Monday 5 November 2012
The Dementia Diary: Blinded by love
The Dementia Diary: Blinded by love: Many people have pm'd me on Facebook and or sent me e-mails praising me for what I am doing for and with my mother. Thank you all because i...
Blinded by love
Many people have pm'd me on Facebook and or sent me e-mails praising me for what I am doing for and with my mother. Thank you all because it helps to keep me upbeat. But the real praise should go to my father because life with mom was always, shall I say interesting. Many of you know why. Many of you know that long before the dementia mom struggled with mental illness. It's my father who was there every time she fell, to pick her back up. And he's still there and he still picks her up.
When dad married mom she was pregnant. Some would say it was the times and that's what men when they got a girl pregnant. I don't believe that. I believe he genuinely loved her and he still does. I asked him many, many years ago, as we waited in the ER of the Rockyview in Calgary for a bed in the psych ward, that if he knew then what he knows now, would he have still married mom. Without any hesitation and a glaring look of surprise that I would even ask such a question, he answered a resounding "Yes."
What amazes me about my dad is that many men would have cut and run at the first psychotic episode, not my dad. What amazes me even more is that most men would have cut and run at the second, third, fourth.....20th psychotic episode, not my dad. My dad always believed that mom would get better and that some day a medication would be created that would help her even more and he was right. Seraquil did wonders for my mom's mental health and they enjoyed many years together without a breakdown every few months. Maybe it helped that all three kids were out of the house by then too but either way, it brought some semblence of normality to their retirement years and they had many good times together.
Dad kept mom at home for as long as he could. He had some of the house refitted with devices for mom. He built with his own hands a ramp so she could get in and out of the house. He cooked for her, he helped her to the bathroom and did everything that she needed help with, everything. Eventually though with a lot prompting from family and friends, dad made the hard decision to place mom in a care facility. It was probably the hardest decision he has ever made. Yet he still would bring her home on the weekends and unfortunately over a short time, that was no longer an option.
After that my dad went in to a depression. It was obvious to everyone. Whenever I would call he was emotional and often crying. You see my dad has always been blinded by his love. For years when mom would get psychotic or manic or depressed I would watch my dad try to get mom to take her medication. He didn't want to ever take her to the psych ward because he knew what that meant. It meant that someone from the family would have to come to help care for us kids or that he would have to ask a friend to take me into their home until mom was better. But it also meant there would be ECT (shock treatments) for mom and usually numerous ECT's and he hated them, we all did. Everytime mom had those treatments she would lose a little bit of memory and I think dad was afraid that she would lose the memories of him and us kids. Thankfully she never did.
With the dementia dad really believed that the doctors were wrong and that she would get better. He again was blinded by his love and I know he really thought that she would snap out of it. He watched as she continued to fade and he finally had to accept and realize that she wasn't going to ever get better and that she was going to get worse and that she will pass away. That is another reason why I decided to move back to Alberta. My mom needs me but my dad needs me too.
Everyday my dad goes to see mom. He sits with her and watches tv, or he will take her for a walk to watch the fish and the birds and outside if it's not to cold, or he will sometimes go to music therapy or drumming with her. He always does her laundry and he decided that homemade Borscht would be better for her than the soups they make at the facility, so he's breaking a rule and we are bringing in Borscht for her. He cries when she remembers something but they are happy tears because sometimes he doesn't remember what she does and it makes him smile at the roses that he's getting in November. We drove to Calgary in the first season snowstorm to get mom an orthopedic neck pillow because she needed one. When mom needs cream or Kleenex's or lip balm or more socks, everything stops for dad and he does it. Then again, he was always that way with mom. Dad believed that if mother was happy, we would all be happy and he was right. Perhaps he could be a little over indulgent with her, but, well he loved her.
I was recently asked why I have never married. The answer is because I have yet to meet a man that is equal to my father. He loves unconditionally, he is hard working, he is determined, he is faithful, he is enduring, he is accepting, he is a rock when you need it and has always been my mom's soft place to land when she fell. Maybe I'll find that someday and I won't settle for anything less. I want a man that can be blinded by love.
When dad married mom she was pregnant. Some would say it was the times and that's what men when they got a girl pregnant. I don't believe that. I believe he genuinely loved her and he still does. I asked him many, many years ago, as we waited in the ER of the Rockyview in Calgary for a bed in the psych ward, that if he knew then what he knows now, would he have still married mom. Without any hesitation and a glaring look of surprise that I would even ask such a question, he answered a resounding "Yes."
