I am finding the reactions of people to me, since Daddy passed, quite interesting.
There has been outpouring of love and affection from some, avoidance from some, and some who act like nothing has changed. I am sure, a lot of people don't know what to say. They understand that I have to work through this on my own. There are those who just talk about themselves and have yet to ask how I am doing. What the deal is with that, I am not quite sure. I have to say again, you find out who your true friends are during times of trial and crisis.
One of the things that gets the hairs on the back of my neck standing up, is those people who say "But, Julie.. he is in a better place now". I understand why they say that and what they mean. But, I want my Daddy and my Momma back here with me, the way they used to be. I want them happy, healthy, and more than anything... HERE with me. I know in my heart, I am truly glad they are not suffering any longer. Daddy suffered more, than I will ever be able to adequately make somebody understand, unless they were standing there, watching with me. I know they mean well, and I am doing my best not to punch them in they eye.. so far, so good on the punching in the eye.
I am relieved that the suffering is over. I fully intend on taking advantage of the grief counseling that will be made available to me, by hospice. They will help me sort through the emotions that I am having on an almost hourly basis. I have had so many people suggest that grief counseling is the way to go, and I am thankful for that. It reinforces my need and desire to go through that process.
I have also decided, if somebody I know, loses a loved one, I am never going to say "they are in a better place". Although it may be true, it is not what the person grieving, wants to hear. Well, at least it is not what I want to hear....
Tuesday, January 31, 2012
Monday, January 30, 2012
Depression..
Depression. It is a funny business. I have fought depression over other things, my whole life. Being sick for so many years, not being able to run around and play like I wanted to, with my son. Not being able to do much of anything for so many years, except watch everybody else do the things I wanted to do. I thought that was the worst of my personal depression.
How wrong I was. This is depression. I am completely lost. I feel like I have to be busy all the time. I am so used to being on a dead run, that even the running around getting all the legal things and final arrangements for the burial, is nothing. I have too much time. I am exhausted, losing weight at a rapid pace, and just completely lost. I honestly don't know what to do with myself.
I have spent three years, taking care of somebody who is no longer here to take care of. What do I do? I still have the house to clean out, the shop, the attic, and all the rest of the things, that go along with the death of a loved one. But, I have time now. I have time to clean my own house, time to do the repairs and home improvements I have been wanting to do, and need to finish, time to work again, time to spend with my family.
So, why do I feel so lost? I have been needing this time, and wanting this time. I have it now, and I have no idea what to do with it. I suppose it will take an adjustment period to sort all this out. I hope this is a quick adjustment period. I do not like feeling this way. I am so tired, but can't really sleep. Hopefully with a little rest, my mood with sort itself out.
How wrong I was. This is depression. I am completely lost. I feel like I have to be busy all the time. I am so used to being on a dead run, that even the running around getting all the legal things and final arrangements for the burial, is nothing. I have too much time. I am exhausted, losing weight at a rapid pace, and just completely lost. I honestly don't know what to do with myself.
I have spent three years, taking care of somebody who is no longer here to take care of. What do I do? I still have the house to clean out, the shop, the attic, and all the rest of the things, that go along with the death of a loved one. But, I have time now. I have time to clean my own house, time to do the repairs and home improvements I have been wanting to do, and need to finish, time to work again, time to spend with my family.
So, why do I feel so lost? I have been needing this time, and wanting this time. I have it now, and I have no idea what to do with it. I suppose it will take an adjustment period to sort all this out. I hope this is a quick adjustment period. I do not like feeling this way. I am so tired, but can't really sleep. Hopefully with a little rest, my mood with sort itself out.
Saturday, January 28, 2012
The Ram...
Yesterday we traded in Daddy's Ram. I couldn't drive that truck anymore. It is funny how an "object" can make you feel so conflicted. Every time I got in it, I got such weird feelings. It was Daddy's baby, his absolute pride and joy. But, it was his pride and joy, not mine.
He gave me that truck awhile back, because he couldn't drive anymore. Daddy being Daddy, didn't ask if I wanted it, liked it, or anything like that. That was not his way. Since it was his pride and joy, it was supposed to be my pride and joy. Not even close.
I am a rather small person. I am 5' 4" tall, and weigh around 100 pounds. Getting in and out of that truck was a job. I almost needed a step stool to get in the thing. I had to jump down to get out of it. Scott passed me not long ago, when I was in town, and he was coming home. He said I looked like a "munchkin" in that truck. No doubt!
Daddy would go out every day, and make sure the wheels were clean, the tires were shined, and take a cloth and run it over the whole truck. I haven't cleaned the thing, since I have been driving it. He was rather disappointed in me, but I told him, he was keeping me quite busy, and I didn't have time to do all that.
The feelings I have had since he passed away for that truck, have been so strange. I just had to get rid of it. As soon as possible, I had to get rid of it. The reasons are mine, and really make no sense. Maybe some of it was I wished I was his pride and joy instead of that truck. I may have been, but it was never verbalized to me. Whatever my thinking is on this, it really doesn't matter. The truck is gone, and I am very happy about that. We bought a brand new Ford Fusion SEL, which gets much better gas mileage and looks like the space shuttle on the inside. The car is a much better fit for me and my needs.
We are probably keeping his Durango, since it works well as our family traveling vehicle. I am very satisfied with my decision, and so is Scott. He completely understood my need to be rid of the Ram.
I feel very positive about my decision to trade it, and I have a car I love.
He gave me that truck awhile back, because he couldn't drive anymore. Daddy being Daddy, didn't ask if I wanted it, liked it, or anything like that. That was not his way. Since it was his pride and joy, it was supposed to be my pride and joy. Not even close.
I am a rather small person. I am 5' 4" tall, and weigh around 100 pounds. Getting in and out of that truck was a job. I almost needed a step stool to get in the thing. I had to jump down to get out of it. Scott passed me not long ago, when I was in town, and he was coming home. He said I looked like a "munchkin" in that truck. No doubt!
Daddy would go out every day, and make sure the wheels were clean, the tires were shined, and take a cloth and run it over the whole truck. I haven't cleaned the thing, since I have been driving it. He was rather disappointed in me, but I told him, he was keeping me quite busy, and I didn't have time to do all that.
The feelings I have had since he passed away for that truck, have been so strange. I just had to get rid of it. As soon as possible, I had to get rid of it. The reasons are mine, and really make no sense. Maybe some of it was I wished I was his pride and joy instead of that truck. I may have been, but it was never verbalized to me. Whatever my thinking is on this, it really doesn't matter. The truck is gone, and I am very happy about that. We bought a brand new Ford Fusion SEL, which gets much better gas mileage and looks like the space shuttle on the inside. The car is a much better fit for me and my needs.
We are probably keeping his Durango, since it works well as our family traveling vehicle. I am very satisfied with my decision, and so is Scott. He completely understood my need to be rid of the Ram.
I feel very positive about my decision to trade it, and I have a car I love.
Tuesday, January 24, 2012
Feeling a little sick...
So in going through the legal maze I have to go through during this time, I went to the bank to sign some papers and change the address on his accounts, so the statements come to my house versus his house.
Well, I went back and got the statements for his money market account for the last two years. I wish to God, I had not done that. I mean... I really wish to God, I had not done that.
I love my Daddy. Do not get me wrong. I realize he was sick with the COPD for the last 5 years or so. I am coming to realize that the man was much sicker than anybody realized. That has to be the answer for what I have discovered. At least, that is what I am going with right now.
I am thinking the cancer was already metastasizing in his brain long before the original diagnosis of the lung mass.One year and four months ago, is when I started seeing the pattern begin, as I start looking through the bank statements. I am sitting there at my desk, with tears just running down my cheeks, not believing what I am seeing.
My Daddy spent over $20,000.00 in one year and 4 months. Not on medical care. Not on any sort of redoing his house. Not on anything that was worth that amount of money in that short of a period of time. He bought guns, ammunition, knives, clothes, and God only knows what else. I haven't gone to see exactly what he spent it all on. I am sick to my stomach. I should have known something was wrong. I should have seen signs of something. I should have done something to reign him in.
But, I had no idea. No idea whatsoever. None. I just assumed that he was spending a little here and there on what he wanted, and that was his money to do with as he pleased. It was not my business. Well, I should have made it my business. I should have forced the issue and said Daddy.. let me see your bank statements. But, I never questioned Daddy on his spending habits, like I said, that was his business.
Now, in looking over these statements, and looking back on how he was, how he was acting, and the new things that showed up (and the neighbors account of how UPS came all the time), I just am sick.
I have never cared about money. We live very frugally, and not beyond our means. My medical bills over the years, have taught us that. I would rather have him here than have any money that he has left me. But, looking at this I just am at a total loss to understand. Only thing I can come up with is he was sick. He was sick.
Well, I went back and got the statements for his money market account for the last two years. I wish to God, I had not done that. I mean... I really wish to God, I had not done that.
I love my Daddy. Do not get me wrong. I realize he was sick with the COPD for the last 5 years or so. I am coming to realize that the man was much sicker than anybody realized. That has to be the answer for what I have discovered. At least, that is what I am going with right now.
I am thinking the cancer was already metastasizing in his brain long before the original diagnosis of the lung mass.One year and four months ago, is when I started seeing the pattern begin, as I start looking through the bank statements. I am sitting there at my desk, with tears just running down my cheeks, not believing what I am seeing.
