Friday, February 13, 2009
Thoughts on a recent ISP meeting
Just a short note. I just attended Agnes' annual ISP meeting. I am so happy to see the care, attention and TIME taken by her circles of supports - very thoughtful and person-centered. However, I was also struck by the fact that the ISP form asks about human rights, whether self-determination is indeed happening etc. - but no recognition of the fact that asking a person with ID "are your human rights being respected in your group home?" in front of group home staff is not the best way to get a response that represents reality given acquiescence bias, etc. Of course, the answer was "Yes." And that was that.
Tuesday, January 20, 2009
The sparkle factor: Precursors to accepting out-of-home care for Agnes
I suppose I am really going down memory lane these days. I am thinking a lot about the decisions that my parents made to keep Agnes at home - despite the significant challenges that went along with that prospect. I am remembering when my parents, exhausted and facing my mother's cancer diagnosis, finally conceded to the ways the world was moving, and put all three grandparents in the nursing home at the same time - all down the street. I think that this process led to their "being ok" about finding a residential placement for Agnes - who ended up thriving in it, eventually. In remembering all of this, I also remembered the genesis of what I think of as "the sparkle factor" in Agnes - that unknown bit of magic that makes her so congenial in her best moments...here is some beginning writing I have been working on about all of this:
Sitting next to me on the bed, Mom took my hand and showed me the lump in her breast. I dropped my head, blushing. "I don't want to feel that, don't do that." She had told me there was a lump, she had told me she had to have surgery to remove her breast, and chemotherapy after that. Had no idea what that was, didn't ask for clarification. I had told her I didn't believe her - screamed it across the room, actually. It was one of the few times she didn't respond in kind. I felt the room swell - then contract with emotion that pulled me next to her on Granny's cream-colored chenille bedspreads in the upstairs room with the 1940s cabbage rose wallpaper. This moment was quiet, but it was an oasis in an otherwise chaotic warp. My parents were commuting between our grandparents' homes to deal with the various challenges of dementia, senility and ill health. I took it as my job to top it off as the overly-rebellious, drug-involved, sullen teenager while Agnes increasingly engaged in violent, daily self-abusive tantrums which had been leaving bloody smears, splintered furniture and sad pits in our stomachs for years now. Now, sitting on the bed with Mom, I just slumped against her, and then wrapped my arms around her to hid the fat tears slugging down my cheeks.
I learned that chemotherapy makes you sick - even if you are not the one taking the injections. Divvying up my acid tabs into little hallucinogenic bits for each day helped to take the reality out of it all, along with my daily constitutional, weed. As her treatments brutalized my mother’s body and spirit, her back bending more and more into a sad macaroni shape, my parents realized that they alone could not manage this new addition to their challenges without some sort of change. After several last-ditch and agonizing efforts to keep our family patriarchs and matriarchs at home in the face of what can only be described as familial chaos, all three elders moved to the nursing home down the street from our house. In spite of the toxic brew in her body, most days, my mother drove Agnes and I to visit “the grands” after her version of the daily constitutional, a walk through the fields nearby. Mummy would drive us down the street (1.7 miles, as she would always point out) to visit our three grandparents. This seemed to me to go on for years. I am not sure what the substance of the conversation was in the little red Honda, but Mummy was always cheery and keeping us going with one topic or another – especially if Agnes was in a dark look mood - something that was the constant precursor to a blood-curdling tantrum.
Somehow though, I don’t remember too many of those dark looks when we were on the way to the nursing home, or in the nursing home. The nursing home was a place where Agnes accepted in a strange and just ok well-you-are-another-person kind of way. Regardless of Mummy’s banter as we meandered down the hill with her haphazard driving style, we did seem to develop a tolerance for smells and odd behavior – perhaps acculturating a bit to the etiquette one must adopt in a nursing home. This goes along with the #1 rule of Yankee etiquette at all times, the stiff upper lip. I am sure that Mummy talked some about “bringing some measure of comfort” to our grandparents – and that it was important for people to feel loved and not left behind. Agnes truly shone in this effort – easily making friends with the elderly residents of the home, singing songs and engaging in the same conversations day after day. Agnes’ success and sparkle were the silver lining in the cloud of giving up on the ideal of self-determination in family care that my parents had been raised to champion at every possible turn. Even me, the sullen and usually pot-smoked-out teen lightened up a bit during those visits.