What amazes me about my dad is that many men would have cut and run at the first psychotic episode, not my dad. What amazes me even more is that most men would have cut and run at the second, third, fourth.....20th psychotic episode, not my dad. My dad always believed that mom would get better and that some day a medication would be created that would help her even more and he was right. Seraquil did wonders for my mom's mental health and they enjoyed many years together without a breakdown every few months. Maybe it helped that all three kids were out of the house by then too but either way, it brought some semblence of normality to their retirement years and they had many good times together.
Dad kept mom at home for as long as he could. He had some of the house refitted with devices for mom. He built with his own hands a ramp so she could get in and out of the house. He cooked for her, he helped her to the bathroom and did everything that she needed help with, everything. Eventually though with a lot prompting from family and friends, dad made the hard decision to place mom in a care facility. It was probably the hardest decision he has ever made. Yet he still would bring her home on the weekends and unfortunately over a short time, that was no longer an option.
After that my dad went in to a depression. It was obvious to everyone. Whenever I would call he was emotional and often crying. You see my dad has always been blinded by his love. For years when mom would get psychotic or manic or depressed I would watch my dad try to get mom to take her medication. He didn't want to ever take her to the psych ward because he knew what that meant. It meant that someone from the family would have to come to help care for us kids or that he would have to ask a friend to take me into their home until mom was better. But it also meant there would be ECT (shock treatments) for mom and usually numerous ECT's and he hated them, we all did. Everytime mom had those treatments she would lose a little bit of memory and I think dad was afraid that she would lose the memories of him and us kids. Thankfully she never did.
With the dementia dad really believed that the doctors were wrong and that she would get better. He again was blinded by his love and I know he really thought that she would snap out of it. He watched as she continued to fade and he finally had to accept and realize that she wasn't going to ever get better and that she was going to get worse and that she will pass away. That is another reason why I decided to move back to Alberta. My mom needs me but my dad needs me too.
Everyday my dad goes to see mom. He sits with her and watches tv, or he will take her for a walk to watch the fish and the birds and outside if it's not to cold, or he will sometimes go to music therapy or drumming with her. He always does her laundry and he decided that homemade Borscht would be better for her than the soups they make at the facility, so he's breaking a rule and we are bringing in Borscht for her. He cries when she remembers something but they are happy tears because sometimes he doesn't remember what she does and it makes him smile at the roses that he's getting in November. We drove to Calgary in the first season snowstorm to get mom an orthopedic neck pillow because she needed one. When mom needs cream or Kleenex's or lip balm or more socks, everything stops for dad and he does it. Then again, he was always that way with mom. Dad believed that if mother was happy, we would all be happy and he was right. Perhaps he could be a little over indulgent with her, but, well he loved her.
I was recently asked why I have never married. The answer is because I have yet to meet a man that is equal to my father. He loves unconditionally, he is hard working, he is determined, he is faithful, he is enduring, he is accepting, he is a rock when you need it and has always been my mom's soft place to land when she fell. Maybe I'll find that someday and I won't settle for anything less. I want a man that can be blinded by love.
Saturday 3 November 2012
The Dementia Diary: She still has my back
The Dementia Diary: She still has my back: Those who know me will tell you that I'm brutally honest. Don't ask me what I think or how you look or if I like the guy or girl your dati...
She still has my back
Those who know me will tell you that I'm brutally honest. Don't ask
me what I think or how you look or if I like the guy or girl your dating
because I won't candy coat the truth. I might say, "That's a dumb
idea," or "You might want to do some planks to tighten your belly before
you wear that dress," or "He's a knob/she's not that bright of a
bulb." But I also might say, "That's is a brilliant idea, thank you,"
or "Get the dress, who cares how much it is, you look terrific in it,"
or "Treat her right/he's a keeper." This isn't part of my personality
rather it's what my mom taught me. She would say over and over
"Sometimes, people need to hear the truth." Mom was right.
I'm sure there are some people reading this who I have offended with the truth and I know that there are some people reading this that my mom offended with the truth. I'm not sorry and neither was my mom and at some point you looked back and thought about it and came to the conclusion that we were right to speak our minds and to speak the truth and you might even be a little bit thankful or not.
The full-time and enduring staff at the extended care facility are terrific. Many of them remember mom when she was healthy and many say to me that I don't look her, but I sure remind them of her and it's because I speak my mind. I have great relationships with the full timers. They are there not only to help mom but they also help me with encouraging words and the occasional hug. They/we always relay information about how her morning was, or I let them know if she is having visitors and how much she ate, etc, etc. We share information about her care and they love to hear the stories of even some of the crazier things she does. So Kudos to Cathy, Ashley, Mary, Nora, Erica, Jason, Joyce and anyone I've forgotten.
