Monday, 12 November 2012
The Dementia Diary: Just what I needed
The Dementia Diary: Just what I needed: I had an absolutely fabulous time away, I cannot lie. Yes, if the phone rang, my heart stopped a bit and I worried that the staff wouldn't...
Just what I needed
I had an absolutely fabulous time away, I cannot lie. Yes, if the phone rang, my heart stopped a bit and I worried that the staff wouldn't feed mom properly, but otherwise, I had a great getaway.
I returned last night and of course the first place I went was to see mom. The look on her face said it all, her eyes brighten up and she said "You were gone." The staff told me that she asked about me a couple times and so did Evelyn and Olga and Violet and Bob. Evelyn said "You left without me," as she thought I had taken the train we were scheduled to take together. I told her she didn't miss anything and that it broke down and we were stranded for 2 days. When Robbie saw me he wheeled himself over and grabbed my hand as if to say "Welcome back, I missed you." It felt really good to know that presence on the ward is appreciated and even better that even with their addled minds, some of residents have emblazoned me in their memories.
The time away was just what I needed and I'm so very glad that I moved back home. Time in nature, communing with the trees, the water, the mountains and all the creatures that call it home forces me to see the simple loveliness in this world. When it's in your face, you can't deny it. The crisp air as it bites at your nose. The trickle of water as it makes its path in the world. The majesty of the mountains and the hard beauty they display. The trees glistening with hoar frost. The mule deer staring at me while she rested. The ram who grunted "Leave me alone," when I got near and ran off to find a more desolate spot. The woodpecker who was too busy to notice me. Add friends and family and food to the mix and you have a fantabulous 3 days.
I had times like this with mom. Mom liked to walk and hike. She liked to walk by the river and stop and listen to sounds. Sometimes she would throw rocks into the water and sometimes she would just sit on the riverbanks and enjoy the beauty that this world offered her. We hiked Mt. Assiniboine, Yamunska, Lady Macdonald, Stanely Glacier and Marble and Johnson Canyons, just to name a few. It was during these hikes that we had our best arguments, sometimes so loud that the animals would run off and birds in the trees would fly off. I would bolt ahead and would scream from a distance. But in nature we would always come to a compromise and the issue would be resolved for now.
It hurts my heart that mom couldn't join us this weekend. It hurts my heart that she'll never be able to hike or walk with me again. But, I'm so grateful that we had those treks together and were always able to put aside our differences and see the peace and beauty in the world. Today I'll take outside and at least let her feel the crisp, cool air and watch the sunlight dance on the snow. That's the best I can do.
I returned last night and of course the first place I went was to see mom. The look on her face said it all, her eyes brighten up and she said "You were gone." The staff told me that she asked about me a couple times and so did Evelyn and Olga and Violet and Bob. Evelyn said "You left without me," as she thought I had taken the train we were scheduled to take together. I told her she didn't miss anything and that it broke down and we were stranded for 2 days. When Robbie saw me he wheeled himself over and grabbed my hand as if to say "Welcome back, I missed you." It felt really good to know that presence on the ward is appreciated and even better that even with their addled minds, some of residents have emblazoned me in their memories.
The time away was just what I needed and I'm so very glad that I moved back home. Time in nature, communing with the trees, the water, the mountains and all the creatures that call it home forces me to see the simple loveliness in this world. When it's in your face, you can't deny it. The crisp air as it bites at your nose. The trickle of water as it makes its path in the world. The majesty of the mountains and the hard beauty they display. The trees glistening with hoar frost. The mule deer staring at me while she rested. The ram who grunted "Leave me alone," when I got near and ran off to find a more desolate spot. The woodpecker who was too busy to notice me. Add friends and family and food to the mix and you have a fantabulous 3 days.
I had times like this with mom. Mom liked to walk and hike. She liked to walk by the river and stop and listen to sounds. Sometimes she would throw rocks into the water and sometimes she would just sit on the riverbanks and enjoy the beauty that this world offered her. We hiked Mt. Assiniboine, Yamunska, Lady Macdonald, Stanely Glacier and Marble and Johnson Canyons, just to name a few. It was during these hikes that we had our best arguments, sometimes so loud that the animals would run off and birds in the trees would fly off. I would bolt ahead and would scream from a distance. But in nature we would always come to a compromise and the issue would be resolved for now.
It hurts my heart that mom couldn't join us this weekend. It hurts my heart that she'll never be able to hike or walk with me again. But, I'm so grateful that we had those treks together and were always able to put aside our differences and see the peace and beauty in the world. Today I'll take outside and at least let her feel the crisp, cool air and watch the sunlight dance on the snow. That's the best I can do.
