12.16.06
Protected: not the good parent
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10.30.06
another passing
David’s father died a couple of days ago. He rang me in the afternoon, instantly sending me into panic mode. He hardly ever phones and never during the day. So of course I thought the worse, with his depression with everything going on. In a way there was a quick burst of relief when he told me what had happened, sounds cold I know, but at least it wasn’t something that devastated our relationship. We talked a little bit. I tried to be comforting, to be there, but from such a long distance there was so little I could do. I felt so fucking useless about it all, I wanted to give him a hug. But with being so far away I couldn’t do that, even if I had transport it wouldn’t have been realistic to drop everything and drive up there. So I sat here and said what I could and felt helpless. I am the type of person that likes to be able to fix things, to make them ok, to rush in and take control, take care of the other person’s problems. It may not be all that healthy and I know most of the time it isn’t actually wanted, but it doesn’t stop that urge coming over me.
We talked a little about how this is probably a good thing, that he died. It sounds so terrible to say, but like my dad his was very sick, was suffering life and death brought an end to that. It doesn’t make it a joyous occasion, it is still heart wrenching grief, but there is a finality to it, an end to the struggle. That end is a two edged sword, there is no more, no more pain but no more of the person. I do think some of David’s depression has been about dealing with his dad’s slow death, being so far away unable to help, not knowing what to do, so perhaps for him too the end will be a new start.
It makes me think of my own dad though. His death was the best thing, the right thing, considering what had become of him. But I still miss him.
(abandoned half way through writing but I will post it anyways)
04.18.06
Easter and Dad
Another Easter over, I don’t know if I would say it was a better one, it was different. Although in writing that I do think we are getting better at handling Easter. It is still traumatic, it is still trigger and flashback hell, but we are learning to cope with it without losing the plot entirely.
This year was different too, because we had D. with us. We were concerned we wouldn’t be able to keep a handle on things. People said we should let him in, telling him about what was going on for us. But I think Easter is too bizarre and extreme. I don’t want to chase this guy away. We aren’t keeping him out of our past, we have told him we were abused, and giving bits of information here and there, but Easter would be too much too soon. So we wanted to keep things to a minimum on Friday, not lose ourselves in the past when he was there, and we managed that. We brought an airbed so we could sleep together rather than him sleeping on the floor and me in my bed. It was nice to have him beside me. When we went to bed on Friday night, our strength to keep the past away weakened. Lying in the dark the fear and pain came back and we tried to hold it off. Someone took one of the pills that usually knock us out. It got us off to sleep but our night was full of nightmares. The good thing, a couple of times when we woke up we found his arms softly around us. It wasn’t triggering because it was a gentle hold, and we knew who he was. For a long time we have always wanted someone to hold us when we come out of flashbacks, when things get bad, this time we had that. I think we must have been crying out or tossing or something, he didn’t say anything about it, just cuddled into me. Usually when we are sleeping he doesn’t do that, so it felt different this time. The rest of the time he was here things were pretty normal. He was sick so we didn’t do much, and I didn’t get triggered by anything.
But on Sunday and Monday when we were alone it was harder to keep it all tightly bound down. They were shocking days when we couldn’t quite keep ourselves in the present for any length of time. It was like straddling two worlds, neither of them entirely real. We did manage it, it wasn’t easy and managing doesn’t mean it wasn’t terrible, but we stayed safe, we didn’t do anything that I would consider inappropriate, so that is managing. We used to think managing meant we had to be totally fine, without distress, but I am learning that isn’t possible, or even realistic. Managing distress isn’t the removal of distress, rather it is about feeling and thinking but still living and holding onto life.
