Easily one of the most soul-crushing aspects of being an Alzheimer's caregiver are the questions: Almost every day, the questions never stop; Over and over and over again. And no, I'm not talking about the afflicted (in this case, my father), I'm talking about family members, his friends, my friends, and casual acquaintances that seem more interested in the gossipy aspect of my status as opposed to genuine concern for dad, my family members, or me, or the perfunctory "How is everything?," without really wanting to know.. I am forever grateful for the ones close, those I can vent honestly to, who are objective and do not judge. Thank you so much..
Yes, I am angry while I write these words, but that's hardly a fucking shock. I am always angry: Yes, this is happening. No, there's nothing I can do to alter the outcome. Yes, he is much worse than you think he is. Thanks for visiting, but you visited him early; Wait until the sundowners kicks in and see if you feel the same way. No, it doesn't really ever get any better; You just learn to deal with a high level of discomfort and anguish just to be able to get out of bed every day and take care of everything that needs to be taken care of.
Yeah, he has good days. "Good days" now have recently changed: More often than not, he eats half or more of his pureed food. Some days he might initiate conversation more than one question. The Halidol made him laugh for close to a month, and he was polite and and playful and flashes of the person you once knew surfaced. Some days he remembers what I just told him only seconds before and won't ask again for say, ten minutes. A good day is when he doesn't latch on obsessively to a particular thought that ends up dominating that day's conversation. That is now the baseline for a good day.
The bad days are when he's agitated and delusional, when he thinks he can stand, when he's so resistant to help that his paper-thin skin tears when the orderlies are simply trying to keep him seated. The times when I morph from son to other son to brother to father in seconds or minutes isn't nearly as horrifying as you might think, but it's not a real happy time, either. Lately, he's become more quiet, responding to questions, but not initiating conversation. I dread the first ring of the phone anytime it rings. I dread that ring more if it's the nursing home.
I dread dealing with my mom. I love her very much, but it's difficult to see such sadness in her eyes every single day, even when she's "happy." Her friends and family are mostly dead or dying and she's the "lucky one" because she's lucid and alive. I can't imagine the sorrow she never shares as I wheel her in to see her husband of 63 years, wasting away, in and out of coherence, knowing she can't care for him anymore, knowing fully the implications of "in sickness and in health." She told me she wakes up every day and still expects to see him in bed next to her. It must be horrible to be devastated so deeply, every morning, even before getting out of bed.
I hate the isolation. Yes, it's self-imposed, but does anyone else really want to hear this bundle of negativity each time they might call me? I find my reactions to mundane setbacks almost insane. I am so raw that even little disappointments cause tears or rage or a burning in my stomach that rationally, I know shouldn't even bother me. And no, it doesn't help to be told to "shake it off." Fuck you. You watch your family die ever so slowly day after day after day and YOU shake it off.
And for me personally, I am, in real time, watching my family die. My father is but one of many members who are facing dire health situations. We as a unit could have a bad month and I might have almost no one left. And I am not so sure that that wouldn't be the best possible outcome; On the other side, they will all be healed. Isn't that what I should want?
Then there is the matter of watching my father, a man I physically mirror, whose behaviors are hard wired, whose personal ticks I mimic, waste away, while every moment of every day I wonder; Is this my fate? Is he showing me my inevitable demise? Provided my life has no unforeseen tragic endings, will my exit mirror his? Dear God; I hope not.
My family is so tired. Our lives have stopped and re-arranged to accommodate a daily visit, with nothing else to look forward to. We will only be free upon his death, but that would be selfish, evil, and cruel to verbalize. I deal with the casual suggestions of those who have no context, remaining polite when I really want to scream "Do you really fucking think I haven't thought of that?" I know they want to help and they don't know they're not, but nothing quells my rage. You cannot understand until you understand through a similar experience.
You want to help? You want to know what's going on? Thanks. It might be nice to start off by saying "I don't know what to say," or "I don't know how I can help," or "If you want to talk; call me. Just know I'm there.." Approaches like those help. If I want to talk, I will. If I don't; I won't.
Having said these things, please don't think these rules are hard and fast. My father has legions of friends and family who genuinely care about him and have gone out of their way to show their love and respect for him. I've watched grown men cry after their visit, who've told me stories about him I've never heard, who have traveled great distances to pay their respects. Every day, every encounter is overwhelming in its own way. This stage of his life, of our experience, will take years to process.
Then again, you might catch me on a good day, and all might not be well, but under control. I am mercurial, dealing with the horrible circumstances that surround me. Please be patient with me if you call at a difficult time, as I might not be "nice." Please remember I am flailing, drowning, slapping at the water, surrounded by chaos, fear, and the pain of watching those I love most, die. Please forgive my subjectivity, even when I cannot.