There are the part-timers and some of them are really great too. Some, not so much and it shows. Those that are just doing it for the money are so anti-social and regimented in their mannerisms and behaviours that I don't like to be around them. Many of them don't even talk to the residents as they port them to a meal, or feed them or anything. They don't ask the resident if they would rather watch TV or take a nap, they just do what they feel needs to be done without any real consideration of what the resident wants. End stage or not, talking or not, these residents deserve to be treated with respect and consideration.
Then there are the casuals. Most of these staff members I don't know well enough to make a judgement. What I do know is that they don't work enough with the patients to know the routines or likes or behaviours of the residents. Because I'm there everyday and partially because of my memory, I do. I can tell you what Marjorie likes to drink and that Olga is actually awake when her eyes are closed and that Gord really isn't a prick, he's just misunderstood.
Today, due to some some sickness, a weekend and scheduled time off for the full-timers and part-timers, there were all casuals on the morning/afternoon shift. When I arrived I saw Audrey (a spouse/caregiver of a resident) re-arranging and moving residents to their proper places. She was so glad I was there to help because the whole room was a 'cluster fuck'. After we did that and everyone was properly seated, two of them took lunch break at the busiest time. That left myself, Audrey and two casuals to deal with lunch service and feeding. Audrey and I organized it without their help or consent and decided that she would do the drinks, I would bibs out and on and start with the soups. One of the casuals, a nice girl but out of her element said "You don't do that, we do." I smiled and responded "Well, it looks like we do and since it appears that you don't, we will," and I carried on.
Within minutes all the residents had their bibs, drinks and soups so Audrey and I went about on helping those who need assistance. The casuals just stood there really not knowing where to go or what to do. The girl came to my table and while I was giving Evelyn some soup, she proceeded to try to give mom her soup (which is in a cup with a straw) by putting crackers in the cup. I had to point out to her that the crackers will clog the straw and I asked her to go and get a new cup of soup and she reluctantly did.
As the lunch proceeded on I listened to this casual worker as she spoke with the residents. "Oh Sam, take a widdo bite for me," and "Marie please, please, please drink the milk." It wasn't only what she was saying but also her tone of voice, like she was talking to a baby and she may as well have been saying "Cootchie, cootchie, coo."
She came to our table and said "Hi Elaine," in her baby voice. "Can you give me a little smile." Well that was it, sometimes people need to be told the truth kept running through my mind. So, I spoke up.
"Do you work at a daycare?" I asked.
"No, why?" she responded.
I then proceeded to tell her that she speaks to the residents like they are children and they aren't children, nor do they have the minds of children and that I find it demeaning. She then told me that she disagreed and since I'm just (YES SHE SAID JUST) a volunteer and she is a trained health care worker, that she would know best how to speak with the residents. Well the hairs on my neck stood up and I said "Your 5 month training at Columbia College or Academy of Learning or wherever may have taught you how to lift properly and how to administer medication properly but it did not teach you how to communicate properly. ONE of my degrees in communication DID teach me, over 4 years, how to communicate properly."
She then asked my mom, and again in a baby-like voice, "Elaine, do I talk to you like you're a child?"
Mom turned her head and looked at her and slowly but clearly answered "Yes, you do, stop it."
I nodded and smugly smiled at the girl. I was happy because my mom still has my back.
I'm sure there are some people reading this who I have offended with the truth and I know that there are some people reading this that my mom offended with the truth. I'm not sorry and neither was my mom and at some point you looked back and thought about it and came to the conclusion that we were right to speak our minds and to speak the truth and you might even be a little bit thankful or not.
The full-time and enduring staff at the extended care facility are terrific. Many of them remember mom when she was healthy and many say to me that I don't look her, but I sure remind them of her and it's because I speak my mind. I have great relationships with the full timers. They are there not only to help mom but they also help me with encouraging words and the occasional hug. They/we always relay information about how her morning was, or I let them know if she is having visitors and how much she ate, etc, etc. We share information about her care and they love to hear the stories of even some of the crazier things she does. So Kudos to Cathy, Ashley, Mary, Nora, Erica, Jason, Joyce and anyone I've forgotten.
There are the part-timers and some of them are really great too. Some, not so much and it shows. Those that are just doing it for the money are so anti-social and regimented in their mannerisms and behaviours that I don't like to be around them. Many of them don't even talk to the residents as they port them to a meal, or feed them or anything. They don't ask the resident if they would rather watch TV or take a nap, they just do what they feel needs to be done without any real consideration of what the resident wants. End stage or not, talking or not, these residents deserve to be treated with respect and consideration.