My Daddy spent over $20,000.00 in one year and 4 months. Not on medical care. Not on any sort of redoing his house. Not on anything that was worth that amount of money in that short of a period of time. He bought guns, ammunition, knives, clothes, and God only knows what else. I haven't gone to see exactly what he spent it all on. I am sick to my stomach. I should have known something was wrong. I should have seen signs of something. I should have done something to reign him in.
But, I had no idea. No idea whatsoever. None. I just assumed that he was spending a little here and there on what he wanted, and that was his money to do with as he pleased. It was not my business. Well, I should have made it my business. I should have forced the issue and said Daddy.. let me see your bank statements. But, I never questioned Daddy on his spending habits, like I said, that was his business.
Now, in looking over these statements, and looking back on how he was, how he was acting, and the new things that showed up (and the neighbors account of how UPS came all the time), I just am sick.
I have never cared about money. We live very frugally, and not beyond our means. My medical bills over the years, have taught us that. I would rather have him here than have any money that he has left me. But, looking at this I just am at a total loss to understand. Only thing I can come up with is he was sick. He was sick.
Monday, January 23, 2012
Immediate Aftermath...
Well, it has been 2 days since Daddy passed. I had a pretty good day yesterday, however today, has been an emotional roller coaster.
All normal, from what everybody tells me. One thing I want everybody to understand, is when my Momma passed 3 years ago, I never had a chance to mourn her properly. Daddy really wouldn't let me. Immediately after the funeral, we had to go get my name put on everything. The house, banks accounts, cars, ATV, everything. We had to go get new will's made for him, and power of attorney.. all the legal things were finished exactly one month after she passed away.
I tried to get him to grieve, even to go to grief counseling. All to no avail. I needed to go to the grief counseling, and told him so. I said, if we went together, it would be good for both of us. It would help us through these emotions, and we could in turn, help each other. He would not hear of it. He said I didn't need it either. That I was a tough girl, and I didn't need somebody to sort through the emotions with me. So not true!!
He was sick before she passed. He got progressively worse after he lost her. Everybody who knows the man, is surprised he lived this long, after her.
So in not being able to mourn her, I am mourning her and him, at the same time now. I think, if possible, her more than him. I was terribly close to my Momma. She was my best friend. Everybody who knew that woman, loved her immediately. I was not a Daddy's girl. I was a Momma's girl.
I went down, alone today, to their house. It was a funny feeling. No Momma. No Daddy. Just me. I went from room to room, looking at their things they collected over the course of their lives, and realized the process of grieving has FINALLY begun for me... for both of them.
Those of you who don't know my Daddy, probably won't understand any of this. Hell, I don't understand it myself. He missed her, and mourned her in his own way, without giving me the opportunity to do so myself. That was not a fair thing for him to do, but he knew no other way. He needed me to take care of him, and maybe he figured I wouldn't be able to do that, if I was mourning Momma. I just don't know.
I do know, that finally my chance has arrived. I talked to her today, in every room of their house. I remembered all sorts of crazy things we had done together and told her so. I told him, a lot of these same things, as well.
Grief is a strange emotion. There are the "guidelines" which we follow. Everybody follows those in their own way. My time to do it, my way, is here. So all the emotions seems to be doubled for me right now. Good thing or bad thing? Who knows, and frankly, who cares. I am doing it my way, and I have never done anything like anybody else.
RIP Momma and Daddy.
All normal, from what everybody tells me. One thing I want everybody to understand, is when my Momma passed 3 years ago, I never had a chance to mourn her properly. Daddy really wouldn't let me. Immediately after the funeral, we had to go get my name put on everything. The house, banks accounts, cars, ATV, everything. We had to go get new will's made for him, and power of attorney.. all the legal things were finished exactly one month after she passed away.
I tried to get him to grieve, even to go to grief counseling. All to no avail. I needed to go to the grief counseling, and told him so. I said, if we went together, it would be good for both of us. It would help us through these emotions, and we could in turn, help each other. He would not hear of it. He said I didn't need it either. That I was a tough girl, and I didn't need somebody to sort through the emotions with me. So not true!!
He was sick before she passed. He got progressively worse after he lost her. Everybody who knows the man, is surprised he lived this long, after her.
So in not being able to mourn her, I am mourning her and him, at the same time now. I think, if possible, her more than him. I was terribly close to my Momma. She was my best friend. Everybody who knew that woman, loved her immediately. I was not a Daddy's girl. I was a Momma's girl.
I went down, alone today, to their house. It was a funny feeling. No Momma. No Daddy. Just me. I went from room to room, looking at their things they collected over the course of their lives, and realized the process of grieving has FINALLY begun for me... for both of them.
Those of you who don't know my Daddy, probably won't understand any of this. Hell, I don't understand it myself. He missed her, and mourned her in his own way, without giving me the opportunity to do so myself. That was not a fair thing for him to do, but he knew no other way. He needed me to take care of him, and maybe he figured I wouldn't be able to do that, if I was mourning Momma. I just don't know.
I do know, that finally my chance has arrived. I talked to her today, in every room of their house. I remembered all sorts of crazy things we had done together and told her so. I told him, a lot of these same things, as well.
Grief is a strange emotion. There are the "guidelines" which we follow. Everybody follows those in their own way. My time to do it, my way, is here. So all the emotions seems to be doubled for me right now. Good thing or bad thing? Who knows, and frankly, who cares. I am doing it my way, and I have never done anything like anybody else.
RIP Momma and Daddy.
Sunday, January 22, 2012
The end of one journey, and the beginning of another...
Daddy's journey ended yesterday at 5:10pm.
I was standing by his side when he went, with Scott holding me up, by my side. I wish I could say it was peaceful, but it really wasn't. I can't go there right now, but his fight is over, and that is all that matters.
I had already called the nurse from Hospice, and she was on her way. When she got there, she checked him, called the coroner, and the funeral home, and began the process of getting him ready for them. She was wonderful in the way she took care of him, cleaned him up, redressed him, and covered him up, so it was like he was sleeping. Thank heavens for her. I couldn't have done that. She destroyed all of his medicine, which I had not thought of. She was wonderful.
The funeral home came, and got the information they needed from me, and took him away. I had to leave the room for that. I couldn't watch them take him away. We go today at 3 to make the arrangements.
We finally made it home at around 9. I was so glad to finally be home. I slept in my own bed, with my wonderful husband, which was such a pleasure.
I am so exhausted it is not even funny. I am bruised all over, from moving him around these last few days. I hurt all over, from moving him around and lifting him. My brain feels like it is covered in fuzz.
Now, we begin the journey of making arrangements, getting the paperwork done, and whatever else we have to do to finish the original journey that we have been on the last three years.
I can only hope, that I did what I was supposed to do, in the way I was supposed to do it. I feel like I did right. I feel like I did everything I could for him. I had the fortitude to see it through to the very end, which I wasn't sure I had. I had the support of all of my family and friends to hold me up, listen to my complaints, support me through each step, and just to love me.
Rest in peace, Daddy.
I was standing by his side when he went, with Scott holding me up, by my side. I wish I could say it was peaceful, but it really wasn't. I can't go there right now, but his fight is over, and that is all that matters.
I had already called the nurse from Hospice, and she was on her way. When she got there, she checked him, called the coroner, and the funeral home, and began the process of getting him ready for them. She was wonderful in the way she took care of him, cleaned him up, redressed him, and covered him up, so it was like he was sleeping. Thank heavens for her. I couldn't have done that. She destroyed all of his medicine, which I had not thought of. She was wonderful.
The funeral home came, and got the information they needed from me, and took him away. I had to leave the room for that. I couldn't watch them take him away. We go today at 3 to make the arrangements.
We finally made it home at around 9. I was so glad to finally be home. I slept in my own bed, with my wonderful husband, which was such a pleasure.
I am so exhausted it is not even funny. I am bruised all over, from moving him around these last few days. I hurt all over, from moving him around and lifting him. My brain feels like it is covered in fuzz.
Now, we begin the journey of making arrangements, getting the paperwork done, and whatever else we have to do to finish the original journey that we have been on the last three years.
I can only hope, that I did what I was supposed to do, in the way I was supposed to do it. I feel like I did right. I feel like I did everything I could for him. I had the fortitude to see it through to the very end, which I wasn't sure I had. I had the support of all of my family and friends to hold me up, listen to my complaints, support me through each step, and just to love me.
Rest in peace, Daddy.
Saturday, January 21, 2012
The Waiting
As of yesterday at around 2pm, Daddy went on the Morphine pump. He has stopped input and output of any liquids or solids. The nurses from Hospice were here 3 times yesterday to check on him, to hook up the pump, and make sure things were going as smoothly as possible.
He is close to death. Probably within the next 24 hours. Although, nobody knows exactly when, except the Big Man upstairs. So, we are waiting. Waiting for the pain, and suffering to end. We took shifts last night watching him. We only have to administer Xanax, by crushing it up, adding a little water, and using the syringe - slowing dripping it into his mouth. That seems to help a great deal with the spasms he seems to be having.
We did get a little bit of sleep, in 2 hour bursts. We are running on pure adrenaline now.
At least the pain is eased, with the Morphine pump. They increased the dosage around 6pm last night and that helped immensely. As long as we administer the Xanax every 2 hours, the spasms seem to be eased as well.
I will describe the process that we have witnessed in another blog. Things are too raw as of right now. I am honestly and truly just ready for him to go. I have told him to go be with my Momma, we will be ok, and they can watch over us from heaven.
