Moving forward

I typed out a whole blog entry on Sunday on my phone and wouldn't you know it -I lost it. So it goes.

It has been an interesting week. I am finding that I am moving forward a bit, but there are still some areas that are so difficult. I have been surprised to find how all-consuming this process has been. I guess that might be the naivete of someone who had not yet experienced a loss as signficant as this. I have been struggling lately with some new feelings. I have this strange fear. I am afraid I am going to forget things about my Dad. I know that seems silly, but for reason I am just afraid that I won't remeber things as they were or I will start forgetting little details. I feel like I am the keeper of his memory and if I forget then he really will be gone. Logically I know this isn't true. My mom, aunt, uncle other family members and other people who knew him help to keep him memory alive, I'm not sure why I am feeling this way now. It is probably pointless to try to apply logic to feelings to explain them at a time like this.

This past weekend was...different. It was the first weekend I have been home since some time in August. My kids didn't know what to do with me home. I didn't know what to do with me home. I took my aunt to the airport on Saturday morning and I got a good mountain bike ride in on Sunday morning, but generally I felt like I just wandered around the house a lot. I seemed to be...restless I guess. I just felt uneasy and quite a bit detached. I suppose this is all just part of the process. I am finding my way back to my regular life, although I don't think it will ever truly be the same.

Too much

I haven't been able to write for a while. I have thought about it a few times, but then it didn't feel right. It was too soon, my emotions were too raw, I was too exhausted whatever the reason I just didn't do it. I don't offer this as an excuse. I do not feel an obligation to write. I am only commenting on it because it is where my mind has been during the past two weeks.

Two weeks. It hardly seems like a day has passed. I feel like I have been walking around in a fog. I keep lists of what I need to do because I can hardly keep track of whether I have eaten breakfast each morning (in most cases I haven't) much less what I need to do after work. An example, I just went to Starbucks to get a coffee and some coffee beans for home. I had to remember two things. Let's just say my success rate on this trip was 50%. Not so good.

The new emotion that is starting to grip me is fear. I am becoming afraid that I will forget. I might forget memories of my Dad, things we did together, what we talked about, his favorite flower. I haven't checked out the "stages of grief" so I don't know where this one falls in the clinical diagnosis. The rational side of me knows I won't forget, but that doesn't really seem to help. Mostly though I am just sad. Truly sad and at a depth I didn't know I had. I thought somehow the past 4 years of my Dad being sick prepared me to accept his passing. I was wrong. It stings just the same.

I think that is all I feel like writing. I can't get the jumbled thoughts in my head to line up enough to make sense and type it out.

September 12th

My Dad passed away on September 12.

I was planning to go to my Dad's Friday afternoon. Hospice called at 12:30 on Thursday and said they thought I should come right away. I took a 2:30 flight. When I got to his house on Thursday I was surprised at the state he was in. I had just left on Monday and at that time he was still interacting, drinking water, drinking ginger ale, he even danced a bit to some of his favorite music - okay moved his shoulders to the beat while laying in bed. When I got there Thursday around 5:30 he was no longer responsive and struggling to breathe. His body was shutting down fast. I sat with him and talked to him, held his hand, gave him pain madication and basically just tried to make sure he was comfortable. I went to bed around 11. I checked on him and stayed with him from 3-3:30. I checked on him again at 5 and he was gone. I know he knew he was not alone in his house. I don't think he wanted to pass in front of me. When I went to bed at 3:30 I told him I loved him and that I was going to rest. I told him that he should rest too. I am glad he isn't struggling anymore, but my heart aches I miss him so much already.

I can't really type anymore. I don't really think I want to think about it anymore right now.

Choices

Today the big discussion was hospital bed or no hospital bed. Dad doesn't want to be in a hospital bed. Claims it is uncomfortable and he wants to stay in his own bed. I have learned that in a hospice situation hospital beds are superior because a) they are made with pads that inflate and deflate according to the patient's comfort level b) the beds are antibacterial c) the construction of the bed reduces the chances of bedsores d) it is easier to move a patient in a hospital bed e) and it is easier to change sheets on. All of this and they have the cool buttons that raise your head and/or feet. Apparently though if you are 6'1" a standard hospital bed is too short.

