Thursday, 29 December 2011

Horribleness after the fact

So we are in the 4th day of the Shiva now, out of 7. The funeral was pretty horrendous, although it was no worse than I expected. My father trained us all very well, with years of going to my grandfather's memorial service. Going to the cemetery, meeting all the friends and family, the graveside, all of this was familiar territory and felt unsettlingly comfortable (if that is not an oxymoron). The only part that was different was the short service in the funerary building and the presence of the body, which was then interred.

We were supposed to start at 1pm, and at 1:40 I asked my brother what the hold up was. "They're still digging", he said. You see, my father's final wish was to be buried in the same plot as his father, which meant digging up that grave. So, at almost 2pm, when we all bundled into the building and still nothing happened, I asked what the delay was again. My brother said, "it's taking longer to dig through, because your father filled the grave with concrete". My mother and I looked at each other. We were both thinking the same thing. My father buried my grandfather and then covered the grave with concrete to prevent what? His escape? Body snatchers? We started laughing hysterically, in the funeral building, with everyone around us, and we couldn't stop. While we were laughing and crying, the funeral finally got under way.

My father looked very small under the shroud that he was wrapped in and again, that's probably one of the memories that I would prefer to delete from my brain. My brother is having a problem that people keep coming up to him and asking "did your father suffer at all?" I suggested to him that he should answer "Terribly", which would shut them up. Word of advice to anyone comforting people who are bereaved: this is not an appropriate question and one that simply causes a world of pain for the family, regardless of whether the person suffered or not. It causes us to have to focus on those last moments, those hideous snatches of time that we would rather forget as quickly as possible, because they are not indicative of the rest of our father's life. He was so much more, and we would like to be able to start to see his life as a whole, rather than only being able to see the last few weeks.

Again, the burial is something that I would rather forget, so I will not post about it. My grandmother insisted on waiting for everyone to have finished before putting her flowers on the grave. I had wandered off and was talking to some people when, out of the corner of my eye, I saw my grandmother fall. I ran over as my brother's helped her to sit down. At that moment, although I don't believe that people can die from a broken heart, I believed that it was happening. My brother asked my grandmother later what was going on. She said "for a moment, I thought I was dying. And you know what? It wasn't so bad". However, I can't go through this misery more often than every decade or so, so I need my grandmother to remain healthy and happy.

Since the funeral, we have been sitting Shiva. Don't know if I need to explain this, but, under Jewish law, the family sits for 7 days and people visit them to condole with them. All a lovely thought and very healthy for grieving and so forth, but there are a few problems. Firstly, we have a lot of people coming that we haven't seen in years or that I don't know at all. It is hard to sit and talk to them, especially when it turns out that the relationship between them and your family member was not all rosy. For instance, yesterday, an old teacher of my father turned up. She said that my father was dyslexic (we all knew that) but also that he was disruptive and a pain in the backside. My grandmother almost punched her. But we have no control over who comes through the door. The next problem is that we don't have any control over what time these people come. They can come at any hour of day or night. So they start at around 10am and don't leave until after 10pm. Between the hours of 1pm and 3pm we are supposed to eat, and sometimes we have a short reprieve. But mostly we eat in shifts, with the people not eating sitting with the guests. Another problem is that we don't get any time for ourselves. We have plenty of stuff to work through, but we are only able to snatch little moments of time between people who ask us if he suffered. We need time for the family and, further, we need time to ourselves. I am so peopled out that it is unreal. This is the only time of day that I get to myself. So I am going to do some more land law and wait for the sun to rise.

Sunday, 25 December 2011

The end of waiting

Many of my posts have been tagged with "waiting". Well, the wait is over. My father died at 6 o'clock this evening. We were all with him and, despite some tricky moments, it was mostly peaceful. It's 1am as I am writing this and I do actually have plenty of time because my brother and I are taking shifts looking in on my mum every hour.

This last week saw a swift decline in my father's condition. He didn't get out of bed for most of it and, for the last three days or so, he was mostly unable to communicate. I started with quiet yeses and nos, then went down to nods, and eventually we were trying to guess whether a small movement in his eyes was assent. However, the brain fog completely lifted and we believe that he was aware until the end.