Although nobody knows exactly when he will pass, the nurse (and I agree with her, after reading some of the literature that Hospice has provided), figures we are looking at 24-48 hours. I just hope, this ends for him soon. And for us, as well. This has been so painful to watch.
Please keep the thoughts, prayers, mojo, and whatever else you can, coming our way.
He is close to death. Probably within the next 24 hours. Although, nobody knows exactly when, except the Big Man upstairs. So, we are waiting. Waiting for the pain, and suffering to end. We took shifts last night watching him. We only have to administer Xanax, by crushing it up, adding a little water, and using the syringe - slowing dripping it into his mouth. That seems to help a great deal with the spasms he seems to be having.
We did get a little bit of sleep, in 2 hour bursts. We are running on pure adrenaline now.
At least the pain is eased, with the Morphine pump. They increased the dosage around 6pm last night and that helped immensely. As long as we administer the Xanax every 2 hours, the spasms seem to be eased as well.
I will describe the process that we have witnessed in another blog. Things are too raw as of right now. I am honestly and truly just ready for him to go. I have told him to go be with my Momma, we will be ok, and they can watch over us from heaven.
Although nobody knows exactly when he will pass, the nurse (and I agree with her, after reading some of the literature that Hospice has provided), figures we are looking at 24-48 hours. I just hope, this ends for him soon. And for us, as well. This has been so painful to watch.
Please keep the thoughts, prayers, mojo, and whatever else you can, coming our way.
Friday, January 20, 2012
Nitty Gritty...
Wow.. we are getting down to the nitty gritty here. I hope I have the fortitude to see this through. I think I can safely say, this is the hardest thing I have ever done.
Three years ago, I watched my Momma pass away in the hospital. That was heartbreaking to say the least. But, she was in the hospital. She was being cared for by professionals. All I had to do was be there for her.
The hospice experience is totally different than the hospital experience. His care is up to me. I am not a professional. I am a child, watching their parent suffer and wither away before my eyes, while I try to take care of him at the same time. Do not mistake that statement. Hospice has been a life saver, and a huge help. All I am saying, is the experience is completely different.
Some of the things I may describe next, may not be for the faint of heart, or weak of the stomach. But, this is my blog, and I do this to get out my feelings and to make myself feel better. Leave now, if you would prefer to not read what I have to say about what is going on.
The last 48 hours have been a whirlwind of emotions. Tears one minute, and anger the next. Helplessness and impotency mixed with fear, and now the wish that this just be over as fast as possible.
He has been able to get to the bedside potty twice (which is another story for another day), with a huge amount of effort and help from me. He recognizes he needs to go, and that is good in a way. We can't decide if it is awareness of his body, or just a "reflex". He has had no food, and only a few sips of Ginger Ale for 2 days. Now, he can't seem to swallow without choking, so we are trying little tiny sips, and the little swabs that you wet, and moisten his mouth with. His body is withering, literally, in front of my eyes. There is no recognition in his eyes except for a few seconds when he wakes up. The blank stare is almost impossible to watch. His eyes are not right. I can't decide if they are even looking in the same direction really. They just aren't right. His skin is not the right color. I can't describe it exactly... possibly a gray tint, or something along those lines. The moaning and twitching are maybe a little better. It is hard to tell if it is pain, or if it is just something that happens at the end of life. His body is fighting tooth and nail to just breath, so some of that may just be him trying to get air. He is doing weird things with his hands, I tease him and ask if he is knitting. I have no clue what he is really doing. His feet are turning a purple color, which is the mottling of the skin, they said is normal.
The nurse yesterday, said his BP and Pulse were good. His breathing is very erratic, however. He does stop breathing for around 15 - 20 seconds at a time. We are no longer taking daily meds. He can't swallow the pills, and honestly who gives a flip if his prostate is big or little.. it no longer matters. The only medicine we are giving is the Morphine liquid. I administer that, with a syringe into this mouth, and it is absorbed through the mucous membranes there, and works pretty quickly. It helps ease his respiration's as well as pain. We have upped his dose, and that seemed to help. I did have to call again, and ask if we could up the dosage again. He was coming out of the bed hollering. We have now upped the dose to every hour, with a crushed up Xanax in there as well.
Death is not imminent, however it is close. I think a couple of days at the most. These will be the longest days of my life so far, and I have had a very interesting life.
My wonderful husband took last night off, to help me (or yesterday since it is the am). Thank God for that man. We are taking watches, since I administer the morphine every hour. Well, we are supposed to be taking shifts. We have both been up all night. But, we are here for each other, and that is worth more than sleep any day! He will probably take tonight off as well. I would never ask him, but to have him here with me so I am not alone, is priceless.
Again, I would like to thank everybody for the support. It means the world to me to know I have people supporting me through this.
Three years ago, I watched my Momma pass away in the hospital. That was heartbreaking to say the least. But, she was in the hospital. She was being cared for by professionals. All I had to do was be there for her.
The hospice experience is totally different than the hospital experience. His care is up to me. I am not a professional. I am a child, watching their parent suffer and wither away before my eyes, while I try to take care of him at the same time. Do not mistake that statement. Hospice has been a life saver, and a huge help. All I am saying, is the experience is completely different.
Some of the things I may describe next, may not be for the faint of heart, or weak of the stomach. But, this is my blog, and I do this to get out my feelings and to make myself feel better. Leave now, if you would prefer to not read what I have to say about what is going on.
The last 48 hours have been a whirlwind of emotions. Tears one minute, and anger the next. Helplessness and impotency mixed with fear, and now the wish that this just be over as fast as possible.
He has been able to get to the bedside potty twice (which is another story for another day), with a huge amount of effort and help from me. He recognizes he needs to go, and that is good in a way. We can't decide if it is awareness of his body, or just a "reflex". He has had no food, and only a few sips of Ginger Ale for 2 days. Now, he can't seem to swallow without choking, so we are trying little tiny sips, and the little swabs that you wet, and moisten his mouth with. His body is withering, literally, in front of my eyes. There is no recognition in his eyes except for a few seconds when he wakes up. The blank stare is almost impossible to watch. His eyes are not right. I can't decide if they are even looking in the same direction really. They just aren't right. His skin is not the right color. I can't describe it exactly... possibly a gray tint, or something along those lines. The moaning and twitching are maybe a little better. It is hard to tell if it is pain, or if it is just something that happens at the end of life. His body is fighting tooth and nail to just breath, so some of that may just be him trying to get air. He is doing weird things with his hands, I tease him and ask if he is knitting. I have no clue what he is really doing. His feet are turning a purple color, which is the mottling of the skin, they said is normal.
The nurse yesterday, said his BP and Pulse were good. His breathing is very erratic, however. He does stop breathing for around 15 - 20 seconds at a time. We are no longer taking daily meds. He can't swallow the pills, and honestly who gives a flip if his prostate is big or little.. it no longer matters. The only medicine we are giving is the Morphine liquid. I administer that, with a syringe into this mouth, and it is absorbed through the mucous membranes there, and works pretty quickly. It helps ease his respiration's as well as pain. We have upped his dose, and that seemed to help. I did have to call again, and ask if we could up the dosage again. He was coming out of the bed hollering. We have now upped the dose to every hour, with a crushed up Xanax in there as well.
Death is not imminent, however it is close. I think a couple of days at the most. These will be the longest days of my life so far, and I have had a very interesting life.
My wonderful husband took last night off, to help me (or yesterday since it is the am). Thank God for that man. We are taking watches, since I administer the morphine every hour. Well, we are supposed to be taking shifts. We have both been up all night. But, we are here for each other, and that is worth more than sleep any day! He will probably take tonight off as well. I would never ask him, but to have him here with me so I am not alone, is priceless.
Again, I would like to thank everybody for the support. It means the world to me to know I have people supporting me through this.
Thursday, January 19, 2012
Getting closer...
Well, I am pretty sure we don't have much longer on this journey Daddy and I have been on together. I think maybe a week or two at the most.
He has eaten nothing but maybe 1 cookie between yesterday and today at lunchtime. He is drinking a little bit, but not much. He has been awake, possibly 3-4 hours total yesterday and today so far. He is not really coherent during that time, either. As of today, I believe he is not going to be able to leave the bed anymore. His legs wouldn't really walk this morning. We had to beg, borrow and plead to get him to get up from his chair, and go back to the bed. Although, he is a stubborn one, he is about done with this fight.
I hope we can get this pain under control. Watching him twitch and moan, grimace, and kick his feet, while he tries to rest, is heart breaking. I am one who always like to fix things for everybody. This I can not fix, and that is so hard for me.
Last night, I slept again, with one eye open. He bolts upright, like he is going to go somewhere, but then falls back down onto the bed. That is a little freaky. He also has to try to go to the bathroom. I have been helping him get up and go to the bathroom, because I think it is good for him to be as mobile as possible. Now, however, is the time, to keep him in the bed... for his safety as well as mine. I am a very small person, and not what you would call strong. I have already hurt my back, and my right shoulder helping him on and off the potty. This is the time for him to go in the diaper or if he can manage, the bedside potty. But, I think even the bedside potty, may be to much for him.
I am also having trouble getting him awake, and coherent enough to get his meds down. He barely got them down this morning. That worries me numerous reasons. The main one, being that he takes Morphine tablets, to ease his respiration's and also to help the pain. I have been giving him the Morphine liquid by mouth, but it does not seem to be doing any good. The nurse is coming by this afternoon and she will be able to help me with that.
We did find a cool solution for him to be able to hold his Ginger Ale. The volunteer who comes by and see's Daddy, suggested a child's sippy cup. We found one with a straw. That works perfectly for somebody as weak and shaky as he is. YAY for the small victories!