Sitting next to me on the bed, Mom took my hand and showed me the lump in her breast. I dropped my head, blushing. "I don't want to feel that, don't do that." She had told me there was a lump, she had told me she had to have surgery to remove her breast, and chemotherapy after that. Had no idea what that was, didn't ask for clarification. I had told her I didn't believe her - screamed it across the room, actually. It was one of the few times she didn't respond in kind. I felt the room swell - then contract with emotion that pulled me next to her on Granny's cream-colored chenille bedspreads in the upstairs room with the 1940s cabbage rose wallpaper. This moment was quiet, but it was an oasis in an otherwise chaotic warp. My parents were commuting between our grandparents' homes to deal with the various challenges of dementia, senility and ill health. I took it as my job to top it off as the overly-rebellious, drug-involved, sullen teenager while Agnes increasingly engaged in violent, daily self-abusive tantrums which had been leaving bloody smears, splintered furniture and sad pits in our stomachs for years now. Now, sitting on the bed with Mom, I just slumped against her, and then wrapped my arms around her to hid the fat tears slugging down my cheeks.
I learned that chemotherapy makes you sick - even if you are not the one taking the injections. Divvying up my acid tabs into little hallucinogenic bits for each day helped to take the reality out of it all, along with my daily constitutional, weed. As her treatments brutalized my mother’s body and spirit, her back bending more and more into a sad macaroni shape, my parents realized that they alone could not manage this new addition to their challenges without some sort of change. After several last-ditch and agonizing efforts to keep our family patriarchs and matriarchs at home in the face of what can only be described as familial chaos, all three elders moved to the nursing home down the street from our house. In spite of the toxic brew in her body, most days, my mother drove Agnes and I to visit “the grands” after her version of the daily constitutional, a walk through the fields nearby. Mummy would drive us down the street (1.7 miles, as she would always point out) to visit our three grandparents. This seemed to me to go on for years. I am not sure what the substance of the conversation was in the little red Honda, but Mummy was always cheery and keeping us going with one topic or another – especially if Agnes was in a dark look mood - something that was the constant precursor to a blood-curdling tantrum.
Somehow though, I don’t remember too many of those dark looks when we were on the way to the nursing home, or in the nursing home. The nursing home was a place where Agnes accepted in a strange and just ok well-you-are-another-person kind of way. Regardless of Mummy’s banter as we meandered down the hill with her haphazard driving style, we did seem to develop a tolerance for smells and odd behavior – perhaps acculturating a bit to the etiquette one must adopt in a nursing home. This goes along with the #1 rule of Yankee etiquette at all times, the stiff upper lip. I am sure that Mummy talked some about “bringing some measure of comfort” to our grandparents – and that it was important for people to feel loved and not left behind. Agnes truly shone in this effort – easily making friends with the elderly residents of the home, singing songs and engaging in the same conversations day after day. Agnes’ success and sparkle were the silver lining in the cloud of giving up on the ideal of self-determination in family care that my parents had been raised to champion at every possible turn. Even me, the sullen and usually pot-smoked-out teen lightened up a bit during those visits.
Sunday, January 18, 2009
Managing the dignity of risk: Pulling out grass
These days, Agnes and I are preparing for our father's death, inasmuch as one can do that. I have found myself reflecting back to our mother's death, looking for clues about how Agnes may react, how I should support her, etc. So this is a current musing on a past event - but one that has significance for me in my current work as Agnes' sibling-parent.