Then there are the casuals. Most of these staff members I don't know well enough to make a judgement. What I do know is that they don't work enough with the patients to know the routines or likes or behaviours of the residents. Because I'm there everyday and partially because of my memory, I do. I can tell you what Marjorie likes to drink and that Olga is actually awake when her eyes are closed and that Gord really isn't a prick, he's just misunderstood.
Today, due to some some sickness, a weekend and scheduled time off for the full-timers and part-timers, there were all casuals on the morning/afternoon shift. When I arrived I saw Audrey (a spouse/caregiver of a resident) re-arranging and moving residents to their proper places. She was so glad I was there to help because the whole room was a 'cluster fuck'. After we did that and everyone was properly seated, two of them took lunch break at the busiest time. That left myself, Audrey and two casuals to deal with lunch service and feeding. Audrey and I organized it without their help or consent and decided that she would do the drinks, I would bibs out and on and start with the soups. One of the casuals, a nice girl but out of her element said "You don't do that, we do." I smiled and responded "Well, it looks like we do and since it appears that you don't, we will," and I carried on.
Within minutes all the residents had their bibs, drinks and soups so Audrey and I went about on helping those who need assistance. The casuals just stood there really not knowing where to go or what to do. The girl came to my table and while I was giving Evelyn some soup, she proceeded to try to give mom her soup (which is in a cup with a straw) by putting crackers in the cup. I had to point out to her that the crackers will clog the straw and I asked her to go and get a new cup of soup and she reluctantly did.
As the lunch proceeded on I listened to this casual worker as she spoke with the residents. "Oh Sam, take a widdo bite for me," and "Marie please, please, please drink the milk." It wasn't only what she was saying but also her tone of voice, like she was talking to a baby and she may as well have been saying "Cootchie, cootchie, coo."
She came to our table and said "Hi Elaine," in her baby voice. "Can you give me a little smile." Well that was it, sometimes people need to be told the truth kept running through my mind. So, I spoke up.
"Do you work at a daycare?" I asked.
"No, why?" she responded.
I then proceeded to tell her that she speaks to the residents like they are children and they aren't children, nor do they have the minds of children and that I find it demeaning. She then told me that she disagreed and since I'm just (YES SHE SAID JUST) a volunteer and she is a trained health care worker, that she would know best how to speak with the residents. Well the hairs on my neck stood up and I said "Your 5 month training at Columbia College or Academy of Learning or wherever may have taught you how to lift properly and how to administer medication properly but it did not teach you how to communicate properly. ONE of my degrees in communication DID teach me, over 4 years, how to communicate properly."
She then asked my mom, and again in a baby-like voice, "Elaine, do I talk to you like you're a child?"
Mom turned her head and looked at her and slowly but clearly answered "Yes, you do, stop it."
I nodded and smugly smiled at the girl. I was happy because my mom still has my back.
Friday 2 November 2012
The Dementia Diary: But she's not there
The Dementia Diary: But she's not there: Every morning when I wake up, I say thank-you. I do so because it means that a phone call in the middle of the night didn't wake me. But i...
But she's not there
Every morning when I wake up, I say thank-you. I do so because it means that a phone call in the middle of the night didn't wake me. But if the phone were to ring and wake me in the middle of the night, I might still say thank-you because that would mean that mom has passed peacefully in her sleep. I don't want to completely lose her, but after a day like today, I realize that I already have.
Mom no longer has good days. Now she has a good couple of hours and even less. During these times she is alert and upright. She will know who I am and who other people are and she will blurt out the occasional name or word and it shows me that she's there. Mom isn't in the moment but something has triggered some grey matter in her brain and she's thinking about something. I like those times, I like them a lot.
When mom has a bad spell, it is totally different. She is hunched forward and can't support her head at all, even with the orthopaedic neck pillow that she has. She drools and her nose doesn't stop running. She stares out into nothing with a dead look on her face. Her hands shake and her body will jerk uncontrollably. But the absolute worse thing that happens during her bad spells is that she looks at me and she has no idea who I am. None what so ever. Mom will actually get a look of fear on her face when she's not there because she doesn't know who I am and she's frightened. She doesn't know who anyone is and she's scared. She doesn't know where she is and she's anxious. It's a terrible thing to see, an complete look of real terror on her face and if she could scream, she would.
