Things have been better.
Dad is halfway through a two-months-to-live prognosis handed to him quite frankly from a cancer center. He's being tended to daily by home hospice care, who are awesome. Amy and I met them by chance three weeks ago, when they were on the verge of calling Adult Protective Services because both my parents had stopped bathing or eating or changing their clothes or otherwise acknowledging external reality without outside assistance, and they had failed to volunteer that they had any children. But there I stood! And this is how I've come to inherit many troubles at the moment.
My parents' self-neglect is due less to despair and more due to dad being very sick and weak and mom sinking ever deeper into dementia, a condition that started to get serious when in winter 2011 they traded their big town-centric Fairfield apartment building for a drafty shack at the end of a dirt road in Oakland, miles from anything.
Why they did this is a mystery; I suspect that they got bilked by someone taking advantage of the fact that dad's energy level had finally dropped beneath the level required to keep mom's batty irrationality (a lifelong core personality trait) in check. I don't expect we'll ever quite know. But their moving into that awful space was the moment that their age -- over 80, by this time -- caught up with them.
Mom's mind began to drift in earnest, and is now permanently stuck in a state where, at best, she thinks they still own the apartment building and are just staying in the shack for a few days as a getaway. Or she thinks that they own all the other little summer shacks around the nearby lake, and refers to the people there as their tenants; there is a whole cast of other tenants she makes up stories about, sometimes involving noisy people who live on the second floor. (They do not have a second floor.)
At worst, she thinks dad is her stepfather and calls me for help to take her to a shelter for runaway girls. That was the state she was in the morning that we ran into the social workers by chance; my parents were hungry, dehydrated and filthy, which couldn't have helped. Mom wandered back into the present when I gave her some coffee, and we've since got folks to help with groceries and meal preparation and bathing and so on. APS is being kept at bay, but they're aware of the situation and prepared to intervene if we can't find a home-care situation that keeps my parents from being a danger to themselves and possibly to others. (Dad, weaker every day, keeps driving around, though he often falls down in the driveway and has to crawl back into the house. I'm not there to take the keys away. Ricky tried and got shouted down. The last time I visited, last week, mom locked the door while dad was outside and couldn't figure out how to unlock it; by chance I had the back door open. Neither of them are good at using their strange modern telephone, so one can't call them to check in.)
I'm paying for all this myself. I secured power of attorney last friday at an at-home meeting among my parents, a hospice social worker, and my parents' lawyer, who is also awesome. I am as I write this engaged full-time in trying to suss out their core financial information, then contacting various institutions and trying to convince them that I have authority to access all of my parents' stuff, and furthermore that time is of the essence -- I am trying my hardest to set mom up with the financial aid that will allow her to live in an assisted-living facility for the rest of her life the moment dad is gone, and there are only weeks-if-not-days left to do this. They are riding off my credit card for the nonce, and depending upon what I discover in their bank and credit-card accounts I might be able to reimburse myself, or even allow them to pay for their own care, but I'm not betting on much. But more to the point, a prerequisite to obtaining elder-care financial aid in Maine is knowledge of said elder's assets, and the lawyer knows exactly what legal-financial kung-fu to perform to tidy things up once I get those magic numbers.
The lawyer was very surprised and sad to hear of their rapid decline, starting with the ill-advised home sale, which was news to him. The last time he saw them, only a couple of years ago, they struck him as "young elders", to use his words. I would have agreed. They have fallen apart so fast since then, and I suppose that the undetected and untreated cancer sapping dad's strength, assertiveness, and ability to complement and counter mom's batshittery played a primary role here.
Ricky, disappointingly, presents another obstacle, one active as I write this. For years he's been frequently busing between his home in Bangor and my parents' place to help them out, a few days at a time, even though he and our mother get along with one another so poorly. (I didn't realize until Amy pointed out only yesterday that they possess very similar forms of crazy. By god, it's true, and no wonder they can't stand each other.) Dad would always give him rides to and from the bus station. But now dad can't drive very well any more, so when Ricky (due to a miscommunication) raced to the shack on Saturday, he found himself stuck there. He's not very good at communicating with the taxi service, and refuses rides from the home health-care folk in the house, whom he views with distrust. He also refuses my suggestion to solve two problems at once by driving dad's car to Bangor and keeping it there. (He asked mom if he could. She said no. So that's that.)