My Mum rang on Sunday and when she asked Dad if he wanted to talk to me he said no. That’s ok, Dad isn’t great on the phone even when he was well. I wasn’t upset about that, but then less than a minute later the phone rang again and it was Mum. Dad didn’t understand it was me on the phone when he was asked so wanted her to ring me back so he could talk. We talked for a couple of minutes. He is very confused and still haven’t trouble speaking, but he sounds, well not happier, but more relaxed than when he was in hospital. At the end of the call he told me he loved me which was nice to hear. When we said goodbye we could tell he was crying. When I hung up I had a cry myself. I now really want to go up there and visit him while he is still at this level. It will be a while though before we can make it, because we have to get our bike fixed. The gasket is stuffed, and getting worse so we will need to get a new one of those before making the trip. And then we have to find time in our schedule to get up there. We will only spend the night and come home the next day. Partly this is because I don’t think Dad could handle too much change right now, and partly we aren’t comfortable with spending too much time there either. I don’t know how long he has got, I don’t know when he will start deteriorating. It’s hard to just wait, knowing it will happen, but not knowing the time frame. I don’t think I am really thinking about him dying, well, no that isn’t entirely true. I think about it, but as yet I don’t think of it happening soon. That will probably become real when he gets sicker, when he can’t be up and about like he is now. Then I will have to deal with the next level of this process.
04.01.06
General thanks
I want to thank everyone who is leaving their best thoughts for us in our comments, or via email. We read them and they do mean a lot to us. We just aren’t in a place where we can respond directly. But we do want to know how much we appreciate all your support
03.31.06
days outcomes
If we do nothing Dad will have around 3 months to live, if we give him treatment he will have about 12. It’s all a matter of time. We have to decide. I am hoping that if the swelling goes down he will get a bit more functioning, so the 12 months will be worth it. If we can talk with him, instead of talking to him I would want as much of that as I can get. But if the trauma from the surgery goes away and he is still the same, then it would probably be better to just let him go. No matter what we do he is going to die.
He told me today he didn’t want me to come in and see him anymore. If he really means that I have to respect it, I just don’t know if he means it. It hurt so much, I know he could just not want to be a burden, but if he really doesn’t want to see me, if he is rejecting me, I don’t know how to handle that.
I have 10 days to write an essay worth 20% and I don’t have a clue what I am doing. I may have to drop out of the paper. If I can’t do it then I can’t pass. It might mean I take two papers in the second semester or put things off another year. My lecturer is sick so she couldn’t spend much time with me. I don’t know what to do about that, I can’t seem to get a grip on the essay to even get started. Will hopefully talk to her on Monday.
I feel like I have no support, everyone is telling me I’m wrong, I shouldn’t be feeling what I am feeling, that I need to be different, to think differently, to feel differently, to do differently. I was told I was too sensitive, I have been told to just move on, to get over it, I have been told not to care. Today Bob said I was just being hyper vigilant about what was happening, it felt the same as being told I was wrong and over reacting. We felt attacked and alone and we yelled at him for that.
I am broke, I have spent too much on coffee and wine and quick food. So financially I’m a mess.
I really need and want to go through to Queenstown next week. I hope I can work that out.
03.30.06
Not good news
They said the operation went well. I thought that meant that it was successful, that dad was going to be ok, and maybe even get better. Today my brother was told at best Dad has 12 months to live. It’s going to kill him. My Dad is going to die… soon. I was there when my brother came back with the news. I did my best to support mum, but I needed to come home too, to be alone. This is breaking my heart.
03.26.06
Not exactly overflowing
My brother has arrived. So I have been relegated to not needing to know what is going on and when I rang to find out how everything was, my mother gave me the quick disinterested brush off. I shouldn’t complain, it gives me a break but fuck it, it is hard to be shut out of the situation. Of course in my mother’s mind I am not really family so what else could I expect. My mother has family with her now, they can support each other, I am hardly needed. And of course when he goes home in about a week, it will be back to me. Although I am hoping that by then a lot of the pressure will be off, we will know hopefully what Dad’s prognosis is going to be.
Mum said last week that an old friend of the family wanted to ring me to see how I was going. This was after telling my mother I was a little annoyed at all the friends and family in Dunedin not one had come to see how I was coping with it all. My mother said she wanted to make sure I realised she didn’t ask this friend to give me a ring, that it was her idea and all. No problem with me on that area. Well this friend rings, and it seems her idea of support is using me for information. She said she was really concerned about Dad but knew my mother was under a lot of pressure so didn’t want to add to it, so if I didn’t mind would it be ok if she rings me to get information over the next little while. I don’t have a problem doing that, but well it is hardly what I would call support, or at least support for me.