Friday, 9 November 2012
A bit of respite
It was recommended to me by other caregivers and staff and the facility that after 7 weeks of being there everyday, that perhaps I might take some time to myself. I was against the idea. I felt guilty even thinking about it. It made me anxious thinking that something could happen while I was away. Then Audrey, who has been caring for her husband for 7 years, told me that caregivers will burn out. Most of the caregivers are considerably older then I am, but still it could happen. So, with much prodding I am taking a couple days off from care giving and will spend it with friends and family. I hope mom will be all right. The staff assured me that they will take good care of her. They have my number in case of emergency
Wow, the child really is the parent now.
Wow, the child really is the parent now.
Thursday, 8 November 2012
The Dementia Diary: The daily rollercoaster ride
The Dementia Diary: The daily rollercoaster ride: Everyday I go through the full gamut of emotions. Happy, sad, angry, indifferent and even numb and sometimes even all of these at once. Wh...
The daily rollercoaster ride
Everyday I go through the full gamut of emotions. Happy, sad, angry, indifferent and even numb and sometimes even all of these at once. When mother is alert and in the present I am happy. She will say something or be aware of the conversation and add her two bits in or she will read the news or enjoy the pages of a magazine or sing the words to a song and she knows who I am and who the nurses are and where she is. I know she is there so I cherish those minutes or hours that's she is with me. But also during these times I will get sad. It is during these times that mom is maybe too aware. She wants to say something but can't. She wants to go for a walk but can't. She wants be knitting or having coffee with a friend, but she can't. She is well aware that she is peeing in a diaper and that her hands won't let her scratch her nose and that her back might be hurting but she can't tell anyone. She'll watch the people who can and then she will cry. So I cry too. It is during the crying times that I sometimes hope that something in her mind will switch and she'll start sun downing and get lost in the voids in her brain, just so she won't cry. Then I feel guilty for thinking that and then I get angry that the universe or God or whoever has allowed this to happen and then I get numb because there is nothing I can do to change the fact that my mother is dieing in a slow and cruel manner.
Just this past Sunday one of the residents of mom's ward passed away. He and mom were both C1 status and although their dementia's were different, they were very much the same. On Saturday night at dinner, I took Eddie his soup as he could still feed himself and swallow minced food. He didn't talk but he grunted a thank-you and I put his bib on him. Sometime in his sleep, he peaked a fever and was unresponsive in the morning. The staff called his family and early Sunday afternoon he quietly and peacefully passed away. He was a former chief of his reserve so they laid his body for viewing in one of the large rec rooms. In the afternoon at least 300 hundred people from the reserve came to pay their respects. I did too because I knew him and two of his daughters, Eddie and Elsie had 11 kids, and I'm some of you reading this played hockey with his boys.
Robbie and Eddie were friends and I saw Robbie sitting solemnly in the dining area. The two of them always ate together and everyday Robbie would come to me to get Eddie's coffee for him. Robbie plays crib everyday and everyday he would have the staff go and get Eddie so that he could watch the game. I went over to Robbie and I asked him if he would like to go and pay his respects. He nodded yes and I wheeled him over to the rec room. Robbie took his friends hand and sat for a moments and then he nodded and smiled at Eddie's body, as if they had just spoken some unheard words to each other. Robbie then motioned me to take him back to the dining room and I did. He grabbed my hand in his hands and as he cried he mouthed the words thank you. I nodded and left him to his grief. Robbie is 96 and has outlived so many people in his life including a wife and children. As I walked towards mom's room I cried for Robbie because it must be terrible to slowly lose yourself AND the people around you. One of the workers asked how Robbie was and I told her. Deneen told me that I need to be prepared and I asked why. She said that it can happen that quick and they prefer that, a peaceful passing not one of infection and pain. I went and said good night to mom.
The next day when I went to collect mom I noticed that her hands were swollen and her wedding ring was tight on her finger. I used some cream and gently removed it. I checked her feet and ankles and they too were swollen, so much so that I removed her socks. I went and found the nurse practitioner and she too looked at the edema. All she could say is that she would keep tabs on it and tell the workers to monitor it and not to put socks on if it continues and she rubbed my shoulder. Mom is a C1 resident, so no intervention will be done.
