Wednesday, 13 February 2013
The Dementia Diary: Miracles DO happen
The Dementia Diary: Miracles DO happen: When I moved home in late summer, I really didn't have any idea of what was ahead. I knew my mom was in a bad way. I knew she couldn't use...
Miracles DO happen
When I moved home in late summer, I really didn't have any idea of what was ahead. I knew my mom was in a bad way. I knew she couldn't use her hands, or walk, or eat without help and she rarely talked. I knew that my dad needed me. I knew that I had come home for a reason but I wasn't sure what the end result would be. I didn't feel lost or without a purpose or anything like that, I simply wasn't sure what lay ahead on my path.
I can remember vividly the first time I saw mom. Although I was aware of all that had slipped away from her I was not prepared for what I saw when my dad pulled back the curtain and said "Mother, look who's here".
I remember my knees buckled and my breath stopped. I remember being overwhelmed with a great sadness because what lay in the bed before me was a sickly, old woman who was dieing and it was not my mother. I cried a lot in those first few days.
I then accepted the fact that dementia was killing my mother and that I had been directed home to be there for her and with her during her final days or weeks or months. None of us thought that mom would even make it to x-mas and we began planning accordingly. I wrote an outline for the obituary. I dug through her stuff and found her address book. Dad and I decided that when the time came that a service at the Sacred Heart in Canmore would be best.
Those first weeks were very hard. I spent as much time as I could with mom and took her to everything that we could go to. I helped her to eat and would read to her and walk around the facility to look at the fish and the birds and even just to sit in the quiet of the chapel sometimes. Mom didn't talk much then but you could see in her eyes when she was angered or bitter and when she was sad or scared.
Slowly but surely, as the medications got out of her system, things came back. I really didn't notice it until near the end of November when she I wasn't feeding her ice cream quick enough and I watched as she grabbed a near by spoon and attempted to get a spoonful herself. I went the next day to the Occupational therapist and asked that he start working with mom as she was trying to use her hands again. He did.
Gradually, more and more of mom came back. She talked, she got demanding, she remembered, she smiled and our death watch ended. We still didn't know what to expect and we let mom guide us and when she set goals, well my dad and I would help her in anyway to achieve those goals. One of those goals was to walk again. We had discussed it with the therapists who said "It is possible but unlikely". It wasn't that mom couldn't, it was the simple fact that her muscles had atrophied and perhaps she simply would not have the strength to accomplish such a feat. I am so overwhelmingly happy to say, that this afternoon I witnessed a miracle. My mother walked for the first time in almost a year.
Sometimes miracles do happen and sometimes to make a miracle, you have to help it along.
I can remember vividly the first time I saw mom. Although I was aware of all that had slipped away from her I was not prepared for what I saw when my dad pulled back the curtain and said "Mother, look who's here".
I remember my knees buckled and my breath stopped. I remember being overwhelmed with a great sadness because what lay in the bed before me was a sickly, old woman who was dieing and it was not my mother. I cried a lot in those first few days.
I then accepted the fact that dementia was killing my mother and that I had been directed home to be there for her and with her during her final days or weeks or months. None of us thought that mom would even make it to x-mas and we began planning accordingly. I wrote an outline for the obituary. I dug through her stuff and found her address book. Dad and I decided that when the time came that a service at the Sacred Heart in Canmore would be best.
Those first weeks were very hard. I spent as much time as I could with mom and took her to everything that we could go to. I helped her to eat and would read to her and walk around the facility to look at the fish and the birds and even just to sit in the quiet of the chapel sometimes. Mom didn't talk much then but you could see in her eyes when she was angered or bitter and when she was sad or scared.
Slowly but surely, as the medications got out of her system, things came back. I really didn't notice it until near the end of November when she I wasn't feeding her ice cream quick enough and I watched as she grabbed a near by spoon and attempted to get a spoonful herself. I went the next day to the Occupational therapist and asked that he start working with mom as she was trying to use her hands again. He did.
