Lately I feel more like a lurker than a participant here in The Land of Blog. I probably feel this way because that is pretty much what I have been doing. Lurking. I really love reading what everyone is posting about. Whether it's about their workouts, their calorie counts, their kids, their pets, their lives in general, it's nice to keep up with everyone. I know I posted a little while ago about how busy my schedule has been. It really has been that busy. But I have been lurking just the same. Not just here in The Land of Blog but in Life too.
In addition to being so busy I have found that I need more "down time" for my brain. I haven't been able to come up with anything that would be remotely funny, slightly entertaining or even mildly boring to write about. Bigun just posted about this years race season and how much fun it was. He took us on a tour down memory lane with a lot of the photos we had posted previously. It was a truly wonderful post. Not a lot of "smack talk" (very unusual) and lots of overall nice warm fuzzy sorts of feelings. It was a great post. It exemplified just how we have felt all year long as a part of the Tri community. When I say Tri community I include all of you who stop in and grace our blogs with your time and your thoughts.
I know I am not the only one who goes through the phase of writer's block. Everyone experiences it on occasion and let their blog sort of hold it's own. I noticed I have lost some readers lately because of my lack of blogging. Sorry to let some of you down. Hopefully when I get past this Holiday Season I can get my mind back on track. Then maybe I can get past the lurking status I seem to be holding in and return to my usual chatty commenting self. I know, you can't wait...
I don't usually get "too personal" here on my blog but on occasion I'll open the window a little wider. I don't have the charm and finesse that Nytro exhibits, nor do I have the articulate well thought out writings of Comm and Al. My brief views to what you may call insight come no where near what Momo's or Geek Girl's do. I am mostly a superficial poster. My personal life remains mostly a mystery... I guess.??? I try to keep my posts funny so that there is some form of entertainment you can take away. Perhaps you may even find yourself smiling about my ramblings when your mind turns to it hours after you have read my blog. Yes, wishful thinking, I know.
Part of the reason I have been so quiet and such a lurker on the blog front is my mind is just bogged down with so many things. Not just work but so many other things as well. A couple of weeks ago I posted about the TBI's our soldiers are coming home from the war with and how many of them are basically having to find their own way to help after they are released from active duty. This is a sore spot with me because I grew up an Army Brat. We still have many friends who are active duty. Many of them who are over seas right now putting their lives on the line for our country every day. These are friends who I care deeply about. These are friends who have wives and children here waiting with baited breath every time the phone rings. I heart our military. My heart is broken for the men and women who commit their lives to the Military Service and see little to no support when they need it most. It really does weigh heavy on my mind. How to help with this issue is something I search for every day.
No, I am not going to carry this soap box through the rest of my blogging days but I bring it up because it is personal to me.
My Dad served for 3 years his first go around in the Army and for 23 years on his second term. Those of you who do follow my posts know that I love my Dad with all of my heart. The human heart has a lot of room in it doesn't it? Not my dad's. 1/4 of his heart no longer functions. He has had open heart surgery. He has the "zipper" to prove it. He went through the surgery in 1996. Quadruple bypass at Duke. His surgeon was a leader in medicine. The Dr. really knew his stuff. When I went to Duke with my Dad for his pre-op (which was only supposed to be a double bypass) I was leery of getting my hopes up for my Dad. I didn't tell him this- but I was. I was scared to death. Terrified.
During the "tour" of what would happen during surgery my Dad was asked by his Surgeon if he would be willing to participate in an experimental procedure. It was the use of Artificial Blood. There were two heart surgeries of this sort scheduled for the next day, one of them was my Dad's. My Dad's and one other fellow. The Dr's explained how they were trying to find alternatives for blood supplies. Often times during war or natural disasters, medical emergencies, there is not enough blood to go around. My Dad would be the first human to receive this artificial blood. The doctors touted how they believed this would improve his recovery time, his memory would return faster (or suffer less) and he would feel better all around if they used this new blood. My first thought was, "are you kidding me? This is my Dad. This is the man I want to see walk out of here, not carried out on a stretcher after your little experiment fails". My Dad didn't hesitate for even a millisecond. Do you know what he said?