The aide was by this morning, and showed me a bunch of tricks for getting the diaper on and off somebody who is bedridden. I just don't now this stuff. So now, I feel a little more confident about what and how to do things for him.
The social worker is also coming by this afternoon. She is a wealth of information, about everything! Which I need.
For some reason, the simple things are not occurring to me. Probably lack of sleep, and stress. But, it is looking like we are close to the end of this journey, and for that I will be grateful for Daddy's sake and my sake as well.
He has eaten nothing but maybe 1 cookie between yesterday and today at lunchtime. He is drinking a little bit, but not much. He has been awake, possibly 3-4 hours total yesterday and today so far. He is not really coherent during that time, either. As of today, I believe he is not going to be able to leave the bed anymore. His legs wouldn't really walk this morning. We had to beg, borrow and plead to get him to get up from his chair, and go back to the bed. Although, he is a stubborn one, he is about done with this fight.
I hope we can get this pain under control. Watching him twitch and moan, grimace, and kick his feet, while he tries to rest, is heart breaking. I am one who always like to fix things for everybody. This I can not fix, and that is so hard for me.
Last night, I slept again, with one eye open. He bolts upright, like he is going to go somewhere, but then falls back down onto the bed. That is a little freaky. He also has to try to go to the bathroom. I have been helping him get up and go to the bathroom, because I think it is good for him to be as mobile as possible. Now, however, is the time, to keep him in the bed... for his safety as well as mine. I am a very small person, and not what you would call strong. I have already hurt my back, and my right shoulder helping him on and off the potty. This is the time for him to go in the diaper or if he can manage, the bedside potty. But, I think even the bedside potty, may be to much for him.
I am also having trouble getting him awake, and coherent enough to get his meds down. He barely got them down this morning. That worries me numerous reasons. The main one, being that he takes Morphine tablets, to ease his respiration's and also to help the pain. I have been giving him the Morphine liquid by mouth, but it does not seem to be doing any good. The nurse is coming by this afternoon and she will be able to help me with that.
We did find a cool solution for him to be able to hold his Ginger Ale. The volunteer who comes by and see's Daddy, suggested a child's sippy cup. We found one with a straw. That works perfectly for somebody as weak and shaky as he is. YAY for the small victories!
The aide was by this morning, and showed me a bunch of tricks for getting the diaper on and off somebody who is bedridden. I just don't now this stuff. So now, I feel a little more confident about what and how to do things for him.
The social worker is also coming by this afternoon. She is a wealth of information, about everything! Which I need.
For some reason, the simple things are not occurring to me. Probably lack of sleep, and stress. But, it is looking like we are close to the end of this journey, and for that I will be grateful for Daddy's sake and my sake as well.
Wednesday, January 18, 2012
Disappointment has a name
There are times, when life and people can be so disappointing. Today was one of those days.
I disappointed myself, by letting Daddy fall while I was here. Not my fault, I understand that. Doesn't matter. He fell while I was supposed to be watching him. Granted, he was bending over trying to pick up something imaginary, and I wasn't even in the room... still, disappointing.
I am seeing the decline become so damn rapid, that it is honestly scaring the hell out me. He was not coherent hardly at all today. The breathing sounded like a marching band was playing in his lungs. He has slept quite a bit today.
I am seeing that he is starting to have pain. That is horrendous to watch. They are giving him pain meds, but as of yet, they don't seem to be helping. Hopefully soon!
I had quite a few disappointments today. You know, sometimes there is that one person that you need talk to. They can always put things in perspective for you, in ways other people can't. So far, that person, has not been there for me. I suppose I should not be surprised. People have other things going on in their lives, besides me and my problems. But, when they say they are always there for you, and then they disappear when you really need them... well, maybe time to reevaluate the friendship. My husband, son, and friends are standing right beside me, holding me up. Giving me the encouragement, support, love, and listening when I need them too. I am thanking God every day, I have each and every single one of them.
It could be, that I am just feeling sorry for myself today again. It has been a day of nothing but problems, tears, pain, and disappointments.
Maybe it is time I put on my bullet proof, big girl panties, and buck up! Hmm.. possibly after a night curled up in a ball crying myself to sleep.
I disappointed myself, by letting Daddy fall while I was here. Not my fault, I understand that. Doesn't matter. He fell while I was supposed to be watching him. Granted, he was bending over trying to pick up something imaginary, and I wasn't even in the room... still, disappointing.
I am seeing the decline become so damn rapid, that it is honestly scaring the hell out me. He was not coherent hardly at all today. The breathing sounded like a marching band was playing in his lungs. He has slept quite a bit today.
I am seeing that he is starting to have pain. That is horrendous to watch. They are giving him pain meds, but as of yet, they don't seem to be helping. Hopefully soon!
I had quite a few disappointments today. You know, sometimes there is that one person that you need talk to. They can always put things in perspective for you, in ways other people can't. So far, that person, has not been there for me. I suppose I should not be surprised. People have other things going on in their lives, besides me and my problems. But, when they say they are always there for you, and then they disappear when you really need them... well, maybe time to reevaluate the friendship. My husband, son, and friends are standing right beside me, holding me up. Giving me the encouragement, support, love, and listening when I need them too. I am thanking God every day, I have each and every single one of them.
It could be, that I am just feeling sorry for myself today again. It has been a day of nothing but problems, tears, pain, and disappointments.
Maybe it is time I put on my bullet proof, big girl panties, and buck up! Hmm.. possibly after a night curled up in a ball crying myself to sleep.
Tuesday, January 17, 2012
Lack of sleep!
Tomorrow will be a week, since I moved in with Daddy. Can you say TIRED? Wow! It seems all I do, is clean up him, after him, wash bedding, clothes, cook, and clean. Which, is exactly what I am doing. Nothing I did not expect.
But, I am getting somewhat grumpy! Probably because of lack of sleep. I sleep very little during the night. There are a few reasons for this. Obviously, my mind won't stop, is the first reason. The second reason, is Scott put the bed rails on the hospital bed. For some unknown reason, this drives Daddy nuts. At night, when he wakes up, he shakes the hell out of that rail, for me to get it off! So, I think I am sleeping with one eye open, to avoid the nightly "rail confrontation" (for his safety or not, he hates that rail). The third reason, is I am sleeping in a chair. I have a La-Z-Boy recliner at home that is like a dream. This chair is like a nightmare! UGH! Scott offered to bring my chair, and I said no. If this goes on much longer, I may take him up on his offer.
Little things are driving me crazy. Things that shouldn't, but are anyway. Daddy has a tendency to fall asleep sitting up. When I go to wake him up, to put him in the bed, or whatever, he says No, he is fine. Then promptly falls asleep sitting up again. We go through this a couple of times a day, sometimes for an hour or so, at a time.
Another thing is he still smokes. So this falling alseep with a cigarette in his hand is another battle we go through a few times a day. I have to watch him like a hawk, to make sure he doesn't drop that cigarette on himself, the bed, or the carpet.
None of this is his fault. He is dying. But, I think my problem is, my patience is running low because of lack of sleep.
During the day, when he naps, I have to try to get the chores, cooking, phone calls, and whatever else done. Then, if there is time, I can catch a nap. But, with the nurses, aides, and whoever else, coming in and out of the house, the nap chances for me are slim.
Other people are getting on my nerves as well. Even though I am stuck in this house 24/7, I talk to people, and see quite a few people every day. Most everybody is great! There are a couple of people who are just driving me crazy. They say.. oh sure, I will be glad to talk to you, then they are unavailable. Luckily I have many friends who are available to talk to, and those who call me everyday to check on things. I thank my lucky stars for them every day. It makes those who do not keep their word, seem so very small and insignificant.
Hopefully we will have a better night than we have had, the last few, and I can get some sleep and get back to some sense of normal and in a decent mood.
But, I am getting somewhat grumpy! Probably because of lack of sleep. I sleep very little during the night. There are a few reasons for this. Obviously, my mind won't stop, is the first reason. The second reason, is Scott put the bed rails on the hospital bed. For some unknown reason, this drives Daddy nuts. At night, when he wakes up, he shakes the hell out of that rail, for me to get it off! So, I think I am sleeping with one eye open, to avoid the nightly "rail confrontation" (for his safety or not, he hates that rail). The third reason, is I am sleeping in a chair. I have a La-Z-Boy recliner at home that is like a dream. This chair is like a nightmare! UGH! Scott offered to bring my chair, and I said no. If this goes on much longer, I may take him up on his offer.
Little things are driving me crazy. Things that shouldn't, but are anyway. Daddy has a tendency to fall asleep sitting up. When I go to wake him up, to put him in the bed, or whatever, he says No, he is fine. Then promptly falls asleep sitting up again. We go through this a couple of times a day, sometimes for an hour or so, at a time.
Another thing is he still smokes. So this falling alseep with a cigarette in his hand is another battle we go through a few times a day. I have to watch him like a hawk, to make sure he doesn't drop that cigarette on himself, the bed, or the carpet.
None of this is his fault. He is dying. But, I think my problem is, my patience is running low because of lack of sleep.
During the day, when he naps, I have to try to get the chores, cooking, phone calls, and whatever else done. Then, if there is time, I can catch a nap. But, with the nurses, aides, and whoever else, coming in and out of the house, the nap chances for me are slim.
