I've just received a call from Dad's main caregiver. Its Sunday night. Why do I always receive these calls on a Sunday night, or just before a major appointment, or just before a trip, as is the case tonight? He told me that Dad has another painful boil on his other side now and that he really should go see the doctor and could I get him in as soon as possible? I really don't know if I'll be able to get him in as its Sunday night and his doctor is usually pretty busy. I'm also leaving for the holiday on Tuesday, so something needs to be done or decided tomorrow.
It's not that I want Dad to suffer or be uncomfortable, but I just get so irritated that these things always manage to happen at the worst times. I also get irritated at the fact that it seems to be Dad's unconscious mission to make his illness as difficult and filled with weird and uncomfortable events as possible. Which I suppose is a selfish thought, but I long ago decided every thought I had, selfish or otherwise, was okay to have, as long as they weren't acted on.
You have to give yourself permission to be angry at your loved one, disappointed and irritated and all the other negative emotions. It's acceptable, it's okay. Thats what I tell everyone who comes to me in this situation. Otherwise, you're just going to drive yourself crazy with guilt and self-loathing. This is a tough situation to be in, and I think every emotion you're going to have is okay.
Sunday, November 21, 2010
Tuesday, November 16, 2010
Personal Post
What is it about siblings? I can't be the only person who struggles with siblings that don't help out with parents as much as they should. From the beginning, I have been more responsible for my father than my sibling, and that's kind of the way I always knew it would be. Growing up, my father and my sibling had a difficult relationship, whereas my Dad and I got along a little better.
For years now, I've been paid to handle Dad's affairs and be on 24-hour call. It's a responsibility I took on willingly. But sometimes I get a little tired of being the one in charge, being responsible. I don't get that many calls, however, even when I go on vacation, I always have my phone with me, knowing that I might have to deal with some emergency. And there has been the occasional problem, although never terribly serious. However, my sibling goes on vacation and never worries about Dad, never asks how he is or whether I'm going to be taking care of things. Again, I realize I'm getting paid and I realize I've taken on the responsibility willingly. But sometimes I get a little angry and wish my sibling was a little more involved.
I often talk to other people dealing with a parent who is ill or has dementia like my Dad, and the number of people who have at least one AWOL sibling is striking. It's a family dynamic that seems incredibly common-and that's very sad.
For years now, I've been paid to handle Dad's affairs and be on 24-hour call. It's a responsibility I took on willingly. But sometimes I get a little tired of being the one in charge, being responsible. I don't get that many calls, however, even when I go on vacation, I always have my phone with me, knowing that I might have to deal with some emergency. And there has been the occasional problem, although never terribly serious. However, my sibling goes on vacation and never worries about Dad, never asks how he is or whether I'm going to be taking care of things. Again, I realize I'm getting paid and I realize I've taken on the responsibility willingly. But sometimes I get a little angry and wish my sibling was a little more involved.
I often talk to other people dealing with a parent who is ill or has dementia like my Dad, and the number of people who have at least one AWOL sibling is striking. It's a family dynamic that seems incredibly common-and that's very sad.
Tuesday, November 9, 2010
Excerpt
"Every day at the chiropractic office where I worked I would get a call on my cell phone around four o’clock from Dad, checking in.
“This is Joy”
“Hi, its Dad.“ Hearing his measured tone, deep voice, and careful pronunciation reminded me of Sunday mornings when I was little, sitting on his lap and listening to him read all the voices in the Sunday comics to me. Comparing that man with who he was now made my heart hurt.
“Hi, Dad. How’s it going? Did you do anything fun today?“ I always tried to put him in a good mood.
“Fun? No, not really. I walked around the neighborhood and down to the beach to watch the ducks. Had some lunch.“
“Okay, Dad. Well, I’m at work so I have to go, but thanks for calling. Take care of yourself, and I’ll talk to you tomorrow.“
“Okay. Am I supposed to call you tomorrow?“
“Yes. Put it on your calendar and give me a call in the afternoon.“ This type of exchange became all too familiar; phrases and questions repeated, answers immediately forgotten. I would come to understand that this was the litany of dementia, an exchange of love marred by disconnection. Emotionally, I was having problems with the situation. Like my father, I was denying what was happening, only in my own way. I wanted him to be my parent, opinionated, authoritative, and able to care for himself like a normal adult. The reality, of course, was that he was ill, even though he denied it. He had become disoriented, depressed, and unable to manage his life.
But I still needed him to be my parent. He was the last one I had and I was not ready to let go of that. I was completely unprepared to parent him. I was so angry with him, it felt as if he was escaping from his life, escaping from responsibility. I would have no choice but to care for a man who had not cared for me at certain times in my life when I had most needed it. I was bitter at the thought that I would be required to use my limited energy and time, and perhaps exacerbate my chronic illness, to look after this evasive, exhausting man who wouldn’t even acknowledge that there was a problem. I could not face switching roles."
