I am running in the Race for Life in Regents Park in London on 19th July. This is to raise money for Cancer Research.  I have decided to try and raise money in this way, as I find running very challenging, but that is nothing compared to the challenges faced by anyone that has been affected by Cancer. I am sure we all have a friend or a family member who has suffered from this disease, and feel helpless most of the time. This is your turn to do something to help.

If you have ever used this website to help you find a resource, and found it helpful, maybe you could be kind enough to sponsor me a very small amount - every little helps. Even 50p would be great.

My online fund-raising page is: http://www.raceforlifesponsorme.org/caramorgan 

If you tick the “Gift Aid” box, we can raise even more money, so please don’t forget to do that.

Thanks so much if you decide to help.

The first stage of bereavement is shock and disbelief according to one website I consulted about this. It probably explained why I felt physically sick for most of last week and walked around in a daze, constantly having to remind myself what had happened, for part of me believed that mum was still in hospital. Part of me still does. Even though I went to collect all her belongings from the nursing home on Wednesday. Even though I am now wearing her wedding and engagement rings. Even though I wake up from sleeping and the words “mum is dead” are the first I hear in my head. The funeral on Friday will help me start processing everything much better, and will make the surreality of the past week into a future reality.

I am ok. I really am. But then I really am not. There’s no easy way to get through this feeling of loss other than to just feel your way through it. Quite literally. I considered going to see a councellor again, but what are they going to tell me that can help. I know she is no longer suffering, I know that I am still experiencing shock and disbelief. I know I can’t change it, and I know all the bad memories will eventually be replaced by fond ones. There really is nothing else you can do but get on with your life. Which is why I decided to go back to school today.

People have been so kind. Blog comments, text messages, emails, Facebook messages, phone calls and cards have been coming constantly since last Monday. The support and love of friends, colleagues and extended family has been overwhelming. At times like this, you really do know who your friends are. A cliche, but nevertheless true.

Going back to school today was a decision I didn’t take lightly. Part of me was wondering how I could be so callous as to return to “normal” even before the funeral has taken place. But I know that life goes on and being around supportive people at times like this is important, rather than sitting at home dwelling on everything which I cannot even begin to process until I have seen mum on Friday and will then know it’s really happened. Everyone was so kind at school. Colleagues have offered to help me “in any way”. Kind words, but would they really appreciate me dumping a whole load of reports that need to be written on their desks, or sit all my parents’ evening appointments for me?!

The nicest things that happened today was the response to my absence last week by my pupils. My sixth form tutor group had made me a card, and so had one of my maths classes. What particularly impressed me was that the group of 14 year olds I teach managed to organise a collection, all by themselves, which they have donated to the Alzheimer’s Society. Their kindness and understanding knows no bounds.

I took this photo with my mobile phone camera two summers ago. Mum went to stay with one of her old school friends who she had known since they were both 11 years old. I joined them in Bournemouth that summer and we had been drinking wine in the garden when this photo was taken. Mum had been diagnosed with Alzheimer’s Disease earlier that year and she was terribly frightened about what was happening to her.

While she stayed at her friend’s house that summer, we kept her busy and took her out during the day, but at night she sat and sobbed in her bed, too scared to turn the light out. She asked me to explain what was happening to her brain and if she was going to be alright. All I can remember thinking is that I could not lie to her, but I don’t really remember what I told her now. How do you tell someone they have Alzheimer’s Disease? And at such a young age? All I could think of was at some point she would not know she had AD because she would forget. But that wasn’t a comforting thought. There is nothing comforting about AD.

I remember on our way back from shopping in Bournemouth one day, we decided to get the bus back to the house as we had been on our feet all day. The three of us waited at the bus stop and I will never forget mum turning to me and asking if she’d met me before. I tried to make light of the fact that of course she had, for I was her daughter. She was incredibly upset by this, but I then told her that the most important thing was that I wouldn’t forget who she was. Words that now seem to have much more significance than they did back then.

