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melting but not down

Sunday, 4 September 2011

as one door closes......

Mum was admitted to hospital on Friday.  I got there at 7pm, about three quarters of an hour after her, my daughter arrived at about 8.30pm and we stayed with mum until around 2am.  During all that time we gave umpteen different health professionals the same medical background history but not one of them passed it on to the next.  Nor did anyone check mum's records on the computer but asked us for details that we couldn't provide, such as what type of dementia mum has (no-one has ever told us) and what side of her body was affected after her stroke in December 2007 (can't remember!).  Poor mum had to endure lots of manhandling which was often painful.  The worst was when she had to be sedated because she wouldn't keep still for the brain scan to check for a bleed in the brain, the doctor fetched my daughter and I to keep her calm while they fitted a cannula in her hand, we had to hold her arms down while they did it and mum was crying out and clawing at us, trying to push us away the whole time. So upsetting. In the end, I had to don a lead apron and stay with her during the scan but still couldn't keep her from moving now and then, with the result that the scans weren't very clear and she had to go through it all again the next day.  The clincher was the last doctor she saw in the early hours of the morning, a sadist who insisted on banging away at her limbs with a stick to test her reflexes as she fought back at him, clearly in pain.  He did not seem to be willing to accept that mum had probably had another stroke, despite all the supporting evidence, and wanted to go down the infection route, subjecting her to a blood test there and then.
This is an extract from the information sheet I gave the ward sister yesterday:

Medical History
TB during WW2, currently diagnosed with angina, high blood pressure, heart murmur, pernicious anaemia, osteoporosis and dementia.  Also very deaf.
In the last 12 years, falls have resulted in a crushed vertebra, dislocated shoulder, chipped shoulder bone and a broken wrist. 
(List of hospital admissions)

Prior to the fall at 5.15pm on 2 September 2011 (another care home resident knocked mum’s chair over and she hit her head on a radiator), mum was eating well with encouragement, she could grip and lift a cup of tea in her right hand, she could stand and walk if supported on both sides, she was alert and her speech was clear.  Within an hour of the fall, she had lost the use of her right arm and leg, she was unable to form recognisable words, she was drooling and seemed less aware of her surroundings. 

I have completed an end of life form for the care home, requesting that if mum’s heart stopped, she would not be resuscitated.  I have said that I would like her to have life prolonging treatment to make her comfortable in her last days, eg oxygen, but nothing invasive which could distress her, such as an intravenous drip.  I am concerned that her current stay in hospital is going against the spirit of this plan.  In the 8 hours following her arrival in A & E, she had numerous physical examinations which confused and often caused her discomfort, she had a cannula fitted to administer a sedative prior to a brain scan which clearly hurt and frightened her and she had to be restrained on a number of occasions for these procedures to be carried out.  Mum’s dementia and deafness means she does not understand what is happening and this is upsetting, both for her and for us, her family.  I am worried that if she remains in hospital for any length of time, she will not only be subject to further discomfort but will also fail to recognise the staff and surroundings if and when returned to the care home.  This is mum’s 92nd year.  She is very frail and, being realistic, may not have much longer to live.  I would prefer her to pass away in her own familiar room at the care home in the company of staff who have cared for her well with real affection for the last 2 years, rather than risk her dying in hospital, among strangers.

I was told that the End of Life agreement with the care home carried no weight with the hospital but that the consultant had stipulated no resuscitation, so at least that's in place.  However, if I don't want mum to have to go through all the invasive procedures again, I will have to arrange a  meeting between the family, the care home and mum's GP to draw up an agreement to that effect. Apparently, if mum is admitted to A & E on a future occasion, she will automatically face the same tests and be admitted to a ward - hospital policy. 

My daughter and I visited mum yesterday afternoon.  She seemed please to see us but was clearly exhausted.  She is hooked up to a drip for fluids as she can't swallow very well and still can't speak.  In fact her speech has deteriorated, she was trying to form words on Friday but yesterday a weak semi-mutter was all she could manage and not very often.  Staff on the ward know my feelings about invasive treatment so hopefully they will not attempt to fit a nasal tube if they can't get mum to eat anything.  She managed only a few teaspoons of thickened juice yesterday but we told the nurse she loves chocolate and bananas so they're going to try her with flavoured mousses. The earliest we'll know whether mum can go back to the care home will be Monday, when the consultant does his rounds.  The home is keen to have her back and can offer any nursing care that she needs. 

As we waited in a side room in the early hours, lovely daughter said "do you want to see something to cheer you up?"  and handed me her mobile phone.  This is the picture she showed me:

I'm going to be a granny!


Greg said...

Arghh... yes, I remember how frustrating it was when my Mum was in Hospital. They never even got her name right, despite my constant corrections and insistence that they put it on record that Mum had only ever been addressed by her middle name. Like you, I felt that Mum would be happier in the familiar surroundings of the Care Home, tended by people she recognised and who knew what she could and couldn't manage. Mum had a tendency to be uncooperative when she didn't know the person who was trying to get her to do something, so the Hospital staff wrote her down as more severely incapacitated than was strictly true.

Saying all that, I'm glad that you have been with her. It will give you peace of mind that I haven't got about my Mum's period in Hospital. I'm glad, also, that you recognise that your Mum could be nearing the end of her journey. I wish I'd recognised the signs myself, or had understood what the Care Home staff meant when they reported that Mum was "poorly".

In other news, congratulations, future Granny!

Lily said...

Thanks Greg, its good to be able to share with someone who's gone through the same stuff. Mum was actually taken to A&E twice after her fall. The first time they checked her over and sent her straight back - can't help wondering whether it was a bit slap dash, surely there would have been signs that something serious was going on? The second time was more or less straight after her return to the home, when staff noticed all the signs suggesting she'd had a stroke. I phoned the hospital this morning and the said she was settled and comfortable, no change. In other words, exhausted and still unable to speak or swallow. Doesn't look good. Will post again after this afternoon's visit.

bulletholes said...

Oh lily, what a great post! I'm so sorry to hear about your mum, but that pic at the end put me to tears!
You reallly shook me up!

rilera said...

Thinking of you.