When my grandfather was dying, I was so afraid to visit - I thought it would be sad and painful. I finally visited in what happened to be his last instance of lucidity before passing a week later.
I was right, it was sad and painful. But I only regret not visiting sooner and spending more time with him. Trying to avoid the pain of death and dying is self-defeating. My loved ones will reach a point of dying, and this will be painful no matter how it happens. Meanwhile I will either have meaningful loving connection (which by necessity includes caring for such a person) before they die, or I’ll wish I did.
Today, my phone rang at 7:30 a.m. and my heart started to race. Immediately, I thought of my parents and parents-in-law and what could have happened to them. A stroke? Died in their sleep? It was just the ballet teacher calling to postpone the lesson, and after my heart had slowed to its normal pace again I realized that I am constantly having on my mind that my parents or in-laws could have a fall, or get sick, or die suddenly. They're in their mid-seventies and early eighties, some are not in good health.
Obviously, waiting for a call that spells disaster is a burden - but I don't think of my parents or in-laws in terms of a potential burden. They are people who raised me and who supported me and who loved me unconditionally for years, they are people who have invited me into their lives and made room for me there, and I want them to be well.
The next decade is going to show which sacrifices on my part this will entail. I know that caregivers' burnout is real and I know that as a society, we fail caregivers on a daily basis, but I hope that I will be a support to my parents and (to a lesser degree) my in-laws until their death.
You're right, we will have to talk more about the kind of support they might want and need - we've broached the subject, but obviously it's very hard and painful to consider this inevitable period in our shared lives.
Thank you, Leah. What I needed to read. My nine year old has level 2 autism and we've been struggling getting ABA care. But regardless of the burdens, I can't imagine a world in which disabled children are killed before they are born. Lord have mercy on us all.
Caring for my parents now, my mother with advanced dementia and my father in an increasingly similar way, is an honour even if heartbreaking and hard in a number of ways, emotional and practical (even though they are now together in residential care). But it is a privilege and a gift to love them and to have been loved by them. I came home to my family through the gift of adoption, and my mother loved and cared for me just as if I were born of her body. I feel this privilege to love them now, in their nineties - even though it’s been the steepest learning curve - so deeply. This is profound.
I have started having conversations with my parents about their plans for care towards the end of their lives, although it's quite far off in the future--in fact the catalyst for these conversations has been the issues with caring for my father's grandparents, and right now I have three living grandparents. My dad often talks about the necessity of preparing to have diminished capacity, and in planning to cede control and independence in some ways *before* it becomes completely necessary, because we've seen by example that it's all too common to lose judgment of such things at an advanced age. For example, I or one of my siblings will receive power of attorney over family finances before he turns 80.
I think often the issue with elder care is not that children don't want to put their lives on hold for their parents, but rather parents who are totally unwilling to reorganize their lives to receive such care, or perhaps do not realize that they need it. I've shared a story here before about having to call Adult Protective Services for an elderly neighbor who suddenly lost his independence and wouldn't agree to seek care--in the end he had to be involuntarily committed to a nursing home. He had no family and clearly nothing even resembling a plan for aging. In my own life, my grandfather has refused to cede control over things like finances even when it's obvious he has been scammed in various ways. Luckily he's now in a situation where that's less possible, but getting him there took a huge amount of willpower and caused a lot of pain for his children. I cannot emphasize enough the importance of planning for aging and setting these plans in motion *before* loss of mental capacity.
A family member has said casually they "hope to not live THAT long" (because that would start the beginning of an undignified end, I assume?) The same family member has made it clear their only child should not be burdened with their care & they will handle it themselves. I wonder how much of this mindset is common to the upper-middle-class Boomer Generation (I know, it's an over-used cliche to talk about the quirks of "The Boomers" but I am honestly curious!) There are so many (both my parents and in-laws) who have been financially successful in their working lives and thrived independent of their own extended families — and have not ever implied or asked about interdependent family care down the road. The assumption seems to be we all pull ourselves up by our bootstraps independently, and save money for that care accordingly. (This could go down a rabbit trail involving the Industrial Revolution, The American Dream, moving away for college and work, a good does of Wendell Berry, and the difficulties of trying to follow that American Dream nuclear family mold in a new city, away from family..... but I digress!)