In the meantime, he's stuck in a one-room house with my mother, bored and angry. I received complaints yesterday that he's been frightening the home-care workers and even sending them home. (When I ask him about this, he blames mom.) I'm not sure what to do about this, especially given that even if I make the three-hour drive up to Oakland to give him the one-hour ride to Bangor -- which I am seriously, deliriously considering -- there's no practical way to prevent him from just busing back and getting stuck again the next time he feels it necessary.
I've apologized to the home-care folks for Ricky and they've insisted that I've nothing to apologize for, but his appearance is the latest in a one-thing-after-another litany of obstacles that keeps APS present, waiting to intervene and just take my parents away anyway. I've made in clear in writing that if the hospice decides that this last resort becomes the best option for all involved, then so be it.
I'm horrified at the thought of the funeral, mainly because I literally cannot imagine how mom will even manage to dress herself for it, let alone how she'll act at the actual service; she tells me over the phone that dad's got a real bad cold, you know, from the move, but he's getting better. Ricky's going to end up forever furious at me for not burying dad with full (expensive, tacky, and disrespectful) military honors, which Ricky's been insisting on, and I've been quietly ignoring. (Dad served in the Air Force for a few years as a kid, but it's not part of his identity or personality in any significant way, unlike Ricky's deeply self-ingrained army service.) Don't even ask me about Peter.
I'm not very close to my parents. I've only relatively recently come to compare notes with my grown-up friends and realize that my childhood-thorugh-young-adulthood was really quite fucked up in some fairly unique ways, and I have a lot of unpacking yet to do. That they are making all this difficult to the very last is really quite in character. (Don't tell me they can't help it. Dad is very much of sound mind, knows damn well what's going on, and still resisted giving me power of attorney, to say nothing of the idea of moving them out of the house and into a place that could actually care for them better.) I am not very sad that my father is dying, and that my mother rather is as well. I am upset in the sense that this is a process filled with one frustration after another, and carry self-loathing that I didn't do anything sooner, which could have made this much easier for everyone.
This leads to the question of why I choose to take up this burden, which has caused me to all but stop working for now, and almost certainly take up a large financial debt, and possibly miss a June vacation in Austin that I was quite looking forward to. I could just cut everyone off and let APS handle it, and that might still end up happening anyway. The answer, I think, is that I'm doing this for myself. I don't want to live out my own life feeling that I cruelly just cut off my parents undeservedly at the end, that I turned my back on them. I mean, here I am right? They couldn't have done that badly for me, and they deserve some attention back when they need it.
I'm interested in doing the right thing, and making sacrifices towards that. But I suppose too I ought to set an upper limit.
UPDATE: I very much appreciate and am touched by everyone's kind and understanding responses, here and elsewhere. Thank you.
Only a few hours after posting this the social worker told me that the home hospice attempt was all but ready to wave the white flag. Dad's strength is inexorably fading by the day, and with nobody dependable in the house at all times, the program just can't work. Home hospice assumes the round-the-clock presence of a family member who can do simple tasks and keep an eye on things, I learned. They initially thought mom could provide this role, and after a few days saw how that clearly wasn't true. Then Ricky volunteered, and that also fell apart quickly. The folks I hired to show up daily for a few hours don't cut it, since apparently they're not legally allowed to administer medicine. (A detail that strikes me as odd, as I type, but that's what she said, twice.) So it fell back to me, she said. Could I come over right away and stay in the house for a few days, while they looked for a hospital for dad?
This is when these thoughts of upper limits immediately applied themselves. I discussed it with Amy, and called the social worker back with a frank assessment that, as she probably has observed, ours is a dysfunctional family. I wanted to do right by my family and I wanted to see that the end of their lives came with peace and dignity, and having me stay in their shack with nothing to do but build up resentment and bitterness towards each other would be a rather poor way to achieve this goal.
And being an awesome professional, which she is, she understood exactly where I was going as soon as I started talking (but let me air it all out anyway), so we agreed on an alternative: I'm going to go on up to Waterville for a week, staying in a hotel that's only a few minutes away from their house, rather than a few hours, and will plan to drop in often, and otherwise be on-call, while the professionals continue to work things out. I'm going up tonight, accompanied (for a few days) by Amy. Enterprise Rent-A-Car, who is also awesome, gave me a nice rate on a nice car and said that I could just drop it at any Enterprise in Maine… so that provides an opportunity to commandeer dad's car out of danger, at least. (Among the things that Power of Attorney allows me, thankfully.)