Other people are getting on my nerves as well. Even though I am stuck in this house 24/7, I talk to people, and see quite a few people every day. Most everybody is great! There are a couple of people who are just driving me crazy. They say.. oh sure, I will be glad to talk to you, then they are unavailable. Luckily I have many friends who are available to talk to, and those who call me everyday to check on things. I thank my lucky stars for them every day. It makes those who do not keep their word, seem so very small and insignificant.
Hopefully we will have a better night than we have had, the last few, and I can get some sleep and get back to some sense of normal and in a decent mood.
Monday, January 16, 2012
Sometimes it takes come disruption...
Sometimes it takes some disruption in life, to make us realize some things.
My Daddy is a very hard man to deal with. All of my life, I have never been good enough for him. He should have had a son, no question in my mind.
He has always been psychologically and physically distant from me. I rarely got hugs, affection or anything from him when I was a child or as an adult. Which is ok. When you don't have that, you don't really know what you are missing.
I married the antithesis of my Daddy. A man who is very affectionate, loves to hug, snuggle, and be as close to me as he can. So, I guess in my heart, I knew I wanted somebody who was totally different than Daddy.
His nicknames for me are as follows: Brat, Pinhead, and Piglet. All are said with the little affection he can give me, and they can be cute. But, that is a good example of how he thinks of me.
When I was younger, and living at home, his idea of spending time with me was "Come on Brat, let's go change the brakes on the Maxima". That is his idea of spending time with me. Him, doing chores, and me being his gopher. Never once, did we just spend time together, talking or doing any of the things, that I wished now, we would have. I remember once, my Momma said, "Why don't you take her out for ice cream or something fun"? His answer was that was a waste of his time.
I learned to shoot, and may I say, I shoot damn well, because that was something he loved doing. It was my way of trying to be something he wanted me to be. That is time that we did spend together that was fun. That was the only thing, I have ever done, that he has been proud of. He would tell his friends and whoever would listen, that I was an excellent shot.
When I was in the hospital, after my open heart surgery, he came to see me once. That is it. He was too busy to come see me after that one time.
It is funny how you learn things about yourself and others, during sleepless nights and disruption of your everyday life. I am a good person. I am doing something he would never do. I became something he should be proud of. Most people would have stuck him in a nursing home at the first sign of anything that would require the level of care I am giving him. I did not. I am being the person I am, and the person who he helped shape along the way. I am proud of me, whether he is or not.
My Daddy is a very hard man to deal with. All of my life, I have never been good enough for him. He should have had a son, no question in my mind.
He has always been psychologically and physically distant from me. I rarely got hugs, affection or anything from him when I was a child or as an adult. Which is ok. When you don't have that, you don't really know what you are missing.
I married the antithesis of my Daddy. A man who is very affectionate, loves to hug, snuggle, and be as close to me as he can. So, I guess in my heart, I knew I wanted somebody who was totally different than Daddy.
His nicknames for me are as follows: Brat, Pinhead, and Piglet. All are said with the little affection he can give me, and they can be cute. But, that is a good example of how he thinks of me.
When I was younger, and living at home, his idea of spending time with me was "Come on Brat, let's go change the brakes on the Maxima". That is his idea of spending time with me. Him, doing chores, and me being his gopher. Never once, did we just spend time together, talking or doing any of the things, that I wished now, we would have. I remember once, my Momma said, "Why don't you take her out for ice cream or something fun"? His answer was that was a waste of his time.
I learned to shoot, and may I say, I shoot damn well, because that was something he loved doing. It was my way of trying to be something he wanted me to be. That is time that we did spend together that was fun. That was the only thing, I have ever done, that he has been proud of. He would tell his friends and whoever would listen, that I was an excellent shot.
When I was in the hospital, after my open heart surgery, he came to see me once. That is it. He was too busy to come see me after that one time.
It is funny how you learn things about yourself and others, during sleepless nights and disruption of your everyday life. I am a good person. I am doing something he would never do. I became something he should be proud of. Most people would have stuck him in a nursing home at the first sign of anything that would require the level of care I am giving him. I did not. I am being the person I am, and the person who he helped shape along the way. I am proud of me, whether he is or not.
Saturday, January 14, 2012
Let's see if we can find some humor in all of this...
Well, it has been three nights since I moved in here with Daddy. He is going downhill so fast, it is kind of scary. But, I have been able to make him smile and laugh, and that is a wonderful feeling. If you have a weak stomach or do not like bathroom humor, go ahead and stop reading now!
He is now in diapers all the time, not just at night. Which has truly helped me out when it comes to the bedding. No more covers, sheets, and him covered in dookie. Dookie is what we called number two, when Brandon was growing up. We called his butt a Bounkie (Boon-key). While daddy was sitting on the toilet last night, I decided he was he king of dookie! That man can spend 45 minutes just sitting there going to the bathroom. I told him I was going to make him a crown, and declare him the official king of dookie. Which he thought was hilarious.
I sit on the floor in the bathroom, while he goes, because he is so unsteady, he will just topple over when he tries to stand up. Who would have thought we would have some of the funniest, best conversations in the bathroom. Not me!! But, we sure do.
All this got me thinking, it is so funny how people come up with funny names for bathroom habits, and body parts. I would love to hear your nicknames for body parts and bathroom habits!
Another hilarious thing, is when he wakes up at night, he usually has to pee. So we have some of the bottles from the hospital... pee bottles... that he can use so he doesn't have to weeble wobble into the bathroom. I was helping him do that night before last, and he completely missed! I was like "Daddy, how can you miss? You just stick it in there, you don't have to aim or anything". Which he thought was so funny! So, now I make damn sure it is "in there" before he starts going.
So, in all of this there is still humor. He is having serious delusions, and I think it won't be long before he comes bedridden and his mind is totally gone, so I am going to enjoy the hell out of every moment we have, even if a lot of them, are spent in the bathroom.
He is now in diapers all the time, not just at night. Which has truly helped me out when it comes to the bedding. No more covers, sheets, and him covered in dookie. Dookie is what we called number two, when Brandon was growing up. We called his butt a Bounkie (Boon-key). While daddy was sitting on the toilet last night, I decided he was he king of dookie! That man can spend 45 minutes just sitting there going to the bathroom. I told him I was going to make him a crown, and declare him the official king of dookie. Which he thought was hilarious.
I sit on the floor in the bathroom, while he goes, because he is so unsteady, he will just topple over when he tries to stand up. Who would have thought we would have some of the funniest, best conversations in the bathroom. Not me!! But, we sure do.
All this got me thinking, it is so funny how people come up with funny names for bathroom habits, and body parts. I would love to hear your nicknames for body parts and bathroom habits!
Another hilarious thing, is when he wakes up at night, he usually has to pee. So we have some of the bottles from the hospital... pee bottles... that he can use so he doesn't have to weeble wobble into the bathroom. I was helping him do that night before last, and he completely missed! I was like "Daddy, how can you miss? You just stick it in there, you don't have to aim or anything". Which he thought was so funny! So, now I make damn sure it is "in there" before he starts going.
So, in all of this there is still humor. He is having serious delusions, and I think it won't be long before he comes bedridden and his mind is totally gone, so I am going to enjoy the hell out of every moment we have, even if a lot of them, are spent in the bathroom.
Friday, January 13, 2012
Funny how the best laid plans...
Funny, how the best laid plans, never seem to come together. After another sleepless night, and discussions with Scott, we have decided that I will move in with Daddy, instead of the other way around. The following is what I put on FB this morning....
"OK.. here is the deal. I was busy and could not elaborate at the time. It is not fair to Brandon to bring somebody who is dying, into our home like this. Daddy's room would be right by Brandons room, they would have to share the bathroom. And, right now, Daddys bathroom habits are a mess.
Another reason is Scott works at night. He sleeps during the day. We would have nurses, aides, whoever, in and out of the house at all times of the day. That is not fair to Scott.
My goal has been and it will not change.... to keep him out of a nursing home, and at home. If it takes me moving in here to do so, then it will be done. Hospice will still be coming by.
I can't keep going from house to house. That is too much on me. But, if I stay here at his house, it will be easier. Scott and Brandon can figure out what to do at home. They are both capable of taking care of themselves. We would rather do it this way, that cause Brandon any lasting, lingering affects, from the death of my Daddy."
My goal has been and it will not change.... to keep him out of a nursing home, and at home. If it takes me moving in here to do so, then it will be done. Hospice will still be coming by.
I can't keep going from house to house. That is too much on me. But, if I stay here at his house, it will be easier. Scott and Brandon can figure out what to do at home. They are both capable of taking care of themselves. We would rather do it this way, that cause Brandon any lasting, lingering affects, from the death of my Daddy."
My son, who I am not ashamed to say is spoiled ass rotten, can maybe learn some responsibility because of this. At 14 years of age, he can do for himself. My husband is spoiled as well. They can take care of themselves, while my Daddy has nobody but me to take care of him. I can do this. My family can do this. Maybe everybody will learn something along the way.
Thursday, January 12, 2012
A little bit of chaos, goes a long way
So I stayed with Daddy last night, and he still fell out of the bed this morning. He swore he heard the doorbell, which he did not. SIGH...
Just another sign that we are doing the right thing. Scott has taken the next couple of days off work, and while I stay here with Daddy, he is going to get the room cleaned out and ready for us to move Daddy and all his stuff in there.
I have discussed the move with Daddy, and while he doesn't like it, he seems to understand that it will be easier for me, and has agreed to it.
