he hopes for many more years together. She is his best friend and he will never leave her side, and he doesn't except to go to the bathroom or get a tea. She nursed him and now he nurses her.
Mom cried today. It could be real emotion or what's left of it, or it could be the dementia as many lose the ability to control emotion and have crying fits or angry outbursts or scream, etc, etc. I asked her why she was crying. Mom said "It hurts". I asked her what hurts, is she in pain. She could be in pain as dementia can cause neuropathy where patients actually feel pain when they are touched. She didn't say, all she said was "It hurts" again and she kept crying. I don't think she's in pain. I think she's sad because she knows what happening to her and it must be horrible for her. All I can do is try to make her time more bearable and that's what I'll keep doing.
Monday 22 October 2012
The Dementia Diary: Is it backwards for forwards
The Dementia Diary: Is it backwards or forwards: Mom had more visitors today and that always brightens her eyes because in there somewhere she still has some long term memory. Peter Grizan...
Is it backwards or forwards
Mom had more visitors today and that always brightens her eyes because in there somewhere she still has some long term memory. Peter and Mary-ann and her daughter came to see mom today.
Some would remember them from 4th street in Canmore. They lived beside Mrs. Wamboldt in a blue and white little house with a big garden in the back, that we never raided because their dad was a curmudgeon and we were all too scared. Their Uncle John lived further up 4th beside the late and great Maureen Brass (I miss her dearly). John was a nice fellow but his brother was just miserable.
Mary-ann would babysit me often and sometimes make sure I got to school okay. Peter, well Peter was like a third brother. He was always at our house and usually around dinner time. Him and David could always be found in the TV room arguing over a hockey game or the Atari game 'Pong'. How people could find a reason to argue over a blip and two lines as goalies, no rules, no graphics, well I don't know but it would almost come to fist and cuffs sometimes and mom would then send Peter home. Peter has kept in touch with me over the years but he hadn't seen mom since their uncle's funeral 12 years ago.
Mom perked right up when she saw Peter but you could see her struggle to remember Mary-ann and she called her daughter Dylan although there is no resemblance between the two. Still mom even said 'Peter' when he asked if she remembered him. Like I mentioned, he practically lived at our house for many years so of course she would remember him. Peter always knew how to keep mom's demons at bay and he was great at calming her down when she got riled. He had a gift and there were often times when we would say, "Peter, go upstairs and talk to mom, she's ranting" and he would. The trick he had was to listen and agree. The boys and I tended to argue and interrupt, but Pete would nod and agree, even if he didn't. My dad always liked him too. Peter always had an interest in politics and world affairs. Where Doug was more interested in girls and fashion and David was always wrapped up in sports and I was too young, Peter was well versed so when he stayed for dinner (which was at least 4 days a week) my dad always had someone to have dinner conversation with. Pete was a good addition to the family.
The Grizans are having their own struggles with dementia as their mother suffers with it. Mary-ann is a nurse so she stays home to care for her. Her house has been fitted with everything from a lift to a ramp and Mary-ann takes care of her mom, 7 days a week. Their mother isn't end stage, yet, but she has had numerous bouts of pneumonia and severe UTI's and was hospitalised regularly because of it. One of the reasons Mary-ann came to visit is that she wanted to see what extended care facilities have to offer as she realizes that although she is qualified to care for her mother, a time will come when she can't and maybe that time is approaching.
Her and I talked and compared notes and we talked about the old Canmore and the people we grew up with. Mary-ann was so saddened to hear of Shelley's passing and Maureens. But that is life. Mom started parroting our conversation meaning she repeats everything she hears. She started doing it occasionally a few days earlier and in just that short of time, now she does it all the time. Mom is losing more cognitive thought abilities and if you say "Hi Elaine, how are you?" she will respond "Hi Elaine, how are you?". She has also started sundowning. Some of these terms don't sound very 'medical' but they are the terms used to described the symptoms of end stage dementia. Sundowning means that in the late afternoon mom gets these really blank stares. Her eyes are opened but she really isn't focusing on anything, it's like a trance and even when you talk to her or snap your fingers in her face, she doesn't respond and will just stare at nothing, see the picture below. The sundowning will progress into a regular behaviour. When that happens, eating will be near impossible but the workers did tell me that the kitchen will keep a plate aside for her if she isn't alert enough at lunch or dinner times.
I look at it like like this, which came first, the chicken or the egg. Is mom slipping backwards to a valley plateau or is she moving forward to the grave. Time will tell.
Some would remember them from 4th street in Canmore. They lived beside Mrs. Wamboldt in a blue and white little house with a big garden in the back, that we never raided because their dad was a curmudgeon and we were all too scared. Their Uncle John lived further up 4th beside the late and great Maureen Brass (I miss her dearly). John was a nice fellow but his brother was just miserable.
Mary-ann would babysit me often and sometimes make sure I got to school okay. Peter, well Peter was like a third brother. He was always at our house and usually around dinner time. Him and David could always be found in the TV room arguing over a hockey game or the Atari game 'Pong'. How people could find a reason to argue over a blip and two lines as goalies, no rules, no graphics, well I don't know but it would almost come to fist and cuffs sometimes and mom would then send Peter home. Peter has kept in touch with me over the years but he hadn't seen mom since their uncle's funeral 12 years ago.
Mom perked right up when she saw Peter but you could see her struggle to remember Mary-ann and she called her daughter Dylan although there is no resemblance between the two. Still mom even said 'Peter' when he asked if she remembered him. Like I mentioned, he practically lived at our house for many years so of course she would remember him. Peter always knew how to keep mom's demons at bay and he was great at calming her down when she got riled. He had a gift and there were often times when we would say, "Peter, go upstairs and talk to mom, she's ranting" and he would. The trick he had was to listen and agree. The boys and I tended to argue and interrupt, but Pete would nod and agree, even if he didn't. My dad always liked him too. Peter always had an interest in politics and world affairs. Where Doug was more interested in girls and fashion and David was always wrapped up in sports and I was too young, Peter was well versed so when he stayed for dinner (which was at least 4 days a week) my dad always had someone to have dinner conversation with. Pete was a good addition to the family.
