Is This Living?

Mum’s been at the home just over a month now & that initial euphoria has passed.Where she was keen to get her hair done & dress in smart clothes a few weeks ago,she@s now back to how she was in her own home.Most of the time she spends in bed,she’s not really bothered about eating or drinking & she doesn’t care what she looks like

Lewy Body Dementia brings with it symptoms that are difficult to come to terms with for both the sufferer & those close to them.Nothing tastes right,so all the food the Care Home provides,as mum sees it,is disgusting,when,of course,in reality it’s perfectly ok.The problem is the dementia takes away all power of reasoning & sensible thoughts,so it’s no good telling her that her illness & medication are affecting her taste buds,she just gets agitated & thinks you are bullying her.She has hallucinations seeing & hearing my brother all the time,both as an adult & a chid,then he disappears & she thinks she’s lost him.She’s convinced people are stealing her food & her clothes.Worst of all,she’s in constant intense pain,as I guess her body is “forgetting” how to work & shutting downShe can’t swallow properly,it hurts her to breathe,she’s permanently constipated & she can only move with help from one of the carers.Even getting from lying down to sitting up requires help.

She has no joy in her life at all,she is in a permanent state of pain & confusion.Can anyone really say that this is “living” ? Friends with parents that have also had Lewy Body have told us their relatives have carried on like this for up to 6 years,the last few of which were spent unable to speak,eat,drink or move & not recognising anything or anyone.

That’s no way to live & it’s a terrible way to die.We wouldn’t let an animal suffer like that & yet we’re supposed to accept that’s ok for for our loved ones

When I was young my mum always told me if she ended up like that  she wanted me to shoot her.

thelma & louise

Each day sees me driving up to the care home to visit mum (& Mary!). Thelma & Louise can usually be found dozing in their chairs in the large lounge,but an offer to make them a cup of tea sees them spring to life.Well,ok,they don’t exactly spring,perk up is probably a better description.Today I’d gone with packets of biscuits & sweets as they’d been complaining no one ever gave them any.I’ve since discovered this to be a complete lie,but nevermind,Mum is now the official KitKat baron & hands them out to all & sundry.

I’ve realised that Mary’s memory is even worse than mum’s.Every day she asks me who I am & if I work there.When I tell her I’m Vi’s daughter she always says “who’s Vi?” For the last 4 days she’s been telling me she comes from Wembley,today she said “I come from London” “Wembley?” I asked,”No,Palmers Green” she said.

For the last few years,each time mum had been admitted to hospital,it seemed none of the medical staff were too bothered about finding out exactly what was wrong with her.They didn’t read her previous notes (I know this because we were always having to tell them about her past episodes) they appeared to just patch her up a bit & send her home,despite knowing she’d be back in again in a few weeks.They did always tell us though,that they’d assessed her & decided that she was of sound mind.It was so frustrating because it was evident to everyone who knew her that that wasn’t true.

This last stay,however,on the Stroke ward,was different.One doctor did take time to read through her medical history & asked us extensively about her attacks & symptoms.It led to a diagnosis of Lewy Body Dementia & looking it up on the internet,I found all that we have been experiencing with mum.I can’t explain what a relief this has been.It has put all the pieces of the puzzle together,it makes sense now,we can see what we’re dealing with & what to expect.

Tomorrow I’ll be up there again trying to make them smile & keeping them supplied with tea.Mind you,if Mary persists in asking me who I am every 5 minutes I might have to smack her one.

Only joking….

Settling in

Having arrived at the Care Home after a long journey,Mum was very tired & feeling understandably sorry for herself. We’d unpacked her bits & pieces before she got there,putting a few of her favourite framed photos in the room,along with some flowers.We left her having a nap & I promised to return in the morning to see how she was settling in.

When my youngest son,Nick & I arrived this morning,I was expecting to be met with the moans,groans & tales of woe that I’ve been getting for years each time I’d been to her house.So,what a pleasant surprise to find her in one of the sitting rooms chatting away to Mary,another of the *inmates*.We made them a cup of tea before joining them for a chinwag.Mary turned out to be great entertainment,she had Nick in fits of laughter.When I asked them if someone had been round to ask them what they’d like for dinner,they ummed & ahhed for a while,thought they had but couldn’t actually remember. “That’s probably why we’re in here,isn’t it?” observed Mary “Yes,I suppose it is!” said mum.Then we all laughed about it .