He said, "Absolutely. If this has the potential to help our soldiers in the event of war time, then I am your man." My Dad said that. He didn't pause, he didn't hesitate. He was willing to risk his life on experimental blood for the futures of our Military men and women. I have been proud of my Dad, always. That day I was prouder of him than any person could be of someone they love.
I picked him up for surgery the next morning at 3:30 am or so. About 12 hours later the surgeons came out to report on his condition. He ended up having much more damage than they anticipated and the double turned into a quadruple by-pass. Okay. He was okay.
Three days later he came out of intensive care and was taken down to the cardiac ward. They said he would be going home in about 2 or 3 days. Home for my folks is North Carolina. They lived about an hour and a half from Duke. Everything seemed to be going fine as far as we could tell. At this time, my home, Bigun's and mine, was in Georgia. So, I drove home thinking I would be back in a week or so once my Dad was back at his home. I barely pulled into my driveway in Georgia and the phone was ringing. I didn't get to it in time to answer. When I played the message back (this was before I had a cell phone) it was my dad's Cardiac Surgeon. Something was wrong. Drastically wrong. My father was back in ICU and they didn't know if he was going to make it. My father was slipping in and out of semi consciousness. It didn't look good. The Dr left a message asking me to call him directly. I did. What he told me blew me away. Blew me away. The Dr tried to tell me that my father's problems were occurring because he was an alcoholic and basically that he was detoxing. WTF?!?!? Yes, I let the Dr have it. My Dad doesn't drink. He wasn't, isn't and never was an alcoholic. This I know for fact. The Dr suggested that perhaps I didn't know my father as well as I thought. Well, this sent another litany of expletives flying out of my mouth over the phone to this Dr. I told him I would be at Duke that night and I wanted to see the medical charts for my Dad. They needed to be handy and ready for me to view the minute I walk through the doors. I got back in my car and returned to NC.
The charts were not available when I walked through the doors. I was getting a run around. I should tell you that I was my Dad's spokesman. He gave me a Power of Attorney just in case something happened. As it turns out, my Dad was "lost" on the operating table. He died for about 3 minutes. He had an allergic reaction to the anesthesia. This was news to me, to my Mom, my whole family. His set back wasn't due to his so called drinking, it was due to his allergy to the anesthesia. No one shared this information with me until I started asking for "Superiors". This Great Dr. decided to find an alternative "blame" that would place responsibility on my Dad. Truth was, they lied to us from the minute they came out of surgery. They conceded that these problems he was experiencing could well be the result of the complications during surgery. Oh - and lets not forget, he received the trial blood. They were trying to keep this out of the whole picture because they didn't want to look towards it as a possible factor. They shuffled their way around like pros. Their behaviour is what gives Dr's a bad name. If they had stepped up to the plate to begin with and not tried to "hide" or "cover up" the things that went wrong, I wouldn't have been so upset. My response wouldn't have been such an angry one. Knowing my father didn't drink and them trying to tell me he does...sent me over the edge. I guess they thought I was some dumb ass that wouldn't be smart enough to ask questions.
Any way, my Dad spent quite a while going in and out of a "coma like" state. He remained in ICU and I remained in NC with him 3 days at a time. 3 days in NC 3 days in GA, 3 days in NC... and so on. When I would go to Duke to be with him I would bring a little visitor with me. The Dr's and Nurses said that my Dad couldn't hear us. Didn't know who we were in his moments of semi consciousness. I didn't believe them. Each day I arrived I would set my back pack down on his bed and unzip the side. 'Biner (pronounced beener, but named after a Carabiner) would slip out and cuddle next to my dad under the covers. She would press her tiny little 3 pounds next to his hand and stay there until the evening when I would get ready to go. None of the hospital staff ever knew she was there.
