Ma’s Poem

How much did Ma love me?
Let me count the ways
She loved me for my many faults
And my few endearing ways
She’d scold me when I was naughty
And praise me when I was good
She loved me, no matter what
When I thought nobody could.

The lessons that she taught me
Of never giving up,
Of stubbornness she suffered,
For without it she’d have stopped.
The pain she long suffered
It dogged her night and day
She pushed on regardless
And lived her life her way.

The memories that she gave me
The laughter and the fun
With lots of bubbles in her glass
And her sweet tooth bar none
Dessert she had for dinner
When nothing else would do
No balanced dinner for my Ma
It was jelly, custard and a pud or two.

I promised her I’d be ok
When she was leaving me
When thing’s are bad I tell her still
I’ll be ok, you see
I am my mother’s daughter
It’s what I’m proud to be.
I am my mother’s daughter
She’s the reason why I’m me.

So I’ll lift a glass of remembrance
And toast her till I’m numb
And remember all the times we had
And all the things we’ve done.
So many happy memories
Of times we shared together
I’ll treasure them all my days
Until we are together.

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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.

Quality of life vs Quantity of life

Which would you choose?

Ma’s has many health issues including Osteoarthritis and Osteoporosis which cause her lots of pain sometime to the point of her crying with it. Two frozen shoulders and when she moves you can hear the bone grating on bone.  Over the years she has been on more pain medications than a junkie. Strong medications with opioids such as morphine and other nasties as well as an anti-inflammatory. They have been the only reason she has been able to function.  She can’t dress or do much for herself as she can’t lift her arms very far.

When the kidney stones were discovered early this year she was taken off her anti-inflammatory because of the risk to her kidneys.  After three surgeries to remove the stones (yep, it took three goes as she was riddled with them) she descended into a delirium which has improved but remains with her so that her doctor and I now think she has dementia.   This has meant that her pain medications have been decreased due to the affects they have on her confused state.  Her pain has increased to the point where it is affecting her confusion and her mobility.  We have stairs, so getting her up and down these has become a major challenge.

We visited a rheumatologist in the hopes of getting her some pain relief.   She tried a cortisonne injection which didn’t give her much relief and sent her into a delirium for 48 hours (I think).  She is now also on a medication that ‘turns the nerves down’ so that the pain becomes less.  (If you read the side affects from that, you’d never use it on the elderly!).  We talked about putting her back on the ani-inflammatory.  The rheumatologist talked about quality of life and referred us to a Urologist for his opinion on putting Ma back on the anti-inflammatory.

The Urologist was very reluctant to put Ma back on the anti-inflammatory but in the end came to the conclusion that Ma needed quality of life and at the moment she wasn’t getting it due to the pain she was suffering from.  He also said that there probably wasn’t another doctor that would agree with what he was doing.

He asked her how she felt about dying from kidney failure and whether she was concerned about it.  She told him, “I’m 84 years of age (she is actually 88) and I’m a firm believer of what will be, will be.”  With that, she was sent on her way with a script for anti-inflammatorys.  You could tell the doctor wasn’t happy but that he couldn’t see any alternatives.  She will be closley monitored with blood and urine tests in two weeks and probably monthly thereafter if no damage is detected.

Within 24 hours her pain had improved and she hasn’t had any strong pain killers in nearly a week just her regular Panadol Osteo.  She has also been brighter in herself, moving better and was able to make it up and down the stairs without too much trouble.  I’m hoping this will continue.

So, which would you chose?  I’m sure I would have made the same decision.  To see her with pain relief and being much brighter is a gift.

When it’s all about me…

I don’t get many opportunities to get away overnight.  My one and only experience of respite care for Ma was a disaster and scared me off wanting to try it again.  The last time I was away overnight was New Year’s Eve when my sister stayed with Ma… this unfortunately also went pear shaped due to Ma’s hidden health problems which came to a crescendo that night.

I love a bargain!  I love Op Shops! So, when I saw a deal for a couple of nights at Canberra at a very nice hotel last August, I decided to book it.  After all I had 12 months to use it… plenty of time to book my time away… The months went by and Ma’s health didn’t improve and it got to July… I pushed the panic button!!  When was I going to get my two nights away??? Aaargh!  You think I would have learnt by now not to buy accommodation packages on sale when I can’t guarantee my time away!  But, as I said, I do love a bargain, SIGH.

Enter the heroine in the form of my sister! YEAH!!!  Then I started to feel sick… I started dreading going away.  My stomach was in knots.  I started making copious notes on Ma’s care.  Everything from her bathing rituals to her tablets, how to handle her ‘moments’, toileting etc etc etc ad nauseam. Even with all my notes, I still forgot stuff.  How would my sister cope?   Maybe she’d cancel at the last minute etc. etc.

The morning we were due to leave my stomach was one huge knot which got even tighter when Ma started talking about packing up and moving to the other house.  My sister wasn’t due for another couple of hours and here I was just wanting to get the ‘heck out of dodge’.  Ma then promised me she wouldn’t go anywhere and would wait. Yep, I trusted her.  Was it because I was sure she’d be ok or was it because I just wanted to leave?

For the first half hour after we left I text my other sister and aunt asking them to ring Ma to keep her occupied until my sister arrived. It was only after I received their assurances my knot started to loosen.  I rang her an hour into our trip and she sounded ok. Maybe everything would be ok after all…

We had a wonderful time over our two days.  We had dinner with friends, walked and took in some of the sights, visited the chocolate and cake shops.  I even made time for a bubble bath… bliss.  In between this I received updates on Ma’s hallucinations, bowel accident, going out and her packing up.

The day I was due home, Ma decided to pack her bedside drawer into a bag ready to take away.  I rang her to say we wouldn’t be able to find her if she left and that we had cake and chocolate for her.  My knot was back once more.

My sister was awesome and I was grateful beyond belief, just to get away to be me!  Within an hour of my sister leaving Ma had a bowel accident and the cat vomited on her bed… Welcome home!  The best part came after I did her washing and found the remains of her fish oil tablet in the bottom of the washing machine.  Yep, everything now smells fishy!  At least she’ll be popular with the cats, SIGH.

Tips:

  • I haven’t done it yet, but I intend to type up Ma’s routine in case anything ever happens to me. 
  • Learn to let go… ok, so I haven’t really learnt how to do that yet… it doesn’t stop me from giving it as a tip though.
  • If you do get the chance for a break, grab it with both hands and make the most of it.  Do everything, treat yourself, be kind to yourself.  You don’t know when you’ll get another opportunity.