Moving on with Ma…

A year ago on  26 June 2015, I started writing my blog, sharing my experiences looking after my Ma. This week, on Monday, I moved my Ma into a nursing home after caring for her full-time since September.  Full-time care became necessary after three anaesthetics in five months left her with delirium which I was told was dementia and that she would never be the same.  They were partially right.  After five months of delirium she got better although she was never the same after.  And after getting better the confusion and hallucinations started to progress.  So much so that I couldn’t leave her for more than an hour at a time.  Prior to this I worked full-time and cared for her.

I was told aged care moves fast.  I received a call on Thursday saying there was a room for Ma at her preferred nursing home, aka the house on the hill.  I picked the paperwork up that afternoon.  After nearly smothering under the pile of forms I managed to fill in most things, with the help of one or two of Ma’s medicinal brandy!  I asked Ma questions while Ma gradually got quieter and quieter until finally she asked me when we were leaving.  I stopped to explain that she wasn’t going anywhere until Monday and that I would be with her every step of the way.  I also asked her to give the place 4 weeks and if she didn’t like it, we’d work something out.

We were there at 10 the next day with paperwork filled in meeting with the Financial Officer. (I was discouraged from bringing Ma even after I explained I had no carer for the time it would take to finalise the paperwork.)  As it was, I wanted her to see the room that was being provided and I also had to fill in paperwork about ‘end of life’ care.  To perform CPR or not; to do everything to save her life and move her to a hospital or just go with palliative care.  Ma and I have discussed her end of life preferences before so I knew the answer to the questions but still felt the need to discuss them again with her.  My head was spinning over the financials with no idea of what we were going to do.

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We moved her electric lift chair in on Sunday and were there on Monday moving in.  I was told that usually aged care providers ring the day before for you to be in the next day.  And I thought this was fast!

The view near her room is beautiful with a lovely verandah residents can sit on and enjoy.  Rooms on this side of the facility cost a lot more because of the view!  There is also a lovely little sunroom right next door.

My sisters and I move her in on Monday.  Her brandy is written up by the doctor and she gets her tipple of a night time.  I talk to the registered nurse and staff about her ‘unique’ problems in the hopes that she won’t have the problems of constipation, ulcer infection and skin rashes that have occurred previously with her two periods of respite care.

I don’t sleep well that night waiting on a call to tell me she’s fallen or something else has happened.  My mind won’t shut down!  On Tuesday I start to decorate.  I hang her pictures up and put some other homely touches in place.  I notice her heart patch hasn’t been removed the night before and that the person dispensing the pills doesn’t really know what they’re doing as they are Certificate 4 and not a nurse.  She tells me that she doesn’t have any idea what any of the pills are for… SIGH.  We discover an old friend of hers a couple of doors down who we stop in and see.

Ma sleeps in her chair again as she can’t get into the bed.  The physio isn’t due until Thursday and I’m told that staff aren’t allowed to life patients legs in beds so Ma will probably be sleeping in her chair until Thursday!  I explain that she is used to a handrail beside the bed which she uses to get herself in and out of bed.  I’m told they don’t have them as they can be looked on as a form of restraint… SIGH

I’m finding things out everyday.  Many things I wish I’d been told before.  I will be making a few suggestions in the hopes of improving things.  There is no resident’s information pack that gives family any information.  My life certainly would’ve been made easier if I’d known then what I do now!

 

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Ma’s way with words (Part 2)

Ma doesn’t say many of her old sayings any more.  Occasionally she will utter one but more often than not it’s a new turn of phrase.  Some real rip snorters in fact…

I’m a bit of a Queen fan (the rock group).  Whenever there is thunder around I will utter the words from Queen’s Bohemian Rhapsody, “Thunder bolt and lightning”.  A couple of year’s ago Ma started saying, “very very frightening” in response.  I have no idea where she got the words from as she was never a rock and roll aficionado but to this day if I say my line… she will say hers!