In the end we are going to likely have to force the move. It is difficult for the caregiver and myself to continue to try to manually move him. I have asked hospice to come in and force the issue because Dad doesn't is so stubbornon this issue. We put him in the hospital bed last Tuesday (a week ago today). He scowled and tossed and turned for 4 hours. Finally he sat up and said he was uncomfortable and walked back upstairs...walked back upstairs. Now he is unable to even sit himself up unassisted. What a difference a week makes. I guess now if we put him in the hospital bed he can't just decide to get out. That doesn't seem right either though... I have called and found a better bed and am just waiting for the okay from the nurse to have it delivered. Maybe that will help.

Monday morning

I am leaving this morning after spending the weekend with my Dad. It has been mentally and emotionally exhausting for quite some time, although now it is also physically pretty tough too. He is really not able to move himself. He is not able to go from laying down to sitting up, sitting to standing or reverse. I don't mind assisting him, it is just one more step closer and it is difficult to watch him struggle to try to move himself. Of course if he would use the hospital bed it might be a bit easier. Stubborn ol' guy.

I had a thought at about 2 in the morning on Friday while I was assisting my Dad. Perhaps this is going to come out wrong when I type it, but I wanted to try to get it down. Dying should be more dignified. It is cruel that after we have lived our lives that we are reduced down to needing assistance for the most basic of needs. There should be some kind of glory at the end. Whether you die young or old, if you are at a point when it is inevitable it would be nice to go out on top, rather than have ones body deteriorate around you. It is the physical part that I am referring to...I just wish there was more...dignity.

I also think it is important as a society that do more to teach younger generations to respect and revere the elderly and to not fear dying. I know that is a pretty tough sell. I guess the reason I think this is that as I am moving through this with my Dad I am trying to find peace with the process. Obviously I don't want him to go and I will miss him dearly, but what is more important right now is that he is cared for, loved and honored. As I try to accept this I feel I can do a better job in caring for him. As is the case for any person in his position it is his needs now and the rest of us that ever claimed to care need to step up and step in to help. If we teach our children that this is what we do - without question - then I think we will raise a generation that will be better equipped to honor and treat with dignity their loved ones.

Well...guess I am feeling a little preachy this morning. It's been a long tough weekend.

Friday night in Temecula

Well, I got to my Dad's house about 2 hours ago. Things aren't looking too good. When I left on Tuesday night he was still able to walk around a bit, he even came downstairs...now not so much. He is having difficulty sitting up, standing and walking. He requires quite a bit more assistance. Since he really hasn't eaten in about 7 days his body is shutting down.

I feel a bit helpless. I want to be able to help him, but sometimes I am not even sure what to do. I help him get up, lay down and shift positions, but I am also afraid I might hurt him.

Stand up 2 Cancer is on right now. I watched a bit of it. It is too difficult to watch right now. Typically it pisses me off when people say they don't want to help someone or see someone because it is too difficult for them. If you ever cared for that person then you have to realize that that time you spend with them at the end isn't about you. It is about them. If I hear one more person say "I didn't want to see him that way, I wanted to remember him the way he was when he was healthy" I think I will punch them. I haven't heard this a whole lot with my Dad, but just generally I hear folks say it. I think it is cowardice. Trade places with that person just for a moment - it might be easier to see what is right and wrong from their perspective. Well, that was a random unplanned rant. Oh wait, I know where that was going. It is too difficult for me to watch Stand up 2 Cancer, but I am giving myself a pass on this one.

I think I better go get some rest. Rumor has it that Dad has become nocturnal so I may have a long night ahead of me.