Mom discovered at age 70 that she only has one kidney. The woman had three kids, numerous surgeries and injuries but having one kidney was not noticed until she was 70. Edema is one of the first signs of kidney failure. I found it odd that only days after losing a resident, mom's kidney might be headed for failure. Having worked with renal patients and the Kidney Foundation I have seen many people pass away from renal failure. Many of the them by choice. When the realize that they will never get a kidney transplant or they are told that they are no longer a candidate for transplant they choose to stop dialysis. Many that I knew had been on dialysis for 7 or more years and they have no life being hooked up to a machine 3 to 5 times a week for 5 hours at a time. Their disease is their life and they choose to go to a hospice for their remaining days and that's all it takes, days. One guy I knew well, Bob was his name, and he called me and told me he was stopping dialysis as he had been removed from the transplant list. He was going to the hospice the following day and he asked if I would bring him a couple packs of smokes and two bottles of Rye, things he wasn't allowed for many years. I did and 5 days later Bob peacefully passed away.
So as I thought about it, I said to myself that if mom's kidney is starting to fail, that's a good thing because it is a pain-free and gentle death and I was pleased. Then moments later I was angered because mom can't choose to stop dialysis today and pass away in 5 days and then I was sad because I'm really enjoying this time we have together.
Later in the day mom and I sat in the dining area and we looked at a magazine. There was an article about the Mayan Caribbean. I read it out loud to mom and she looked at the pictures. She started to cry again. Mom loved to travel and has been to the Mayan Caribbean many times. I started to cry again. I cried happy tears though because I've had some good times on holidays with mom. We met some wonderful people and I have incredible memories. Mom cried because she is sad, she knows she will travel again. In that moment my tears changed to sad tears. I cried because I realized I'll never travel ever again with mom. I cried because I feel her pain.
Just this past Sunday one of the residents of mom's ward passed away. He and mom were both C1 status and although their dementia's were different, they were very much the same. On Saturday night at dinner, I took Eddie his soup as he could still feed himself and swallow minced food. He didn't talk but he grunted a thank-you and I put his bib on him. Sometime in his sleep, he peaked a fever and was unresponsive in the morning. The staff called his family and early Sunday afternoon he quietly and peacefully passed away. He was a former chief of his reserve so they laid his body for viewing in one of the large rec rooms. In the afternoon at least 300 hundred people from the reserve came to pay their respects. I did too because I knew him and two of his daughters, Eddie and Elsie had 11 kids, and I'm some of you reading this played hockey with his boys.
Robbie and Eddie were friends and I saw Robbie sitting solemnly in the dining area. The two of them always ate together and everyday Robbie would come to me to get Eddie's coffee for him. Robbie plays crib everyday and everyday he would have the staff go and get Eddie so that he could watch the game. I went over to Robbie and I asked him if he would like to go and pay his respects. He nodded yes and I wheeled him over to the rec room. Robbie took his friends hand and sat for a moments and then he nodded and smiled at Eddie's body, as if they had just spoken some unheard words to each other. Robbie then motioned me to take him back to the dining room and I did. He grabbed my hand in his hands and as he cried he mouthed the words thank you. I nodded and left him to his grief. Robbie is 96 and has outlived so many people in his life including a wife and children. As I walked towards mom's room I cried for Robbie because it must be terrible to slowly lose yourself AND the people around you. One of the workers asked how Robbie was and I told her. Deneen told me that I need to be prepared and I asked why. She said that it can happen that quick and they prefer that, a peaceful passing not one of infection and pain. I went and said good night to mom.
The next day when I went to collect mom I noticed that her hands were swollen and her wedding ring was tight on her finger. I used some cream and gently removed it. I checked her feet and ankles and they too were swollen, so much so that I removed her socks. I went and found the nurse practitioner and she too looked at the edema. All she could say is that she would keep tabs on it and tell the workers to monitor it and not to put socks on if it continues and she rubbed my shoulder. Mom is a C1 resident, so no intervention will be done.
Mom discovered at age 70 that she only has one kidney. The woman had three kids, numerous surgeries and injuries but having one kidney was not noticed until she was 70. Edema is one of the first signs of kidney failure. I found it odd that only days after losing a resident, mom's kidney might be headed for failure. Having worked with renal patients and the Kidney Foundation I have seen many people pass away from renal failure. Many of the them by choice. When the realize that they will never get a kidney transplant or they are told that they are no longer a candidate for transplant they choose to stop dialysis. Many that I knew had been on dialysis for 7 or more years and they have no life being hooked up to a machine 3 to 5 times a week for 5 hours at a time. Their disease is their life and they choose to go to a hospice for their remaining days and that's all it takes, days. One guy I knew well, Bob was his name, and he called me and told me he was stopping dialysis as he had been removed from the transplant list. He was going to the hospice the following day and he asked if I would bring him a couple packs of smokes and two bottles of Rye, things he wasn't allowed for many years. I did and 5 days later Bob peacefully passed away.