I never imagined that mum would die whilst I was doing bus duty. I never imagined finding that out on my mobile phone at a busy tube station whilst on my way to see her, knowing that she had taken a turn for the worse. I had imagined that somehow I would know the end was near, and that I could be at her bed-side, holding her hand, ensuring that she wasn’t alone at the end. But the best laid plans of mice and men, and all that.

Mum’s last few days were strange. On Thursday she was moved to the nursing home that we had been fighting so hard to get her into for all these weeks. On Friday she broke her thumb, by sitting on it, and was rushed to A&E to get it sorted out. She had to have her thumb nail taken off so they could do whatever they had to in order to mend the thumb. To fight any ensuing infection, she was pumped full of antibiotics. A very long and distressing day, no doubt.

On Saturday, Gastropunk and I went to visit her in her new home. We took some CDs with us that we thought she would like - Cliff Richard’s Platinum Collection (the embarassment of having to buy that in Borders was immense, so we bought a Velvet Underground CD also, just to prove to the sales assistant that, actually, we are cool - honest!) and Neil Young’s Harvest - one of her all time favourite albums. Yes, she did have good taste, Cliff Richard aside. Her new home was lovely. The staff were so caring, and the other visitors took time to get to know us because of course we all thought we would be seeing a lot more of each other. Yeah right. Before we left to go home to see the firework display that evening, I noticed that her breathing was quite laboured. Having read about the end stages of life, I realised this was an important sign and then promptly put it to the back of my head (to deal with later) and sat on it for the remaining days of her life. We left to go home feeling so relieved she was being cared for properly. She didn’t wake up the whole time we were there, but we did wheel her out into the garden for her first 15 mins of fresh air since 1st September. We sang along to her Queen and Neil Young CDs in her bedroom before going, and hoped that on some level she was aware we were there. Maybe it was our singing that finished her off.

On Sunday she stayed in bed. The nursing staff were convinced she was still very tired from the drama of Friday, but on Monday she went downhill very fast. Her temperature changed and her breathing problems became more evident. We had to make the decision about whether to send her back into hospital (to be put on IV antibiotics to fight her apparent chest infection) or to let her stay in bed at the home. It was not a difficult decision, and we decided that she of course should stay put. At 4.20pm I got the call that told me about her worsened condition and I immediately decided to go straight up there. A few phone calls later and Gastropunk had been given two days off work and we were ready to go. Twenty minutes later I was at Hammersmith station, about to get the tube home, when my step-father called to say she had just died, and he mad missed her by 5 minutes.

My world stopped. I had to tell myself to blink, for I had forgotten how to. I suddenly had a chai latte in my hand, which I must have bought in a daze from Starbucks. I had phone calls to make, people to talk to, make this whole thing seem real. And then all I could feel was this river of sweat running down my back and the knowledge that life would no longer be the same. How I got on that tube and the bus which took me home, I shall never know. It was hell. I coped by doing the Sudoku puzzles in the London Paper, yes all three in record time. Even the difficult one. All my energy was focussed on logic and reasoning, and not the sense of loss that was rising up inside me.

I got home to find candles lit in the fireplace, soothing music on the record player (yes we live in the dark ages) and dinner being cooked. And dozens of text messages on my mobile phone. And then the phone calls came. A hot bath, home-made chicken soup and a long night-time walk in the chilly air helped to sort my head out a little.

It wasn’t until I went to bed last night that a feeling of calm started to wash over me, in relief that mum is no longer suffering as she had been for so long. But it will take a long time for that to be a comforting thought. At the moment, it just makes me realise the magnitude of my own personal loss. The end of an era. A start of a whole new one. The lights have gone out, but I am looking forward to the dawn.

