Saturday, September 30, 2000
Comparing Experiences: Review on PBS End of Life Show - To MFS
About the time you sent your email, Mom and I were settling down to watch the series on dying. It wasn't only about hospice care although that was its foundation. There were four episodes of 1.5 hours each. There were also half-hour segments of discussions of related issues after each show. MPF didn't tape those and I'm sorry she didn't. One of them was a discussion about the plight of the caregiver that I would have loved to have seen.
MPF just finished a stint as her brother's primary caregiver just before and up to his death. She didn't do it very long. Because she had to travel between Prescott and northern California to do it she was pretty strung out about it. However, she ran into the same problem a lot of caregivers for the elderly and/or terminal do: Neither her older brother nor sister was interested in doing anything for their youngest brother. They felt as though MPF was "taking care of the situation", while she felt she was only able to provide barely adequate care and support. Her brother, by the way, never accepted that he was dying. That is one aspect of terminal illness that the program didn't cover. Too bad. I'm sure that very many, many people do not "...go gently into that good night."
I was impressed. Mom's mind wandered after the first hour. She read and I watched. Although there were a few funerals shown, there were no dead bodies nor did the camera record anyone's death. I learned a lot about dying, palliative care and hospice care. One of the points upon which the show was particularly cogent was that every death is an individual experience, yet in the U.S., at least in the overwhelmingly White Northern European part of the U.S., we pay attention to the "individual" aspect of death and ignore the community aspect of it. This often hampers our efforts as families and communities to allow death to be what the program calls "the most natural part of life". The uniqueness of everyone's death was emphasized by following a variety of people from the point at which they began dealing with a terminal diagnosis to the time when they experienced death [although, I repeat, no one died on screen and no final moments, even when they lasted a day or more (in one case the final moments lasted a little over a week), were taped]. The final moments and deaths were simply discussed by the survivors.
The program thoroughly, intelligently and sensitively covered many aspects of dying including the importance of adequate and appropriate pain management and refusal of treatment (both of which we here in the U.S. are afraid); the financial consequences of dying on the terminal person, the caregivers and the community; the fledgling movement in the U.S. toward palliative and hospice care; the effect on families of either attending to or ignoring a dying relative; the roadblocks our government and our culture put in the way of engineering a "good death"; and the difference between outright euthanasia and providing palliative care that hastens dying. On this issue the program did not flinch from the highly questionable and very debatable differences.
Some curious and interesting points:
One part of the program that applied to me was the discussion of family involvement. Apparently, it is not at all uncommon within the Northern European culture to which most of us U.S. whites belong (but not common among many other sub-cultures within the U.S., such as Hispanic, Southern European, etc.) for a caregiver who is providing for an elderly relative to be praised and ignored by relatives. Almost all caregivers experience a high level of frustration over this and typically rationalize this situation in much the way I do in order to carry on: Everyone else has their own caregiving issues to deal with, what's so special about "mine"; "our family" is just lucky that someone ("me") is in a position (however precarious that position) to be there for the person; there's no difference between "my parents" sacrificing for "me" when "I" was growing up and "me" sacrificing for "my parents" now (although this is partly true, there are many distinct differences between the two types of caregiving, community involvement in the care giving and their effects on the caregiver's life), etc. (which stands for, "I can't remember the other issues, right now"); "my" life is the life that is best able to withstand the sacrifices or, my particular take which is, "What sacrifice?".
One thing I remember reading from that book I got from Web of Care [now defunct] that really surprised me is that my situation (single children changing their lives in midstream, including leaving a job and a community, to be with the care recipient) is not only not unusual but is typical within the White Northern European U.S. culture of which you and I are a part. This is what happens in the majority of cases where an older family member needs a caregiver. I was blown away by this. The media would have us believe that most family caregiving for the elderly takes place in standard families (Mom, Dad, kids) where one or both of the parents works. When elder care does occur in these situations, across the board one of the adult caregivers sacrifices their paying job. Most elder care within U.S. families of White Northern European descent, though, is done by family members like me, even in families where there isn't an income to support both people (unlike my situation). I had no idea how many people like me there are! Weird, huh! Now that I think about it, it makes sense. Caregiving for one's children and one's parent or parents is certainly mutually exclusive in families like ours, and close to impossible without outside help or the jettisoning of someone's job, which is very difficult to afford and/or expect here in the U.S. It is also typical for caregivers and care recipients to be reluctant to utilize nursing homes (which I totally understand, and which the program believes is a good, if sometimes impossible, stance) and will go to the ends of the earth to keep that from happening.