Thank you.
Note: This is the third edit I've made to this post, and there may be more. I like to refine and re-read, just so you know..
Yes, I am angry while I write these words, but that's hardly a fucking shock. I am always angry: Yes, this is happening. No, there's nothing I can do to alter the outcome. Yes, he is much worse than you think he is. Thanks for visiting, but you visited him early; Wait until the sundowners kicks in and see if you feel the same way. No, it doesn't really ever get any better; You just learn to deal with a high level of discomfort and anguish just to be able to get out of bed every day and take care of everything that needs to be taken care of.
Yeah, he has good days. "Good days" now have recently changed: More often than not, he eats half or more of his pureed food. Some days he might initiate conversation more than one question. The Halidol made him laugh for close to a month, and he was polite and and playful and flashes of the person you once knew surfaced. Some days he remembers what I just told him only seconds before and won't ask again for say, ten minutes. A good day is when he doesn't latch on obsessively to a particular thought that ends up dominating that day's conversation. That is now the baseline for a good day.
The bad days are when he's agitated and delusional, when he thinks he can stand, when he's so resistant to help that his paper-thin skin tears when the orderlies are simply trying to keep him seated. The times when I morph from son to other son to brother to father in seconds or minutes isn't nearly as horrifying as you might think, but it's not a real happy time, either. Lately, he's become more quiet, responding to questions, but not initiating conversation. I dread the first ring of the phone anytime it rings. I dread that ring more if it's the nursing home.
I dread dealing with my mom. I love her very much, but it's difficult to see such sadness in her eyes every single day, even when she's "happy." Her friends and family are mostly dead or dying and she's the "lucky one" because she's lucid and alive. I can't imagine the sorrow she never shares as I wheel her in to see her husband of 63 years, wasting away, in and out of coherence, knowing she can't care for him anymore, knowing fully the implications of "in sickness and in health." She told me she wakes up every day and still expects to see him in bed next to her. It must be horrible to be devastated so deeply, every morning, even before getting out of bed.
I hate the isolation. Yes, it's self-imposed, but does anyone else really want to hear this bundle of negativity each time they might call me? I find my reactions to mundane setbacks almost insane. I am so raw that even little disappointments cause tears or rage or a burning in my stomach that rationally, I know shouldn't even bother me. And no, it doesn't help to be told to "shake it off." Fuck you. You watch your family die ever so slowly day after day after day and YOU shake it off.
And for me personally, I am, in real time, watching my family die. My father is but one of many members who are facing dire health situations. We as a unit could have a bad month and I might have almost no one left. And I am not so sure that that wouldn't be the best possible outcome; On the other side, they will all be healed. Isn't that what I should want?
Then there is the matter of watching my father, a man I physically mirror, whose behaviors are hard wired, whose personal ticks I mimic, waste away, while every moment of every day I wonder; Is this my fate? Is he showing me my inevitable demise? Provided my life has no unforeseen tragic endings, will my exit mirror his? Dear God; I hope not.
My family is so tired. Our lives have stopped and re-arranged to accommodate a daily visit, with nothing else to look forward to. We will only be free upon his death, but that would be selfish, evil, and cruel to verbalize. I deal with the casual suggestions of those who have no context, remaining polite when I really want to scream "Do you really fucking think I haven't thought of that?" I know they want to help and they don't know they're not, but nothing quells my rage. You cannot understand until you understand through a similar experience.
You want to help? You want to know what's going on? Thanks. It might be nice to start off by saying "I don't know what to say," or "I don't know how I can help," or "If you want to talk; call me. Just know I'm there.." Approaches like those help. If I want to talk, I will. If I don't; I won't.
Having said these things, please don't think these rules are hard and fast. My father has legions of friends and family who genuinely care about him and have gone out of their way to show their love and respect for him. I've watched grown men cry after their visit, who've told me stories about him I've never heard, who have traveled great distances to pay their respects. Every day, every encounter is overwhelming in its own way. This stage of his life, of our experience, will take years to process.
Then again, you might catch me on a good day, and all might not be well, but under control. I am mercurial, dealing with the horrible circumstances that surround me. Please be patient with me if you call at a difficult time, as I might not be "nice." Please remember I am flailing, drowning, slapping at the water, surrounded by chaos, fear, and the pain of watching those I love most, die. Please forgive my subjectivity, even when I cannot.
Thank you.
Note: This is the third edit I've made to this post, and there may be more. I like to refine and re-read, just so you know..
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