There was a lot of talk of sherry,too.I’ll have to watch that Mary,I suspect she could lead my mother astray

I popped in again this afternoon,but it seems Mum & Mary had succeeded in getting someone to give them a drop of sherry with their lunch & Mum then felt unwell so had gone to bed for a sleep.

I don’t know,less than 24 hours in the place & already my prim & proper mother is on the way to giving the impression she’s a lush.

Anyway,we’ve now christened mum & Mary,the Thelma & Louise of Avery House Care Home

moving fast

Things are moving fast,which is a good thing,but it does all seem a bit unreal.I went to look at a new care home only a few miles from me yesterday,with a view to getting mum in there within the next few weeks all being well.Little did I realise it would be in the next 48 hours!

As soon as I walked into the place,I got a good feling about it.It was spotlessly clean & beautifully decorated,it was more like a top class hotel than ,what I’m sure,most peoples vision of an old people’s home is.The manager & her staff all appeared to be friendly caring people &,after giving all the details of mum’s situation & condition,I was taken on a tour.The bedrooms are light & airy,very spacious & each has it’s own ensuite wetroom.The communal lounges & dining room were all furnished to a very high standard,in fact,the dining room tables were laid as you would expect to find in a silver service restaurant.A chef cooks all the food fresh on the premises & & the residents individual tastes look to be well catered for.Even wine & sherry are offered each day!

Mum has to live on the dementia floor as that is what she’s been diagnosed with,& this particular home have links with Stirlin University & it’s research into the condition.It means they appreciate dementia patients prefer things to be quieter & less busy,but this doesn’t mean they isolate them.They encourage socialising,working to try to keep their brains active,often by getting them to reminisce as a group about times gone by.Yesterday they had a wedding dress & photographs from the Forties on a mannequin in the lounge,which had the ladies chatting away to each other.They also get all the residents together,regardless of their mental state & they’re allowed anywhere in the home they want to go.Obviously,with it being so close to me,I can visit her every day too,to see how she’s doing.

I was allowed to pick which bedroom I wanted mum to have as,with this being a fairly new home,there are still a number of vacant rooms.I opted for one decorated in a similar colour & pattern to her own one at home.I thought it might be more comforting.

I found the whole experience very emotional.A combination I guess of relief that mum would be looked after 24/7                      & that the constant journeys up & down to her house,where I never knew what drama would be waiting for me,would no longer haunt me,& also,the feeling in my heart that I’d found the perfect place for mum to see out what time she has left that might actually bring her some happiness.

Once home,I phoned the hospital to let them know &the big move is all set for tomorrow.Thursday 1st April 2010,sees the start of a new chapter in our lives.Who knows,after our turbulent relationship,it may make me feel closer to mum.I know I want her to love her new home & be happy there.

And,although it’s 6 years since we lost my dad,I know he’ll be very happy too

mum&daughter role reversal

I’m sure I can’t be the only one struggling to get my head round the way the severe ill health & dementia of a parent forces a reversal of roles.I have now had become “mother” to my own mum.This once strong,clever,independent woman,who let’s face it,I used to be scared of as she was one hell of a strict disciplinarian,has now become,to all intents & purposes,a 3yr old child,who understands very little & needs constant checking on.
We’ve always had a difficult relationship,I was a daddy’s girl,she expected high standards of me &,try as I might,I mostly failed to live up to them.But now,after a succession of illnesses & mini strokes have eaten away at her brain cells,she clings to me,she wants me looking after her,cuddling her.I’m doing my best,I think,I hope,but it feels so weird
I’m not very good at being the nurturing type,I suspect I’m very like she was,though you’d have to ask my sons for their opinion on that.
I go through the whole gamut of emotions – anger,guilt,despair,sadness,helplessness.I moan about how she’s taken over my life 24/7 & yet,I fiercely defend her when anyone else makes the slightest comment about her.

She made long years of my life absolute hell,but,as I look at her lying frail & confused in a hospital bed,I’m desperately sad at the thought of losing her