Gradually, more and more of mom came back. She talked, she got demanding, she remembered, she smiled and our death watch ended. We still didn't know what to expect and we let mom guide us and when she set goals, well my dad and I would help her in anyway to achieve those goals. One of those goals was to walk again. We had discussed it with the therapists who said "It is possible but unlikely". It wasn't that mom couldn't, it was the simple fact that her muscles had atrophied and perhaps she simply would not have the strength to accomplish such a feat. I am so overwhelmingly happy to say, that this afternoon I witnessed a miracle. My mother walked for the first time in almost a year.
Sometimes miracles do happen and sometimes to make a miracle, you have to help it along.
Sunday, 10 February 2013
The Dementia Diary: There's something about Mary
The Dementia Diary: There's something about Mary: There are so many changes that are very noticeable now that mom is more cognisant. I love that at times we can actually converse. I love t...
There's something about Mary
There are so many changes that are very noticeable now that mom is more cognisant. I love that at times we can actually converse. I love that at times she is determined to get better. I love that at times she wants to eat and enjoys it. I love that she will get bitchy. I love that when she's there she can write her name and do the Whizword in the paper. I love that she notices her appearance and just the other day asked me to bring tweezers and "Pluck these damn chin hairs, I look like an old hag with them," she said. There is so much of mom that is there that at times I can almost forget that she has dementia.
On the flip side there is a lot of confusion and disorientation, rather than being continual, as in Alzheimer's, it fluctuates and rapidly too. In a matter of minutes she can go from being there to then being catatonic. Mom also gets visual spatial disorientation. I can put just a small portion of food onto a side plate or saucer plate and she insists that it's pile of food big enough for a football player. Her smell gets disorientated too and last week she insists there was a skunk in hallway because she could smell it. She also suffers from misperceptions and sometime when I glance over and smile at her she perceives it as something threatening and gets defensive. You honestly don't know what your going into at any given moment of the day.
Delusions is another drawback. They can be nothing, like when she wanted to talk with the social worker and change her paper work because she insists she signed a paper saying that she has caused her dementia. They can also be something and there's something about Mary.
Earlier in week mom made a comment about dad's ironed shirt. Dad's shirt was not ironed and clearly wrinkly. Mom said, "I'm glad Mary is doing the ironing for you."
"Who's Mary?" asked dad.
"You know, Mary." she answered.
Dad laughed, "No I don't know".
The next day mom asked if Mary was doing the cooking at the house. Again we asked who Mary was and again we got no viable answer. Later that day, mom asked if the house was clean. I told it was and she said,"Well that Mary always kept a clean house". I asked again about Mary and again no viable answer. All I can gather is that in mom's mind, Mary is living at the house, like a house frau and does the cooking, cleaning, ironing and even hemming of jeans.
It's funny really but disturbing too because mom also thinks that Mary sleeps in the bed that she shared with my father. I have told mom repeatedly that there is no Mary. I have also told her repeatedly that no one but dad is sleeping in the bed. She just gives me a look of disgust and turns her head. I can also see the hurt that this causes my father. He knows it's the dementia. He knows that mom's mind is muddled but it still hurts that she would accuse him of essentially replacing her in every way and that she believes it too. Still, my father takes it in stride and tonight when I asked if he wanted me to cook up the ground turkey that's in the fridge, he joked and said "No, I'll get Mary to do it".
On the flip side there is a lot of confusion and disorientation, rather than being continual, as in Alzheimer's, it fluctuates and rapidly too. In a matter of minutes she can go from being there to then being catatonic. Mom also gets visual spatial disorientation. I can put just a small portion of food onto a side plate or saucer plate and she insists that it's pile of food big enough for a football player. Her smell gets disorientated too and last week she insists there was a skunk in hallway because she could smell it. She also suffers from misperceptions and sometime when I glance over and smile at her she perceives it as something threatening and gets defensive. You honestly don't know what your going into at any given moment of the day.
Delusions is another drawback. They can be nothing, like when she wanted to talk with the social worker and change her paper work because she insists she signed a paper saying that she has caused her dementia. They can also be something and there's something about Mary.
Earlier in week mom made a comment about dad's ironed shirt. Dad's shirt was not ironed and clearly wrinkly. Mom said, "I'm glad Mary is doing the ironing for you."
"Who's Mary?" asked dad.
"You know, Mary." she answered.
Dad laughed, "No I don't know".