I won't go into the details of everything that happened tonight. I was sent to a nearby hospital to pick up morphine to help my father's pain. I was just about to raise holy hell because they wouldn't give it to me when my mother called and said to come home right now because we had run out of time. I got back about 30 minutes before he died and despite the fact that I saw things that I really wish I could unsee, it was worth it. We didn't need the morphine, in any case.

There are so many thoughts, so many worries, so much misery, that I don't really know how to arrange it all in a coherent form. This will not be my last post. In Jewish tradition we sit for seven days now, as a family, and are visited by people wanting to be with us. Obviously, this is after the funeral, which is tomorrow. Trying to get the undertakers to do their jobs was bloody difficult, as they close up shop at 4pm and don't reopen until 9 the next morning. But apparently, if you grease enough palms, you can get things to happen outside of those "work" hours.

Basically, what I was trying to say, before I got sidetracked, was that I have seven days in which to try to work out what I am thinking and feeling. My overwhelming thought for most of today was that people tell you that certain things in life are hard. Final exams, planning a wedding, loving your neighbour, that kind of thing. Many of those things I have hunkered down on and come out thinking "ok, that wasn't so bad". This is absolutely as hard and bad as they say. I can't overstate how difficult the last few days have been, and I don't mean sad or worrying, I mean difficult. There have been things I desperately did not want to do, such as say goodbye to my father, watch how the ambulance took him away or calling people to tell them the news that nevertheless had to be done. And so I did, and we did. I have been far from perfect in behaviour, but I need to allow myself that. To be fair, no one in this house has been exemplary this week. We all wanted to punch someone at some point.

I will start with one story from tonight. Only one and then I will try to rest a bit. After my father died, we sat in his room, all together. At some point the blanket was pulled over his face, a big duvet that kept him warm for a week. I simply couldn't bear the idea that he had his face covered, for the illogical, insane reason that I was worried that he couldn't see us and would be scared. Or that he wouldn't be able to breathe. Or something.

I won't tell you about what my family are doing, because it is not for me to make their business public. I will stick to myself, but only tell you that everyone is hurting and everyone is exhausted. A light has gone out of our lives. And I can literally feel the hole that he has left in my heart.

Sunday, 18 December 2011

What kind of week has it been

I have been meaning to update because this is a crucial time. However, I have not had the heart to do it, even though there is plenty to say.

My dad is still with us, albeit just barely. He had a couple of good days at the beginning of the week. He would get up, sit with people, and, although he was not really with it a lot of the time, he was responsive. A few days ago, however, he crawled into bed and hasn't really been up since.

We moved my father's bedroom downstairs on Thursday. Basically, the house is all staircases and it involved two flights to get up to my parents' bedroom. Also, the bedroom is dark and not very friendly. We got a lot of medical and mobility equipment from a wonderful charity in Israel that lends stuff out for free. Wheelchair, oxygen tank, toilet chair, urine bottle, etc. We also managed to blag a hospital bed very quickly and we put it all in the room that looks out over the pool. It's bright and nice to sit in and my father likes to spend time there. The bathroom is very near and we adapted it into a makeshift wetroom. We rearranged the furniture so that it's a bit like a studio flat now. There is a seating area, a dining area and, of course, the bed, with an air mattress that prevents bed sores. Every evening we bring the fold-up bed in for my mother and she stays with him. I feel as though this is a happier place to be, although there was some opposition to the idea, mostly because certain members of my family believed that this was a statement of defeat that would not encourage him to move around.

Yesterday my father got out of bed only twice to go to the toilet and otherwise mostly slept. His oncologist says that, in the best case scenario, he will simply sleep more and more until he doesn't wake up anymore. He has had trouble breathing over the last 24 hours, although our Doctor Friend says that his lungs are clear. Mostly, his liver is enlarged and is pushing on the rest of his organs in his abdomen.

Weirdly, in the little time that he spent awake yesterday he seems to have been much more lucid than previously, and, although he only said about 2 words, he often winks at me.

Doctor Friend says that he can't put a time limit on it. Consulting Oncologist says 7-10 days, although he is in America and can't see him.