So, while the decision has been made, the chaos of the move is just beginning. What to bring? What has to come versus what he wants to come. Luckily, he only lives 7 miles from me, so if he wants something, it won't be a big deal to come and get it. We are hoping we can have everything ready for him to move, by Sunday... otherwise Monday or Tuesday. As long as he has what he has to have, to start with, we can add to it from there.
Brandon was quite freaked out about this. But, at age 14, I expected nothing less. His big thing, is Daddy is going to "die" in our house. I guess I would have freaked out about that at his age, myself. That is hard to say, but I totally get where he is coming from. So, we are working on making him comfortable about the move... not an easy task. But, when is anything easy?
Hospice was pleased to hear he was going to have around the clock care. The nurse said, that we are not looking at a long time to deal with this, so we will make it all count. She also said, he certainly will get better care from me, than from a nursing home.
So, I feel pretty good about the decision we made, now...on to getting it accomplished with as little fuss as possible. I would also like to take this time, to thank everybody for their ongoing and continued support! It means very much to me, and I thank ya'll for it!
Just another sign that we are doing the right thing. Scott has taken the next couple of days off work, and while I stay here with Daddy, he is going to get the room cleaned out and ready for us to move Daddy and all his stuff in there.
I have discussed the move with Daddy, and while he doesn't like it, he seems to understand that it will be easier for me, and has agreed to it.
So, while the decision has been made, the chaos of the move is just beginning. What to bring? What has to come versus what he wants to come. Luckily, he only lives 7 miles from me, so if he wants something, it won't be a big deal to come and get it. We are hoping we can have everything ready for him to move, by Sunday... otherwise Monday or Tuesday. As long as he has what he has to have, to start with, we can add to it from there.
Brandon was quite freaked out about this. But, at age 14, I expected nothing less. His big thing, is Daddy is going to "die" in our house. I guess I would have freaked out about that at his age, myself. That is hard to say, but I totally get where he is coming from. So, we are working on making him comfortable about the move... not an easy task. But, when is anything easy?
Hospice was pleased to hear he was going to have around the clock care. The nurse said, that we are not looking at a long time to deal with this, so we will make it all count. She also said, he certainly will get better care from me, than from a nursing home.
So, I feel pretty good about the decision we made, now...on to getting it accomplished with as little fuss as possible. I would also like to take this time, to thank everybody for their ongoing and continued support! It means very much to me, and I thank ya'll for it!
Wednesday, January 11, 2012
Decisions.. not what I want, but a decision has to be made.
What a day. I wish I could say it was a good day, but it wasn't. Daddy's mental state today was awful. He was back in his helicopter pilot days. He didn't know me at first, but ended up figuring out who I was after some prodding. All day he was like this. I couldn't get him to stay awake. He would fall asleep sitting upright.
I called the nurse, because this was not normal, and she came by and agreed this was not normal. We aren't sure what is going on, other than the progression of the disease.
I also had my meeting today with the lady who owns the sitter business. They charge $15.00 per hour for anything under 5 hours a day. Anything over 5 hours per day is $12.00 per hour. At first thought, I thought this was completely doable. After looking at some numbers, that is not the case. Example... I wanted somebody from 6pm to 6am to come and stay with him. That would be $144.00 per day, $1008.00 per week, $4032.00 per month. None of this is covered by insurance. This would be our out of pocket expense for just 12 hours per day of care.
The average rate for the nursing home, is $165.00 per day. I did look at his insurance policy and found he does not have extended care coverage. So unless I want the nursing home to own everything he owns, or pay every penny he has to a sitter service, I have one alternative.
That alternative is to move him in with us. I do/did not want this option to be on the table, but there is really no choice in the matter. I can take care of him at home, much easier than I can being at his house half of the day. If he is at my house, everything can get taken care of, his care, school, my chores at home. I will only have one house to take care of, which will be a huge burden off of me. I did not want to disrupt my families life this way, but I see no choice in the matter.
Scott is thinking on this tonight, I am staying with Daddy tonight, and I am thinking on this.... We are in agreement, this is our best option, whether we like it or not.
This will be a huge undertaking, on my part, and Daddy has no idea this is what we are going to do yet. Hopefully he will agree, if he is coherent enough to understand what we are going to do. If he is not, we will up and move him, and hope for the best in the long run. Hospice will still come just like they are, just to my house, not his.
Please keep us in your thoughts as we undertake this ... we need all we can get.
I called the nurse, because this was not normal, and she came by and agreed this was not normal. We aren't sure what is going on, other than the progression of the disease.
I also had my meeting today with the lady who owns the sitter business. They charge $15.00 per hour for anything under 5 hours a day. Anything over 5 hours per day is $12.00 per hour. At first thought, I thought this was completely doable. After looking at some numbers, that is not the case. Example... I wanted somebody from 6pm to 6am to come and stay with him. That would be $144.00 per day, $1008.00 per week, $4032.00 per month. None of this is covered by insurance. This would be our out of pocket expense for just 12 hours per day of care.
The average rate for the nursing home, is $165.00 per day. I did look at his insurance policy and found he does not have extended care coverage. So unless I want the nursing home to own everything he owns, or pay every penny he has to a sitter service, I have one alternative.
That alternative is to move him in with us. I do/did not want this option to be on the table, but there is really no choice in the matter. I can take care of him at home, much easier than I can being at his house half of the day. If he is at my house, everything can get taken care of, his care, school, my chores at home. I will only have one house to take care of, which will be a huge burden off of me. I did not want to disrupt my families life this way, but I see no choice in the matter.
Scott is thinking on this tonight, I am staying with Daddy tonight, and I am thinking on this.... We are in agreement, this is our best option, whether we like it or not.
This will be a huge undertaking, on my part, and Daddy has no idea this is what we are going to do yet. Hopefully he will agree, if he is coherent enough to understand what we are going to do. If he is not, we will up and move him, and hope for the best in the long run. Hospice will still come just like they are, just to my house, not his.
Please keep us in your thoughts as we undertake this ... we need all we can get.
Tuesday, January 10, 2012
Life is funny...
I just saw another 3am pass me by, and I am up with such a stiff neck and a whirling mind. Stress, I would guess.
My friend Mary Beth, said something to me yesterday, that really has me thinking about how life is funny.
In July 2008, I had my open heart surgery. Finally, after years of being sick, I was going to be well. The future was looking so bright.
In December 2008, my Momma passed away after being sick with leukemia for 8 years. That was, and has been, the worst experience of my life. I was in her hospital room, all by myself, and watched her pass. I had to notify everybody, make all the arrangements, take care of everything, because Daddy was heartbroken.
In December 2008, my Momma passed away after being sick with leukemia for 8 years. That was, and has been, the worst experience of my life. I was in her hospital room, all by myself, and watched her pass. I had to notify everybody, make all the arrangements, take care of everything, because Daddy was heartbroken.
In June 2009, my Mother in law passed away. Luckily, Scotts family took care of that, and my Father in law has done extremely well.
So, Mary Beth got me thinking. I have been taking care of Daddy since Momma passed. 3 years.... 3 very long years. During these three years, he has been hospitalized somewhere around 6 times. Most of these hospitalizations have been due to his COPD. However, the first time he was hospitalized was because of alcohol poisoning. He quit drinking that very day, for which I will always be thankful. After a couple of times being very sick with bronchitis and pneumonia, he was put on Oxygen 24 hours a day. Sometime last year, he was still able to get out and about, and he went out to the range to target shoot. A 9mm casing ejected to the back, instead of to the side, and hit his oxygen tube which caused the oxygen to ignite and blow up in his face. That required a stay in the burn center, in Augusta Ga, for a weekend.
During these three years, I have had to take over doing everything in his house. Cooking, cleaning, laundry, bills, and taking care of him. Mary Beth, you are right.... I have to start taking care of me. I have no idea what life is like, not being sick, not having all this responsibility. Everybody has been telling me this for quite some time.. don't forget to take care of yourself. Well, I have not been taking care of myself, because he has had to come first.
Wed morning, I have an interview with a company, that hopefully will start being able to provide me with the help that I need. They can provide people who should be able to help me. What exactly they can, and will do, I am not sure yet, but will get all the details on Wed.
I am running on empty. In order for me to have a life he is going to have to accept these people coming in to help him, which in turn, helps me. He doesn't like it, but he is just going to have to accept it. Like Scott has been telling for quite some time... Daddy has used me up with a lot of silly things over the last three years. Now when he really needs me, I don't have much left to give.
I have no idea what it is like, to be able to enjoy life not being sick or overwhelmed with responsibility. At 39 years old, I was at deaths door. At 43 years old, I need to discover what life is really like without the responsibility of caring for him, and being on call 24 hours a day.
So Mary Beth, thank you for putting the way you did. I had not thought about it like that. My family needs me, and they have not had me for a long time. I need to be there for them, as well as Daddy, but my family has to start coming first. I need to live my life, which I have not been doing.
Monday, January 9, 2012
New Decisions...
Today, I was late getting to Daddy's house because on Mondays, we do our grocery shopping and errands. I get a call from the nurse, asking me if I was taking Daddy to the doctor. I said, of course not! She said he was insisting he was going to the doctor today. So, we quickly finished shopping, and flew home, I jumped in my truck and was down there as fast as I could get there.
I walked in to a man covered in blood. There was blood everywhere. There was blood in the kitchen, in the bathroom, in the living room, the bedding was covered, his clothes were covered. I almost had a heart attack right there. He said he fell, in the hallway, at 11:30 last night. Luckily the nurse from hospice walked in at that very moment.
