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.

Today I am sad

It's hit me like a ton of bricks. I'm in Israel and I am caring for everyone. My mum has done her back in, so I am driving her around, ensuring that she can sit down and get back up again. It would be funny if it weren't so detrimental to my family's general wellbeing. 

But let's talk about my grandfather for a moment. Repeat. The following is about my grandfather. After his diagnosis last month, he immediately started Gemzar to see whether this would slow down the progression. After about 2 weeks of hideous side effects and not being able to get out of bed due to exhaustion, they went back to the hospital to be re-staged. In that short space of time, his markers had skyrocketed, his liver began to shut down and the cancer was spreading like wildfire.

So they sent him home. My mother and her brothers are arranging for palliative home care and he seems almost relieved that it will all be over soon. My brother has flown in from Canada to see him because I told him that we are talking about weeks now, rather than months. And I need to fly back to the UK today.

My father, on the other hand, is doing fine. He is still collecting fluid in his abdomen, but we think that we might have kicked the infection that has been plaguing him for the last 4 months. He is on what we would call "stabilising" chemo, which means that he is not supposed to be improving, but not supposed to be getting worse for the time being until my parents head back to Houston.

So, to recap, my mother can't function properly in any capacity because she needs help getting in and out of chairs, my grandfather is dying very fast and my father is complaining that no one is paying enough attention to him.

And I am sad. I have been trying to put my finger on it. It's not that I feel a sense of injustice, although it is unfair and stupid. I think it's more that I am so emotionally exhausted from dealing with my father's illness for almost 2 years that I don't have anything left to give to anyone else. My cousin is taking my grandfather's illness very hard. In many ways, I wish I could to. Because right now I don't feel like I am giving him the respect he deserves and I doubt I will be able to grieve him properly. Because I am all cancer-ed out. I have become cynical and hard and that makes me sad.

So I am leaving here now and might be back fairly soon to try to fit in more visits before my grandfather dies. Because, even though my father doesn't understand this, funerals less useful to me than sitting with someone and chatting while they are still alive.

Back to Houston

So I am back at the airport and on my way back to my parents.

Funnily enough, we are experiencing a repeat of what I talked about in March. My father has had more fluid taken out of his abdomen and is still down and out with the mystery infection that he can't seem to kick. There are various theories as to what could be going on, including a possible parasite. But we have to wait to find out.

In the meanwhile, though, I am hoping that my advice is going to finally be taken and my father will get a brain scan. Why? Because his mental state has been fairly rapidly deteriorating over the past month or so and I don't think that merely stress can account for it. He doesn't know how to do simple tasks most days, he forgets words and his memory is shot. The symptoms seem quite similar to dementia, but obviously, with the speed at which the decline has occurred, something else must be going on.

And his cognitive problems are part of the reason I am on my way there again. The second is that, in about April, my parental hired a nurse to keep an eye on my dad, give him medication and just be around when my mum needed a break. He was wonderful, but unfortunately his father got unwell and he had to leave. So my mum became the sole carer again. Sucks.

And it's hard. It's hard when my father thinks he's fine and starts talking utter crap to work colleagues (potentially an expensive problem). It's hard when he is in hospital the whole week and my mum has no one to relieve her for a couple of hours so that she can go and have a shower and change clothes. It's hard when everyone is far away and there is no one they can call if the shit hits the fan. So I go, and I just wish I could stay without reprecussions in my own life.

I wonder if my mum ever has time to sit and wonder about where her life has taken her. She has now spent almost two years doing nothing but caring for a man that is increasingly less able to be independent. I am not suggesting that she is either a saint or a fool, only that it would seem very odd to me. Then again, if I look at where I have ended up, I wouldn't have dreamed such a thing. Again, not in a bad way. Just unexpected.

Must check what my flight is up to.

More soon, I promise.