One item you mentioned in your letter is especially pertinent to this. I am grateful that you brought MCS's own journey to my attention. Although she is not terminal her journey included a visit with her own mortality, not an imagined one (i.e., what if I do this and it kills me). She certainly hasn't finished that journey of discovery, all the changes it has ushered in for her and the affect it has on her relationship with her extended family. Many times, as the program expressed in many ways, to achieve a compassionate stance requires that you climb the boulders of resistance and resentment in order to leave them behind. If you don't, as the caregiver or the observer you shortchange your ability to be totally 'there' for whomever needs you because you are still hiding something. This is not new information to me. Why do you think I insist on wallowing in my little discouragements, depressions and frustrations for awhile? I have found that the easiest way to overcome them is to acknowledge them. This way I know their exact dimensions and it makes the climb a lot easier and allows me to find the fastest, easiest path over the boulders. Sometimes, I think, the reason figurative climbing is so difficult is because we ignore so much of what we are feeling that we climb the wrong path so we end up at the wrong destination. Comparing this to literal climbing, the mountain/rock climber who doesn't survey the terrain ahead of time is a fool and can expect to end up in a fool's paradise (which sometimes translates into "heaven"). All avid climbers know this. In addition, if you do all your homework on approach and you still end up at the bottom of the canyon, the paradise which you enter isn't where the fools are, it's where the courageous are. That's why traditionally, I think, we humans tend to mourn the deaths of fools ("If only...") and celebrate the deaths of of the courageous ("They died the way they wanted to die...").
So, enough, I say. See, you didn't need to watch the program. I watched it for you!
MPF just finished a stint as her brother's primary caregiver just before and up to his death. She didn't do it very long. Because she had to travel between Prescott and northern California to do it she was pretty strung out about it. However, she ran into the same problem a lot of caregivers for the elderly and/or terminal do: Neither her older brother nor sister was interested in doing anything for their youngest brother. They felt as though MPF was "taking care of the situation", while she felt she was only able to provide barely adequate care and support. Her brother, by the way, never accepted that he was dying. That is one aspect of terminal illness that the program didn't cover. Too bad. I'm sure that very many, many people do not "...go gently into that good night."
I was impressed. Mom's mind wandered after the first hour. She read and I watched. Although there were a few funerals shown, there were no dead bodies nor did the camera record anyone's death. I learned a lot about dying, palliative care and hospice care. One of the points upon which the show was particularly cogent was that every death is an individual experience, yet in the U.S., at least in the overwhelmingly White Northern European part of the U.S., we pay attention to the "individual" aspect of death and ignore the community aspect of it. This often hampers our efforts as families and communities to allow death to be what the program calls "the most natural part of life". The uniqueness of everyone's death was emphasized by following a variety of people from the point at which they began dealing with a terminal diagnosis to the time when they experienced death [although, I repeat, no one died on screen and no final moments, even when they lasted a day or more (in one case the final moments lasted a little over a week), were taped]. The final moments and deaths were simply discussed by the survivors.
The program thoroughly, intelligently and sensitively covered many aspects of dying including the importance of adequate and appropriate pain management and refusal of treatment (both of which we here in the U.S. are afraid); the financial consequences of dying on the terminal person, the caregivers and the community; the fledgling movement in the U.S. toward palliative and hospice care; the effect on families of either attending to or ignoring a dying relative; the roadblocks our government and our culture put in the way of engineering a "good death"; and the difference between outright euthanasia and providing palliative care that hastens dying. On this issue the program did not flinch from the highly questionable and very debatable differences.
Some curious and interesting points:
- One of the caregivers ended up losing her job, her home, her car and most of her worldly possessions while taking care of her mother (who lived in an apartment). When her mother died she also ended up losing her community because she was not able to return to her profession within her home community and ended up having to move across the country to live with her daughter.