One day I walked in and my Dad had been moved to the cardiac ward. He was conscious and talking. It was one of the best days of my life. So, when I walked into his room on the 5th floor with my backpack on my shoulder, do you know the first thing he said to me? "Did you bring the dog?" He did hear us, he did know we were there and he couldn't wait to see the little 'Biner for the first time.
Now, here we are eleven years later. My dad is in a bad way. Very Bad. You see, he's suffering from an OCD. He is a compulsive hoarder. In his mind, he's okay. Nothing is wrong with him, it's everyone else who has a problem. I know, many of you think that this isn't really a disease at all. It's just what happens to crazy people when the elevator stops going all the way up. I have to admit, I thought that way too. Then I started doing research on it. I started researching it after I spent 7 days of pure hell in NC this summer. Pure hell on so many levels that I can't even begin to explain. I am going to spare you from the worst of it.
To give you a little insight, my Dad has been hoarding things for so long that all he had were little pathways to each room in his home. Each room was packed from the ceiling to the floor with "stuff". Some of it was good, usable stuff. Most of it was trash. Trash of every kind. He felt that everything was useful or could be. You and I would throw away an empty toilet paper roll right? Not my Dad. He thought it might come in handy some time. If he threw it away, that would be when he would need it.He had doznes of them in plastic bags. If he owned one DVD player, he owned a dozen. One TV - he has 15. And so on and so on...Stacks upon stacks upon stacks of newspapers filled his living room. From the floor to the ceiling. There was only enough cleared space on the sofa for my Dad to sit. Everything else was packed tightly under boxes and bags and stacks of things.
Please don't get me wrong. When I describe my Dad you may think I believe he is perfect. I don't. My Dad is my Dad. He's human and he has his faults and I don't kid myself about these things. He has always been a stubborn, hard headed person who has definite opinions about everything. He hasn't had an easy life by any means. He grew up in the foster system during the 50's and 60's. He never even knew his given name until he joined the Army- the second time. The first time he joined the Army he was under age, so he stole his older brother's birth certificate. The Military was going to open doors for him. The Army meant Freedom.
Now, he struggles daily with his many health issues. He battles with the VA for benefits he is entitled to and cannot get. He shakes uncontrollably as he watches his family members take away all of his "belongings" and load them into the back of a truck to be discarded in the county dump. He panics at the thought of one bag of empty paper rolls being thrown away. When I started researching Compulsive Hoarding I was only looking for a way to help deal with him. The research I have read is mostly vague. Some articles though are treating this as the serious issue it is. Research is finding that this is different from other OCD's. It's different because most often there is a physiological occurrence that triggers this behaviour. My thoughts went to...oh I don't know, lying on an operating table for 3 minutes with no oxygen going to his brain ...? No, I am not blaming the doctors for what is going on with my Dad. It was an unfortunate accident 11 years ago. No one could have known he would be allergic to the anesthesia. Could they? No, probably not. However, the heart condition, mixed with the surgery could well be the trigger for this extreme behaviour. This behaviour of which he has no control. He's seems perfectly normal until you see where he lives, how he lives. How he subjects my Mom and his other family members to these conditions.
When I went back to NC this past summer I spent 6 solid days doing nothing but packing up most of his belongings that we could salvage. I know, what I shared with you was the end of a long week with me and my family yucking it up on the trampoline. What we were really doing was salvaging my Dad's life. His past, his history, his attachments. The rest had to be thrown away. Imagine, if you can, four 12 x 12 rooms packed from the ceiling to the floor, front to back full of garbage. Then imagine 4 more rooms packed the same way with salvageable things. That is what I did with my three sisters and my Mom-for a week this summer. I haven't even scratched the surface yet of how bad it really was. Now, here I am 3 months later not knowing what to do. There isn't a single day that has gone by, since then, that I don't worry over my Dad. There isn't a single day that has gone by that I don't try to come up with a way to help my Dad. My sisters, my brother, my Mom. No one has stepped up to do anything. They are all afraid. Afraid of his reaction. Afraid that if they intervene he might do something horrible and unthinkable. We are all being held hostage right now by my Father's illness and what might happen if we try to force him to get help. He holds everyone hostage with his temper tantrums.