The Grizans are having their own struggles with dementia as their mother suffers with it. Mary-ann is a nurse so she stays home to care for her. Her house has been fitted with everything from a lift to a ramp and Mary-ann takes care of her mom, 7 days a week. Their mother isn't end stage, yet, but she has had numerous bouts of pneumonia and severe UTI's and was hospitalised regularly because of it. One of the reasons Mary-ann came to visit is that she wanted to see what extended care facilities have to offer as she realizes that although she is qualified to care for her mother, a time will come when she can't and maybe that time is approaching.
Her and I talked and compared notes and we talked about the old Canmore and the people we grew up with. Mary-ann was so saddened to hear of Shelley's passing and Maureens. But that is life. Mom started parroting our conversation meaning she repeats everything she hears. She started doing it occasionally a few days earlier and in just that short of time, now she does it all the time. Mom is losing more cognitive thought abilities and if you say "Hi Elaine, how are you?" she will respond "Hi Elaine, how are you?". She has also started sundowning. Some of these terms don't sound very 'medical' but they are the terms used to described the symptoms of end stage dementia. Sundowning means that in the late afternoon mom gets these really blank stares. Her eyes are opened but she really isn't focusing on anything, it's like a trance and even when you talk to her or snap your fingers in her face, she doesn't respond and will just stare at nothing, see the picture below. The sundowning will progress into a regular behaviour. When that happens, eating will be near impossible but the workers did tell me that the kitchen will keep a plate aside for her if she isn't alert enough at lunch or dinner times.
I look at it like like this, which came first, the chicken or the egg. Is mom slipping backwards to a valley plateau or is she moving forward to the grave. Time will tell.
Sunday 21 October 2012
The Dementia Diary: Music gives wings to the mind
The Dementia Diary: Music gives wings to the mind: I make sure that mom doesn't spend her days in bed waiting to die. At the facility there are plenty of activities that with my help she can...
Saturday 20 October 2012
The Dementia Diary: I learn something new everyday
The Dementia Diary: I learn something new everyday: There are more than 200 variations of dementia. Alzheimer's of course is the most known but Parkinson's is also a type of dementia. There ...
I learn something new everyday
There are more than 200 variations of dementia. Alzheimer's of course is the most known but Parkinson's is also a type of dementia. There is Vascular dementia which develops after suffering a stroke and Frontotemporal dementia in which the patient doesn't suffer memory loss rather they display schizophrenic behaviours and depression. Then there is everything in between and often combinations of symptoms and they vary in each patient and they are simply called dementia.
On this day I met with the Geriatric psychiatrist who has been treating mom and now I'm expert and I know better what to expect. He told me that mom has a type of dementia called RPD, Rapid Progressing Dementia. This time last year my mom was still walking, talking, using the phone, eating and eating a lot, she sent me a beautiful card for my birthday and wrote an uplifting saying in it. Now she has apraxia (can't walk or control body movements), dysgraphia (can't write), she's bowel and urinary incontinent, she's aphasic (can't speak properly), she's aphonic (can't hear properly) and she is gradually getting dysphasia (she's slowly losing the ability to swallow). All these new terms that I learnt apply to my mom.
The psychiatrist also believes, based on mom's history that she has rapid progressing dementia with Lewy bodies. Lewy bodies are a by product of proteins that we need for normal neurotransmissions of messages to the brain. When the Lewy bodies are created they attack the cortex of the brain. That's where all the grey matter is and that's what pretty much controls every body function, emotion, memory, thought and language. The cortex contains the cerebellum and the cerebrum. It makes up 2/3's of our brain and that's what is being attacked and slowly killing my mother. He said she meets enough of the Lewy bodies criteria but that they can't determine if they are present until after she has passed and an autopsy is done and the brain tissue examined. There is nothing that stops it, no medication that will slow it and it also presents differently in each patient. It's also genetic and tends to run in families.
My grandmother died of cancer. Really she died of dementia. Hers was slower in the progression and she spent 6 years living in extended care. When they diagnosis of cancer came, my grandfather, my mother and my aunts and uncles all decided that it would serve no purpose to torture her with treatments and surgery. In addition, she was so weakened by the dementia that chances were, she wouldn't survive the treatments or surgery. So the decision was made to make her as pain-free and as comfortable as possible. She passed away 2 months later, in her sleep.
Now my mother has dementia only hers, like I mentioned, is rapid progressing dementia with Lewy bodies. I had to ask what is the prognosis. The doctor was very honest and told me he has seen RPD cases that get to point where they plateau and patients don't get worse but they don't get better and they live like that for about a year before pneumonia or infection gets them and many just slip into a type of coma and pass away peacefully. But he also said that based on mom's history she IS end-stage and she could have anywhere from 6 weeks if the progression continues at the rate it has followed in the last 8 months and if it plateau's them maybe a year or slightly more.
At that point realizing that it is hitting the women in my family and coming to the conclusion that I'm next in line I asked him what are the chances that I will develop dementia. All he could say was "It's very probable". Not the answer I wanted to hear. But he also said that both my mother and grandmother were on Lithium for many, many years and although it isn't proven, many researchers believe that Lithium and other heavy metals that people are exposed to will contribute to the development of the Lewy bodies and that may be the case in my family. If that is the case, then the simple fact that I don't take Lithium may be my saving grace.
