Friday 22 February 2013
The Dementia Diary: Awakening
The Dementia Diary: Awakening: Someone recently compared mom and our circumstance to the movie 'Awakenings'. It's a true story about Dr. Oliver Sacks who discovered that ...
Awakening
Someone recently compared mom and our circumstance to the movie 'Awakenings'. It's a true story about Dr. Oliver Sacks who discovered that treating patients who suffered from Encephalitic Lethargia with L-Dopa, brought them out of the catatonia they were in. It starred Robin Williams and Robert De Niro and in the movie, patients in a facility who were literally zombies are given a new medication and they awake and enjoy life again. I can see the reverse comparison as mom was taken off some of her medications, including something similar to L-Dopa, and awoke from a zombie like stupor to come alive again. In the movie, the patients eventually experience some adverse reactions to medications and are taken off of them and unfortunately they return to the zombie like state. This will also happen to mom, over time but not because of medication, simply because that is the progression of dementia.
In the movie, while the patients are awake, they get to experience life again. That is what we are planning to do with mom. As she continues to gain her strength back we intend to get her out more and bring her home for short day visits. It doesn't really seem like much but going out for Chinese food next week will be exciting for all of us and we look forward to it and we look forward to other day trips out again. So, to get mom ready, my dad is walking with mom everyday and has hired a private physiotherapist to work with her twice a week.
With the awakening though also comes other concerns. Mom forgets that she doesn't walk that well and often tries to get herself out of bed. For that reason she now has a bed sensor in her bed and gymnastics bumpers around her bed so if she should fall, the injury would hopefully be minor and the workers would be able to respond quickly. She is still very unsteady, even with the walker and in the back of my mind is a fall and a broken hip. I have known so many elderly people over the years and it seems to me that none of them ever bounced back from a broken hip. Also in the back of my mind is that she will get stronger and more stable on her feet and one of these days might just get it in her head to bolt out the door. The facility that mom is in uses sensors for residents that tend to wander. As mom hasn't wandered because she couldn't, a sensor wasn't needed. I'm thinking this will be next on the list of things to get for mom.
Also with the awakening is the denial. Mom argues daily with anyone who will listen and insist that she doesn't have dementia. When she compares herself to some of the other dementia patients around her, she has a very convincing argument. She has forgotten the past years and the past 6 months and can't remember that only 5 minutes earlier she was arguing with the same person about the same thing. There seems no point in trying to convince her otherwise so I just listen over and over and over again and then go to the washroom or take her outside or get her a drink of juice or read a magazine with her. I try anything to change her thought pattern because there is no reasoning with her. I have tried to present to her, scientific-like evidence that she can't deny and I try to help her understand that dementia has over 200 different types and sub-types and everyone is different. It's pointless so I nod and listen and most of the time within hours she has become more dementia like and not very responsive to anything. I find myself, at times, and I hate to say this, enjoying the downward fluctuation because there is no argument, no aggression, no anger and it is really almost peaceful.
I wish, I truly wish that we could do what mom wants. She wants to go home and live and home. On some days I think we can and I plan in my head the ways in which we could manage. I get happy and determined and I look up the cost of equipment and private nurses and I haven't done this just once either. But then I have too have to remember the past years and months and remind myself that with Lewy Body dementia the fluctuations will eventually be lesser in degree and the physical symptoms will gradually return and worsen and she will return to her catatonic state of being. So I fluctuate and have to bring myself back down to reality at least a couple times a week. It's wishful thinking, I know, but in those moments I day dream of things we could do again and places we could go again. Then in my awakening I am reminded that they are just dreams and I look over to my mom and in her sun downing moments I watch her stare at the wall, not even aware that I am there.
In the movie, while the patients are awake, they get to experience life again. That is what we are planning to do with mom. As she continues to gain her strength back we intend to get her out more and bring her home for short day visits. It doesn't really seem like much but going out for Chinese food next week will be exciting for all of us and we look forward to it and we look forward to other day trips out again. So, to get mom ready, my dad is walking with mom everyday and has hired a private physiotherapist to work with her twice a week.
With the awakening though also comes other concerns. Mom forgets that she doesn't walk that well and often tries to get herself out of bed. For that reason she now has a bed sensor in her bed and gymnastics bumpers around her bed so if she should fall, the injury would hopefully be minor and the workers would be able to respond quickly. She is still very unsteady, even with the walker and in the back of my mind is a fall and a broken hip. I have known so many elderly people over the years and it seems to me that none of them ever bounced back from a broken hip. Also in the back of my mind is that she will get stronger and more stable on her feet and one of these days might just get it in her head to bolt out the door. The facility that mom is in uses sensors for residents that tend to wander. As mom hasn't wandered because she couldn't, a sensor wasn't needed. I'm thinking this will be next on the list of things to get for mom.
Also with the awakening is the denial. Mom argues daily with anyone who will listen and insist that she doesn't have dementia. When she compares herself to some of the other dementia patients around her, she has a very convincing argument. She has forgotten the past years and the past 6 months and can't remember that only 5 minutes earlier she was arguing with the same person about the same thing. There seems no point in trying to convince her otherwise so I just listen over and over and over again and then go to the washroom or take her outside or get her a drink of juice or read a magazine with her. I try anything to change her thought pattern because there is no reasoning with her. I have tried to present to her, scientific-like evidence that she can't deny and I try to help her understand that dementia has over 200 different types and sub-types and everyone is different. It's pointless so I nod and listen and most of the time within hours she has become more dementia like and not very responsive to anything. I find myself, at times, and I hate to say this, enjoying the downward fluctuation because there is no argument, no aggression, no anger and it is really almost peaceful.
I wish, I truly wish that we could do what mom wants. She wants to go home and live and home. On some days I think we can and I plan in my head the ways in which we could manage. I get happy and determined and I look up the cost of equipment and private nurses and I haven't done this just once either. But then I have too have to remember the past years and months and remind myself that with Lewy Body dementia the fluctuations will eventually be lesser in degree and the physical symptoms will gradually return and worsen and she will return to her catatonic state of being. So I fluctuate and have to bring myself back down to reality at least a couple times a week. It's wishful thinking, I know, but in those moments I day dream of things we could do again and places we could go again. Then in my awakening I am reminded that they are just dreams and I look over to my mom and in her sun downing moments I watch her stare at the wall, not even aware that I am there.
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.
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