So as I thought about it, I said to myself that if mom's kidney is starting to fail, that's a good thing because it is a pain-free and gentle death and I was pleased. Then moments later I was angered because mom can't choose to stop dialysis today and pass away in 5 days and then I was sad because I'm really enjoying this time we have together.
Later in the day mom and I sat in the dining area and we looked at a magazine. There was an article about the Mayan Caribbean. I read it out loud to mom and she looked at the pictures. She started to cry again. Mom loved to travel and has been to the Mayan Caribbean many times. I started to cry again. I cried happy tears though because I've had some good times on holidays with mom. We met some wonderful people and I have incredible memories. Mom cried because she is sad, she knows she will travel again. In that moment my tears changed to sad tears. I cried because I realized I'll never travel ever again with mom. I cried because I feel her pain.
This is my finger with the wedding/anniversary ring that dad had made for mom.
Tuesday, 6 November 2012
The Dementia Diary: My birthday wish
The Dementia Diary: My birthday wish: I was born in Saskatchewan, by accident. Mom and dad had travelled with the boys out to my grandparents farm because I was due to arrive in...
My birthday wish
I was born in Saskatchewan, by accident. Mom and dad had travelled with the boys out to my grandparents farm because I was due to arrive in December and they didn't want to travel with a newborn at x-mas. Instead, they drove in November to have an early x-mas for my brothers. On the drive back my dad clipped the ass end of a moose and that was that. No one was hurt, except the car, but it put my mom into early labour. Dad stayed with the car and my brothers and my mom was taken to the medical clinic in Swift Current, Saskatchewan by an old trucker who had stopped to help. So, my actually birthday was quite the affair and my mom always made the birthdays that followed quite an affair too.
Everyone from the 'real' Canmore (I won't refer to it as 'old' Canmore anymore) will remember their childhood birthdays because they were fun. My mom always made chocolate cake, from scratch with vanilla butter cream icing. She would wrap dimes, and quarters in parchment paper, not wax paper, and she always put a lot in the cake batter so that every kid at the party would get some money, except Mike Eklof who was allergic to chocolate and she would give him a piece of pie and make sure that a quarter was stuffed in it too.
I'm sure some of you remember how we would all 'dress' for a birthday party, or at least us girls did. I was such a tomboy and I hated wearing dresses and mom knew that but that didn't stop her. Every year, the weekend before my birthday party off to Calgary we would go to Sears at North hill mall to buy a new party dress and a new pair of Buster Brown shoes. She would always pick the frilliest, girliest dress she could find and they were always uncomfortable. I would debut the dress at my party and then I would be forced to wear to every party I was invited to through out the following year. That thankfully stopped at age 11.
We would play fun inside games because usually by November, there was snow on the ground. Mom would make dad rearrange the furniture so we had room to play. She would boil up eggs for the egg races. We would race with eggs in teaspoons (not tablespoons because my mom liked to challenge us) and later do a race where he had to roll them on the carpet with our noses (Again, she had to make it challenging, in the normal game an orange would be used). The clothespin drop was always fun. We had mason jars and each of us was given 10 clothespins and whoever dropped the most into their mason jar, won. Pin the tail on the donkey of course and I can never forget, musical chairs to who else, but Elvis Presley and mom would dance.
Mom never made hot dogs. I think it's German thing but because they weren't real sausage, she would never serve them. Mom always made sandwiches, finger sandwiches with the crusts cut off, I guess to make it elegant, yes Bologna can be elegant. She would also mix a jar of Cheese Whiz with a can of pineapple bits, well drained and make a sandwich spread, they were great and I still make them on occasion. Another sandwich spread she would make is devilled ham, mixed with mayo, diced bits of cheese, green onion and a bit of hot mustard and it was tasty, tasty. I don't know where she got these recipes or if she invented them but the sandwiches served with homemade pickles and potato chips were always a hit. So was her punch. Every year she would bring out her crystal punch bowl and mix ginger ale, grape juice, raspberry juice and a container of frozen raspberries. It was lovely but us kids never got to use the crystal punch tea cups, but mom always bought the little paper punch cups that had handles, again I guess to make it more elegant.