The next day mom asked if Mary was doing the cooking at the house. Again we asked who Mary was and again we got no viable answer. Later that day, mom asked if the house was clean. I told it was and she said,"Well that Mary always kept a clean house". I asked again about Mary and again no viable answer. All I can gather is that in mom's mind, Mary is living at the house, like a house frau and does the cooking, cleaning, ironing and even hemming of jeans.
It's funny really but disturbing too because mom also thinks that Mary sleeps in the bed that she shared with my father. I have told mom repeatedly that there is no Mary. I have also told her repeatedly that no one but dad is sleeping in the bed. She just gives me a look of disgust and turns her head. I can also see the hurt that this causes my father. He knows it's the dementia. He knows that mom's mind is muddled but it still hurts that she would accuse him of essentially replacing her in every way and that she believes it too. Still, my father takes it in stride and tonight when I asked if he wanted me to cook up the ground turkey that's in the fridge, he joked and said "No, I'll get Mary to do it".
Monday, 4 February 2013
The Dementia Diary: Just a phase
The Dementia Diary: Just a phase: When my daughter was born I got many gifts and cards. One that sticks out wasn't from my mother, rather it was from my aunt Jackie. I stil...
Just a phase
When my daughter was born I got many gifts and cards. One that sticks out wasn't from my mother, rather it was from my aunt Jackie. I still have it as it became part of Dylan's memory box. The card is nothing special but what was written inside has stuck with me and I have written the same things in many cards to first time mothers. It says 'Congratulations, etc,etc and remember one simple thing, when it comes to children of all ages, everything is just a phase'. It is bar none the best child rearing advice I was ever given.
Dementia in a way is a return to childhood. Patients wear diapers, many need to be fed, many do nothing but eat and sleep and many try to communicate but their language and sounds aren't understood. This describes babies and dementia patients alike. Where a child grows, changes and develops more behaviours, dementia patients do the same but in reverse.
When I came home, mom pretty much was at a very infantile stage. Mom was completely dependent on others. The caregivers decided what she would eat and drink and when she would go to bed and when she would nap and if she needed to be changed. Once she was relieved from her drugged out stupor, she, well grew up. In the past few weeks we have been working with her to use a commode when needed, she started feeding herself again, she started speaking again and showing like and dislike for people and things and she is determined to walk. There only comparison that I have is that mom has entered the terrible two's. Believe me, it is 100 times more frustrating then when a child is in this phase.
Try to imagine a very articulate 2 1/2 year old. Children at that age are rigid and inflexible, not physically rather in behaviour. They don't adapt, they don't give in and the DO NOT wait. This describes my mother to a tee. If she wants a glass of juice, she wants it now. If wants to take a nap, she expects the staff to accommodate her now. If she wants dad to eat with her than I simply will not do, it has to be dad. At times, I am laughing but at times I have to walk away to the chapel. I go to the chapel not to pray but to compose myself and take a lot of deep breaths. She is at a phase where the entire universe revolves around her and if it doesn't she literally throws a tantrum.
A few days ago my mother made a face at a worker as she walked by. She also said loudly "I don't like her."
I responded with "Mom, if you can't say anything nice, don't say anything at all and stop making faces at her." I've said this before, many times, but to my children.
Today, before I arrived, mom had wanted to go back into bed and the nurses would not let her as it was nearly lunch. When I got there mom was in her room. She had undone the safety belt on her wheel chair and was contemplating getting herself into bed. I asked her what she was doing and she explained that they won't help her to bed, so she was going to do it herself. I explained that she isn't strong enough to do that and she exclaimed "Yes I am!!!"
I then scolded her, I actually scolded her. Thank God dad came in and I went to the chapel, again. Everyday is a series of I will, I won't, I want, I don't want, go away, stay here. It's tiring. In the chapel today is when I thought of my aunt and when I remembered the card. My aunt was a Godly woman and I think it was her way of helping me find what to do. As I sat in the quiet of the chapel I decided that we have to face this head on. We need to streamline the routines and start limiting mom's choices. Things have to be one or the other, not a plethora of anythings. We will keep the door on the room shut as it is to heavy for her open on her own and that way she can nap, at nap time. For lunch and dinner she will have the choice of what is brought or what is on the meal menu from the kitchen because dad and I can't keep running around from restaurant to stores to get her what she wants. We will have to include her in the meal choices, asking her what she wants for dinner and holding her to that decision and we have to avoid situations where she takes over. I discussed it with the care givers and with dad and we all agreed.
