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melting but not down

Saturday, 17 September 2011

what do you think of it so far?

my home made aphasia communication chart -

Friday, 9 September 2011


The doctor has been out to see mum and has agreed that she should not go through that awful hospital experience again.  He has told the care home staff that unless she has broken bones or is bleeding badly, they should just put her to bed when poorly and send for the doctor.  Hope it works.

Does anyone know of a visual aid for those who can't speak, to express their needs like hunger, tired, in pain etc?  I did see one picture book on the net but it was about £45!

Monday, 5 September 2011

the sparrow has landed

Mum arrived back at the care home this afternoon, the hospital did not discharge her with a diagnosis or any test results.  The care home staff said she was starving and munched her way through lots of food on her arrival - no difficulty with swallowing at all!  When my daughter and I went to see her tonight, she had another sandwich, a biscuit and a few sips of tea.  She still can't talk but seemed  happy to be back in familiar surroundings.  Surprisingly she wasn't resting in bed after her ordeal - staff said she kept trying to get out so they put her in the lounge with the other residents where she enjoyed the company.  Her eyes are still a little hooded and her right side is still weak, she has limited use of her right arm and hand, but hopefully will improve with time.  Altogether, she looked much better than I'd expected.  So glad we got her out of hospital before she starved to death!

Sunday, 4 September 2011

there's reasonable treatment and there's unreasonable treatment....

Went to see mum this afternoon.  The back of her left hand is black and blue where the first cannula was.  Apparently it stopped working so they removed it and tried to insert a cannula in the back of her right hand, now also black and blue, but failed.  The new cannula is in her right arm.  I can only imagine mum's pain and distress as all this was going on.  They're planning to give her a third brain scan but will sedate her completely beforehand to make sure she doesn't move - I can't help thinking the anaesthetic might finish her off.  I don't understand why they're persisting with these procedures.  We were told on Friday night that although there's a 4 hour window to give a blood clot busting injection to potential stroke victims, mum wouldn't be getting one because of her age.  So why pursue the brain scan - there's probably nothing they could or would do if they did find a bleed.

Mum still can't talk, she mutters as though her jaws are stuck together but some of the old mum has returned - you should have seen the dismissive wave of the hand accompanying one 'sentence', directed at the nurse who had been talking to us!  Probably a good job she can't be understood at present.  I got her to take a few tiny sips of chocolate mousse - the nurses were surprised and said that was more than they had managed, they can't have tried very hard.  I just don't think she's getting the quality of care in hospital that she would have in the home, can't wait to get her back there.  I have to phone the hospital tomorrow afternoon to find out what the consultant has decided.

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!