Agnes and I lost our mother twenty one years ago. She died from pneumonia, but as a complication of metasticised breast cancer. Agnes was there at the bedside with us. In talking with my father about this, he reflects "we didn't want to hide the process of death from her" and "we thought she needed to not be 'protected' from mom's death." These sentiments appear to me to fall directly in line with Robert Perske's ideas about the "dignity of risk." Perske says that "The real world is not always safe, secure, and predictable" and that "overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become.Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too." Although mostly applied to daily life (e.g. making friends, working in the community, taking public transportation, stuff like that), I think that there is a level of risk - perhaps emotional risk - involved in watching a person - especially a parent - die.
We did have supports in place. Our minister was with us, a good family friend who "got" Agnes (and was also a social worker) was also in the house with us. It was a terribly sad and physically difficult to watch scene that is emblazoned on my mind, for sure. I know it is for Agnes and Dad as well. However, what I want to focus on was how Agnes dealt with the death - immediately after the death. I sort of blacked out, but was somewhat conscious that our minister, and close family friend, was out in the front yard with Agnes, who was screaming a lot. I am sure a psychologist would say that Agnes has "low frustration tolerance" and this moment was on the extreme end of that spectrum - complicated by grief, to be sure. I remember wandering out of the house, not knowing what to do with myself - Mom was dead - Dad was crying in the house and Agnes was screaming in the front yard with Nan. Agnes was screaming and crying and pulling grass (and an errant violet or two) out of surprising large swatches of our lawn. I later found out Agnes' therapist had been preparing her for this moment - and had encouraged her to pull grass out of the lawn instead of engaging in her more common, daily self-injurious behaviors (usually banging her nose until it bled, skin picking, hair pulling, head banging, etc). At the time, I thought that grass pulling seemed like a way better idea than the usual alternatives in Agnes' repetoire of coping. I suppose that was a somewhat teenaged construction of what was going on - a sarcasm even - that made sense in the context of what I grew up with. I do remember that cars were slowing down on the road in front of our house and I imagined that the police would be there soon (new neighbors often responded to neighbors calls about bizarre behavior or screaming in our house, until they began to understand more about Agnes' ways). I think I high-tailed it out of there - running to a local field to get away - I'd had enough embarrassing moments with the cops around my sister in my time. The whole scene went on - and I didn't think about the grass pulling again for years. Agnes, Dad and I got into grief counseling, and we muddled through the tough times, and moved ahead with our lives.
Flash forward fifteen years or so to a disability policy class in graduate school. The topic of the day was "the dignity of risk" and I was really wrestling with this new-for-me concept - both as a sister and as a student of social welfare policy. I felt that the wholehearted embrace of the idea was not realistic and I was having a visceral response. I wondered how many of the students in the room had grown up with a sibling like Agnes - or knew someone close to them with similar challenges in life. I remember feeling angry at people for being so doctrinnaire. In my own way, I tried to participate and talk about the ways that people like Agnes can engage in the dignity of risk, and out of nowhere, came the story I tell above, in abbreviated form. I explained that I thought it was good that Agnes had experienced Mom's death - so that it wasn't some hidden mystery for her. Nodding heads in the class. I explained about her "low frustration tolerance" and how it usually led to self-injurious behaviors. Nodding heads, looking a little shocked now (in my mind I imagine them thinking - that's not the angelic special olympics vision I had of intellectual disabilities). I then explained about the grass pulling as a strategy. What happened next surprised me. People in the class said things along the lines of "couldn't you have gotten her to do something that was more normal? You know, normalizing her response to grief?" At the time, I was already feeling angry - which was probably about my own "stuff" and nothing to do with the class...but I just said that I thought it was better than seeing chunks of hair and blood flying all over the place. I secretly revelled a bit in the schock value of all that. It was a conversation stopper. Problem is, that is where the conversation should have started.
In any case, here we are now, in 2009. Agnes is refusing to see Dad due to being upset about his illness. I am wondering what to do. Agnes' self-injurious behaviors are largely controlled now, thanks to Risperdal, though that medicine has some negative side effects. I am not sure whether I will encourage her to pull out grass or not when Dad eventually passes away. Maybe our approach of talking about it, planning for it (she has a whole protocol in place for me, what I should do when Dad dies, and in what order), will negate the need for grass-pulling. Only time will tell. I need to look into what the literature says about bereavement processing for people with intellectual disabilities...in my spare time! I am guessing this is a topic that many of us need to think about vis-a-vis supporting our siblings - each with their own challenges, stregnths and family realities? What are your thoughts on all of this, other siblings out there?
