Isabelle has endured her final chemotherapy at last. It has been horrendous for her, but she has carried it brilliantly well. She always looks beautiful and doesn’t moan at all. I think she will bounce back quickly and her head doesn’t look like a tennis ball any more.
Tomorrow Joshua has his own first ‘gig’ at an open-air festival. He has been busy revising for exams, whilst doing lots of band-practices for this special occasion. I’m sure I’ll feel proud to see him performing live on stage with his own music and lyrics.
Mum still has two yellow and purple eyes, but is much the same in her general state. Now I usually find her sitting in her ordinary chair with her legs propped up on the bed – I suppose they are nervous that she might fall again. I have been taking her outside for a walk as the weather has been quite glorious. Yesterday she was very wobbly though; it took her a long time to find her balance as she can’t seem to see what she is doing and mistakes patterns on the floor for obstacles. It makes me smile that the sort of words that she still speaks clearly are almost instinctive responses. So, if I say how soft and velvety the petals look, she says “Yes, I know!” Or she receives a strong taste or sound sensation and it will be, “Oh, that’s lovely/horrible…” Sometimes she will choose the opposite, so yesterday, when I gave her some cola to drink, she said “That’s nice and hot.”.
Simon has been made redundant, which could well be a blessing, as his work has been all-consuming since Christmas. Hopefully now he will be able to focus more on his exciting projects and innovations and get a business going. We might all need to tighten our belts for a while first though.
Today I found Mum dozing in a bucket chair in the dining room, but was first given some forms to fill in about Mum’s qualifications, employment history and such things, which did seem strange (and quite heart-breaking) under the circumstances.
The staff have been concerned again about Mum’s shaking, which seems to be more regular, and have referred her back to Neurology at the West Hospital. The appointment is for next Tuesday.
Two nurses took Mum back to her room and she sat smiling, eyes closed, doing her new sit-up movements. Heaving herself upright she would chant, then would slouch and be immediately asleep, mouth open and completely relaxed. It shocked me at first as it looked like she’d died. She is also very pale. I could not wake her with words or strokes, so I squeezed her knees and she jumped, again a few more sit-ups, song-jingles and out-for-the-count.
I was given a hot meal, dessert, cup of tea and medication to feed her with – in all it took over an hour until the plates were empty and all the time her eyes were closed. She would open her mouth to eat and then be asleep again…every time I squeezed her knee she would playfully growl like a tiger and giggle, but her sleeping was not fake. The staff reasoned that they had given her a bath this morning and it had made her tired. When she’d finished eating, she stood up, eyes still shut and began to shuffle away.
We had good fun today though; I really enjoyed her playfulness and having something to do. The nurse recounted a recent occasion, when a doctor asked Mum to open her mouth and she snapped at him like a crocodile and made him jump. She is funny.
Simon is setting up his business and I have been made a director. That is new, exciting and equally daunting. I need to make some wise decisions. I wrote down the things for which I feel myself responsible at the moment. The jobs are diverse and endless…but we do need to earn an income too.
I had to be at the West Hospital today for Mum’s appointment in Neurology. She was with two members of staff and looked very dopey, though they said they had not given her anything.
The Neurology doctor was most impressive. Whilst we were there he read through the salient parts of Mum’s two years in Neurology – the diagnosis of frontal lobe epilepsy, the EEG, etc – and asked me to describe exactly the sort of seizures that I had witnessed. Then he took Mum’s hands, spoke to her and touched her face and hands…he was very gentle. He then offered his diagnosis very clearly and confidently. He doesn’t think Mum has epilepsy, rather that she is exhibiting ‘Cortical Mioclonus’, which is very common with sufferers of CJD and Alzheimer’s. Frontal Lobe seizures usually happen in the middle of the night, in deep sleep, not during waking hours. The faints, he said, sound like ‘complex partial seizures’, followed by Mioclonus as she comes out of the faint. ‘Complex’ because her brain is so caked with plaque. We all experience some ‘Mioclonus’ – it is that feeling as you fall asleep, you dream you are falling and jerk yourself awake. That, he believes, is what Mum is doing. Apparently the Tegretol would need to be at least 600mg, twice a day, to keep epilepsy under control, but Mum is on 100mg twice a day, so it would not stop her having epileptic seizures anyway. The other point is that Tegretol does not control Mioclonus either. We could stop the Tegretol and put Mum on ‘Cepra’, which would control the epilepsy and the Mioclonus, but it could be very disruptive to her mood. The Mioclonus does not damage the brain, so we must consider if it is worth taking the risk of changing her medication. If the Mioclonus were causing Mum distress, or she began having seizures, then it might be worth trying the ‘Cepra’.
The other question he posed was about the dementia – now that Mum is so far gone in her dementia, the symptoms are pretty much indistinguishable, but it could be Fronto Temporal dementia, he thought, rather than Alzheimer’s. He said it might be worth doing another MRI scan, if we wanted to know for sure. Do we want to put Mum through that to satisfy our own curiosity, or not?
So, they are the two questions: MRI? Change to ‘Cepra’?
I still question whether I have done the right thing for Mum. I see her pretty face warm to life with affection and interaction and I wonder how different her quality of life might be if she had remained here with family around her. But I know that the physical environment would also be too challenging here now – with stairs and corners – and showering was already dangerous before…and the complete incontinence…but they are not insurmountable challenges.
Mum is still much the same. She has been sad/weepy/fed-up when I find her, but cheers up and is happy by the time I leave. Sometimes she just bursts into laughter for no apparent reason.
Last week when I went, the traffic was bad and I arrived at noon. I know they have ‘protected mealtimes’, but often I arrive before lunch and am able to feed her myself. When the nurse came to answer the door she looked at her watch and said that I could not come in because it was a minute after 12. I apologised for being a bit late and said that I liked to feed Mum, as she always eats in her room. I’d have thought they would appreciate the help, really. Eventually they let me in and I was able to feed a very tearful Mammy. We managed to get out into the garden for fresh air and a walk about too. I put her hair into two pretty plaits as I followed her around and fed her Turkish Delight and tea.
A friend has told me about the RCN deciding to be neutral about new laws on ‘assisted suicides’. I also read that the new Mental Capacity Act states that “doctors must now starve and dehydrate patients to death in some cases. And if they refuse to do this doctors – and nurses too – can be dismissed and treated as criminals.” “’Euthanasia by neglect for mentally incapacitated people”, was how it was described.
It could be just scare-mongering journalism, but I must investigate. Shocking thoughts. The article from RCN (on the BBC website) states,
“The move comes as a survey for a newspaper suggests 74% of people want doctors to be able to help people to end their lives. According to the survey…, support for assisted suicide was especially strong among those aged between 55 and 64. The poll also suggests that six out of 10 people want friends and relatives to be able to help loved ones to die without fear of prosecution….”
[See “RCN neutral on assisted suicide” from the BBC News channel 25/07/09.]
Clearly the issues are very complex. Funding and quality of life being just just two aspects of that complexity from the state perspective. As with the question of ‘they shoot horses, don’t they?’ – we consider it ‘humane’ to put a suffering animal ‘out of its misery’, if it has no prospect of recovery. And how many people can our NHS support on it’s over-stretched resources? Allowing a person to die ‘with dignity’ – is this ‘playing God’? Or is keeping somebody alive on a machine, with no hope of recovery, also ‘playing God’. I believe in the sanctity of life, but I admit to not knowing and to respecting conflicting perspectives here. There are questions of who is responsible for what, who champions the cause of the poor… issues that we all need to address realistically. Still, I find the possibility of abuse of such powers disturbing.