She took one look at him, and put him right in the shower, so we could figure out what the heck happened. The aide came as well, and together, they got him cleaned up, while I got all the bedding and clothes in the washer, and started working on cleaning up the blood that was everywhere else.
He has two more sliced places on the arm, on the shoulder, on his leg, and this doesn't include the arm he sliced from wrist to elbow last week. They patched him up, and got him dressed. Showed me what to do to care for these new wounds. And, suggested I get somebody in to help me.
I can no longer do this by myself. I need help, and am not to proud to ask for it. Whether he likes it or not, is irrelevant anymore. I decided to go ahead and get the life alert, so that will be installed tomorrow. I have a list of people to call who we will have to pay, but they will come in and cook, clean, whatever I need them to do.
My plan is, I will go down in the am, take care of any mess. Then the Aide can come get him in the shower and change the sheets for me. I will change his bandages, and do whatever else for his care, and then hopefully I can find somebody who will come in for a couple hours in the afternoon to help make him something to eat, and sit with him, and just help do whatever he needs. I will be starting the interview process this week.
My goal is, and always has been, to keep him out of a nursing home... but as this progresses, that is looking like I may fail in my goal. Now, that I have made that decision to get some help, I feel seriously overwhelmed, because I have to interview all these people and find somebody who will do a good job, and also will put up with him, which is no small task. But, I will find somebody who can fit our needs, I feel sure.
The confusion he has had the last few days, leads me to believe he is getting much, much worse. Today he wanted to know when the electric company was coming. They were not coming. He said his tv needed to be fixed because it was broken. It was not broken. He kept wondering why I was taking him to the doctor. I was not taking him to the doctor, the doctor comes to him. He kept saying it was Saturday... so much confusion. Luckily, I am not the brightest bulb in the box, and can understand the confusion pretty well.
So, another adventure begins in trying to get some help. I have to do it for my own sake.
I walked in to a man covered in blood. There was blood everywhere. There was blood in the kitchen, in the bathroom, in the living room, the bedding was covered, his clothes were covered. I almost had a heart attack right there. He said he fell, in the hallway, at 11:30 last night. Luckily the nurse from hospice walked in at that very moment.
She took one look at him, and put him right in the shower, so we could figure out what the heck happened. The aide came as well, and together, they got him cleaned up, while I got all the bedding and clothes in the washer, and started working on cleaning up the blood that was everywhere else.
He has two more sliced places on the arm, on the shoulder, on his leg, and this doesn't include the arm he sliced from wrist to elbow last week. They patched him up, and got him dressed. Showed me what to do to care for these new wounds. And, suggested I get somebody in to help me.
I can no longer do this by myself. I need help, and am not to proud to ask for it. Whether he likes it or not, is irrelevant anymore. I decided to go ahead and get the life alert, so that will be installed tomorrow. I have a list of people to call who we will have to pay, but they will come in and cook, clean, whatever I need them to do.
My plan is, I will go down in the am, take care of any mess. Then the Aide can come get him in the shower and change the sheets for me. I will change his bandages, and do whatever else for his care, and then hopefully I can find somebody who will come in for a couple hours in the afternoon to help make him something to eat, and sit with him, and just help do whatever he needs. I will be starting the interview process this week.
My goal is, and always has been, to keep him out of a nursing home... but as this progresses, that is looking like I may fail in my goal. Now, that I have made that decision to get some help, I feel seriously overwhelmed, because I have to interview all these people and find somebody who will do a good job, and also will put up with him, which is no small task. But, I will find somebody who can fit our needs, I feel sure.
The confusion he has had the last few days, leads me to believe he is getting much, much worse. Today he wanted to know when the electric company was coming. They were not coming. He said his tv needed to be fixed because it was broken. It was not broken. He kept wondering why I was taking him to the doctor. I was not taking him to the doctor, the doctor comes to him. He kept saying it was Saturday... so much confusion. Luckily, I am not the brightest bulb in the box, and can understand the confusion pretty well.
So, another adventure begins in trying to get some help. I have to do it for my own sake.
Saturday, January 7, 2012
Failure and Embarrassment.
Well, another day of new adventures. Again, I get a call from Daddy, saying he messed the bed, his clothes and obviously himself. This is the 4th time in about a week, we have had this issue. I got the bed cleaned up, and the bedding in the washer. The clothes, were the second load. I got him cleaned up, and dressed, and changed the bandages on his arm, and leg.
Hospice brought him some pull ups. He has big issues with these. I am not sure if it is generational, or just him, but what an issue that is. I think I convinced him today, that it is important to wear these at night only. That way, if he loses control, and doesn't know it, most of the mess is inside the pull up, versus all over the bed, him and his night clothes. I don't mind cleaning this up, but it is a chore, that is preventable in a very easy way.
Such a simple thing to me, such an issue for him. He is embarrassed, humiliated, and upset that he is losing this control. I don't think he is embarrassed for me to have to clean him up, but he may be, that is hard to say. I went to nursing school, and worked in a clinic for years, and this sort of thing doesn't bother me one bit. But, day after day of it is getting a little bit old. All he has to do is wear that pull up at night. Again, such a simple thing to me, such an issue for him.
Hopefully I impressed upon him, that this is a simple fix, and an easy fix, and nothing to be embarrassed about. Lord have mercy, I sure hope so.
Hospice brought him some pull ups. He has big issues with these. I am not sure if it is generational, or just him, but what an issue that is. I think I convinced him today, that it is important to wear these at night only. That way, if he loses control, and doesn't know it, most of the mess is inside the pull up, versus all over the bed, him and his night clothes. I don't mind cleaning this up, but it is a chore, that is preventable in a very easy way.
Such a simple thing to me, such an issue for him. He is embarrassed, humiliated, and upset that he is losing this control. I don't think he is embarrassed for me to have to clean him up, but he may be, that is hard to say. I went to nursing school, and worked in a clinic for years, and this sort of thing doesn't bother me one bit. But, day after day of it is getting a little bit old. All he has to do is wear that pull up at night. Again, such a simple thing to me, such an issue for him.
Hopefully I impressed upon him, that this is a simple fix, and an easy fix, and nothing to be embarrassed about. Lord have mercy, I sure hope so.
Friday, January 6, 2012
One of the toughest decisions....
One of the hardest things, so far, in this journey has been the slow deterioration of my Daddy's mental state. It is one thing to go from a vibrant, physical, man, to a man living with an illness. It is another to watch somebody who I have always admired, learned from, and talked about everything with, lose the mental faculties to make easy decisions.
In the last 4 months (I discovered in December), Daddy has spent $4,000.00 on knives. I do not mean cutlery knives, but collectible (so he says) and military knives. This has been extremely disturbing... for a variety of reasons.
The obvious first reason is money. He is not poor, but he is not wealthy either. He gets his social security, and pension from 3M, and that is what he lives on. To spend that amount of money on knives, is totally beyond my comprehension.
The second reason, is because he is unsteady on his feet, and walks around, taking these knives from one room to another to sharpen them or whatever he does with them.
The third reason goes along with the money. I discovered today, that he has multiples of the same knives. He actually has 5 of the exact same knife, along with multiples of others, as well. If he was in his right mind, he wouldn't buy multiples of the same knife. He actually seemed surprised that he had more than one of the same knife.
So I talked to the social worker about invoking my Power of Attorney. I would have to get 2 different doctors to declare he is incompetent. Which he probably is not, according to the social worker, and I tend to agree with her.
So this leaves the question... what do I do? My name is on everything he has, including his bank accounts. I have talked and talked to him, about not doing this. We may need his money to pay for future care such as nurses and the like. He promises and promises not to buy another knife again. He keeps that promise for about 2 days.
Do I cancel his credit card? Do I move his money to an account in my name only, and just pay his bills from that? I have pretty much decided, that it is his money, and he can do what he wants to with it. If he runs out, and needs around the clock care, there will be no alternative but to put him somewhere, where he can get that care.
That has been the toughest decision I have had to make so far, in this journey. But, I think I have made the right one. He is not technically incompetent, so what right do I have to tell him what to do or not to do with his money? I have no right to do so.
In the last 4 months (I discovered in December), Daddy has spent $4,000.00 on knives. I do not mean cutlery knives, but collectible (so he says) and military knives. This has been extremely disturbing... for a variety of reasons.
The obvious first reason is money. He is not poor, but he is not wealthy either. He gets his social security, and pension from 3M, and that is what he lives on. To spend that amount of money on knives, is totally beyond my comprehension.
The second reason, is because he is unsteady on his feet, and walks around, taking these knives from one room to another to sharpen them or whatever he does with them.
The third reason goes along with the money. I discovered today, that he has multiples of the same knives. He actually has 5 of the exact same knife, along with multiples of others, as well. If he was in his right mind, he wouldn't buy multiples of the same knife. He actually seemed surprised that he had more than one of the same knife.
So I talked to the social worker about invoking my Power of Attorney. I would have to get 2 different doctors to declare he is incompetent. Which he probably is not, according to the social worker, and I tend to agree with her.
So this leaves the question... what do I do? My name is on everything he has, including his bank accounts. I have talked and talked to him, about not doing this. We may need his money to pay for future care such as nurses and the like. He promises and promises not to buy another knife again. He keeps that promise for about 2 days.
Do I cancel his credit card? Do I move his money to an account in my name only, and just pay his bills from that? I have pretty much decided, that it is his money, and he can do what he wants to with it. If he runs out, and needs around the clock care, there will be no alternative but to put him somewhere, where he can get that care.