Agnes and I lost our mother twenty one years ago. She died from pneumonia, but as a complication of metasticised breast cancer. Agnes was there at the bedside with us. In talking with my father about this, he reflects "we didn't want to hide the process of death from her" and "we thought she needed to not be 'protected' from mom's death." These sentiments appear to me to fall directly in line with Robert Perske's ideas about the "dignity of risk." Perske says that "The real world is not always safe, secure, and predictable" and that "overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become.Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too." Although mostly applied to daily life (e.g. making friends, working in the community, taking public transportation, stuff like that), I think that there is a level of risk - perhaps emotional risk - involved in watching a person - especially a parent - die.
We did have supports in place. Our minister was with us, a good family friend who "got" Agnes (and was also a social worker) was also in the house with us. It was a terribly sad and physically difficult to watch scene that is emblazoned on my mind, for sure. I know it is for Agnes and Dad as well. However, what I want to focus on was how Agnes dealt with the death - immediately after the death. I sort of blacked out, but was somewhat conscious that our minister, and close family friend, was out in the front yard with Agnes, who was screaming a lot. I am sure a psychologist would say that Agnes has "low frustration tolerance" and this moment was on the extreme end of that spectrum - complicated by grief, to be sure. I remember wandering out of the house, not knowing what to do with myself - Mom was dead - Dad was crying in the house and Agnes was screaming in the front yard with Nan. Agnes was screaming and crying and pulling grass (and an errant violet or two) out of surprising large swatches of our lawn. I later found out Agnes' therapist had been preparing her for this moment - and had encouraged her to pull grass out of the lawn instead of engaging in her more common, daily self-injurious behaviors (usually banging her nose until it bled, skin picking, hair pulling, head banging, etc). At the time, I thought that grass pulling seemed like a way better idea than the usual alternatives in Agnes' repetoire of coping. I suppose that was a somewhat teenaged construction of what was going on - a sarcasm even - that made sense in the context of what I grew up with. I do remember that cars were slowing down on the road in front of our house and I imagined that the police would be there soon (new neighbors often responded to neighbors calls about bizarre behavior or screaming in our house, until they began to understand more about Agnes' ways). I think I high-tailed it out of there - running to a local field to get away - I'd had enough embarrassing moments with the cops around my sister in my time. The whole scene went on - and I didn't think about the grass pulling again for years. Agnes, Dad and I got into grief counseling, and we muddled through the tough times, and moved ahead with our lives.
Flash forward fifteen years or so to a disability policy class in graduate school. The topic of the day was "the dignity of risk" and I was really wrestling with this new-for-me concept - both as a sister and as a student of social welfare policy. I felt that the wholehearted embrace of the idea was not realistic and I was having a visceral response. I wondered how many of the students in the room had grown up with a sibling like Agnes - or knew someone close to them with similar challenges in life. I remember feeling angry at people for being so doctrinnaire. In my own way, I tried to participate and talk about the ways that people like Agnes can engage in the dignity of risk, and out of nowhere, came the story I tell above, in abbreviated form. I explained that I thought it was good that Agnes had experienced Mom's death - so that it wasn't some hidden mystery for her. Nodding heads in the class. I explained about her "low frustration tolerance" and how it usually led to self-injurious behaviors. Nodding heads, looking a little shocked now (in my mind I imagine them thinking - that's not the angelic special olympics vision I had of intellectual disabilities). I then explained about the grass pulling as a strategy. What happened next surprised me. People in the class said things along the lines of "couldn't you have gotten her to do something that was more normal? You know, normalizing her response to grief?" At the time, I was already feeling angry - which was probably about my own "stuff" and nothing to do with the class...but I just said that I thought it was better than seeing chunks of hair and blood flying all over the place. I secretly revelled a bit in the schock value of all that. It was a conversation stopper. Problem is, that is where the conversation should have started.