My younger sister (we're both in our 60s) was diagnosed 9 years ago with adult onset Myotonic Muscular Dystrophy. Seven years ago she moved with us because it was too risky for her to live alone. Now she is bedridden and I am full-time caregiver. I won't lie - it's been a slow letting go for me of my ideas about what my later years would look like. And, it's hard work physically! But, by God's grace, we are growing closer and I honestly believe that this is a privilege more than a burden. And it has made me ponder what evidence of grace I'd like to be present in my life should I need my children or someone else care for me this way at some point.
My mother was just diagnosed with Parkinson's in her early 70s. She is a mild case so far and is working hard with therapies and treatments and diet changes to slow the progress. She's doing okay, but struggling emotionally with the idea that she might eventually become a burden to others after a lifetime of being independent. Why else have four daughters, I asked her, than to burden them when you're old? I was joking, but also--we want to help her. And with four of us to help, ideally no one will be too unduly overtaxed, depending on how much care and help she (and my dad) eventually require.
It would be a terrible loss if she were to end her life prematurely in order to avoid the "indignity" of a period of dependence or decline or burdensomeness. We still have so much to share with her and to learn from her. Fortunately, she would not consider such a course.
I have so many thoughts right now. As you know, I provide live in care for my grandmother who is 87. I would write more but I’m not sure I could be cogent because I was up late with her in the ER last night.
Living with her in this way has been a blessing to us. It is hard, but it feels like a noble struggling in figuring out her medical challenges; overcoming the obstacle of her frailty to create moments of joy; and learning when, if, and how to gracefully accept defeat. Ultimately, caring for her is a lot like caring for a child, but with 18x the medical appointments. Frankly the biggest burden is dealing with doctors and other relatives, not with her!
What’s fascinating to me is that she’s not in the stage of wearing diapers, but she needs to be surrounded by people that help her feel safe, calm, and secure. She needs to have mental health support from people she loves so that she doesn’t feel unduly anxious, and she needs the people in her life to be understanding of the nature of this stage of decline - including addressing paranoia, hostility, and memory loss with sensitivity and non-defensiveness. She needs others to check in regularly - to follow up clearly with her and plan visits to her. And she needs help talking to doctors whose visits are too short, directives too long, and jargon too confusing. she could easily be in this stage of life for 10 years before she dies, likely less if she doesn’t have support because the likelihood of mismanaging a medication or misreporting something to a doctor that leads to a fatal error is high. This is the prenultimate stage of life, and no one really prepares you for it.
The idea that "because they're family" imposes a much greater burden is alien to me; I was raised by independent Boomer generation parents, who were from families where independence was encouraged and who lived a 3hr drive from their own parents/relatives. I myself have moved across the continent from all my (east coast) relatives.
In my view, family bonds are somewhat similar to hometown/grade school friendships. Your pool of potential grade school friends is largely determined by who lives near you and who your parents are friends with; a lot of random chance. Similarly, family bonds tend to be closer because they're people in your life from birth, who care for you through a tie/relationship with your parents. Families are like close, interlocking friend groups, usually with the added odds of similar interests/tendencies due both genetics and shared environment. To me, the obligations I feel aren't "because we're family" but "because we're close, because I like you, because you've done so much for me" (which came as an extension of social bonds formed between relatives). I like that this conception of why family is important doesn't privilege mere bonds of blood/marriage/adoption over chosen family or strong bonds of friendship.
I see the logic of “noble suicide” sometimes when it comes to young family/child support - opposing benefits for children and saying parents should pay for everything because people don’t want to “pay for other people’s kids.” It’s seen as an infringement on the people who don’t currently have kids if companies contribute towards health insurance for the whole family or the park is designed with young children in mind or the government sends out checks.
I'm reading "the enabled life" by Roy McCloughry, subtitled Christianity in a disabling world. It is beautiful. He explore the place of disability in the modern world, and then as it is informed by Christianity. I'm in the Creation chapter and we're considering interdependence (Adam needing Eve) as a defining characteristic of people. I think you'd like it!