The support thing is a big deal for us right now. We have virtually none. Sure there is Sean and Bob, but they are here professionally, they are part of my recovery and seem to be looking at this in that way, they want me to challenge my beliefs, maintain my boundaries and all that stuff. Now I am not saying that hasn’t got its place, I am actually grateful they are responding that way, because that is their role. But it is hardly a place I can go and feel sorry for myself, or simply grieve about my Dad. Friends who know about my past, the relationship we have with our partners, the details of my life, well I don’t feel a hell of a lot of support from them. Mostly it seems what I get is that challenge of why are you giving them support they don’t deserve it. This might be true for them, indeed I understand why they would be saying those things. But that isn’t support, that means I have to constantly justify my actions rather than just talking about what I am going through. When we got those types of responses on RQ when I wrote about what was going on I wrote something rather assertive about it. I don’t know if it was heard, there were responses to it but right now I can’t face those emails because I think I would go off if I have to read again I am wrong for supporting my family in this. David said he is there for support and yes it was wonderful having him here this weekend. But there are a couple of issues, one this relationship is new and I don’t want to scare him off, to lose the building of a relationship because disaster has hit. And he doesn’t really know the details of my past so I can feel some people getting irritated when he doesn’t get why some of this is hard for us. And as I said family and family friends seem to have forgotten I even exist. So yeah I do feel I am dealing with this mostly on my own. David I am grateful for though. He does hug me when I need it and sits quietly and listens when I rage. But I don’t want to overload a new relationship.
03.23.06
A hard day
I saw Dad today. Fuck it was hard. He is much more confused, distressed and bewildered that I had thought he would be. I couldn’t feel the usual connection with him. I felt like a stranger in the room. Now most of that is probably because of the tumour and his anxiety and fear. But it was heartbreaking. The whole thing wasn’t helped by that feeling that I wasn’t really part of the family, more sitting outside looking in.
I managed to be part of the conversation with the doctor though. It seems the tumour is in the back left side of the brain. It is in the brain not on it, which I don’t really get the difference, although to me it sounds worse. But it does mean that Dad isn’t having seizures, they seem to occur when the tumour is pressing on the brain. The tumour is very large and seems to be growing quickly, so much that the centre of it appears dead because it has used up its supply of nutrients. The place of the tumour is affecting Dad’s language and comprehension abilities, which was really noticeable today, and probably affecting his sight on the right side. For those of you that don’t know the part of the brain that processes the information from the optical nerves is at the back of your head.
The doctor explained all this, although it seemed to just freak Dad out a lot and he was relying on Mum. A decision was made though, that on Wednesday he will have surgery. The doctor will use an ultra sound device to work away at the tumour and get as much as possible out without damaging the healthy part of Dad’s brain. This is big surgery, it will take about three hours. There are risks, risks that the blood vessels might be damaged, risks of infection, and a risk of death. But unlike what my brother told me on the phone when he said death was a high possibility the doctor said that these risks were about a 10% chance of happening, so although a risk, not as high as I was thinking. They will then test what they evacuate. I don’t know how helpful this will be, the doctor says he hopes to make him better and avoid making anything worse. I don’t know if it will save his life, I don’t know if it will give him back his mental capabilities, but we all know that if we do nothing then this tumour will continue eating away at his brain and he will slowly lose more and more of himself. He may need radiation therapy but at least that isn’t as hard on the body as chemotherapy.
Today’s been hard. It was hard to see Dad like that, it was hard to deal with family dynamics. When I went out to have a smoke I got angry at Mum’s friend Joyce who was also down. She expected me to take her up and show her when Dad was, but I just gave her directions and went outside. Later she made some biting comment about getting lost. I was barely holding everything together. Hell when I went outside and someone asked me for a lighter I couldn’t stop crying. I ended up calling Bob and he sat with me. I remember waiting for him to come out and desperately trying to work up the courage to ask him to touch me, to stroke my arm, or hold my hand. It felt so wrong but I knew we needed it. He came out and sat down beside me and lightly rubbed me across the shoulders. I was grateful that he did it, and that I didn’t need to ask.