DEMENTIA; DREADFUL ANY DAY OF THE WEEK

Dementia has become an epidemic in our society. This is  a story about my mother-in-law Jean, but it is also  the story of countless others in the same situation.

CIRCA 1945

 

jJean Atkins, later Conolly.

Jean Atkins, later Conolly.

 A CALENDER OF DEMENTIA

APRIL 2015

Jean'sThings 008

This calendar had become a lifeline in my mother-in-law Jean’s  life.  She carefully crossed off the days  and used it as her personal diary. At ninety,  death had stolen most of her friends, and dementia was now  stealing her mind.  As her notations suggest, life  revolved around visits from myself and my husband (her son Rob)  and a delightful young man called Nick, from Veteran Affairs.  Nick’s job was to take  her shopping, but  her greatest pleasure was taking him out for lunch.  She simply adored  him.  Despite the confusion in her mind, she always knew when it was Friday….Nick’s Day.

Sadly, the time came when  her entire  sense of logic  began to fail.  One day she rang me to say that the daily newspaper had been printed with the wrong date. It was almost impossible to  convince her that the paper  was correct, and  that she was mistaken.

There is a mocking  Australian expression, ‘He wouldn’t  even know what day it was’,   to describe someone  completely stupid.  It is hardly surprising that Jean became increasingly upset over her  scrambled mind.  For her, to remember the date was  vital to her psyche;  a fragile thread of  normality in a world of  increasing bewilderment.

You will notice that  the calendar has the word ‘moving’ written on April 22.   This was the day Jean  left her beautiful  Sydney apartment for residential care, fortunately just a few hundred metres away.  It was a step she welcomed, fully aware that she was no longer able to cope. We considered moving her closer to us, in the Blue Mountains, but she has always been horrified by our choice to live ‘out in the sticks’.  I don’t think she really believes we have shops here.

 

Rob and Jean on Mother's Day, May 2015

Rob and Jean on Mother’s Day, May 2015  soon after she moved.

JULY  2016

DesMillyJean 002

Jean  has now been in her new home for 15 months.  She is very happy there, and after some initial hesitation she now enjoys many of the social activities on offer.   However, that battle with the days  of the week has become all-consuming.  In an effort to help, Rob bought  her a watch showing the date, but she cannot associate a watch with a ‘calendar’.   She also  mistakes the station display on her bedside radio for the date, and makes a futile attempt to ‘put it right’.

The staff are unfailingly kind and helpful.  If she doesn’t appear for a hair appointment, a social activity or a meal, they simply go and find her. But this doesn’t lessen her anxiety one iota.  She has  enough cognitive ability left to understand her deficits, and naturally it distresses her terribly.

Her once constant phone calls to us have dwindled to calls for help,  ‘Hello, only me. Could you please tell me what day it is?   It never occurs to  her to ask a member of staff, or a fellow resident. Or perhaps she is just too  proud and embarrassed to ask.

As the dementia progresses, her level of  anxiety  rises. Rob always leaves a few hundred dollars for her in an envelope. Last week he said casually, ‘I’ll  have to give you a new envelope Mum, this one’s falling apart.’   She looks at him with frightened eyes and pleads,  ‘ Oh no…..please don’t Rob, I’m used to that one.’   For some reason I find this so sad that I  nearly burst into tears.

One day I take her some  fragrant  Daphne.  I hope it will  trigger  a memory of when she grew it  herself, years earlier.  It’s fresh, citrus perfume brings the outdoors into her room.  She smiles, ‘Oh, thank you Darling.  I think I’ve been growing that here’, she says vaguely.  Two seconds later she has forgotten  the posy,  consumed by  worry  over her printed schedule of events, and whether it’s Tuesday or Thursday.

Old-fashioned daphne.

Old-fashioned daphne.

 

 

 

 

 

 

 

 

 

Dementia also takes away the pleasure of anniversaries. Jean has forgotten all the  birthdays of her friends and relatives….and even her own. For over thirty years a sweet card from her  addressed, ‘To my Darlings, Rob and Pauline’,  would remind us of our wedding anniversary, which we often almost forgot ourselves.  Many of them were hand crafted from pressed flowers. They were printed with golden lettering after she taught herself calligraphy.  Her final card was for our 35th,  though  she mistakenly sent  a silver wedding anniversary card.

