knitaholic

Now that I'm going to be a grandma (next April), I've been inspired to finish Mr Lily's tank top and my winter cardigan, to clear the decks for baby clothes.  As usual, all I want to do is surf free knitting pattern sites and get those needles clicking, housework can go hang.  It helps to keep occupied - mum is not well at all, she still hasn't regained her speech or full mobility on her right side so I'm sure she had a stroke after that fall.  She sleeps and moans a lot, as though she's in pain, but spits out her medication - even the liquid painkiller.  She hasn't eaten for a couple of days and if she doesn't pick up today the home will call the doctor out on Monday to see whether s/he thinks the End of Life protocol should be put in place, with MacMillan nurse care, etc.

what do you think of it so far?

my home made aphasia communication chart -

sorted

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!

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!

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 92^nd 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!

Home

Its taken me a while to get to the point where I could write about losing my lovely little dog Kish.  Guilt and grief are powerful silencers.  For quite a while before now, possibly even a year, she was rarely able to last the day without needing the loo. As Mr Lily and I were both out at work, it meant we'd often come home to puddles or poops in the kitchen where we'd moved her bed for ease of cleaning up.  Even though I'd spread puppy training mats all over the floor, sometimes she'd managed to miss them or paddle in her accidents, leaving huge areas to clean.  Unfortunately I was usually the second one home at night, almost always to be greeted by an extremely pissed off husband who'd had to deal with the mess, not a task with which he coped well.  He constantly insisted it was time she was "put down" but I ignored him, reasoning that at her age (16) it wasn't surprising that she couldn't hold it in all day - we couldn't - and in other respects she was fine, eating and drinking normally, enjoying pottering around the house and garden, not in any obvious pain although a little stiff in her back legs and lately had often to be helped out of her bed.  I loved my hairy little daughter and wasn't ready to say goodbye.

Three Fridays ago I drove home from work.  At the corner of our village I stopped to speak to Mr Lily who was waiting for a lift to the pub.  He said Kish had weed and he hadn't had time to clean it up so had just put an absorbant mat over the puddle.  I carried on  home.  I'll never forget the sight that greeted me when I opened the kitchen door.  Kish was on her side on the floor, thrashing about in her own shit, panting, panicking, desperate to stand up but unable to get to her feet.  The mess was smeared all over the floor and her and when she turned her head to look up at me as I entered the room her big brown frightened eyes pleaded "help me!"  I managed to get her up, covering my hands in poo in the process and put her outside while I cleaned up the kitchen floor.  (I never minded cleaning up after Kish - I'm blessed with a poor sense of smell.)  Then I took umpteen anti-bacterial wipes and did the best I could to clean her up.  I couldn't have bathed her - the last time we tried that she had a panic attack and couldn't breathe, I didn't want to distress her further.  This is Kish just after the clean up, you can see how wobbly she had become.....

That Friday was when I realised it was time to let her go.  It would have been cruel to put her at risk of another episode like that - what if she were left floundering from the morning onward? No, unthinkable, watching the video I'd taken on my mobile I could see she was a tired old girl.  I phoned the vet and booked her in for the following day - having made the decision, I didn't want to delay.  I phoned lovely daughter and she came straight over, bless her - much as she loved Kish she supported me in my awful decision and promised to come with me to the vet's the next morning, cancelling other arrangements that she'd made.

I was up at 5.30am the next day, couldn't sleep and wanted to spend as much time with Kish as possible before going to the vet's at lunchtime.  I brushed and brushed her to get rid of all the grey tufty moulting hair so she looked sleek and pretty.  I talked to her and stroked and cuddled her and LD put her coat on her to keep her warm....

For the first time ever, Kish was calm at the vet's.  No longer scrabbling and pulling on the lead to get out of there as fast as possible, she lay quietly in lovely daughter's arms and while standing on the table, buried her nose in my neck for ages while we talked to the vet.  They decided against shaving a patch on her leg as the poor old girl was covered in lumps, so gave the injection without fuss.  Kish just glanced at the vet then turned back to me, we kept eye contact until her head drooped and she gradually slipped away.  It took me a long time and a lot of tears before I was ready to leave her.  I cried and cried all weekend and on and off the following week.  Getting up on a morning and coming home at night to a Kish-free house was awful, so empty, so soul-less.  I started to question whether I'd acted too soon and wished I could turn back time and have her with me just a little longer.

Kish came home this Tuesday.  We had her cremated on her own and have put her casket on the  mantelpiece next to a photo of her as a beautiful young dog, decorated by her name tag and a taffeta bag containing a few tufts of her hair.  I have kept her original adoption papers, collars, halti, harness and frisbee - I couldn't part with all her stuff, seemed so callous.  I took her in the kitchen with me last night while I did the washing up and found myself crying while I talked to her about what had happened and how much I loved her.  Cracking up, obviously.  Here's a few photos of Kish throughout her long life with us, that's my foot she's cuddling in the last one.