I had a fright a couple of days ago when I was on the phone and suddenly heard my mum sobbing uncontrollably downstairs. I ran down to find her hugging my brother so I rushed down further to check on my father. He was there, happily sleeping, but, at that moment, I believed there to be a real chance that the end had come. And I realised that I wasn't ready. Not at that moment, not completely randomly and without notice.

Another vignette was yesterday, when my mother voiced what has been plaguing me for months: we all die alone. The thing that has upset me more than anything else in the last 2 years has been the thought that he would die alone and afraid. I don't know if he has found some peace in recent days or that he is just too tired to be afraid anymore, or maybe he is still very scared. I think, though, that maybe without fear it is not so bad to be alone, as we all are. But there is nothing any of us can do to help that.

There are moments of laughter, some totally inappropriate, but each member of my family is coping in different ways. My grandmother is more or less falling to pieces, which is probably justified. My brother has been unbelievably angry at everything. It is his birthday today and he resents the shit out of it, because he doesn't believe he has any right to celebrate and got angry at his wife for organising a small party. If I had one prayer, it would be for my father to get through today, if only to spare my brother feeling as though he had in some way contributed to his death by daring to be born on the 18th December.

Littlest brother and I are playing a lot of computer games to keep us busy, although I do have a lot of work to do but no concentration to do it.

My mother knows that she is keeping it together (mostly) right now, but can't possibly vouch for how she will be after the funeral.

I honestly don't know how I feel. I don't feel as though I am in denial about anything and I am keeping it together for everybody's sake, including my own. I don't feel as though I regret not having more time with my dad, or that I needed to say something really important to him before he dies. He knows that I love him. I tell him every day and he winks at me. Maybe that is why I don't feel as though he is afraid. He winks, and that wink is for me.

Sunday, 11 December 2011

Together again

I won't go into the details about how I ended up on Israel a full week early. Suffice to say that I am here and that my brothers flew in with my parents, one from Houston and the other joining them in Geneva.

We went to pick my parents up from the airport last night. I didn't entirely know what to expect, so I tried not to expect anything. So the report? His jaundice is quite bad, and he has trouble walking. The biggest problems (if you can call them that) on a day-to-day basis are his cognitive problems. He doesn't know where he is going, he forgets what he is doing after a few seconds and he is talking entirely without reason. Sometimes I think the words that he is saying are not the words that he means, but sometimes he is honestly just talking crap. In his better moments he gets very angry and the reason they got in so late last night is because he absolutely refused to get on the plane. Later he refused to get out of the car (while all the while talking to my brother as if he was an employee of the airport) and then he cried going upstairs to bed. All of these things form a pattern for me that he believes that this is the last time he will be doing any of these things. He knows, if only subconsciously, that he has come home to die. Smart man.

In the meantime, it's quite group effort to handle him all the time. Trying patiently to convince him to do anything is a full-time job, so we take turns, depending on what the situation is. He is still very angry, so we tend to tag-team him, so when he gets mad at one of us, the next one can jump in.

He looks a bit better this morning and is not completely off his head, but we will have to look at what the next few days will bring. I will probably be updating here fairly regularly, as I am going to be in Israel for the foreseeable future.

It is at times like this that I am grateful that I have a close-knit, supportive family. We truly are all in it together and will pull together to try to make this as painless as possible.

Monday, 28 November 2011

Passing the Time

My parents are hoping to be back in Israel at the beginning of next week, once my father has begun the new cocktail of drugs (flogging a dead horse, anyone?). After that, my classes finish on the 15th and I should really be booking tickets. The question was when I should book a ticket back to the UK. My mother suggests that I should see my father before deciding on when I should head back. The implication is that he is not in a good way and I will need to decide whether to stay for the foreseeable future.

Sensible Brother and I have been talking about "after", a pretty transparent euphemism for "when my father dies". Mostly we have been talking about his worries and concerns, some of which are legitimate and some of which are unfounded but worrying nonetheless.