In any case, here we are now, in 2009. Agnes is refusing to see Dad due to being upset about his illness. I am wondering what to do. Agnes' self-injurious behaviors are largely controlled now, thanks to Risperdal, though that medicine has some negative side effects. I am not sure whether I will encourage her to pull out grass or not when Dad eventually passes away. Maybe our approach of talking about it, planning for it (she has a whole protocol in place for me, what I should do when Dad dies, and in what order), will negate the need for grass-pulling. Only time will tell. I need to look into what the literature says about bereavement processing for people with intellectual disabilities...in my spare time! I am guessing this is a topic that many of us need to think about vis-a-vis supporting our siblings - each with their own challenges, stregnths and family realities? What are your thoughts on all of this, other siblings out there?
Tuesday, January 13, 2009
The latest, my sibling is refusing to see my parents...
Well, my thought for this blog was to collect our stories, our experiences as siblings of people with ID/DD. Not all of our stories are powerful, unique, phenomenal - unusual - most of them, I would imagine, center around day-to-day thoughts, challenges, dilemnas, etc. So, given that, here is my current dilemna.
In my family, we are in the transition phase re: care for my sibling. That makes it sound as though there is something formal phase-wise! I wish there were more research about this process, and I am beginning to think that I should conduct it, but am too close to it yet. My sib, who I will call Agnes here, now comes to holidays, visits for dinner, or comes to stay for the weekend at the home I share with my partner. I am blessed with a very kind and tolerant partner who both verbalizes how overwhelmed he feels sometimes during a visit from Agnes, but never lets her see it and always does his best to make her feel comfortable and happy. Agnes started to come to our house beause our father is very sick - and increasingly out of it cognitively. Seeing this has upset Agnes very much - and she now refuses to visit my parents house at all. For example, we had Christmas Eve at their house, and the plan was to go to their home again on Christmas Day, which she vehemently did not want to do. I do support self-determination - but she is also not safe in the home on her own, and we very much wanted to go to have Christmas with our family. We cut some deals about the future ways to handle it, and the three of us set off. It went ok, but now she refuses any contact.
Agnes finally told me that her program manager at her group home helped her to get a book about Parkinson's Disease - but that she returned it because it upset her too much. She says she does not want to see Dad getting weaker and suffering. I recognize that he has been her primary parent for the 20 years since my mother died (we have a stepmother who has worked hard to make us a family unit, we love her, but she is not the greatest with Agnes - can't accept her funny looks, can't accept her weight gain from the Risperdal, can't accept that she can't learn). Of course, Agnes is starting to mourn the loss of my Dad. The problem is that I am starting to feel cut off from this special time with my Dad at the end of his life, because I am spending time with Agnes...I suppose this would be similar if I had children of my own...the need to put your own nuclear family first, perhaps? Maybe this will pass with time. I think it is the right thing to do to not hide what is happening to Dad from Agnes - but to help her work her way through the process. In some ways, I feel that she has too easily transitioned to me being the primary caretaker - sort of an all or nothing situation (e.g. it's either Dad, or it is Liz). I wonder whether any of you can relate?
In my family, we are in the transition phase re: care for my sibling. That makes it sound as though there is something formal phase-wise! I wish there were more research about this process, and I am beginning to think that I should conduct it, but am too close to it yet. My sib, who I will call Agnes here, now comes to holidays, visits for dinner, or comes to stay for the weekend at the home I share with my partner. I am blessed with a very kind and tolerant partner who both verbalizes how overwhelmed he feels sometimes during a visit from Agnes, but never lets her see it and always does his best to make her feel comfortable and happy. Agnes started to come to our house beause our father is very sick - and increasingly out of it cognitively. Seeing this has upset Agnes very much - and she now refuses to visit my parents house at all. For example, we had Christmas Eve at their house, and the plan was to go to their home again on Christmas Day, which she vehemently did not want to do. I do support self-determination - but she is also not safe in the home on her own, and we very much wanted to go to have Christmas with our family. We cut some deals about the future ways to handle it, and the three of us set off. It went ok, but now she refuses any contact.