Thanks to Kurtis, Tyrone and Trent Auger, Doug Swift, Richard Chapelow, Lana Riva, Sasha Lowther, Mike Eklof, the late Danny Leblanc, Karen Saunders, Tara and Cory Manning, Colleen Mironuck, Laura Smith, and any others that I've forgotten for some great parties and gifts. Thank you mom for always making my birthday special.
My birthday November 6, 2011 was the last birthday that I got a card and a gift from my mom. I always keep the birthday cards from her and my kids. In it she wrote 'Be thankful for the difficult times, it is during these times that you grow'. Mom always knew what I needed to hear. It also included a 200.00 gift certificate and a note, 'Go and buy yourself a new party dress and some shoes' ( every year since I left home, that's what she sent me for my birthday).
I know that this will be the last birthday I spend with my mother. Instead of shopping and partying I'm going to spend it with my mom. When I blow out the candles on my cake I will make a wish. It won't be a wish to make her dementia go away because I know that wish will never come true. My birthday wish will be that when the time comes that she goes in comfort, with grace and style, with no regrets and mostly that she go peacefully.
Everyone from the 'real' Canmore (I won't refer to it as 'old' Canmore anymore) will remember their childhood birthdays because they were fun. My mom always made chocolate cake, from scratch with vanilla butter cream icing. She would wrap dimes, and quarters in parchment paper, not wax paper, and she always put a lot in the cake batter so that every kid at the party would get some money, except Mike Eklof who was allergic to chocolate and she would give him a piece of pie and make sure that a quarter was stuffed in it too.
I'm sure some of you remember how we would all 'dress' for a birthday party, or at least us girls did. I was such a tomboy and I hated wearing dresses and mom knew that but that didn't stop her. Every year, the weekend before my birthday party off to Calgary we would go to Sears at North hill mall to buy a new party dress and a new pair of Buster Brown shoes. She would always pick the frilliest, girliest dress she could find and they were always uncomfortable. I would debut the dress at my party and then I would be forced to wear to every party I was invited to through out the following year. That thankfully stopped at age 11.
We would play fun inside games because usually by November, there was snow on the ground. Mom would make dad rearrange the furniture so we had room to play. She would boil up eggs for the egg races. We would race with eggs in teaspoons (not tablespoons because my mom liked to challenge us) and later do a race where he had to roll them on the carpet with our noses (Again, she had to make it challenging, in the normal game an orange would be used). The clothespin drop was always fun. We had mason jars and each of us was given 10 clothespins and whoever dropped the most into their mason jar, won. Pin the tail on the donkey of course and I can never forget, musical chairs to who else, but Elvis Presley and mom would dance.
Mom never made hot dogs. I think it's German thing but because they weren't real sausage, she would never serve them. Mom always made sandwiches, finger sandwiches with the crusts cut off, I guess to make it elegant, yes Bologna can be elegant. She would also mix a jar of Cheese Whiz with a can of pineapple bits, well drained and make a sandwich spread, they were great and I still make them on occasion. Another sandwich spread she would make is devilled ham, mixed with mayo, diced bits of cheese, green onion and a bit of hot mustard and it was tasty, tasty. I don't know where she got these recipes or if she invented them but the sandwiches served with homemade pickles and potato chips were always a hit. So was her punch. Every year she would bring out her crystal punch bowl and mix ginger ale, grape juice, raspberry juice and a container of frozen raspberries. It was lovely but us kids never got to use the crystal punch tea cups, but mom always bought the little paper punch cups that had handles, again I guess to make it more elegant.
Thanks to Kurtis, Tyrone and Trent Auger, Doug Swift, Richard Chapelow, Lana Riva, Sasha Lowther, Mike Eklof, the late Danny Leblanc, Karen Saunders, Tara and Cory Manning, Colleen Mironuck, Laura Smith, and any others that I've forgotten for some great parties and gifts. Thank you mom for always making my birthday special.
My birthday November 6, 2011 was the last birthday that I got a card and a gift from my mom. I always keep the birthday cards from her and my kids. In it she wrote 'Be thankful for the difficult times, it is during these times that you grow'. Mom always knew what I needed to hear. It also included a 200.00 gift certificate and a note, 'Go and buy yourself a new party dress and some shoes' ( every year since I left home, that's what she sent me for my birthday).
I know that this will be the last birthday I spend with my mother. Instead of shopping and partying I'm going to spend it with my mom. When I blow out the candles on my cake I will make a wish. It won't be a wish to make her dementia go away because I know that wish will never come true. My birthday wish will be that when the time comes that she goes in comfort, with grace and style, with no regrets and mostly that she go peacefully.
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