So that was the wake up call. It could be 6 weeks or 6 months or a year. Regardless I going to lose more and more of my mom in the near future until she is finally gone. I went and sat with her and I cried again. My mother has been tortured all of her life by her mind and by her brain and now it's going to torture her to her death. It's just not fair.
For my dear friends that read this, please someone listen. If in 25 years I get dementia I don't want my kids or my family or my friends to suffer along with me. So someone do me a favour and do like chief did at the end of 'One Flew Over the Cuckoo's Nest' and just put a soft pillow over my face.
On this day I met with the Geriatric psychiatrist who has been treating mom and now I'm expert and I know better what to expect. He told me that mom has a type of dementia called RPD, Rapid Progressing Dementia. This time last year my mom was still walking, talking, using the phone, eating and eating a lot, she sent me a beautiful card for my birthday and wrote an uplifting saying in it. Now she has apraxia (can't walk or control body movements), dysgraphia (can't write), she's bowel and urinary incontinent, she's aphasic (can't speak properly), she's aphonic (can't hear properly) and she is gradually getting dysphasia (she's slowly losing the ability to swallow). All these new terms that I learnt apply to my mom.
The psychiatrist also believes, based on mom's history that she has rapid progressing dementia with Lewy bodies. Lewy bodies are a by product of proteins that we need for normal neurotransmissions of messages to the brain. When the Lewy bodies are created they attack the cortex of the brain. That's where all the grey matter is and that's what pretty much controls every body function, emotion, memory, thought and language. The cortex contains the cerebellum and the cerebrum. It makes up 2/3's of our brain and that's what is being attacked and slowly killing my mother. He said she meets enough of the Lewy bodies criteria but that they can't determine if they are present until after she has passed and an autopsy is done and the brain tissue examined. There is nothing that stops it, no medication that will slow it and it also presents differently in each patient. It's also genetic and tends to run in families.
My grandmother died of cancer. Really she died of dementia. Hers was slower in the progression and she spent 6 years living in extended care. When they diagnosis of cancer came, my grandfather, my mother and my aunts and uncles all decided that it would serve no purpose to torture her with treatments and surgery. In addition, she was so weakened by the dementia that chances were, she wouldn't survive the treatments or surgery. So the decision was made to make her as pain-free and as comfortable as possible. She passed away 2 months later, in her sleep.
Now my mother has dementia only hers, like I mentioned, is rapid progressing dementia with Lewy bodies. I had to ask what is the prognosis. The doctor was very honest and told me he has seen RPD cases that get to point where they plateau and patients don't get worse but they don't get better and they live like that for about a year before pneumonia or infection gets them and many just slip into a type of coma and pass away peacefully. But he also said that based on mom's history she IS end-stage and she could have anywhere from 6 weeks if the progression continues at the rate it has followed in the last 8 months and if it plateau's them maybe a year or slightly more.
At that point realizing that it is hitting the women in my family and coming to the conclusion that I'm next in line I asked him what are the chances that I will develop dementia. All he could say was "It's very probable". Not the answer I wanted to hear. But he also said that both my mother and grandmother were on Lithium for many, many years and although it isn't proven, many researchers believe that Lithium and other heavy metals that people are exposed to will contribute to the development of the Lewy bodies and that may be the case in my family. If that is the case, then the simple fact that I don't take Lithium may be my saving grace.
So that was the wake up call. It could be 6 weeks or 6 months or a year. Regardless I going to lose more and more of my mom in the near future until she is finally gone. I went and sat with her and I cried again. My mother has been tortured all of her life by her mind and by her brain and now it's going to torture her to her death. It's just not fair.
For my dear friends that read this, please someone listen. If in 25 years I get dementia I don't want my kids or my family or my friends to suffer along with me. So someone do me a favour and do like chief did at the end of 'One Flew Over the Cuckoo's Nest' and just put a soft pillow over my face.
Friday 19 October 2012
The Dementia Diary: BINGO was his name-o
The Dementia Diary: BINGO was his name-o: I must say that keeping mom busy and amused is fun. I refuse to let her lay in bed and die and I don't think that vegetated in front of a ...
BINGO was his name-o
I must say that keeping mom busy and amused is fun. I refuse to let her lay in bed and die and I don't think that vegetated in front of a TV all day is that stimulating either. On this day it was BINGO, and for money too. It's a buck a card and you win 2 bucks a round and the jackpot for the last game which of course is a blackout.
It's a popular activity and the workers needed help porting all those that wanted to participate so I helped. In doing so, who do I run into to but Annie Kazimer and Fran Eklof. I chatted with Fran for a bit and then carried on my way with a couple of the residents from the lock down ward. Yes, the facility has a lock down ward because the residents there are all very capable of walking and if given the opportunity they will bolt. The lock down has it's own kitchen and dining area, all the doors are alarmed and it's very open so the residents have plenty of room to wander around. The sad thing is that more and more of their minds will disappear and they will eventually be moved to mom's wing, the end stage.
The Bingo was full and my mom isn't the only one who needs help with her cards so I sat at a table with mom and two other ladies that I could help, Clara and Margaret. Clara is in continuing care, suffers from the early stages of dementia and would get her numbers mixed up. Margaret is in supportive living but is going deaf and although she was playing 7 cards, she needed help hearing the called numbers. And mom, well mom can't use her hands any more and I wasn't sure if she even knew what was going on.
The game began and encouraged mom to look for the numbers. For the first game she was quiet but I watched her eyes and she was watching the cards. I shouted the numbers to Margaret and when Clara would cover 42, I would gently correct her and say "No, Clara 52, that's five two and she'd find it and cover it. I had trouble getting into my rhythm and keeping up with all the cards. In the second game, I was still trying to find my groove and while I was going over Clara's cards mom pointed to I 25 and said "I 25" because I had missed it. I was so pleased, she can still read numbers at least and understand how Bingo works. But the best came in the third game, we got a line and as soon I covered the last number she yelled out "Bingo". We won 4 bucks and we'll be playing every week now.