Thank you for this response to Hanania’s assertion that we should somehow use death as an instrument to avoid burdensomeness. People do not become burdens, no matter how burdened they are by various afflictions.
If I understand Hanania correctly, he's expressing his feelings ("I don’t like inconveniencing others") which is consistent with his other posts about masculinity.
If you feel like otherwise that's fine, but why invalidate Hanania's feelings?
Furthermore, in your post you describe your experience of sacrificing yourself to care for others. What do you know of the reverse situation? Particularly when no future reciprocity can reasonably be expected.
Arguments against public support for childcare and parenting. That people chose to be parents, they chose to undertake the burden of parenting, so it's no one else's responsibility but their own. I can see how people can get to that point. I've seen it at play, where those relatives without children have been oppressed by a mindset among those with children that they are less than because they didn't have any children, feeding an insane entitlement mentality that those without children should sacrifice their all for everyone else with no corresponding reciprocity.
I was with my parents in their dying, every step of the way, and I have no regrets. We moved back to be nearer to them. My mom died at home, and my dad died in a nursing home. He was in a nursing home not because we didn't want to care for him at home, but because it became impossible to do so. He'd neglected his health for so long. He needed a wheelchair and 24-7 care, so a nearby nursing home of professional staff to care for his needs was the best thing that happened to him. If anything, assisted living long before he went to the nursing home would have been ideal, but he idolized living in the house which had long become too much for him and my mom to deal with it.
I'm committed to helping a cousin who made so many sacrifices caregiving for our elderly aunt (my mom's older sister), only to be told by our cousin (my aunt's daughter) that she wasn't close enough family to be deserving of any help the rest of the family might give her, because other full cousins were more worthy. This cousin is the child of our mothers' older half-brother. The older generations never made any distinctions of the type this cousin is making. I've stepped in to help this (half) cousin when she was in a desperate situation even though my (full) cousin was resentful of it.
I have to agree. Part of our lives have always included caring for the elderly. It enriches us. It doesn’t subtract from our lives, it teaches and adds to it.
When my grandfather was dying, I was so afraid to visit - I thought it would be sad and painful. I finally visited in what happened to be his last instance of lucidity before passing a week later.
I was right, it was sad and painful. But I only regret not visiting sooner and spending more time with him. Trying to avoid the pain of death and dying is self-defeating. My loved ones will reach a point of dying, and this will be painful no matter how it happens. Meanwhile I will either have meaningful loving connection (which by necessity includes caring for such a person) before they die, or I’ll wish I did.
Today, my phone rang at 7:30 a.m. and my heart started to race. Immediately, I thought of my parents and parents-in-law and what could have happened to them. A stroke? Died in their sleep? It was just the ballet teacher calling to postpone the lesson, and after my heart had slowed to its normal pace again I realized that I am constantly having on my mind that my parents or in-laws could have a fall, or get sick, or die suddenly. They're in their mid-seventies and early eighties, some are not in good health.
Obviously, waiting for a call that spells disaster is a burden - but I don't think of my parents or in-laws in terms of a potential burden. They are people who raised me and who supported me and who loved me unconditionally for years, they are people who have invited me into their lives and made room for me there, and I want them to be well.
The next decade is going to show which sacrifices on my part this will entail. I know that caregivers' burnout is real and I know that as a society, we fail caregivers on a daily basis, but I hope that I will be a support to my parents and (to a lesser degree) my in-laws until their death.
You're right, we will have to talk more about the kind of support they might want and need - we've broached the subject, but obviously it's very hard and painful to consider this inevitable period in our shared lives.
Thank you, Leah. What I needed to read. My nine year old has level 2 autism and we've been struggling getting ABA care. But regardless of the burdens, I can't imagine a world in which disabled children are killed before they are born. Lord have mercy on us all.
Caring for my parents now, my mother with advanced dementia and my father in an increasingly similar way, is an honour even if heartbreaking and hard in a number of ways, emotional and practical (even though they are now together in residential care). But it is a privilege and a gift to love them and to have been loved by them. I came home to my family through the gift of adoption, and my mother loved and cared for me just as if I were born of her body. I feel this privilege to love them now, in their nineties - even though it’s been the steepest learning curve - so deeply. This is profound.