That has been the toughest decision I have had to make so far, in this journey. But, I think I have made the right one. He is not technically incompetent, so what right do I have to tell him what to do or not to do with his money? I have no right to do so.
Thursday, January 5, 2012
A typical day
There is no such thing as a "typical day" when somebody is dying. Every day provides new surprises and challenges. Most days I am up at 5:30, and down at Daddy's house by 7:30 or 8:00. I asked the Aide with hospice to change her schedule if she could, so that I can come down later in the day. Scott gets home about 9:00am and I miss seeing him for those few precious hours.
Today is the first day of the new change, so we will see how this works out.
I get his mail, walk in the door, and immediately starts whatever laundry Sandy puts in the washer for me. Bedding, soiled clothing, whatever. Then I go see Daddy. Some days he is doing better than others, and some days are pretty rough. He fell the other day, and split his arm from wrist to elbow, so I have to change the bandages on that wound, clean it, add steri-strips if needed, then re-bandage it up. He also has a wound on his leg from running into the edge of a table, that I have to do that exact thing to, as well.
If he hasn't had a shower, I help him do that. Hopefully, with Sandy coming later in the morning, I won't have to do that. He also has a rash, that he has had for 3 months. We have tried every pill known to man, every cream that is RX or OTC, to cure this rash, and finally may have found a solution. But, with this rash, I have to put cream on him from his neck to his knees. He seems to almost come out of his skin because it itches so bad. Hopefully, Sandy can start doing this for me as well. I have to make sure he has taken his morning meds, fill up the medicine box, and make sure he hasn't gotten confused and taken the wrong day or time.
Then I start my chores. I have to sort through the bills, insurance EOB's, and whatever else has come in the mail. I only pay his bills once per week, which makes him crazy, because as soon as a bill comes, he thinks it has to be paid that day. I have to make cookies for him, because that is about all he seems to eat. We are "pleasure feeding" at this point.. so he wants cookies, he gets cookies. Any messes that he has made, since I was there the previous day, need to be cleaned up. Vacuuming, dusting, mopping, dishes, taking out the trash, taking the trash to the dump, cleaning the carpet - whatever needs to be done, I do it. I do his grocery shopping whenever he needs a few things, so that is only once per week.
He has always thought of something the has to be done, while I am gone, so whatever else he dreams up for me to do, I do. My goal is to be down there 2 hours. It usually ends up being 3 to 6 hours, and I am trying to work on that, because my health is starting to suffer.
Then I sit down and write down his vitals, and any health changes for the nurse on the pad that we share. I also have to write down any meds that need refills or questions about meds. By then, the laundry is done and I switch it over to the dryer. If there is some in the dryer, I fold it an and put it away.
Then I make sure he has everything he needs, and I head home to start my jobs here. Homeschooling, cleaning my own house, laundry, cooking, all the normal things to take care of my family and household.
My goal is to not have to work myself to death at his house, but to be able to actually have time to just sit with him and listen to his stories, or whatever he wants to talk about. I am going to have to initiate some changes to make this happen, but I will make it happen.
Today is the first day of the new change, so we will see how this works out.
I get his mail, walk in the door, and immediately starts whatever laundry Sandy puts in the washer for me. Bedding, soiled clothing, whatever. Then I go see Daddy. Some days he is doing better than others, and some days are pretty rough. He fell the other day, and split his arm from wrist to elbow, so I have to change the bandages on that wound, clean it, add steri-strips if needed, then re-bandage it up. He also has a wound on his leg from running into the edge of a table, that I have to do that exact thing to, as well.
If he hasn't had a shower, I help him do that. Hopefully, with Sandy coming later in the morning, I won't have to do that. He also has a rash, that he has had for 3 months. We have tried every pill known to man, every cream that is RX or OTC, to cure this rash, and finally may have found a solution. But, with this rash, I have to put cream on him from his neck to his knees. He seems to almost come out of his skin because it itches so bad. Hopefully, Sandy can start doing this for me as well. I have to make sure he has taken his morning meds, fill up the medicine box, and make sure he hasn't gotten confused and taken the wrong day or time.
Then I start my chores. I have to sort through the bills, insurance EOB's, and whatever else has come in the mail. I only pay his bills once per week, which makes him crazy, because as soon as a bill comes, he thinks it has to be paid that day. I have to make cookies for him, because that is about all he seems to eat. We are "pleasure feeding" at this point.. so he wants cookies, he gets cookies. Any messes that he has made, since I was there the previous day, need to be cleaned up. Vacuuming, dusting, mopping, dishes, taking out the trash, taking the trash to the dump, cleaning the carpet - whatever needs to be done, I do it. I do his grocery shopping whenever he needs a few things, so that is only once per week.
He has always thought of something the has to be done, while I am gone, so whatever else he dreams up for me to do, I do. My goal is to be down there 2 hours. It usually ends up being 3 to 6 hours, and I am trying to work on that, because my health is starting to suffer.
Then I sit down and write down his vitals, and any health changes for the nurse on the pad that we share. I also have to write down any meds that need refills or questions about meds. By then, the laundry is done and I switch it over to the dryer. If there is some in the dryer, I fold it an and put it away.
Then I make sure he has everything he needs, and I head home to start my jobs here. Homeschooling, cleaning my own house, laundry, cooking, all the normal things to take care of my family and household.
My goal is to not have to work myself to death at his house, but to be able to actually have time to just sit with him and listen to his stories, or whatever he wants to talk about. I am going to have to initiate some changes to make this happen, but I will make it happen.
Wednesday, January 4, 2012
A new blog!
I decided to start a new blog. My life is in such chaos, that maybe if I put some of these things down on paper (virtual paper) it will make sense to me, and possibly help others that may end up in my position.
My Daddy is dying. Plain and simple. He has COPD and a mass in his left lung. We couldn't get a "cancer" diagnosis because his lung collapsed during the biopsy, but the docs have assured me, that is what it is.
We have had him on hospice now for 4 months. Four very LONG months. We changed hospices after the first three months, because they were not holding up their end of the deal, and we now have a fabulous hospice, that I would not trade for the world.
Let me explain what our hospice does. The nurses come in 2 times per week, for about an hour at a time. They take his vitals, check his lungs, do whatever health-wise he needs done. Which because my Daddy is my Daddy, they never know what they will find that he has done to himself. They coordinate his care with his personal doctor and their own doctors that are involved with that hospice.
The Aide, comes in every weekday for about an hour as well. She will change the bed, or make the bed, throw the laundry in the washer for me, fold any clothes that are in the dryer from the previous day, that I have washed, and do other things that he needs done for his personal care. She helps him take a shower - when he lets her, which is almost never, and is another pair of eyes for the nurses and doctors.
They also have a wonderful volunteer who comes when she can to visit him. She will do most anything he needs her to do, such as light cleaning, talking with him, even bringing him takeout if that is what he wants.
They have a social worker who comes by once a week, and she helps with any issues, such as discussions of money, denial about death, helping the caregiver, whatever we need.
Every single one of these people is a HUGE help to me. I am in this by myself, as I am an only child. My Daddy is what they would call "High Maintenance".
Hospice is designed to keep the patient in the home, so they can pass comfortably and not in the hospital or in a nursing home. That is their goal. As his primary caregiver, my responsibility, is to do everything in my power to make this happen for him. Frustrating, aggravating, horrifying to watch... yes, to all of this. However, this is what he wants to do, so this is what I do for him.
It won't always be this way, but during this time, it is a constant state of turmoil, stress, worry and wondering what the next day is going to bring.
The support of my family and friends is what is getting me through this.. and I love each and every one of you!
My Daddy is dying. Plain and simple. He has COPD and a mass in his left lung. We couldn't get a "cancer" diagnosis because his lung collapsed during the biopsy, but the docs have assured me, that is what it is.
We have had him on hospice now for 4 months. Four very LONG months. We changed hospices after the first three months, because they were not holding up their end of the deal, and we now have a fabulous hospice, that I would not trade for the world.
Let me explain what our hospice does. The nurses come in 2 times per week, for about an hour at a time. They take his vitals, check his lungs, do whatever health-wise he needs done. Which because my Daddy is my Daddy, they never know what they will find that he has done to himself. They coordinate his care with his personal doctor and their own doctors that are involved with that hospice.
The Aide, comes in every weekday for about an hour as well. She will change the bed, or make the bed, throw the laundry in the washer for me, fold any clothes that are in the dryer from the previous day, that I have washed, and do other things that he needs done for his personal care. She helps him take a shower - when he lets her, which is almost never, and is another pair of eyes for the nurses and doctors.
They also have a wonderful volunteer who comes when she can to visit him. She will do most anything he needs her to do, such as light cleaning, talking with him, even bringing him takeout if that is what he wants.
They have a social worker who comes by once a week, and she helps with any issues, such as discussions of money, denial about death, helping the caregiver, whatever we need.
Every single one of these people is a HUGE help to me. I am in this by myself, as I am an only child. My Daddy is what they would call "High Maintenance".
Hospice is designed to keep the patient in the home, so they can pass comfortably and not in the hospital or in a nursing home. That is their goal. As his primary caregiver, my responsibility, is to do everything in my power to make this happen for him. Frustrating, aggravating, horrifying to watch... yes, to all of this. However, this is what he wants to do, so this is what I do for him.
It won't always be this way, but during this time, it is a constant state of turmoil, stress, worry and wondering what the next day is going to bring.
The support of my family and friends is what is getting me through this.. and I love each and every one of you!
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