The cards took me back to happier times in Canmore when Friday nights meant Bingo at the legion and the kids would all play in the basement. All I needed was some Blue Whales, Strawberries and Robbie Bushulak, Mike Kolenda and Danny Leblanc there teasing me and Karen Saunders. Mom would always give me 10 bucks to play and eat candy with. The deal was that if I won I had to pay her back the 10 bucks and I could keep the rest. In all those years I won once. I walked away with 25 bucks and when I got home I gave mom her 10 back. She told me to keep it and I danced away happy. On this day when I gave mom the 4 bucks and she said "For you, keep it". And I danced away happy.
It's a popular activity and the workers needed help porting all those that wanted to participate so I helped. In doing so, who do I run into to but Annie Kazimer and Fran Eklof. I chatted with Fran for a bit and then carried on my way with a couple of the residents from the lock down ward. Yes, the facility has a lock down ward because the residents there are all very capable of walking and if given the opportunity they will bolt. The lock down has it's own kitchen and dining area, all the doors are alarmed and it's very open so the residents have plenty of room to wander around. The sad thing is that more and more of their minds will disappear and they will eventually be moved to mom's wing, the end stage.
The Bingo was full and my mom isn't the only one who needs help with her cards so I sat at a table with mom and two other ladies that I could help, Clara and Margaret. Clara is in continuing care, suffers from the early stages of dementia and would get her numbers mixed up. Margaret is in supportive living but is going deaf and although she was playing 7 cards, she needed help hearing the called numbers. And mom, well mom can't use her hands any more and I wasn't sure if she even knew what was going on.
The game began and encouraged mom to look for the numbers. For the first game she was quiet but I watched her eyes and she was watching the cards. I shouted the numbers to Margaret and when Clara would cover 42, I would gently correct her and say "No, Clara 52, that's five two and she'd find it and cover it. I had trouble getting into my rhythm and keeping up with all the cards. In the second game, I was still trying to find my groove and while I was going over Clara's cards mom pointed to I 25 and said "I 25" because I had missed it. I was so pleased, she can still read numbers at least and understand how Bingo works. But the best came in the third game, we got a line and as soon I covered the last number she yelled out "Bingo". We won 4 bucks and we'll be playing every week now.
The cards took me back to happier times in Canmore when Friday nights meant Bingo at the legion and the kids would all play in the basement. All I needed was some Blue Whales, Strawberries and Robbie Bushulak, Mike Kolenda and Danny Leblanc there teasing me and Karen Saunders. Mom would always give me 10 bucks to play and eat candy with. The deal was that if I won I had to pay her back the 10 bucks and I could keep the rest. In all those years I won once. I walked away with 25 bucks and when I got home I gave mom her 10 back. She told me to keep it and I danced away happy. On this day when I gave mom the 4 bucks and she said "For you, keep it". And I danced away happy.
Thursday 18 October 2012
The Dementia Diary: With a rebel yell
The Dementia Diary: With a rebel yell: My mom made me a rebel. As much as I love her, she was a controlaholic. Mom for years controlled what I wore, what I did, how my hair was,...
With a rebel yell
My mom made me a rebel. As much as I love her, she was a controlaholic. Mom for years controlled what I wore, what I did, how my hair was, you name it, she controlled it, or at least she tried. I always rebelled. In grade two I paid Warren Musteca 5 bucks to chew up a whole package of Hubba Bubba and put it deep in the roots of my then long hair, so that I would have to have it cut short. My mom insisted on long hair, long curly hair and the curling iron burns I had to endure each morning were unbearable. I hated it and she wouldn't listen, so I had to resort to desperate measures. Elli Stabile had to cut my short because a whole pack of gum was wadded all through it. Years later when I went to Europe and decided not to come back after 6 months, she followed my trail of postcards and found me in Ierapetra, Crete. On a whim she shows up, in Crete, and spent the next 2 weeks trying to convince me to come "It's for your own good, you need to start nursing school in the fall". I didn't go home and just to rebel, I stayed a year longer and I never became a nurse. I was a rebel and I say was, because nowadays I'm such a conformist that I won't even jay walk. But the rebel returned.
Mom will not eat the mush, so all week I've been sneaking in hot sauce and real salt. She still won't eat it but she'll at least graze on it. Just to make sure that she is getting some nutrients, I also sneak in multi-vitamin drops and I've been giving it to her in a glass of juice of it each day. The no feeding tube order just hangs over my head and I want, no I need to keep mom eating and physically healthy. Since the workers and the dieticians won't, I will. I don't really care about the rules at this point. Sometimes rules need to be broken.
On this day, I came an 1/2 hour before lunch so that I could meet with a dietician. I went to mom's wing where I find the 4 workers all around the desk chit chatting. The residents are all in their wheel chairs in front of the TV 'watching' a Jimmy Stewart movie. When I find mom she is asleep in her chair. She has no blanket on her and she's cold and the chair is in upright position so her head was dangling like a rag doll. I went into her room, grabbed a blanket and her orthopedic neck pillow. On my way back I stopped at the desk. I coughed to get their attention and then I said, in a very stern tone, "These residents are paying 50 bucks a day for 3.6 hours of care from you. They pay your wages so do your fucking jobs". I walked away, put the neck pillow on my mom, put the blanket over her and wiped the snot from her nose. They all just stood there, speechless. I know I over reacted and that this wasn't a regular occurrence but I was angry.