What to Expect

The full time health care assistance started today. I guess this truly is the beginning of the "transition" period. Hospice gives us books to read. They are like "What to Expect When Your Expecting" except they are"What to Expect when You or Your loved one is Dying" - okay, not really title that, but basically the same thing. So just as I did when I was pregnant I have read and re-read the book. I look for the signs and symptons they mention and hope I don't find them. I try to figure out if we have days, weeks or even months left. I know it is futile and yet I keep doing it. He could have all of the signs or none of the signs. He could make it one more hour or we could celebrate Christmas again this year. The ambiguity of the situation drives me to constantly be looking for some kind of answer. In the end though I know that nobody really knows anything. How dumb - I chase around looking for answers that I know aren't there. When there is nothing left to do I guess my mind has to create something. I have no idea how many hours I have spent on the internet trying to figure it all out. It goes against everything I know to think that NO ONE has the answers...seems like someone must.

I do feel better having someone there with him 24 hrs. a day. He is now safer from both inside and outside threats. I will be back with him tomorrow. Apparently he gets very confused and disoriented at night and starts wandering around. I need to prepare myself for this. I will need to help him relax and be calm.

It is difficult when I call that I am unable to speak with him. When he has folks there to care for him he doesn't answer the phone. All I am able to do is to check on him, but there is not really any chatting. I miss this, but he is safer. I guess that is kind of a theme. He has to continually compromise as we move further and further down this road. We may not like the direction and we certainly don't like the outcome we will have, but there is no getting off this road. We just have to come to terms with the different twists and turns and try to manage them in the way that is the least upsetting. That is to say the choices we make now are ones in which neither answer is particularly positive - we decide based on the answer that is the least offensive to our sensibilities.

Until next time...

First shot

"You only grow as a human being if you're outside your comfort zone." --Percy Cerutty

Well...I must be pretty giant right about now. So here goes the obligatory "why blog?" explanation. I need to sort out a few things and just think out loud a bit. I have tried blogging before, but like many other pursuits, what started as an ambitious endeavor to share my thoughts soon became another thing on my to do list. This time I will blog as a way to help myself cope with whatever life is serving me on it's big ol' silver fancy platter. Today's special - stress, fear and extreme sadness. MMMM....sounds appetizing doesn't it.

So a bit of background. I returned late last night from my Dad's house in Southern California - took the last flight home. I will be home a for a few days and then I will head back to his house for a long weekend. My Dad was diagnosed with stage iv colon cancer on August 27th, 2004. The prognosis was not very good. If you'd have asked his doctor how much time he had he would of said "maybe 6 months to a year". Apparently they forgot to factor in that my dad is a scrappy Irish fighter and wouldn't be going out without a fight. Here we are just over 4 years later and it appears he is coming to end. I have a lot of thoughts and issues surrounding where we are now. I don't think I will address them all in my first post...I don't have that kind of time, but it is my goal to address them each time I write. So let's see, in no particular order - cancer, pain, food, hospice, guilt (actually this may take 2 or 3 posts), traveling, coping, sharing, just being there...and whatever else pops in to my brain.

and away we go...
Over the past year I have spent at least one weekend a month at my Dad's house helping, visiting, just being there. He has had cancer for 4 years, but the last year has been the hardest. Initially I tried to get him to move closer to me...he would consider it, but in the end the thought of moving was overwhelming. He truly wants to be in his own home and in familiar surroundings. I explained to him that I could not leave everything in my life on a long term basis to be there at his house constantly. I told him what I was capable of doing and that I would visit as often as I could. In the meantime I call him everyday...just to make sure he answers the phone and is okay. Now that we are nearing the end and he is requiring 24 hour care the reality of choosing to live alone is appearing to be quite different than the image he had when he made the decision last fall. It is a relief that he will no longer be alone, but the reality is that he can no longer care for himself. It feels odd to be waiting to go down to see him again until he is worse. What is that about? Why do we wait until the end to be with a loved one? No one should die alone, but it is a shame that we don't always see the value in being together just to be together. It seems like this whole process is a waiting game. He is waiting to pass on, I am waiting until he is sicker to go down and stay...waiting waiting waiting for something to happen. Waiting is difficult. I have to find something to keep me busy. I have tried sitting and staring at him, but neither of us found that to be all that interesting or comfortable. So I do other things to keep me busy...busy and not focusing 100% on the fact that we are waiting.