“This is Joy”
“Hi, its Dad.“ Hearing his measured tone, deep voice, and careful pronunciation reminded me of Sunday mornings when I was little, sitting on his lap and listening to him read all the voices in the Sunday comics to me. Comparing that man with who he was now made my heart hurt.
“Hi, Dad. How’s it going? Did you do anything fun today?“ I always tried to put him in a good mood.
“Fun? No, not really. I walked around the neighborhood and down to the beach to watch the ducks. Had some lunch.“
“Okay, Dad. Well, I’m at work so I have to go, but thanks for calling. Take care of yourself, and I’ll talk to you tomorrow.“
“Okay. Am I supposed to call you tomorrow?“
“Yes. Put it on your calendar and give me a call in the afternoon.“ This type of exchange became all too familiar; phrases and questions repeated, answers immediately forgotten. I would come to understand that this was the litany of dementia, an exchange of love marred by disconnection. Emotionally, I was having problems with the situation. Like my father, I was denying what was happening, only in my own way. I wanted him to be my parent, opinionated, authoritative, and able to care for himself like a normal adult. The reality, of course, was that he was ill, even though he denied it. He had become disoriented, depressed, and unable to manage his life.
But I still needed him to be my parent. He was the last one I had and I was not ready to let go of that. I was completely unprepared to parent him. I was so angry with him, it felt as if he was escaping from his life, escaping from responsibility. I would have no choice but to care for a man who had not cared for me at certain times in my life when I had most needed it. I was bitter at the thought that I would be required to use my limited energy and time, and perhaps exacerbate my chronic illness, to look after this evasive, exhausting man who wouldn’t even acknowledge that there was a problem. I could not face switching roles."
Monday, November 8, 2010
New Chair
I got a call from Dad's caregiver the other day. Apparently, Dad's lounge chair was broken and old and the caregiver wanted to get him another chair. One of his residents had a chair that she had used for a month but she was now in a nursing home and wasn't using it. He described the chair as being a great deal, then he put the woman's daughter on the phone and we chatted for a little while on the phone. She described the chair, a Lazy-Boy designed for geriatric use with a massage function and a heater inside. She offered the chair to me for $400. I was a little taken aback at the rapidity of the transaction and told her it sounded great but that I would make time to come see the chair and decide then.
After she put the caregiver back on the phone, I couldn't help but be a little upset at how I perceived this was being pushed on me, and I'm sure my voice was a little firm when I asked if this was really something Dad needed right now. But then he said something that stopped me in my tracks. He said that certainly, Dad's old chair could function for a little while adequately, but that he was looking ahead to the future when Dad would most likely be spending more time in the chair and might need the special features it offered. This, of course, was something that should have occurred to me but just doesn't. I'm very lucky to have someone there who IS thinking these things and has more experience. A little subdued, I told him I would come look at the chair and let him know, but I probably will buy it. It just brought home to me once again that this process has only one ending, and we're moving toward that ending more and more quickly.
After she put the caregiver back on the phone, I couldn't help but be a little upset at how I perceived this was being pushed on me, and I'm sure my voice was a little firm when I asked if this was really something Dad needed right now. But then he said something that stopped me in my tracks. He said that certainly, Dad's old chair could function for a little while adequately, but that he was looking ahead to the future when Dad would most likely be spending more time in the chair and might need the special features it offered. This, of course, was something that should have occurred to me but just doesn't. I'm very lucky to have someone there who IS thinking these things and has more experience. A little subdued, I told him I would come look at the chair and let him know, but I probably will buy it. It just brought home to me once again that this process has only one ending, and we're moving toward that ending more and more quickly.
Wednesday, November 3, 2010
Personal Post
I'm so excited! According to my hit counter on my blog, I just passed 2000 hits! I realize for some blogs that may not be much, but its a huge deal for me. Thank you to all the people reading the blog and sending me their lovely comments.
In other good news, I've found a site through which to self-publish my book and I'm hoping to have it as good as done by the end of November. I'm planning to hook it to my blog so that you can click on the link and go directly to Amazon if you so desire. Just finished the cover design and it looks good! I'll also be setting up some readings at local bookstores (hopefully!) and will be posting those so people can attend if they can. Again, thank you for your support.
In other good news, I've found a site through which to self-publish my book and I'm hoping to have it as good as done by the end of November. I'm planning to hook it to my blog so that you can click on the link and go directly to Amazon if you so desire. Just finished the cover design and it looks good! I'll also be setting up some readings at local bookstores (hopefully!) and will be posting those so people can attend if they can. Again, thank you for your support.
Saturday, October 30, 2010
Book Excerpt
“Does he still remember you?“ This is what people asked, in a consolatory yet avidly curious way, whenever I told them about Dad’s Alzheimer’s.