- There were points throughout every episode where a politically correct concern for the caregiver ("Who's taking care of the caregiver?") was expressed but it was not discussed and, from what I saw, rarely got beyond that tag question. For the most part, caregivers were cautioned to take care of themselves and that was it. This raised an issue in my mind as the program progressed. What about parents? Are they not caregivers? Why don't we also express concern about caring for caregivers in all circumstances? Because, I guess, we here in the U.S. of Northern European descent believe that when people become parents that is their 'problem'. I think we also believe this about tending to dying loved ones. In this country both birth and death are considered personal experiences, not community experiences. We believe that everyone gets what they deserve because of the choices they've made. These circumstances also manage to emotionally and financially bankrupt not a small percentage of caregivers. Jesus! How isolated we are in this country! And, how much damage we inflict on each other because of it!
One part of the program that applied to me was the discussion of family involvement. Apparently, it is not at all uncommon within the Northern European culture to which most of us U.S. whites belong (but not common among many other sub-cultures within the U.S., such as Hispanic, Southern European, etc.) for a caregiver who is providing for an elderly relative to be praised and ignored by relatives. Almost all caregivers experience a high level of frustration over this and typically rationalize this situation in much the way I do in order to carry on: Everyone else has their own caregiving issues to deal with, what's so special about "mine"; "our family" is just lucky that someone ("me") is in a position (however precarious that position) to be there for the person; there's no difference between "my parents" sacrificing for "me" when "I" was growing up and "me" sacrificing for "my parents" now (although this is partly true, there are many distinct differences between the two types of caregiving, community involvement in the care giving and their effects on the caregiver's life), etc. (which stands for, "I can't remember the other issues, right now"); "my" life is the life that is best able to withstand the sacrifices or, my particular take which is, "What sacrifice?".
One thing I remember reading from that book I got from Web of Care [now defunct] that really surprised me is that my situation (single children changing their lives in midstream, including leaving a job and a community, to be with the care recipient) is not only not unusual but is typical within the White Northern European U.S. culture of which you and I are a part. This is what happens in the majority of cases where an older family member needs a caregiver. I was blown away by this. The media would have us believe that most family caregiving for the elderly takes place in standard families (Mom, Dad, kids) where one or both of the parents works. When elder care does occur in these situations, across the board one of the adult caregivers sacrifices their paying job. Most elder care within U.S. families of White Northern European descent, though, is done by family members like me, even in families where there isn't an income to support both people (unlike my situation). I had no idea how many people like me there are! Weird, huh! Now that I think about it, it makes sense. Caregiving for one's children and one's parent or parents is certainly mutually exclusive in families like ours, and close to impossible without outside help or the jettisoning of someone's job, which is very difficult to afford and/or expect here in the U.S. It is also typical for caregivers and care recipients to be reluctant to utilize nursing homes (which I totally understand, and which the program believes is a good, if sometimes impossible, stance) and will go to the ends of the earth to keep that from happening.
One item you mentioned in your letter is especially pertinent to this. I am grateful that you brought MCS's own journey to my attention. Although she is not terminal her journey included a visit with her own mortality, not an imagined one (i.e., what if I do this and it kills me). She certainly hasn't finished that journey of discovery, all the changes it has ushered in for her and the affect it has on her relationship with her extended family. Many times, as the program expressed in many ways, to achieve a compassionate stance requires that you climb the boulders of resistance and resentment in order to leave them behind. If you don't, as the caregiver or the observer you shortchange your ability to be totally 'there' for whomever needs you because you are still hiding something. This is not new information to me. Why do you think I insist on wallowing in my little discouragements, depressions and frustrations for awhile? I have found that the easiest way to overcome them is to acknowledge them. This way I know their exact dimensions and it makes the climb a lot easier and allows me to find the fastest, easiest path over the boulders. Sometimes, I think, the reason figurative climbing is so difficult is because we ignore so much of what we are feeling that we climb the wrong path so we end up at the wrong destination. Comparing this to literal climbing, the mountain/rock climber who doesn't survey the terrain ahead of time is a fool and can expect to end up in a fool's paradise (which sometimes translates into "heaven"). All avid climbers know this. In addition, if you do all your homework on approach and you still end up at the bottom of the canyon, the paradise which you enter isn't where the fools are, it's where the courageous are. That's why traditionally, I think, we humans tend to mourn the deaths of fools ("If only...") and celebrate the deaths of of the courageous ("They died the way they wanted to die...").
So, enough, I say. See, you didn't need to watch the program. I watched it for you!