Mom and I met with the dietician. Mom eats and chews oatmeal and bits of fruit every morning and without incident. Yet, lunch and dinner are mush. There is a step up from mush and that is mince. It looks more appealing and I'm sure it has more taste. I asked the dietician why mom was put on the puree diet when eats oatmeal and yoghurt with bits of fruit in it. She told me that mom pockets her food in her mouth, especially bread. Vermont, is a very nice lady and well educated yet she can't read, or at least she read files. I asked her if she was aware that mom wears dentures, she was not. I then told her that many people with dentures have a hard time with bread because it sticks to the dentures. Vermont apologized and admitted that she wasn't aware that bread sticks to dentures and thanked me for the information but she justified the puree diet stating that mom would pocket other food in her mouth too.
The soup came and I put crackers in it. She told me that I shouldn't do that because mom might aspirate the crackers. I gave her a 'look' and continued to feed mom the cracker filled soup and she ate it without pocketing or aspirating. Vermont made a note in the file. Then the mush came. Mom would not open her mouth to get any of the mush in. I then explained to Vermont that mom will not eat the mush and if this continues she will continue to lose weight and will wither away to nothing. She responded "Well there is always tube feeding". I had to tell her to read mom's file and she'll find that mom has a personal directive refusing the tube feeding option. She didn't say anything. I asked if I could be make a puree at home and bring it in daily. I knew the answer would be no but I had to try. I just loved the reasoning too, my food safe that I got in BC is not valid in Alberta. I guess cross contamination and proper heating and cooling procedures are different between provinces, hell a kitchen is a kitchen, it's just stupid. Even if I got the Alberta food safe, the kitchen I would cook them in is not approved by the regional health authorities. So that's when I suggested that we upgrade mom to the mince. If she can eat oatmeal without incident then there is no sensible reason why she couldn't be getting mince. Vermont answered "I'm sorry, but that is not an option". Well, I lost it. I stood up, pulled the vitamin drops and salt out of my back pack, slammed them down on the table and said "Then you bloody well try to get that crap into her" and I stormed off.
I was angry, very angry by this point. I went to quietest place I know in the facility. The chapel. The chapel was moved to the centre a few years ago, it's 120 years old and stood for years on the outskirts of Cochrane where there was a small village at the turn of the century. I spend a lot of time there because it so peaceful. I sat in a pew. I didn't pray. I didn't cry. I just sat there and took a few deep cleansing breaths. Then I talked to God or the universe or the Creator or whatever and I asked them to please help my mom eat.
By the time I got back to the dining area, desert had arrived and Vermont was feeding pudding to mom. She told me that she tried Ketchup and mom only took a few bites and I told her I knew that, I've been feeding mom for almost two weeks and she will not eat it. I asked Vermont if we could please try the mince, just to see how she does on it. Vermont reluctantly agreed that the two of us would try it at dinner time. I thanked her.
At dinner Vermont joined us. Mom was served a mince, not mush, of roast pork, mixed vegetables and REAL potatoes. I tasted the mince and it had flavour and the potatoes were salted and veggies were mixed with a bit of cheese sauce, it was close to real food. And mom ate, she ate, she ate more in one meal that she had all week. It did take at least 45 minutes to feed mom, but I do feed Evelyn at the same time. But she ate. Vermont actually gave me a few pointers to stop mom from being distracted. All I have to do is simply put a spoon in mom's hand and that triggers her brain and tells her brain that it's meal time and mom swallows better and is less distracted. Also just touching the spoon to her lip, like a baby, will get her to open her mouth wide enough to get food in. I have never been happier to feed to mom then I was then. Just seeing her eat and not grimacing at the mush in front of her was so uplifting.
Mom will not eat the mush, so all week I've been sneaking in hot sauce and real salt. She still won't eat it but she'll at least graze on it. Just to make sure that she is getting some nutrients, I also sneak in multi-vitamin drops and I've been giving it to her in a glass of juice of it each day. The no feeding tube order just hangs over my head and I want, no I need to keep mom eating and physically healthy. Since the workers and the dieticians won't, I will. I don't really care about the rules at this point. Sometimes rules need to be broken.
On this day, I came an 1/2 hour before lunch so that I could meet with a dietician. I went to mom's wing where I find the 4 workers all around the desk chit chatting. The residents are all in their wheel chairs in front of the TV 'watching' a Jimmy Stewart movie. When I find mom she is asleep in her chair. She has no blanket on her and she's cold and the chair is in upright position so her head was dangling like a rag doll. I went into her room, grabbed a blanket and her orthopedic neck pillow. On my way back I stopped at the desk. I coughed to get their attention and then I said, in a very stern tone, "These residents are paying 50 bucks a day for 3.6 hours of care from you. They pay your wages so do your fucking jobs". I walked away, put the neck pillow on my mom, put the blanket over her and wiped the snot from her nose. They all just stood there, speechless. I know I over reacted and that this wasn't a regular occurrence but I was angry.
Mom and I met with the dietician. Mom eats and chews oatmeal and bits of fruit every morning and without incident. Yet, lunch and dinner are mush. There is a step up from mush and that is mince. It looks more appealing and I'm sure it has more taste. I asked the dietician why mom was put on the puree diet when eats oatmeal and yoghurt with bits of fruit in it. She told me that mom pockets her food in her mouth, especially bread. Vermont, is a very nice lady and well educated yet she can't read, or at least she read files. I asked her if she was aware that mom wears dentures, she was not. I then told her that many people with dentures have a hard time with bread because it sticks to the dentures. Vermont apologized and admitted that she wasn't aware that bread sticks to dentures and thanked me for the information but she justified the puree diet stating that mom would pocket other food in her mouth too.