Yesterday she  rang again to ask what day it was.  She thought it was Monday. Rob told her it was Wednesday.

‘Oh, right. Thank you Darling… Wednesday.  Have a lovely day. Did you say it’s Monday?’   

‘No Mum, it’s Wednesday.’

I so hate dementia. What  a cruel thief this condition is.

92, and still looking good.

92, and still looking good any day of the week!

 

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21 Comments
  1. Pauline, I sent you a reply but it seems to come up with error:… each time I respond to one of your blogs. I don’t forget to do the posting equation before I press submit comment. When I go to search for my comment, I can’t find it. I hope you receive them some how. I have really turned my computer inside out to find if they have been posted but to no avail. I’ll try again, but if I don’t succeed I’ll wait for the next time.

    • Pauline

      All your generous responses appear, Heather. I will email you.

  2. Bless her, dear Jeanie. Such a sad and horrible disease when it takes our minds. Jean ringing up to ask the time or day of the week resonated with me, as it was something my own mother did. She would sometimes ring 5 times in a row to ask what day it was, and her reply to me was always, ‘oh thank you dear, I thought it was’. As soon as I put down the phone, it would ring again, just for her to ask exactly the same question. Love to you all, M

    • Pauline

      Yes, it’s sad to watch her declining, Marcia. Oh dear, 5 times in a row would be frustrating. I’m surprised Jean can still use the phone to be honest. She sometimes uses it to try and change the TV channel. Thanks for your sweet good wishes. xx

      • My mum forgot how to turn on her television, and while we were away on holiday, she’d walked down to Maidenhead Police Station and reported that someone had stolen her TV and left a different one in its place! I came home from holiday to find a 2-page A4 hand-written letter from the Duty Sergeant who was on that day, and reporting my mum’s visit (who’d left him more confused than herself!), with the final sentence reading “I hope you’re not as confused as I am by the time you’ve read this letter”! I still have that letter! Hang on in there dear Pauline(and Rob. Jeanie seems happy in her current state mostly, and enjoys her life as it now is. xx

        • Pauline

          Oh Marcia, what a story. Your poor Mum. Yes, Jeannie is pretty happy really. The staff all seem to love her. As long as she is not in pain things are not too bad. She still knows us, which is the main thing. xx

          • Sometimes the only way to cope was by sharing tales with a friend and laughing about them! It worries me that I might go the same way though! 🙁

          • Pauline

            Yes, me too. I’m hoping those new treatments come in VERY soon. xx

  3. This article really struck a chord with me. One can only hope for a cure or prevention in the future but for now, many of us watch our loved ones go through this. A wonderful article, so sensitive.

    • Pauline

      Thanks so much Heather. There are some really encouraging advances in treatment, but unfortunately maybe too late for Jean’s generation.

  4. Thank you for sharing this poignant story. Jean does sound delightful and it is a shame that she (and both of you) have to experience this cruelest of diseases.
    Apparently on “Catalyst” a few months ago (I missed it) there was a story how people with dementia were being helped by listening to music from their teens and twenties era. Perhaps this might help.
    http://www.abc.net.au/catalyst/stories/4421003.htm

    • Pauline

      Thanks Christine. Yes, Jean’s favourite social event is their concert every Friday, plus they have music in their exercise classes etc. I must say she is always cheerful.I think I saw that Catalyst programme, but will have another look. Thanks for the link.

      • I just watched it myself. Seems very helpful for dementia and people with Parkinsons Disease.

  5. Tears came to my eyes. it is indeed a cruel, cruel disease — as cruel to the family and friends as it is to the victim…my heart goes out to all of you.

  6. I so know your struggles with dementia due to i take care of both my parent’s who both have dementia. It is a terrible disease and i wish they could find a cure. It is so heartbreaking to see my once vibrant parents who did so much and helped so many and now they have no clue how to do things they once knew as second nature. I guess in a way it gives me comfort to know I am not the only one going through these struggles with a loved one with dementia but it also makes me sad to know that part that made them unique is now just a memory to me. I wish you the best of luck with your mom. And just know that you are not alone.

    • Pauline

      Thanks so much for taking the trouble to leave a comment, Beth. Wow, I really admire you for taking care of your parents. I do hope you have access to some respite care as well. I think you must be a very special person, who was blessed with a wonderful mum and dad. xx

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