I have started having conversations with my parents about their plans for care towards the end of their lives, although it's quite far off in the future--in fact the catalyst for these conversations has been the issues with caring for my father's grandparents, and right now I have three living grandparents. My dad often talks about the necessity of preparing to have diminished capacity, and in planning to cede control and independence in some ways *before* it becomes completely necessary, because we've seen by example that it's all too common to lose judgment of such things at an advanced age. For example, I or one of my siblings will receive power of attorney over family finances before he turns 80.
I think often the issue with elder care is not that children don't want to put their lives on hold for their parents, but rather parents who are totally unwilling to reorganize their lives to receive such care, or perhaps do not realize that they need it. I've shared a story here before about having to call Adult Protective Services for an elderly neighbor who suddenly lost his independence and wouldn't agree to seek care--in the end he had to be involuntarily committed to a nursing home. He had no family and clearly nothing even resembling a plan for aging. In my own life, my grandfather has refused to cede control over things like finances even when it's obvious he has been scammed in various ways. Luckily he's now in a situation where that's less possible, but getting him there took a huge amount of willpower and caused a lot of pain for his children. I cannot emphasize enough the importance of planning for aging and setting these plans in motion *before* loss of mental capacity.
A family member has said casually they "hope to not live THAT long" (because that would start the beginning of an undignified end, I assume?) The same family member has made it clear their only child should not be burdened with their care & they will handle it themselves. I wonder how much of this mindset is common to the upper-middle-class Boomer Generation (I know, it's an over-used cliche to talk about the quirks of "The Boomers" but I am honestly curious!) There are so many (both my parents and in-laws) who have been financially successful in their working lives and thrived independent of their own extended families — and have not ever implied or asked about interdependent family care down the road. The assumption seems to be we all pull ourselves up by our bootstraps independently, and save money for that care accordingly. (This could go down a rabbit trail involving the Industrial Revolution, The American Dream, moving away for college and work, a good does of Wendell Berry, and the difficulties of trying to follow that American Dream nuclear family mold in a new city, away from family..... but I digress!)
My younger sister (we're both in our 60s) was diagnosed 9 years ago with adult onset Myotonic Muscular Dystrophy. Seven years ago she moved with us because it was too risky for her to live alone. Now she is bedridden and I am full-time caregiver. I won't lie - it's been a slow letting go for me of my ideas about what my later years would look like. And, it's hard work physically! But, by God's grace, we are growing closer and I honestly believe that this is a privilege more than a burden. And it has made me ponder what evidence of grace I'd like to be present in my life should I need my children or someone else care for me this way at some point.
My mother was just diagnosed with Parkinson's in her early 70s. She is a mild case so far and is working hard with therapies and treatments and diet changes to slow the progress. She's doing okay, but struggling emotionally with the idea that she might eventually become a burden to others after a lifetime of being independent. Why else have four daughters, I asked her, than to burden them when you're old? I was joking, but also--we want to help her. And with four of us to help, ideally no one will be too unduly overtaxed, depending on how much care and help she (and my dad) eventually require.
It would be a terrible loss if she were to end her life prematurely in order to avoid the "indignity" of a period of dependence or decline or burdensomeness. We still have so much to share with her and to learn from her. Fortunately, she would not consider such a course.
I have so many thoughts right now. As you know, I provide live in care for my grandmother who is 87. I would write more but I’m not sure I could be cogent because I was up late with her in the ER last night.
Living with her in this way has been a blessing to us. It is hard, but it feels like a noble struggling in figuring out her medical challenges; overcoming the obstacle of her frailty to create moments of joy; and learning when, if, and how to gracefully accept defeat. Ultimately, caring for her is a lot like caring for a child, but with 18x the medical appointments. Frankly the biggest burden is dealing with doctors and other relatives, not with her!