The soup came and I put crackers in it. She told me that I shouldn't do that because mom might aspirate the crackers. I gave her a 'look' and continued to feed mom the cracker filled soup and she ate it without pocketing or aspirating. Vermont made a note in the file. Then the mush came. Mom would not open her mouth to get any of the mush in. I then explained to Vermont that mom will not eat the mush and if this continues she will continue to lose weight and will wither away to nothing. She responded "Well there is always tube feeding". I had to tell her to read mom's file and she'll find that mom has a personal directive refusing the tube feeding option. She didn't say anything. I asked if I could be make a puree at home and bring it in daily. I knew the answer would be no but I had to try. I just loved the reasoning too, my food safe that I got in BC is not valid in Alberta. I guess cross contamination and proper heating and cooling procedures are different between provinces, hell a kitchen is a kitchen, it's just stupid. Even if I got the Alberta food safe, the kitchen I would cook them in is not approved by the regional health authorities. So that's when I suggested that we upgrade mom to the mince. If she can eat oatmeal without incident then there is no sensible reason why she couldn't be getting mince. Vermont answered "I'm sorry, but that is not an option". Well, I lost it. I stood up, pulled the vitamin drops and salt out of my back pack, slammed them down on the table and said "Then you bloody well try to get that crap into her" and I stormed off.
I was angry, very angry by this point. I went to quietest place I know in the facility. The chapel. The chapel was moved to the centre a few years ago, it's 120 years old and stood for years on the outskirts of Cochrane where there was a small village at the turn of the century. I spend a lot of time there because it so peaceful. I sat in a pew. I didn't pray. I didn't cry. I just sat there and took a few deep cleansing breaths. Then I talked to God or the universe or the Creator or whatever and I asked them to please help my mom eat.
By the time I got back to the dining area, desert had arrived and Vermont was feeding pudding to mom. She told me that she tried Ketchup and mom only took a few bites and I told her I knew that, I've been feeding mom for almost two weeks and she will not eat it. I asked Vermont if we could please try the mince, just to see how she does on it. Vermont reluctantly agreed that the two of us would try it at dinner time. I thanked her.
At dinner Vermont joined us. Mom was served a mince, not mush, of roast pork, mixed vegetables and REAL potatoes. I tasted the mince and it had flavour and the potatoes were salted and veggies were mixed with a bit of cheese sauce, it was close to real food. And mom ate, she ate, she ate more in one meal that she had all week. It did take at least 45 minutes to feed mom, but I do feed Evelyn at the same time. But she ate. Vermont actually gave me a few pointers to stop mom from being distracted. All I have to do is simply put a spoon in mom's hand and that triggers her brain and tells her brain that it's meal time and mom swallows better and is less distracted. Also just touching the spoon to her lip, like a baby, will get her to open her mouth wide enough to get food in. I have never been happier to feed to mom then I was then. Just seeing her eat and not grimacing at the mush in front of her was so uplifting.
Tuesday 16 October 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. ...
The Dementia Diary: Dad should have fucking warned me.
The Dementia Diary: Dad should have fucking warned me.: It was a nightmare of a move from BC. U-haul is a small monopoly in Canada so when things go wrong, like the truck breaks down in Glacier...
The Dementia Diary: Not the Thanksgiving I was hoping for.
The Dementia Diary: Not the Thanksgiving I was hoping for.: My mother always put on a big spread for Thanksgiving. Besides turkey, stuffing, potatoes, gravy and carrots there was always cabbage rolls...
The Dementia Diary: Mom and I are special
The Dementia Diary: Mom and I are special: I have promised my mom that I will see her everyday and I will. On this day, I went down after her nap to spend a couple hours with her. ...
The Dementia Diary: Dylan comes to town
The Dementia Diary: Dylan comes to town: My daughter was born at 6:42 am on August 9th. No lie, my mother was there by 7:00 am. I was going to be induced the next day but Dylan ca...
The Dementia Diary: A strange day
The Dementia Diary: A strange day: Mom has good days and bad days. We all do but when you have Dementia a bad day can be really bad and this was one of those days. Mom has h...
The Dementia Diary: Music gives wings to the mind
The Dementia Diary: Music gives wings to the mind: I make sure that mom doesn't spend her days in bed waiting to die. At the facility there are plenty of activities that with my help she can...
The Dementia Diary: A baby bullit might be in order
The Dementia Diary: A baby bullit might be in order: One of the terrible things about end stage Dementia is that people lose the ability chew and eventually the ability to swallow. On mom's ...
Music gives wings to the mind
I make sure that mom doesn't spend her days in bed waiting to die. At the facility there are plenty of activities that with my help she can participate in. One of them is music therapy led by Shannon Robinson (there's that name again) of JB Music Therapy, who is just a wonderful lady with such a heart for both music and her clients.
In music therapy, Shannon plays songs that hopefully the clients will know, and she encourages them to sing or clap or whatever. Then after a song is played she will talk directly to the participants one on one and ask what the song reminds them of or how it makes them feel. To see the residents and my mom, who are usually stoic and silent, trying to sing and watch them get lost in the music is a truly beautiful thing. Most of the residents are like mom, they don't talk anymore, they can talk, their addled minds won't let them. But they can sing, yes, I've seen it first hand, they can sing. It is truly amazing to see.
I was late this day so one of the staff had already taken mom to the music room. As I entered the room mom cracked a smile, a real smile and loudly said "Hi Lisa". I knew it was going to be a good day.
Shannon plays songs that the participants would know. Frank Sinatra, Hank Williams, Bing Crosby etc, etc, and songs from their youth like Tipperary, Jelly Roll Blues and My Bonnie. I didn't know the words to over half the songs but the others sure day. Like I said, it's amazing to watch. As I've gotten to know many of the residents on my mom's wing, the don't/can't speak and they can't remember their own names or ages or where they are but they can remember the words to songs and sing them and they haven't sung many of these songs for 50 years or more. Not my mom though, not this day, she didn't seem to know any of the words.
