That Bastard, Dementia

Don’t give me a sainthood
I’m doing just doing my best.
Just trying to cope and pass,
The dementia test.

I’m angry, I’m moody,
I want to scream from on high,
I’m not ready for sainthood;
So just back off awhile.

I’m losing my patience,
I’m answering back,
This thing called dementia,
Is on the attack.

One minute you’re cruising,
And think you know best,
Until the bastard, dementia
Takes over in jest.

Here comes all her friends of imaginary fame,
To mess with her psyche, she’s gone ‘looney’ again.
There’s that boy who just sits and puts on her gown,
And the ones who just wander and mess ‘Cyril’* around.

She’s lost her own bedroom,
The toilet, it’s gone.
And the bed it is crowded and looking very forlorn.
The two bed house has many beds you see.
They’re all in her mind,
They just change, mysteriously.

Locked in – she is trapped
And wants to leave, and go home,
For the doors they are closed and she no longer belongs.

It’s a horrible thing to lose who you are,
To not know your family, who watch on from afar.
No more will they visit, they’re put off by the theme,
Of continuing challenges of life at its extreme.

That bastard, dementia,
It will steal her one day.

Until then I’ll enjoy her and we’ll make our own fun,
They’ll be coffees aplenty and brandy bar none!
Because I’m storing up memories, of things that we share,
That one day she won’t remember,
It will be only me who will care.

So don’t give me a sainthood,
I’m struggling, at best.
Don’t give me a halo,
Cause I won’t pass that test.

Just be by my side
And help share the load,
Because that bastard dementia,
Will one day deal; its final blow.

*Cyril – Ma’s wheely walker


Beware the cortisone injection…. maybe

Ma spent the night sleeping in the electric recliner.  I heard her trying to coax a cat to come sit with her but they weren’t giving up her bed!  I got up twice with her to the toilet both times she wouldn’t talk to me.  Obviously I’d done something wrong again, but this time I didn’t know what.  I’d let her sleep in her chair without too much fuss thinking she may get cold and seek her own bed.  I forgot that I got my stubborn gene from her!

This morning she spent an hour just sitting in the chair and staring into space.  She asked me if I’d help her pack up her clothes and I just asked her if she wanted breakfast.  She ate a good one, and is now in her bedroom busily going through her drawers and pulling things out… looks like ‘we’re’ packing again.  I’m not saying much, just leaving her to it.  Her radio is on and I’m hoping it will distract her.  She hasn’t taken her medications and her short term memory and confusion is very much at the fore.

I’ve managed to avoid discussing her packing and have now got her a cappuccino, Ma’s favourite.  As I hand her her coffee she tells me she is worried that Nala the cat has been chased by a dog that’s in the house…. After assuring her there’s no dog, I walk away and leave her to her coffee and packing with the ever loyal Nala.

The in-house respite lady is half an hour late and when she gets there I can’t wait to get out the door for an hour of freedom.  I cruise the Op Shops and catch my breath.  When my hour is up I open the door to be met with a foul odour.  She has soiled herself and tells me she’s cleaned herself and has fresh pants on… time will tell whether that’s right or not, she won’t let me shower her or check.

She asks me for her purse which I don’t have and then calls me a thief and that I have her purse and that this is not the first time I’ve taken her money from her.  I also apparently have her shoes in my room somewhere.  While she was on the toilet apparently somebody shut the door on her room where all her things were.  Yeah for respite and my hour of freedom…

She is now putting on her shoes and I’m waiting for her next move… I’m going to have to stop her trying to get out the door which is going to be interesting.

Sigh, ok so it’s been a not so great afternoon… Ma got both doors open and took Cyril (her wheely walker) out onto the verandah and then tried to take him down the stairs.  All with me beside her telling her she couldn’t… consequently Cyril ends up at the bottom of the stairs with all her packed up important stuff strewn around.  She then tries to pick it up and decides to sit down on the stairs….

So, when Ma ends up on the floor there is no way she is going to get up by herself or by me.  She is a dead weight with two frozen shoulders.  I ring for an ambulance (I really hate taking them away from important stuff just to pick Ma up).  I always feel guilty getting them out to pick her up but what other choice do I have?  Two beautiful paramedics arrive and get her up with me helping.  They check her vitals which are normal (of course) and give me a lecture on where to draw a line… I give my usual explanation of no care ‘cause there’s no vacancies which is why I’m virtually a full-time carer.

When they left I showered Ma and got her into her bedroom with some cajoling and promising I’d sleep with her tonight.  I’ve also given her a brandy.  She is acting more ‘sane’ although time will tell…. Stay tuned….

