26 October 2017

Bad bad news

I've been saying it enough times to people over the last few months but now a professional has told me the same. It somehow has more gravity and is more of a shock. 

My mother is dying.

Mum has been in hospital for 6 weeks now and we had not managed to see a doctor older than 25 years in all that time. The young girl looked out of her depth most of the time every time we asked for an update and gave airy-fairy unsatisfactory answers to our questions. Finally after much pushing Kay and I managed to get an appointment with the consultant on Tuesday and the news was not good. 

Mum is dying.

The arterial narrowings in her abdomen and legs have caused poor blood flow to her lower legs.  The huge postcard-size ulcer or wound on her leg is never going to heal, because oxygenated blood cannot get to it. Now she has infections in it and similarly the antibiotics cannot reach the wound. This means Mum has a permanent leg infection. The wound is getting bigger and bigger and turning the leg gangrene. The toxins building up are making her confused. 

She also appears to be losing blood somewhere internally (from her low blood count) but to find out where would involve uncomfortable tests which for a 94-year-old very frail patient would be horrible. So they are giving her blood transfusions as well as fluids as her blood pressure has crashed.

She is so weak that the physiotherapists have given up trying to get her to stand let alone walk. She is bed-bound. So going home is never going to be an option as she cannot even get from a chair to a commode now let alone to the bathroom.

She is in so much pain, they are drugging her up to the eyeballs with a strong cocktail of opiates and other painkillers. Ninety per cent of the time when I visit (which is every day) she is in a deep sleep and no amount of shaking or yelling in her ear will rouse her. Her lunch lies untouched at her bedside. I sit and write text messages on my phone while she sleeps and then I go home again. On her more wakeful episodes she talks in a whisper and comes out with weird stuff. On Monday she asked me what time my husband Greg was coming home from work that day. He's been dead seven years. It was like a knife through my heart.

The hospital have said she does not have long. From what they say it might be a matter of a few months, but obviously they cannot say for sure. To me she looks like she will barely manage it through the next few weeks. They want to move her to a nursing home to get more palliative round-the-clock medical care. This is now being arranged. Although I have guessed this all along, hearing it from someone else's mouth as a definite fact is hard to take. This is my mum. WAS my Mum. IS my Mum.

As if that news was not bad enough, on the same day, my best friend rang to tell me her husband died the night before of a heart attack. I have known him over 40 years. She was my best pal at university and my bridesmaid. By association he became a good friend too. He was fit and healthy and had not been ill until Monday night. At 73 he was not particularly old.  He was taken ill suddenly and died in A&E. It has been such a shock I cannot get it out out of my mind. 

What with the news of my Mum too, Tuesday was the worst day imaginable.

22 October 2017

Nightmare or Halloween?

Mum is STILL in hospital, just completing her fifth week and commencing her sixth. She exists in a nightmare world - half true and half made-up.

The half made-up nightmare is explained by the strong cocktail of painkillers she is on.  She tells me quite confidentially that the patient in the bed opposite arrived last night through the ceiling, so if I hear a bump from above, it's another one arriving. I swallow hard, trying to stem the tears I feel coming into my eyes. That is not the mum I know. The one who, five weeks ago devoured the BBC News Channel for entertainment and read the newspaper cover to cover. Some days I cannot rouse her at all and spend an hour of my visiting time just watching her sleep. A few days ago, when a nurse was administering some more oral opiates, she asked mum to confirm her date of birth and mum could not remember it. Who forgets their date of birth? My mum is currently a basket-case. Her eyes show very little consciousness behind them even when they are open. She will be in mid-sentence and either drift off to sleep or get easily distracted into silence, if a nurse walks by, and forget her thread of conversation. She speaks slowly, barely audible, as if conversation is an effort and as if she would prefer to return to her twilight world.

The half-true nightmare is that to date she has not improved at all, but got far worse. The infection in her leg (although it could be anywhere for all we have been told) rages on and the pain is still not under control. Until she is medically fit, the hospital do not want to discharge her, either to her home or to a half-way rehab care home. In five weeks we have not seen or been contacted by a consultant once. As my mother is hard of hearing and in a world of her own, you would think they would contact the relatives to discuss the plan. There is a consultant, I am told, but they have yet to make themselves known to me and I have tried to contact them without success. The day-to-day running of the ward is left to two juniors fresh out of university and definitely both under the age of 25. They looked overwhelmed, when I approach them for updates, and naively experiment on the patients including my mother. I have tried to be patient and let them get their practice in, but after five weeks I am losing patience (and they are in danger of losing patients), as I watch them struggling to cope. My mother is now so institutionalised and confined to her bed/chair/bed/chair that she cannot now stand up from her chair on her own even to use the commode. They now need to use a hoist to move her about. What a difference five weeks make when she was living independently in her own flat and getting around, albeit slowly behind a zimmer frame. She has deteriorated 100% both physically and mentally in the space of 35 days.

I have expressed my concerns repeatedly over the last few weeks. The infection has not gone and the pain is still there at the expense of her being almost unconscious or confused the whole time. Every time I express concern, they do not listen, but instead bump up the levels of painkillers, making her even more senseless.  I feel the anger in me rising. Enough is enough. I want some answers and real solutions. Time to knock some heads together methinks and demand to see someone over the age of 25 to sort this out!

10 October 2017

La-la land

Mum is in her fourth week in hospital. Every day I make the exhausting journey there and back to provide some sort of familiarity. Little did we know when she was admitted on 17 September that she would be in for so long. They are still fighting the infection  and the pain. She's on her third type of antibiotic and swallowing a cocktail of painkillers.  She has been poked and prodded with needles for all manner of tests and x-rayed a few times, all to no avail and no nearer to a cure or care plan. She is in a ward for the elderly and most of them, as far as I can tell,  have lost their marbles. Purely because of the unfamiliarity of the place, the pain and the infection, my mother is slowly joining them. She doesn't always realise she is in hospital. If she leaves her room to go for tests, she thinks she is being taken to another part of London, when in reality her bed has just been wheeled downstairs.  Sometimes her ramblings make no sense at all. The mum I took to A&E four weeks ago is not the same woman. She's worse. This is a woman who, four weeks ago, was reading the newspapers and hungrily devouring the news on TV.

I seek advice and an update on mum's progress from the young junior doctor  who sits at the nurse's station glued to her computer screen. I might add she is the only doctor I am able to approach, because the consultants keep well out of sight on the wards during visiting times. The young doctor, fresh out of uni, looks like a rabbit in headlights every time I enquire about mum's progress. A few days ago she attempted to put a cannula in mum's arm, spent a good half hour, preparing, feeling for bulbous veins, bathing the arm in antiseptic and feeling for veins again. Each time she inserted the needle, mum shot six feet into the air and screamed with the pain and the doctor had to admit defeat after two attempts. A nurse came along and did the procedure painlessly in 2 minutes. 

Before every meal (breakfast, lunch and supper) they test her blood sugar. A  needle prick in the end of the finger to draw blood which is then measured for blood sugar levels. They always come back within the normal range. Quite why this is necessary over a period of at least a week is questionable. Mum is not, and never has been, diabetic. They could surely establish that in a few days of finger pricking tests, but, no, the relentless finger pricking continues.

My mother is 94 and should be enjoying her last days. The leg ulcer is already causing immense pain, so quite why she needs to be subjected to more with pointless tests which get us no further, I don't know.  I am worried she is becoming institutionalised and may have transgressed into a la-la world from which she will never return.