It really is amazing what writing letters and emails can do. On Thursday night I wrote to Radio 4, as my previous post explains, and then yesterday lunchtime they called me. A researcher for woman’s hour was interested in our story and is going to be referring to it in a programme on Monday morning. I believe the focus of the programme is problems with the NHS or it could be specific to Alzheimer’s. I am not sure because I only had 7 mins to speak to her before having to dash to registration and so it is all a bit of a blur really. I told her that I wanted to do whatever it takes for other people not to have to go through what mum has experienced and she is therefore going to read my blog and get back to me for another future radio article. It’s so difficult to know where to start airing one’s grievances. We shall of course go through the hospital’s complaint’s procedure but who knows what the outcome of that will be (probably not much if NHS admin are involved). But getting this information over to the general public, and raising this issue as a matter of urgency, is paramount.

I have just emailed the Alzheimer’s Society and Woman’s Hour on Radio 4 about our long trail of neglect by the NHS. As a regular and avid listener of Woman’s Hour I am hoping that Jenni Murray might be interested in helping us raise this issue in the media. No one should have to suffer like my poor mum has. So, let’s hope they follow the link to my blog and let’s hope that some kind of action can now be taken. Let’s face it, if you can’t trust Woman’s Hour, who can you trust to help you?

Mum moved into the home today. It all went well apparently, and I am so relieved that at last she has her dignity back. I couldn’t be there to help her get moved in (the joy of a full-time job) but I shall visit on Saturday. For the first time in a long time I am not as worried about the impending visit.

The initial assessment undertaken by the staff at the home was an interesting one, and I am keen to see if their observations are accurate. If they are, many questions will need to be asked about the NHS definition of “care”.

On the 19th October, Mum weighed 7 stone. Her weight now is 6 stone. Her new carers are very concerned about this above all else. On Sunday evening this week, she was declared Nil by Mouth as my previous posts explained. However, my step-father was not to be put off by this and he managed to force some fluids into her this week albeit slowly and with great difficulty. The whole problem was of course the issue of her swallowing.

The nurses today declared that she is able to swallow and indeed managed to feed her a whole meal this lunch time. Not a nasty mush of sticky, gloopy and revolting chick-pea concoction, but real-life vegetables and meat, pureed, and separated into portions so they tasted nice. She even finished off with bananas for dessert. Maybe she ate this food because it tasted a lot better, or maybe she ate this food because someone properly trained actually took the time to feed her.

And here I have to think about the implications of this.

I am presuming she has lost weight for one of 2 reasons:

1) her body is no longer metabolising anything she eats and therefore she cannot take any goodness from the food

2) she was not being fed except for the lunch time session where my step-father fed her.

The care home’s priority is to help her put weight back on, for her bones are in danger of breaking if she falls because of the lack of any natural padding. Now, if she does start putting weight back on this can only mean that she was being severely neglected by the NHS. If she doesn’t, then it’s nobody’s fault and thus it is the natural progress of the disease and her body is indeed shutting down. Like any good scientist, all I can do is observe and see what happens now she is to be fed 3 meals a day, assuming they are right about her ability to swallow.

The care home are very concerned about the pressure areas on mum’s body, being that her bones are protruding and sticking out, her comfort being a big issue for her palliative care. There are areas on her body that have become very sore and broken due to her being in bed and sitting in the chair for too many hours at a time. She now has a very comfortable air bed in her room which will be rather better than a series of mattresses on a cold hard floor. Could the NHS not have acquired an air bed? Surely the risk of pressure sores are very routine in their line of work?

The accusation of neglect is a big one, and one I shall be pursuing in the complaints procedure of the hospital (in addition to writing to my MP and a letter to the Guardian methinks). There is much evidence in this series of posts alone to suggest she has been neglected. If the feeding causes a weight increase, she need never have experienced this with the NHS. Had she been moved into a home 6 weeks ago, she might not have been allowed to be effectively starved. Time will tell, although how much time we have is the big unknown.

As for the letter of complaint, I really don’t have a clue where to start.