Agnes finally told me that her program manager at her group home helped her to get a book about Parkinson's Disease - but that she returned it because it upset her too much. She says she does not want to see Dad getting weaker and suffering. I recognize that he has been her primary parent for the 20 years since my mother died (we have a stepmother who has worked hard to make us a family unit, we love her, but she is not the greatest with Agnes - can't accept her funny looks, can't accept her weight gain from the Risperdal, can't accept that she can't learn). Of course, Agnes is starting to mourn the loss of my Dad. The problem is that I am starting to feel cut off from this special time with my Dad at the end of his life, because I am spending time with Agnes...I suppose this would be similar if I had children of my own...the need to put your own nuclear family first, perhaps? Maybe this will pass with time. I think it is the right thing to do to not hide what is happening to Dad from Agnes - but to help her work her way through the process. In some ways, I feel that she has too easily transitioned to me being the primary caretaker - sort of an all or nothing situation (e.g. it's either Dad, or it is Liz). I wonder whether any of you can relate?
Wednesday, January 7, 2009
An awakening experience
Recently, a dear friend invited me to speak to her class on social work practice with people who have intellectual disabilities. My friend knows that I am a sibling, that I have written on the topic of being a sibling under my pseudonym and that my own research relates to people with "ID." (See, for example: Liz Cameron PhD. 2008: The Maine Effect, or How I Finally Embraced the Social Model of Disability. Intellectual and Developmental Disabilities: Vol. 46, No. 1, pp. 54–57.)
Having seen my essay, my friend assigned it to her students - and their interest ended up with me in the class speaking as a sibling. I went in consciously knowing that I wanted to be a sibling in that classroom, not my normal "professor" self. I was glad that I started out my talk on that note. Talking to this group of students was a very unexpected and profoundly moving experience for me - and I got in touch with the fact that I have deep and unresolved feelings about being neither a sibling or a parent.
During the class session, a student revealed that she too was in a not sibling-not parent situation. I resolved to get back in touch with her after finding out about support groups for the adult siblings of people with ID. Unfortunately, there were no such groups in our state. Meanwhile, a student of mine wrote a research proposal related to the long-term well-being of adult siblings of people with mental retardation - highlighting both emotional and financial challenges. Clearly in the path of a perfect storm of my very own, I decided to start something - anything. So, here I am, I have decided to start this blog with the goal of creating a place where we can reflect, vent cherish, comment and just generally support one another. I guess it is the budding qualitative researcher in me, but I feel it will be important to collect the unscripted voices of people in our situation.
Please join in! (To be added as a blog author, contact Liz Cameron at ecmaclean@gmail.com)
Having seen my essay, my friend assigned it to her students - and their interest ended up with me in the class speaking as a sibling. I went in consciously knowing that I wanted to be a sibling in that classroom, not my normal "professor" self. I was glad that I started out my talk on that note. Talking to this group of students was a very unexpected and profoundly moving experience for me - and I got in touch with the fact that I have deep and unresolved feelings about being neither a sibling or a parent.
During the class session, a student revealed that she too was in a not sibling-not parent situation. I resolved to get back in touch with her after finding out about support groups for the adult siblings of people with ID. Unfortunately, there were no such groups in our state. Meanwhile, a student of mine wrote a research proposal related to the long-term well-being of adult siblings of people with mental retardation - highlighting both emotional and financial challenges. Clearly in the path of a perfect storm of my very own, I decided to start something - anything. So, here I am, I have decided to start this blog with the goal of creating a place where we can reflect, vent cherish, comment and just generally support one another. I guess it is the budding qualitative researcher in me, but I feel it will be important to collect the unscripted voices of people in our situation.
Please join in! (To be added as a blog author, contact Liz Cameron at ecmaclean@gmail.com)
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