What’s fascinating to me is that she’s not in the stage of wearing diapers, but she needs to be surrounded by people that help her feel safe, calm, and secure. She needs to have mental health support from people she loves so that she doesn’t feel unduly anxious, and she needs the people in her life to be understanding of the nature of this stage of decline - including addressing paranoia, hostility, and memory loss with sensitivity and non-defensiveness. She needs others to check in regularly - to follow up clearly with her and plan visits to her. And she needs help talking to doctors whose visits are too short, directives too long, and jargon too confusing. she could easily be in this stage of life for 10 years before she dies, likely less if she doesn’t have support because the likelihood of mismanaging a medication or misreporting something to a doctor that leads to a fatal error is high. This is the prenultimate stage of life, and no one really prepares you for it.
The idea that "because they're family" imposes a much greater burden is alien to me; I was raised by independent Boomer generation parents, who were from families where independence was encouraged and who lived a 3hr drive from their own parents/relatives. I myself have moved across the continent from all my (east coast) relatives.
In my view, family bonds are somewhat similar to hometown/grade school friendships. Your pool of potential grade school friends is largely determined by who lives near you and who your parents are friends with; a lot of random chance. Similarly, family bonds tend to be closer because they're people in your life from birth, who care for you through a tie/relationship with your parents. Families are like close, interlocking friend groups, usually with the added odds of similar interests/tendencies due both genetics and shared environment. To me, the obligations I feel aren't "because we're family" but "because we're close, because I like you, because you've done so much for me" (which came as an extension of social bonds formed between relatives). I like that this conception of why family is important doesn't privilege mere bonds of blood/marriage/adoption over chosen family or strong bonds of friendship.
I see the logic of “noble suicide” sometimes when it comes to young family/child support - opposing benefits for children and saying parents should pay for everything because people don’t want to “pay for other people’s kids.” It’s seen as an infringement on the people who don’t currently have kids if companies contribute towards health insurance for the whole family or the park is designed with young children in mind or the government sends out checks.
I'm reading "the enabled life" by Roy McCloughry, subtitled Christianity in a disabling world. It is beautiful. He explore the place of disability in the modern world, and then as it is informed by Christianity. I'm in the Creation chapter and we're considering interdependence (Adam needing Eve) as a defining characteristic of people. I think you'd like it!
Thank you for this response to Hanania’s assertion that we should somehow use death as an instrument to avoid burdensomeness. People do not become burdens, no matter how burdened they are by various afflictions.
If I understand Hanania correctly, he's expressing his feelings ("I don’t like inconveniencing others") which is consistent with his other posts about masculinity.
If you feel like otherwise that's fine, but why invalidate Hanania's feelings?
Furthermore, in your post you describe your experience of sacrificing yourself to care for others. What do you know of the reverse situation? Particularly when no future reciprocity can reasonably be expected.
Arguments against public support for childcare and parenting. That people chose to be parents, they chose to undertake the burden of parenting, so it's no one else's responsibility but their own. I can see how people can get to that point. I've seen it at play, where those relatives without children have been oppressed by a mindset among those with children that they are less than because they didn't have any children, feeding an insane entitlement mentality that those without children should sacrifice their all for everyone else with no corresponding reciprocity.
I was with my parents in their dying, every step of the way, and I have no regrets. We moved back to be nearer to them. My mom died at home, and my dad died in a nursing home. He was in a nursing home not because we didn't want to care for him at home, but because it became impossible to do so. He'd neglected his health for so long. He needed a wheelchair and 24-7 care, so a nearby nursing home of professional staff to care for his needs was the best thing that happened to him. If anything, assisted living long before he went to the nursing home would have been ideal, but he idolized living in the house which had long become too much for him and my mom to deal with it.
I'm committed to helping a cousin who made so many sacrifices caregiving for our elderly aunt (my mom's older sister), only to be told by our cousin (my aunt's daughter) that she wasn't close enough family to be deserving of any help the rest of the family might give her, because other full cousins were more worthy. This cousin is the child of our mothers' older half-brother. The older generations never made any distinctions of the type this cousin is making. I've stepped in to help this (half) cousin when she was in a desperate situation even though my (full) cousin was resentful of it.
I have to agree. Part of our lives have always included caring for the elderly. It enriches us. It doesn’t subtract from our lives, it teaches and adds to it.