So here I sit, pounding away at this key board while trying to figure out how to help my dad and I don't know what to do or how to go about doing it. He'll never go voluntarily. Never. How can I help him knowing that if I do- it will probably be the last time he ever speaks to me. Ever.
It is time for me to quit lurking and do something.
12 comments:
Very sorry to hear what you and your family are going through. Just want you to know you are in my thoughts.
Di, I wish I had some profound advice. I do wish you the very best during this difficult time. Your father may not realize it, but he is very lucky to have you as a caring and concerned daughter.
My prayers go out to you.
I noticed you labled this under "regrets". Have no regrets- you're trying to do what's best for your dad.
Another blogger went through this hoarding condition with her mother last year. I'll email you her blog info and maybe you can contact her for support.
Wow, I am not sure I have anything substantially helpful to say here.
I do work with the elderly every day and have seen lots of those behaviors, done home visits in homes of "hoarders", and held hands with lots of worried family members.
Who knows the actual effects of the anaphalactic response during surgery. (I am really shocked by how poorly that was handled). It is not unusual to see major behavioral and emotional shifts following anoxic events, strokes, heart attacks, and such.
It's tough too to try to get a parent to listen to advice.
There are medications that help to curb OCD behaviors in some situations. Has anyone suggested a neuropsych referral?
You have a big load on your plate - be sure to take care of ourself too.
I'll be thinking of you. (And for what it's worth, I don't think you've been lurking in your life. I would call it processing. And it's a necessary thing.)
For someone who doesn't think they write very well, you're doing a great job.
Awe, Di. All I can do is send a big virtual hug to you. Your love for you father jumps off the screen. Even if you don't know the right thing to do, you are involved in your father's life, trying to help him meet these challenges. So many people just turn their back on aging parents.
Take care of yourself. See you next weekend.
Oh... girl... that is a tough one.
I'm so thinking about you and your family.
Thanks for sharing with us the good and the bad.
di, i've been gone for awhile and i just got back and i'm so sorry it took me so long to comment, not that i have any wisdom or advice, but because you are my friend and you needed a hug and a shoulder, and i wasn't here for you.
i am so sorry that you are going through this with your dad. somewhere inside, just like he knew 'biner was there, he knows what you're doing is helping him. be strong for him, but also for yourself and please know that we are here for you, to support you and love you.
anything you need - even if its an instant message shoulder to lean on, you let me know, k?
big hugs.
What a difficult thing to deal with. The hoarding disease is for real and it isn't good. I agree with Momo that you Dad, at some rational level, understands why you have to take away his stuff but his rational side is not winning when it comes to his behavior. I hope you can find some help with this problem.
I also agree with Carrie that 'regret' is not the right sentiment. 'Sorrow' perhaps. You are there for your Dad and that's the best you can do.
Hugs,
21CM
This is great. You really did a good job thanks.
I hope you get this comment from the older post.
I asked the TBI expert at my hospital and definitely, OCD can be a result of anoxic brain injury, which is likely what he got on the OR table. Most likely due to this, esp if he didn't have it before. Also, consistent with your dad, the level of OCD is very severe with this. There is not a whole lot of literature, but it is well known to the experts. I don't know which VA he goes to (Tampa?), but the expert here is Dr Kimberly Arlinghaus in case you want to consult her.
I'm not sure what has happened since you wrote this post, but there are ways to make him get help initially, then when he starts improving, he will probably agree himself.
I hope all is well. It's very difficult for your family. Fortunately, there are lots of good treatments for OCD these days. Isn't there a mental health care line at his VA?
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