My parents' self-neglect is due less to despair and more due to dad being very sick and weak and mom sinking ever deeper into dementia, a condition that started to get serious when in winter 2011 they traded their big town-centric Fairfield apartment building for a drafty shack at the end of a dirt road in Oakland, miles from anything.
Why they did this is a mystery; I suspect that they got bilked by someone taking advantage of the fact that dad's energy level had finally dropped beneath the level required to keep mom's batty irrationality (a lifelong core personality trait) in check. I don't expect we'll ever quite know. But their moving into that awful space was the moment that their age -- over 80, by this time -- caught up with them.
Mom's mind began to drift in earnest, and is now permanently stuck in a state where, at best, she thinks they still own the apartment building and are just staying in the shack for a few days as a getaway. Or she thinks that they own all the other little summer shacks around the nearby lake, and refers to the people there as their tenants; there is a whole cast of other tenants she makes up stories about, sometimes involving noisy people who live on the second floor. (They do not have a second floor.)
At worst, she thinks dad is her stepfather and calls me for help to take her to a shelter for runaway girls. That was the state she was in the morning that we ran into the social workers by chance; my parents were hungry, dehydrated and filthy, which couldn't have helped. Mom wandered back into the present when I gave her some coffee, and we've since got folks to help with groceries and meal preparation and bathing and so on. APS is being kept at bay, but they're aware of the situation and prepared to intervene if we can't find a home-care situation that keeps my parents from being a danger to themselves and possibly to others. (Dad, weaker every day, keeps driving around, though he often falls down in the driveway and has to crawl back into the house. I'm not there to take the keys away. Ricky tried and got shouted down. The last time I visited, last week, mom locked the door while dad was outside and couldn't figure out how to unlock it; by chance I had the back door open. Neither of them are good at using their strange modern telephone, so one can't call them to check in.)
I'm paying for all this myself. I secured power of attorney last friday at an at-home meeting among my parents, a hospice social worker, and my parents' lawyer, who is also awesome. I am as I write this engaged full-time in trying to suss out their core financial information, then contacting various institutions and trying to convince them that I have authority to access all of my parents' stuff, and furthermore that time is of the essence -- I am trying my hardest to set mom up with the financial aid that will allow her to live in an assisted-living facility for the rest of her life the moment dad is gone, and there are only weeks-if-not-days left to do this. They are riding off my credit card for the nonce, and depending upon what I discover in their bank and credit-card accounts I might be able to reimburse myself, or even allow them to pay for their own care, but I'm not betting on much. But more to the point, a prerequisite to obtaining elder-care financial aid in Maine is knowledge of said elder's assets, and the lawyer knows exactly what legal-financial kung-fu to perform to tidy things up once I get those magic numbers.
The lawyer was very surprised and sad to hear of their rapid decline, starting with the ill-advised home sale, which was news to him. The last time he saw them, only a couple of years ago, they struck him as "young elders", to use his words. I would have agreed. They have fallen apart so fast since then, and I suppose that the undetected and untreated cancer sapping dad's strength, assertiveness, and ability to complement and counter mom's batshittery played a primary role here.
Ricky, disappointingly, presents another obstacle, one active as I write this. For years he's been frequently busing between his home in Bangor and my parents' place to help them out, a few days at a time, even though he and our mother get along with one another so poorly. (I didn't realize until Amy pointed out only yesterday that they possess very similar forms of crazy. By god, it's true, and no wonder they can't stand each other.) Dad would always give him rides to and from the bus station. But now dad can't drive very well any more, so when Ricky (due to a miscommunication) raced to the shack on Saturday, he found himself stuck there. He's not very good at communicating with the taxi service, and refuses rides from the home health-care folk in the house, whom he views with distrust. He also refuses my suggestion to solve two problems at once by driving dad's car to Bangor and keeping it there. (He asked mom if he could. She said no. So that's that.)