It saddens me greatly that decisions sound like something out of Dr. Spock, the childhood guru not the character. If feels strange and unnatural to be thinking like a parent for the care giving of my parent, but that's just the way it is. This is truly what it feels like when they say that the child becomes the mother. I really do hope that auntie Jackie was right and that it's just a phase.
On funny note, mom is like a child now when I get the camera out. She strikes a pose or refuses to have a picture taken.
Dementia in a way is a return to childhood. Patients wear diapers, many need to be fed, many do nothing but eat and sleep and many try to communicate but their language and sounds aren't understood. This describes babies and dementia patients alike. Where a child grows, changes and develops more behaviours, dementia patients do the same but in reverse.
When I came home, mom pretty much was at a very infantile stage. Mom was completely dependent on others. The caregivers decided what she would eat and drink and when she would go to bed and when she would nap and if she needed to be changed. Once she was relieved from her drugged out stupor, she, well grew up. In the past few weeks we have been working with her to use a commode when needed, she started feeding herself again, she started speaking again and showing like and dislike for people and things and she is determined to walk. There only comparison that I have is that mom has entered the terrible two's. Believe me, it is 100 times more frustrating then when a child is in this phase.
Try to imagine a very articulate 2 1/2 year old. Children at that age are rigid and inflexible, not physically rather in behaviour. They don't adapt, they don't give in and the DO NOT wait. This describes my mother to a tee. If she wants a glass of juice, she wants it now. If wants to take a nap, she expects the staff to accommodate her now. If she wants dad to eat with her than I simply will not do, it has to be dad. At times, I am laughing but at times I have to walk away to the chapel. I go to the chapel not to pray but to compose myself and take a lot of deep breaths. She is at a phase where the entire universe revolves around her and if it doesn't she literally throws a tantrum.
A few days ago my mother made a face at a worker as she walked by. She also said loudly "I don't like her."
I responded with "Mom, if you can't say anything nice, don't say anything at all and stop making faces at her." I've said this before, many times, but to my children.
Today, before I arrived, mom had wanted to go back into bed and the nurses would not let her as it was nearly lunch. When I got there mom was in her room. She had undone the safety belt on her wheel chair and was contemplating getting herself into bed. I asked her what she was doing and she explained that they won't help her to bed, so she was going to do it herself. I explained that she isn't strong enough to do that and she exclaimed "Yes I am!!!"
I then scolded her, I actually scolded her. Thank God dad came in and I went to the chapel, again. Everyday is a series of I will, I won't, I want, I don't want, go away, stay here. It's tiring. In the chapel today is when I thought of my aunt and when I remembered the card. My aunt was a Godly woman and I think it was her way of helping me find what to do. As I sat in the quiet of the chapel I decided that we have to face this head on. We need to streamline the routines and start limiting mom's choices. Things have to be one or the other, not a plethora of anythings. We will keep the door on the room shut as it is to heavy for her open on her own and that way she can nap, at nap time. For lunch and dinner she will have the choice of what is brought or what is on the meal menu from the kitchen because dad and I can't keep running around from restaurant to stores to get her what she wants. We will have to include her in the meal choices, asking her what she wants for dinner and holding her to that decision and we have to avoid situations where she takes over. I discussed it with the care givers and with dad and we all agreed.
It saddens me greatly that decisions sound like something out of Dr. Spock, the childhood guru not the character. If feels strange and unnatural to be thinking like a parent for the care giving of my parent, but that's just the way it is. This is truly what it feels like when they say that the child becomes the mother. I really do hope that auntie Jackie was right and that it's just a phase.
On funny note, mom is like a child now when I get the camera out. She strikes a pose or refuses to have a picture taken.
Wednesday, 30 January 2013
The Dementia Diary: Cabbage Rolls
The Dementia Diary: Cabbage Rolls: Last week mom was eating dinner. She complained that she wasn't feeling well and her colour was a little off. She wasn't hungry but with m...
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