“Well, he doesn’t always remember my name - at least he doesn’t say it very often - but he always seems to know that he knows me.“ I always responded. For many, this one thing, this inevitable occurrence of forgetting, represented the disease. It was the poster moment, if you will, for the horror of Alzheimer’s. The single thing most people both understood and feared.
Interestingly, to me it was the least important aspect of the disease. I already knew what it was like not to be known by Dad, since he wasn’t really present through much of my life. But even when Dad didn’t know me, I’d still be a part of him. What was harder was giving up all hope of ever having the father I really needed and wanted.
It continued to surprise me how much I actually enjoyed spending time with Dad, although I realized anew that he was a stranger to me, and I a stranger to him. There was something restful about being with him. He accepted me pretty much as I was, we could talk or not depending on how we felt. The unfortunate side effect of this was that sometimes I felt like I got very little intelligent conversation and wasn’t using my brain, a sensation most likely familiar to new mothers. I felt it come instinctively to me, how to deal with him, how to speak to him, which surprised me. Being his caretaker proved just as boring and tedious and sometimes horrifying as I expected, but I found hidden benefits as well. I just took him as he was, and I had decided before I even moved in with Dad that I would never correct him or try to orient him in my reality."
“Well, he doesn’t always remember my name - at least he doesn’t say it very often - but he always seems to know that he knows me.“ I always responded. For many, this one thing, this inevitable occurrence of forgetting, represented the disease. It was the poster moment, if you will, for the horror of Alzheimer’s. The single thing most people both understood and feared.
Interestingly, to me it was the least important aspect of the disease. I already knew what it was like not to be known by Dad, since he wasn’t really present through much of my life. But even when Dad didn’t know me, I’d still be a part of him. What was harder was giving up all hope of ever having the father I really needed and wanted.
It continued to surprise me how much I actually enjoyed spending time with Dad, although I realized anew that he was a stranger to me, and I a stranger to him. There was something restful about being with him. He accepted me pretty much as I was, we could talk or not depending on how we felt. The unfortunate side effect of this was that sometimes I felt like I got very little intelligent conversation and wasn’t using my brain, a sensation most likely familiar to new mothers. I felt it come instinctively to me, how to deal with him, how to speak to him, which surprised me. Being his caretaker proved just as boring and tedious and sometimes horrifying as I expected, but I found hidden benefits as well. I just took him as he was, and I had decided before I even moved in with Dad that I would never correct him or try to orient him in my reality."
Book Excerpt
“Does he still remember you?“ This is what people asked, in a consolatory yet avidly curious way, whenever I told them about Dad’s Alzheimer’s.
“Well, he doesn’t always remember my name - at least he doesn’t say it very often - but he always seems to know that he knows me.“ I always responded. For many, this one thing, this inevitable occurrence of forgetting, represented the disease. It was the poster moment, if you will, for the horror of Alzheimer’s. The single thing most people both understood and feared.
Interestingly, to me it was the least important aspect of the disease. I already knew what it was like not to be known by Dad, since he wasn’t really present through much of my life. But even when Dad didn’t know me, I’d still be a part of him. What was harder was giving up all hope of ever having the father I really needed and wanted.
It continued to surprise me how much I actually enjoyed spending time with Dad, although I realized anew that he was a stranger to me, and I a stranger to him. There was something restful about being with him. He accepted me pretty much as I was, we could talk or not depending on how we felt. The unfortunate side effect of this was that sometimes I felt like I got very little intelligent conversation and wasn’t using my brain, a sensation most likely familiar to new mothers. I felt it come instinctively to me, how to deal with him, how to speak to him, which surprised me. Being his caretaker proved just as boring and tedious and sometimes horrifying as I expected, but I found hidden benefits as well. I just took him as he was, and I had decided before I even moved in with Dad that I would never correct him or try to orient him in my reality."
“Well, he doesn’t always remember my name - at least he doesn’t say it very often - but he always seems to know that he knows me.“ I always responded. For many, this one thing, this inevitable occurrence of forgetting, represented the disease. It was the poster moment, if you will, for the horror of Alzheimer’s. The single thing most people both understood and feared.
Interestingly, to me it was the least important aspect of the disease. I already knew what it was like not to be known by Dad, since he wasn’t really present through much of my life. But even when Dad didn’t know me, I’d still be a part of him. What was harder was giving up all hope of ever having the father I really needed and wanted.
It continued to surprise me how much I actually enjoyed spending time with Dad, although I realized anew that he was a stranger to me, and I a stranger to him. There was something restful about being with him. He accepted me pretty much as I was, we could talk or not depending on how we felt. The unfortunate side effect of this was that sometimes I felt like I got very little intelligent conversation and wasn’t using my brain, a sensation most likely familiar to new mothers. I felt it come instinctively to me, how to deal with him, how to speak to him, which surprised me. Being his caretaker proved just as boring and tedious and sometimes horrifying as I expected, but I found hidden benefits as well. I just took him as he was, and I had decided before I even moved in with Dad that I would never correct him or try to orient him in my reality."
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