In the meantime, he's stuck in a one-room house with my mother, bored and angry. I received complaints yesterday that he's been frightening the home-care workers and even sending them home. (When I ask him about this, he blames mom.) I'm not sure what to do about this, especially given that even if I make the three-hour drive up to Oakland to give him the one-hour ride to Bangor -- which I am seriously, deliriously considering -- there's no practical way to prevent him from just busing back and getting stuck again the next time he feels it necessary.
I've apologized to the home-care folks for Ricky and they've insisted that I've nothing to apologize for, but his appearance is the latest in a one-thing-after-another litany of obstacles that keeps APS present, waiting to intervene and just take my parents away anyway. I've made in clear in writing that if the hospice decides that this last resort becomes the best option for all involved, then so be it.
I'm horrified at the thought of the funeral, mainly because I literally cannot imagine how mom will even manage to dress herself for it, let alone how she'll act at the actual service; she tells me over the phone that dad's got a real bad cold, you know, from the move, but he's getting better. Ricky's going to end up forever furious at me for not burying dad with full (expensive, tacky, and disrespectful) military honors, which Ricky's been insisting on, and I've been quietly ignoring. (Dad served in the Air Force for a few years as a kid, but it's not part of his identity or personality in any significant way, unlike Ricky's deeply self-ingrained army service.) Don't even ask me about Peter.
I'm not very close to my parents. I've only relatively recently come to compare notes with my grown-up friends and realize that my childhood-thorugh-young-adulthood was really quite fucked up in some fairly unique ways, and I have a lot of unpacking yet to do. That they are making all this difficult to the very last is really quite in character. (Don't tell me they can't help it. Dad is very much of sound mind, knows damn well what's going on, and still resisted giving me power of attorney, to say nothing of the idea of moving them out of the house and into a place that could actually care for them better.) I am not very sad that my father is dying, and that my mother rather is as well. I am upset in the sense that this is a process filled with one frustration after another, and carry self-loathing that I didn't do anything sooner, which could have made this much easier for everyone.
This leads to the question of why I choose to take up this burden, which has caused me to all but stop working for now, and almost certainly take up a large financial debt, and possibly miss a June vacation in Austin that I was quite looking forward to. I could just cut everyone off and let APS handle it, and that might still end up happening anyway. The answer, I think, is that I'm doing this for myself. I don't want to live out my own life feeling that I cruelly just cut off my parents undeservedly at the end, that I turned my back on them. I mean, here I am right? They couldn't have done that badly for me, and they deserve some attention back when they need it.
I'm interested in doing the right thing, and making sacrifices towards that. But I suppose too I ought to set an upper limit.
UPDATE: I very much appreciate and am touched by everyone's kind and understanding responses, here and elsewhere. Thank you.
Only a few hours after posting this the social worker told me that the home hospice attempt was all but ready to wave the white flag. Dad's strength is inexorably fading by the day, and with nobody dependable in the house at all times, the program just can't work. Home hospice assumes the round-the-clock presence of a family member who can do simple tasks and keep an eye on things, I learned. They initially thought mom could provide this role, and after a few days saw how that clearly wasn't true. Then Ricky volunteered, and that also fell apart quickly. The folks I hired to show up daily for a few hours don't cut it, since apparently they're not legally allowed to administer medicine. (A detail that strikes me as odd, as I type, but that's what she said, twice.) So it fell back to me, she said. Could I come over right away and stay in the house for a few days, while they looked for a hospital for dad?
This is when these thoughts of upper limits immediately applied themselves. I discussed it with Amy, and called the social worker back with a frank assessment that, as she probably has observed, ours is a dysfunctional family. I wanted to do right by my family and I wanted to see that the end of their lives came with peace and dignity, and having me stay in their shack with nothing to do but build up resentment and bitterness towards each other would be a rather poor way to achieve this goal.
And being an awesome professional, which she is, she understood exactly where I was going as soon as I started talking (but let me air it all out anyway), so we agreed on an alternative: I'm going to go on up to Waterville for a week, staying in a hotel that's only a few minutes away from their house, rather than a few hours, and will plan to drop in often, and otherwise be on-call, while the professionals continue to work things out. I'm going up tonight, accompanied (for a few days) by Amy. Enterprise Rent-A-Car, who is also awesome, gave me a nice rate on a nice car and said that I could just drop it at any Enterprise in Maine… so that provides an opportunity to commandeer dad's car out of danger, at least. (Among the things that Power of Attorney allows me, thankfully.)