Mom is actually younger than many of the other residents. One of the ladies in her music therapy is 97 years old and the others are all in their late 80's. I don't think mom ever knew a lot of the songs. I watched her watch them sing and she gave most of them the squint eye. I wonder if mom is jealous. Here are these people, all older than her, they can all still walk and they were singing the songs and the look mom had for them was not a nice look. Things are still working in her brain and the fact that she did smile made me think that some of her frontal lobe must still be there because it seems to me that she feels a bit of emotion.
I felt sorry for her, so I quietly pulled Shannon aside and asked if she could play a song for my mom that I hoped mom would know, my mom and dad's wedding song. Shannon graciously agreed and joked that she takes requests. So Shannon played it and I watched my mom perk up because she knew the song and she knew the words and my God she sang them. Me of course, I cried.
Mom sang these words "Love me tender, love me sweet, never let me go. You have made my life complete and I love you so..." And at the end of the song she said "Elvis". For those of you that don't know, my mom was a big Elvis fan. Her and Sylvia Manning had this big cry fest when he died and why do you think my name is Lisa-Marie. Elvis and Neil Diamond was about I she ever played when I was growing up. I love both Elvis and Neil Diamond and I'm not ashamed to say it and it's thanks to my mom.
Love me tender, love me true. All my dreams fulfilled. For my darlin' I love you and I always will. The king is not dead and neither is my mom.
In music therapy, Shannon plays songs that hopefully the clients will know, and she encourages them to sing or clap or whatever. Then after a song is played she will talk directly to the participants one on one and ask what the song reminds them of or how it makes them feel. To see the residents and my mom, who are usually stoic and silent, trying to sing and watch them get lost in the music is a truly beautiful thing. Most of the residents are like mom, they don't talk anymore, they can talk, their addled minds won't let them. But they can sing, yes, I've seen it first hand, they can sing. It is truly amazing to see.
I was late this day so one of the staff had already taken mom to the music room. As I entered the room mom cracked a smile, a real smile and loudly said "Hi Lisa". I knew it was going to be a good day.
Shannon plays songs that the participants would know. Frank Sinatra, Hank Williams, Bing Crosby etc, etc, and songs from their youth like Tipperary, Jelly Roll Blues and My Bonnie. I didn't know the words to over half the songs but the others sure day. Like I said, it's amazing to watch. As I've gotten to know many of the residents on my mom's wing, the don't/can't speak and they can't remember their own names or ages or where they are but they can remember the words to songs and sing them and they haven't sung many of these songs for 50 years or more. Not my mom though, not this day, she didn't seem to know any of the words.
Mom is actually younger than many of the other residents. One of the ladies in her music therapy is 97 years old and the others are all in their late 80's. I don't think mom ever knew a lot of the songs. I watched her watch them sing and she gave most of them the squint eye. I wonder if mom is jealous. Here are these people, all older than her, they can all still walk and they were singing the songs and the look mom had for them was not a nice look. Things are still working in her brain and the fact that she did smile made me think that some of her frontal lobe must still be there because it seems to me that she feels a bit of emotion.
I felt sorry for her, so I quietly pulled Shannon aside and asked if she could play a song for my mom that I hoped mom would know, my mom and dad's wedding song. Shannon graciously agreed and joked that she takes requests. So Shannon played it and I watched my mom perk up because she knew the song and she knew the words and my God she sang them. Me of course, I cried.
Mom sang these words "Love me tender, love me sweet, never let me go. You have made my life complete and I love you so..." And at the end of the song she said "Elvis". For those of you that don't know, my mom was a big Elvis fan. Her and Sylvia Manning had this big cry fest when he died and why do you think my name is Lisa-Marie. Elvis and Neil Diamond was about I she ever played when I was growing up. I love both Elvis and Neil Diamond and I'm not ashamed to say it and it's thanks to my mom.
Love me tender, love me true. All my dreams fulfilled. For my darlin' I love you and I always will. The king is not dead and neither is my mom.
Monday 15 October 2012
A baby bullit might be in order
The menu at the facility for the residents like mom is pretty much the same. Oatmeal and yoghurt for breakfast and mush for lunch and mush for dinner. I have tasted the mush and the mush all tastes the same. The only variation is the vegetable mush which could be anything from carrots or peas to squash or beets. But the mush is mush and the lunch mush looks and tastes just like the dinner mush and if I didn't know better, which I don't, I think they are just reserving the same mush over and over again. I might have to sneak into the kitchen one day. If you ask mom what she had for lunch she'll tell you fish. If you ask mom what she had for dinner, she'll tell you fish. Hell in mom's mind she's eating fish everyday and twice a day. The thing is that mom hates fish, so everything tastes like fish to her.
The staff assure me that mom has a good breakfast. She likes oatmeal (though I know she prefers Cream of Wheat) and she like yoghurt. I feed her at every lunch and at most of the dinners too. At lunch she has no problem eating the soup or the pudding for dessert. However, the mush in between those two courses, oddly enough suddenly mom has problems swallowing and I don't blame her. I watch her face when the mush is put in front of her and her eyes squint at it and I can just see her absolute dislike for the stuff. If the potatoes are real (sometimes they are fake mashed potatoes) she'll have a few bites of that and if the vegetable mush is good, she'll have a few bites of that too. But that meat mush, well it's just gross and I wouldn't feed it to a dog. There is no salt and pepper on any of the tables, no ketchup, no butter to even slightly enhance or hide the blandness of the mush (I'm going to sneak in some Ketchup). It makes me wonder if the dieticians really care or do they think, these people have no mind left so what does it matter. Well it does matter, it matters to me because I don't want my mom to die yet and everyone knows that we get vitamins and energy from our food.