On the seventh day, the plot was lost once more

After a week of Ma being mostly normal not counting the story she tells of being nearly drowned and burnt to death in hospital… At 1pm, things went pear shaped once more.

After her ‘clean out’ at the hospital, Ma has been having daily bowel incontinence culminating in yesterday when we had the Taj Mahal of bowel movements.  After ringing the doctor for the third day in a row, I had to get a sample and then give her some stoppage medicine.  The stench is enough to singe the hair in my nostrils!  Rotten eggs have nothing on this.  The toilet now needs a plumber as it’s unable to cope with the volume (I don’t flush the wet wipes or disinfectant wipes).

So after having pretty sane conversations for 7 days and minimal hallucinations she is now back to packing her stuff up and waiting for me to take us home.  She is also crying and can’t understand why I don’t understand what she is asking.

As usual, I’m second guessing myself:

  • Is it the bowel impaction removal which we’ve stopped too soon?
  • Is it a UTI from all of the bowel accidents?
  • Or is it the return of what she had previously? (still no diagnosis!!!)

I’m the worst daughter in the world again.  I try to let her do her own thing when she is like this because everything I say to her just upsets her.  I really don’t know what to say to make it better.  I can’t offer to take her home because I don’t know where that is.  Her possessions are all around her yet she things they are at her other home.  She packs everything up and sits amongst it all just waiting for me to fix it.

I wish I could.

When giving up seems like the only option

It’s been an exhausting and mentally challenging week.  After a magical Monday, Ma started to descend into paranoia, confusion and disorientation.  By Friday it was a challenge just to communicate.  I was starting to lose patience with the repititive paranoia of people in the house and taking her things.

Saturday morning I came home from shopping to find her distressed and telling me that the police were in the house searching for her lost items (there was nobody there).  I couldn’t convince her otherwise and she just sat and kept on about her lost items.  Then the doorbell rang and I found a paramedic on the doorstep enquiring whether we had requested an ambulance.  Turns out that Ma had rung for help… I burst into tears and the wonderful  paramedic asked if he could come in and check Ma.  He spent quite a while with us checking Ma and asking questions like he had all the time in the world.  In the end he could only suggest I get back in touch with her doctor as there was nothing physically wrong.

Her doctor is a wonderful man who turned up that afternoon and organised emergency blood tests to check her electrolytes, as this can lead to confusion.  After battling through the afternoon and getting her into bed I lost control once more and started a screaming match after being accused of taking her things.  Totally illogical and unnecessary.  I could hear myself yelling at her but I couldn’t stop until finally I turned and left. I hated myself for yelling and not being able to stop; I hated myself for wishing I was free of the burden; but more than anything else I hated the fact that my mother was gone and I didn’t know whether this time she would be back.  This was the worst I’d ever seen her and the longest she’d ever been ‘absent’.  I sobbed my heart out, I was so angry, tired and sick of feeling powerless and helpless.  She was up from 11pm until 3am looking for things to pack so she could get a taxi.  I finally got her to bed after 3… I think only because she got cold.

Putting her into care seems like the easiest option.  It would solve all the problems.  People, well meaning I know, ask you stupid questions:  like what do you think will happen?  Man, if I knew the answer to THAT question I’d let them know.  I don’t have the answers.

So after descending into the pit of despair I came to the conclusion that I was wrong about the importance of labels.  I am now desperate to find one.  If I was to take the easy option and place her into care without finding out the true nature of her problem then I’ve failed her.  If it’s dementia, well at least we know and care may become the only option.  But, what if it’s related to her medications?  There are at least three meds she is on that cause hallucinations and confusion.  In her increasingly fragile state these side affects can manifest and increase in severity. The same could be about interactions. What about if it’s vascular?  What if there may be a solution out there?  If we exhaust all possibilities and I’m forced to place her into care; at least I know that we tried.

So today I stayed home with her.  She had the best night’s sleep in a long time.  I must admit that I lost the plot yet again when dealing with her hallucinations and ended up jumping up and down on her bed to prove nobody was there… childish I know!!  Apparently as I could have squashed an old lady!!  I used sage and Tibetean healing incense and she took a sleeping pill at 11pm.  She slept until 7:30am!!  She was bright albeit still a bit confused.  Around lunchtime we talked about what had happened and about respite care.  She said she would know what was happening next time and that I was to tell her if she started ‘going off’… if only it was that simple!!  So, she’s back for the time being and our search continues for an answer.  The roller coaster continues on it’s merry way dragging me along behind it.