What has been interesting is the way in which the death of a parent forces you to grow up. Obviously, having lived away from my parents for a decade, I don't turn to them every time I have a sniffle or a lightbulb blows in my bathroom. But I do ring them if I need advice, if I am out of my depth or if it seems that there is something they should know. My brother is slightly more dependent, but that is mostly by choice. My father, cryptic man that he is, has a tendency to give advice that seems to have little foundation. When asked why he does things the way he does, he responds with "one day you will understand". My brother worries that he will live his whole life by the rules set down by my father, only to realise on his own deathbed, that he never did understand and simply followed the instructions doggedly, waiting for the answer to become clear. I explained to him that part of being an adult is learning to find your own answers and to evaluate the information that you are given against your own experience and against expert advise. If he is not sure about something, he could ask a lawyer, accountant, doctor, etc. Part of growing up is realising that your parents are people and do not have all the answers, as much as they might present themselves as though they do. But it is hard to digest the idea that someone you may have relied upon to have an answer will no longer be there, whether their answers are good or not.

I have been reading back over my posts and I can see how far we have all come on this god forsaken journey. As much as we will all have learnt and understood, my father will still be dead, and wisdom is little consolation for that.

Happy news is thin on the ground these days and will probably continue to be for the next few weeks. I regret to report that we are coming to the end of this war. All I can hope for is to keep my chin up and remember that life always kills you in the end.

Thursday, 24 November 2011

The long and winding road

So my father's MRI scan shows that the tumours are spreading and are now completely blocking his bile ducts. This is bad. Basically, the doctor says that blocked bile ducts are "negative to life" , which I thought was a charming way to put things.

The new plan is to try a couple of types of treatment, but basically we are at the "prolonging life" stage of things. They are hopefully going to release my parents to Israel next week.

This is the final battle and my father is going to go out guns blazing. What does this mean for me? I am trying not to worry about the possibilty of missing the last few precious weeks with him and I will go as soon as I am sure that it's the right time. go

I had a momentary "bad" thought when I was told that they are going to continue treatment: "why won't the just let him die in peace?" This is a deeply selfish thought, but not necessarily one that I want to disown on that ground. Whose time are we buying and for what purpose? I am worried about the pain that my father might suffer, having seen my grandfather's pain a short time ago. I want us to be able to say that it was not a mistake to fight to the bitter end and that it was not sheer bloody mindedness that ultimately caused him more suffering, merely because we weren't ready to let him go. There is no question about him: he will never be ready to go and will leave this life as he came in, kicking and screaming. But maybe this is the wrong tack to take. Maybe it is less important to worry about how we will look back on this time and more important to try and make the best of now. We will all feel guilty about certain things that we did or didn't do, eventually, but, hopefully, we will remember what it was like here, in this moment. But I am ready to turn back the clock now. I don't really fancy coping anymore and would really like to go back to a time pre-cancer, pre-blog and pre- questioning every action in case it's the last. I'm ready. I keep seeing images of the Trojan war in my head. Achilles, Hector, Ajax, fighting a war they knew would kill them. Bring it on, bitches. We shall fucking overcome.

Friday, 28 October 2011

There is a reason I shouldn't make plans

I broke my own rule and now I am paying for it. Actually, lets start from the top, seeing as I failed to post anything when stuff happened.

First, my grandfather died, as we knew he would. I was in Eastbourne at the time, doing some work experience, but had tickets booked for Israel anyway, so off I went, about 3 days into the Shiva. I knew when I left Israel that it would be the last time I saw him, and I still don't have any regrets about that. Who knows, though, they might catch up with me. My biggest problems continues to be that I keep worrying that I am not taking advantage of the opportunities when they arise. However, I am learning that sometimes opportunities are there to be missed.

The short version of the story is that my father had another infection when they arrived in Houston. His haemoglobin is very low and his ammonia is very high. The doctors reckon that he his leaking blood from somewhere, because it doesn't seem to matter how much protein he eats or how much blood he receives, the haemoglobin doesn't rise. The oncologist described it as "like having a wheel on a car with a very tiny puncture that the mechanic can't find". The mechanic is him and his colleagues and at this point, their best advice is "just keep pumping up the air" i.e. the blood.