When she gets like this, there are two things that I do. Sometimes taking her to the chapel and just sitting with her will calm her down. She still doesn't know who I am but I think that she thinks that whoever I am, I must be a good person because I have taken her to a church. Sometimes the church is being used for a service as many denominations utilize it. When that happens I take her to her room. I position her in front of her wall of pictures. I don't know if this helps her to remember but she will stare and stare at them and it calms her. I watch her and I can see the wheels turning in her head and she is struggling to remember these faces. On occasion she will remember a face and just the other day she blurted out "Ryley!" and then looked at me for approval and I said "Yeah mom, your grandson Ryley, my son."
Today during a bad spell, the Anglicans were using the chapel so I took mom to her room and placed her in front of the pictures. She stared and stared and stared and stared and then she started to cry. I held her hand and she tried to flinch. I picked up one of the photos and I pointed to my brother Doug and I asked her who that was. No answer, so I pointed to uncle Gene and asked who is that. No answer. And so on and so on and she didn't know who anyone was. I pointed to her image in the picture and I asked her again, who is that. Again there was no answer.
I wheeled her to the mirror and I placed her in front of it and I said, "That's you mom, who are you?" and she stared and stared and said "Mom." I started to cry.
"That's you mom, Elaine Mary Remesoff, you're Elaine Mary Remesoff!" She kept staring and I was thinking she really doesn't know who she is. I then I thought how horrifying it must be to look in a mirror and not know who you are. I sat on the bed and cried some more. Cathy the nurse came in, sat beside and put her arm around me. She said that they would put mom down for a nap and maybe after a rest, mom would be better. I stood up and wiped my tears away and kissed mom on the forehead. "See ya mom," I said.
"See ya mom," she said and I walked out and turned around to look at her, but she's not there.
Mom no longer has good days. Now she has a good couple of hours and even less. During these times she is alert and upright. She will know who I am and who other people are and she will blurt out the occasional name or word and it shows me that she's there. Mom isn't in the moment but something has triggered some grey matter in her brain and she's thinking about something. I like those times, I like them a lot.
When mom has a bad spell, it is totally different. She is hunched forward and can't support her head at all, even with the orthopaedic neck pillow that she has. She drools and her nose doesn't stop running. She stares out into nothing with a dead look on her face. Her hands shake and her body will jerk uncontrollably. But the absolute worse thing that happens during her bad spells is that she looks at me and she has no idea who I am. None what so ever. Mom will actually get a look of fear on her face when she's not there because she doesn't know who I am and she's frightened. She doesn't know who anyone is and she's scared. She doesn't know where she is and she's anxious. It's a terrible thing to see, an complete look of real terror on her face and if she could scream, she would.
When she gets like this, there are two things that I do. Sometimes taking her to the chapel and just sitting with her will calm her down. She still doesn't know who I am but I think that she thinks that whoever I am, I must be a good person because I have taken her to a church. Sometimes the church is being used for a service as many denominations utilize it. When that happens I take her to her room. I position her in front of her wall of pictures. I don't know if this helps her to remember but she will stare and stare at them and it calms her. I watch her and I can see the wheels turning in her head and she is struggling to remember these faces. On occasion she will remember a face and just the other day she blurted out "Ryley!" and then looked at me for approval and I said "Yeah mom, your grandson Ryley, my son."
Today during a bad spell, the Anglicans were using the chapel so I took mom to her room and placed her in front of the pictures. She stared and stared and stared and stared and then she started to cry. I held her hand and she tried to flinch. I picked up one of the photos and I pointed to my brother Doug and I asked her who that was. No answer, so I pointed to uncle Gene and asked who is that. No answer. And so on and so on and she didn't know who anyone was. I pointed to her image in the picture and I asked her again, who is that. Again there was no answer.
I wheeled her to the mirror and I placed her in front of it and I said, "That's you mom, who are you?" and she stared and stared and said "Mom." I started to cry.
"That's you mom, Elaine Mary Remesoff, you're Elaine Mary Remesoff!" She kept staring and I was thinking she really doesn't know who she is. I then I thought how horrifying it must be to look in a mirror and not know who you are. I sat on the bed and cried some more. Cathy the nurse came in, sat beside and put her arm around me. She said that they would put mom down for a nap and maybe after a rest, mom would be better. I stood up and wiped my tears away and kissed mom on the forehead. "See ya mom," I said.
"See ya mom," she said and I walked out and turned around to look at her, but she's not there.
Thursday 1 November 2012
The Dementia Diary: Halloween apples
The Dementia Diary: 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 ...
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