Mum has finally been given the all-clear to move into the nursing home that has a space!

She is moving there tomorrow morning.

We are so happy. It is the most positive thing that has happened for mum in the last few months. Our time of waiting for her to be somewhere more comfortable and in more caring hands has finally ended. She shall spend her remaining days in a room with a bed, curtains and carpet. She will have a CD player where her Cliff Richard and Beatles CDs can be played for her to make her environment more like home. She will hopefully, on some level, know we have done our best to make her life have more quality.

Finally a place in a nursing home has been found for mum. My step-father decided not to wait for the hospital and social services to get back to him about a place, and instead he did his own research into finding a place for her. He started by asking the hospital for a list of nursing homes in the area and in return they gave him a shoddy list of a handful of homes, which did not even contain the full address or any contact details for any of them. A simple Google search returned some 8 pages of homes, all with their websites and contact details. A direct phone call to one of the first on his list was all that was needed to find a spare bed which also fits all of mum’s specialist nursing requirements. 5 minutes is all it took, plus a visit to the home on Friday to make sure it was of a good enough standard. We have waited 7 weeks for mum’s continuing care assessment to throw something up, and in the space of time it would take to eat a sandwich he found her somewhere. We now wait to find out when she can be moved.

Since my visit on Tuesday mum did manage to eat a very small amount of food. However, my visit on Saturday found her even more of a skeleton and her ability to swallow, poor as it was, was even worse and obviously took up a considerable amount of her energy to be able to perform. We sat and tried feeding her with much frustration. It doesn’t help when the hospital food is barely fit for human consumption. I really don’t think it is difficult to puree real fresh food rather than feed dysphagic patients an absolutely disgusting concoction of practically inedible sticky chick pea mush. Hell, I would rather die than eat that stuff. Maybe this is the decision mum is making!

On the phone tonight I discovered that she was unable to swallow at all today. The doctors have now decided that she be declared “nil by mouth” as of tomorrow. Our difficult decision about alternative non-oral feeding methods will have to be made unless that decision is made for us by the doctors. I hate the thought of an invasive procedure being carried out on mum for I am certain that it would be very distressing for her and would only serve to prolong her suffering from this terrible disease.

Mum is now a skeleton. I can hold her wrist between my thumb and forefinger, with room to spare. I have small fingers. I could almost do the same with her ankles. Her vertebrae and pelvis are sticking right out of her skin, and she has to now wear hip protectors to ensure she doesn’t break these bones when she falls (she had another fall on Friday night).

I find myself wishing I believed in God at the moment, because then if I did I could tell him how much I hated him.

Mum is now in the End Stage of Alzheimer’s Disease.

Mum has now been moved out of the ward that she shared with 3 other patients, and has a side room to herself. There is no bed in her room, but a series of mattresses on the floor that must be made up like a bed a night. She cannot use a bed now as one night recently she managed to stand up on her bed and fell off it. The mattresses also soften her fall if she manages to get out of her chair and starts wandering during the day.

Mum is now 46 kg, which is about 7 stone. I can’t believe she is actually that heavy for she is now skin and bones. Having said that, she was weighed over a week ago so she is undoubtedly less than that now. Monday was the first day where feeding became a major issue. Yesterday I watched as my step-dad tried to feed her the lunch of mashed chick-peas with gravy and rice pudding with custard. He had no luck at all and his frustration was evident. It was painful watching. She had no breakfast either. It appears that she may be unable to eat now, as those muscles are beginning to shut down.

We are now facing the difficult decision of whether to instruct the doctors to feed her intravenously (or via her nose) or to stop feeding her altogether. What kind of decision is this? We either perpetuate her suffering by keeping her alive, by forcing fluids into her, or we make her suffer by not feeding her and let her body start to shut itself down. Having to live with either decision is beginning to haunt me. It’s the first thing I thought of when I woke up this morning and it was the last thing I thought of before I went to sleep last night.