The problem is that he hasn't had any treatment for the cancer for weeks. And every time he has not been in treatment in the past, he has gotten stronger and sorted out his other health problems in preparation for another round of chemo/radiation/whatever. This time that hasn't happened. He has not gotten stronger, he has not bounced back and the doctors are not willing to treat his tumour when his body is so weak. And they are not seeing it improving.

So, in short, they are foreseeing treating his secondary symptoms but being unable to do anything about the tumour/s (there are many in his lungs that are becoming an increasing concern) for the foreseeable future. Now, I don't believe in miracles, and we all have to look at this realistically, so that our lives don't fall apart. Without treatment, the tumour will run rampant and we know what happens then. Obviously.

My brother reckons we shouldn't make any plans for Christmas (actually, he thinks we shouldn't make any plans for Thanksgiving, but I didn't have any anyway, so let's move on). My mum thinks that if anyone got pregnant at this point, my father would still not live to see a grandchild, but no one can say for certain, obviously. So I have a Devil's Timescale here, which makes it difficult to do anything.

So, things I didn't do in these last couple of months:

1. Be there when my grandfather died (horribly, I might add. From what I understand, it was quite hideous and he only stopped being in intense pain when they moved him to a hospice, less than 24 hours before he died. He didn't like the hospice either, but at least they could control his pain a bit).

2. See my parents for between the beginning of September and the end of October.

3. Get a job

4. Make any commitments that "my father is dying" wouldn't get me out of.

Things I did do:

1. Started a law GDL. Good for me and all that. It's hard work and I am getting seriously invested in it personally. Which isn't to say I can't easily drop out, but I would be miffed.

2. Got accepted onto a pro bono clinic. We have clients, who are real people, who really need our help. Not turning up would be frowned upon in more than one way.

3. Signed up to volunteer with an organisation. I can still back out at this point, but I have been waiting a year for the training.

4. Signed up for Mooting. Right now, that, again, is not a big deal, but it will be if I register properly.


As you can see, the Devil's Timescale makes it difficult to know what to do with all these things. If we are talking about 3 weeks, I should drop everything now. I will get my money back for part of the course (I think) and upset the pro-bono people, and I will have to start again next year, but that's the way it goes.

If it's 9 months then I will have finished the course but be doing summer work experience or something. Less of a concern.

If it's anything between now and six months from now and I don't know where, I will have to pray that they don't chuck me off the course and anything else I am doing.

So here is where I broke my rule. The rule is: DON'T MAKE ANY PLANS THAT MIGHT INVOLVE LETTING SOMEONE DOWN. I successfully did that for over a year and then I broke it big time by trying to grab the opportunities that came out of my course. Idiot. I should have let them pass me by. It hurts on a professional level, but personally it makes things easier.

But wow, look at me. I managed to whine about my commitments for a whole post and didn't stop to consider the important questions for a moment.

Should I drop everything (again) and spend all the time with my parents, bearing in mind I did that last year?

If not right now, when is the right time to call it? I don't have a holiday from my course now for another 6 weeks.

Should I quit my course now, before I get too invested, on the assumption that I will fail it on attendance anyway at some point, and at least now I will get my money back?

Are there any people whose needs are more important than mine right now? What is best for my parents/partner/grandmother/brothers?


I told some huge lies of omission to my grandmother last night. She had been ringing since mid-afternoon and my mother had been ignoring her and it was obvious that she wasn't going to go to bed before talking to one of us. So I was tasked. Side note: I should really have word with my mother about making me do her dirty work. It's not fair to sour my relationships with people because she doesn't have the energy to do it herself. If she calls someone with bad news, they understand. If I do it, I'm just cruel. This must stop. OK, back to our programme. I rang my grandmother and told her about my father's trip to the dentist, that he has been eating like a hellhound, and that he was in a fairly good mood. I failed to tell her about the unscheduled meeting with the oncologist and that his markers are at 20000. Luckily, she doesn't know how to get online, so I am safe. But I felt shitty about that. She needs to know eventually, even though she often makes things 1000 times worse than they were before we told her.

So there it is, incoherent, messy and unstructured, much like life. On the other hand, my law notes are beautifully organised. FML.