These days Ma’s nights and days are very much mixed up.  There are many times when she thinks night is day and vice versa.  Even though it’s pitch black outside she will still insist it’s daytime and there is something ‘wrong’.  After one such occasion she uttered to me, “I don’t like these 24 hour days”.

Some days I can’t win.  While we were out shopping I showed Ma a dress I thought would suit her.  After looking it up and down she told me she couldn’t wear it because it was a grandma dress!  I reminded her she was a grandma… she just looked at me. Undaunted, in the next shop, I showed her another dress to which she told me she couldn’t wear because she was a grandmother… I gave up.  No dress was bought that day.

Recently I purchased a bottle of wine and mentioned the name of the wine to Ma.  Ma must not have heard me correctly (or I didn’t speak clearly) because Ma responded with, “what?” “You’ve prepared human?” “Since when have you become cannibal?”

I made some 20160425_115636waffles recently on Ma’s ancient waffle iron.  The ones that weren’t eaten I put in the freezer for later use.  Ma requested some of the waffles for her dessert which she polished off with ice cream and maple syrup.  After she had finished demolishing them she told me she could still hear them ‘waffling’…

My favourite new saying of Ma’s would have to be this one… The other day I asked Ma if she wanted something to drink to which she replied, “yes”.  When I asked her what she wanted she told me she wanted something, “wet and wild”… I finally worked out she meant brandy.  The new name for brandy in our house is, “wet and wild”.

Every new little saying or quip gives me a giggle.  The mother of my past is slowly diminishing.  This new mother is different but still amusing.

Ma’s way with words (part 1)

Ma’s always had a way with words.  She was a reader and great doer of crosswords.  If she had a spare moment her nose would be stuck in a book.  Growing up she’d have us kids confused or in stitches with her various sayings.

I had curly hair as a kid and whenever I was naughty, which was quite often, Ma would start reciting, “There was a little girl, that had a little curl, right in the middle of her forehead.  When she was good, she was very very good… And when she was bad she was horrid!”.  This would always make me cranky!!!  If we pulled a face we were told if the wind changed our faces would stay like that  (I was always afraid of that one).

One of my favourites was, “up in nanny’s room behind the clock”, which she used whenever we wanted to know the location of something that she didn’t want us to know.  If she didn’t want us to know where she was going… or was just being contrary, she’d respond with “I’m going there and back again to see how far it is.”  There was also the “wigwam for a goose’s bridle” in response to us asking what something was… again used if it was something she didn’t want us to know.

Kids being kids, we were always getting into things we shouldn’t and Ma was always finding us out to our complete astonishment (us thinking we were so clever).  When we asked how she knew, she’d always tell us, “because I’ve got eyes in the back of my head”.  My sister one day decided to find out whether this was true and checked the back of Ma’s head very thoroughly.  I think she was very disappointed when she couldn’t find anything. If we were being particularly painful (which was probably often) and asking why?… but why?… why? She’d respond with, “because ‘Y’ is a crooked letter and you can’t straighten it!”

If Ma was making a phone call to somebody she knew well she’d announce herself with: “It’s only me from over the sea’, said Barnacle Bill the sailor” or “is that you, because this is me” followed by a laugh.  To describe somebody who was very happy, she’d say they were “as happy as Larry”… I never did find out who Larry was or  “Billy Johnson’s black pig” for that matter.

I always remember Ma reciting a rhyme about Thor, “The Thunder God went for a ride, upon his favourite filly.  “I’m Thor!”, he cried. The horse replied, “You forgot your thaddle, thilly!”  This would cause me untold glee.

But my favourite saying of hers would have to be “better an empty house than a bad tenant!” in response to a belch… or we’d get, “beg your pardon Mrs Arden, there’s a chicken in your garden”.

I know this is about Ma but I couldn’t not write about my Aunty, who we always thought was the very epitome of a lady, describing somebody as the ‘town bicycle’! (I’ll let you work it out).