I raised two children and when they were babies it made no sense to me to buy jars of baby food when all I needed to do was cook something up, put it in the blender and then freeze the puree in ice cube trays. Someone figured this out and created the baby bullit and they are now uber rich because of it. I am now thinking that I can make a decent tasting stew and get a baby bullit and blend it into cubes and freeze it, just like I did with the kids (minus the baby bullit) but make it for mom. It would have some taste and some flavour and nutrition and maybe, just maybe mom would eat it. Hell, I could do all her food, the vegetable, the potatoes, the meat, you name it. I'd add some butter and salt and seasoning because in all honesty, at this point do we really need to worry about her cholesterol or blood pressure. I'm sure Canadian Tire will have a baby bullit.
The sad thing is that my mother struggled with her weight for as long as I can remember. She was always dieting or trying this new fad or that new fad when really all she had to do was stop eating so much bread and cheese and buttermilk. Finally she has reached the weight she always wanted to be at, 140 lbs. Yep, the Dementia diet works, but I wouldn't recommend it.
Sunday 14 October 2012
A strange day
Mom has good days and bad days. We all do but when you have Dementia a bad day can be really bad and this was one of those days. Mom has her first worrisome bed sore. So when I came just before lunch the wing nurse told me that she would have to eat and then return to bed. Now, this makes no sense to me. If she has a bad bedsore then why would you keep her in bed??? I questioned the nurse and asked why the doctor hasn't been around to look at it. Her answer "We only bother the doctor when they become infected". Believe me, I was biting my lip from the stupidity of that. Why wouldn't you try to avoid infection and have a doctor look at it and even prescribe something prior to infection. Then I thought about it, I'm sure bedsores are a very common occurrence and a doctor could spend all day just looking at bedsores. Still, it worries me because an infection could be what puts mom over the edge and I would hate for the reason for her passing to be a fucking bedsore.
So after lunch the nurses wanted to change her dressing and then put back in bed. I wanted to get a look at this bedsore, but of course they wouldn't let me so I waited outside in the common area and watched some tv with the other residents. Then I hear "I know you." It was the lady next to me, my mothers 'room mate'.
I reminded her that I'm Elaine's daughter and she responded "You haven't changed a bit, you still have that cute little button nose". Well this peaked my curiosity and sure enough, she did know me. Olga lived around the corner from us in Canmore, in the 70's when we still lived on 4th street. Her daughter Jo-ann babysat me a few times and my brothers went to school with her son Manuel and she remembers me from the old arena and when I figure skated. We talked about Duncan Baxter and the Bushulaks and the Myers and the Fules and everyone from the old neighborhood. What a small world and here 40 years later old neighborhood women sharing the same room. "Shame about your mom," she said. Then the nurses came and got me and told me that I could go and sit with mom.
Mom had been cranky at lunch, refusing to eat, so I knew that this bedsore must be causing her some pain. I sat beside the bed and read People magazine to her and then Chatelaine, showing her the pictures, she just stared at me. I thought she would fall asleep but she didn't and that confirmed for me that she must be in pain. I went and got a Reader's Digest to share with her and I started reading an article to her and then she blurts out "Get that stupid look off your face". Well wasn't that a blast from past. There was the mother I knew and loved and suddenly I was 15 again. I know angry outbursts like that are because of Dementia but still I found it comforting. Yep, having my mom tell me off was like hearing heaven. I carried on reading. About a half hour later I could see her eyes were getting droopy and she blurted out again "You can leave now". So I kissed her head and told her to have a good nap. Then I went to workers station and I didn't ask them, I told them to keep an eye on the bedsore because if it gets infected, I will be pissed off and I may be all roses and sunshine, but you don't want to piss me off. I think they got it.
So after lunch the nurses wanted to change her dressing and then put back in bed. I wanted to get a look at this bedsore, but of course they wouldn't let me so I waited outside in the common area and watched some tv with the other residents. Then I hear "I know you." It was the lady next to me, my mothers 'room mate'.
I reminded her that I'm Elaine's daughter and she responded "You haven't changed a bit, you still have that cute little button nose". Well this peaked my curiosity and sure enough, she did know me. Olga lived around the corner from us in Canmore, in the 70's when we still lived on 4th street. Her daughter Jo-ann babysat me a few times and my brothers went to school with her son Manuel and she remembers me from the old arena and when I figure skated. We talked about Duncan Baxter and the Bushulaks and the Myers and the Fules and everyone from the old neighborhood. What a small world and here 40 years later old neighborhood women sharing the same room. "Shame about your mom," she said. Then the nurses came and got me and told me that I could go and sit with mom.
Mom had been cranky at lunch, refusing to eat, so I knew that this bedsore must be causing her some pain. I sat beside the bed and read People magazine to her and then Chatelaine, showing her the pictures, she just stared at me. I thought she would fall asleep but she didn't and that confirmed for me that she must be in pain. I went and got a Reader's Digest to share with her and I started reading an article to her and then she blurts out "Get that stupid look off your face". Well wasn't that a blast from past. There was the mother I knew and loved and suddenly I was 15 again. I know angry outbursts like that are because of Dementia but still I found it comforting. Yep, having my mom tell me off was like hearing heaven. I carried on reading. About a half hour later I could see her eyes were getting droopy and she blurted out again "You can leave now". So I kissed her head and told her to have a good nap. Then I went to workers station and I didn't ask them, I told them to keep an eye on the bedsore because if it gets infected, I will be pissed off and I may be all roses and sunshine, but you don't want to piss me off. I think they got it.
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