These sayings I treasure because they remind me of Ma and my childhood.  She still uses some of them to this day.  I thought I’d make an attempt to capture them before they get lost.  She has also coined a few new ones in recent times which I’ll cover in Part two.

Famous people with dementia

Anybody can get dementia.  It doesn’t differentiate between colour, religion, nationality, or financial status.

Robin Williams was a most beloved actor and comic whose talents have always left me in awe.  When it was announced that he had committed suicide back in August 2014 I was shocked and sad that he had been driven by his demons to end his life.

His wife has since revealed that Robin had Lewy Body Dementia, the same condition I think Ma has.  The Guardian wrote a good article about this of which an excerpt follows.

“Taken all together, a severe case of dementia with Lewy Bodies means you potentially can’t think, can’t sleep, can’t stay awake, can’t trust what you see, can’t move, can’t understand what’s going on and can’t be happy.  Judging by Susan William’s (Robin’s wife) comments about the speed of progression of his symptoms, it sounds like Robin Williams had a severe case of dementia with Lewy Bodies.”

How horrible to suffer so and not know what’s going on.

Robin is not the only famous person who has suffered from dementia.

This year it was annoucned that Helen Reddy, aged 73, had been diagnosed with dementia and is now living in a Los Angeles nursing facility. Helen was the first Australian to win a Grammy in 1973 for her inconic song, ‘I am Woman’.

Former British Prime Ministers’ Harold Wilson (Alzheimers); Winston Churchill (multi-infarct dementia); and Margaret Thatcher (stroke induced dementia).

Singers’ Malcom Young of ACDC fame (dementia); Glen Campbell, County and Western singer famous for hits such as Rhinestone Cowboy is in the later stage of Alzheimers;  Perry Como, singer and entertainer (Alzheimers).

In 1983, US President and former actor, Ronald Reagan designated November as National Alzheimer’s Awareness Month.  Six years after the end of his presidency he announced that he had Alzheimer’s disease and wanted to raise public awareness of the disease.

US actor Charlton Heston, who played Moses in ‘The Ten Commandments’ also had Alzheimer’s disease.  He also announced publicly that he had Alzheimer’s to raise awareness.

Rita Hayworth, a US film star, famous in the 1940s, became the ‘face of Alzheimer’s disease’ during the 1980s which went a long way to destigmatise dementia.

Other famous US actors affected by dementia include Peter Falk, who was famous for playing Columbo in the US TV series (Alzheimers). James Stewart, one of my favourite actors, best known for his movie roles in ‘Mr Smith Goes to Washington’ and ‘It’s a Wonderful Life’ (Alzheimers plus another illness).  Eddie Albert of ‘Green Acres’ fame (Alzheimers); Charles Bronson (my 5th grade teacher was wildly in love with him), who always played the tough guy (Alzheimers);  Jack Lord of Hawaii Five-O fame (Alzheimer) and one of my favourite Star Trek characters, James Doohan (Alzheimers and Parkinson’s disease).

Terry Pratchett, author of the Discworld series, died of Alzhiemers in March 2015. He made a substantial donation to the Alzhiemer’s Research Trust and filmed a television program on his life with Alzhiemers.

Sugar Ray Robinson, famous US boxer (Alzheimers); E B White, author of ‘Charlotte’s Web’ (Alzheimers); Casey Kasem, US radio personality, growing up I always listened him on radio station 2SM (Lewy Body Dementia); and Rosa Parks, known as ‘the Mother of the Freedom Movement’, after being arrested for refusing to give up her seat on the bus and beginning the civil rights movement (Alzheimers).

People known to us Aussies include Don Lane, Australian TV personality) (Alzheimers); Hazel Hawke, wife of former Australian prime minister Bob Hawke (Alzheimers); and Neville Wran, Premier of NSW (Lewy Body Dementia).

And the list goes on… because dementia doesn’t discriminate.