Mom’s Dementia Journey

First Signs of Dementia

My mother’s ageing became particularly evident some 3 years before she moved in with me.

  • She would get lost driving to familiar destinations.
  • She would phone my sister and I again and again, asking the same questions within a short space of time.
  • Uncharacteristically, she started eating out at restaurants every day.
  • She lost all sense of circumspection with regard to money.
  • She became prone to falls.
  • I don’t know how, but she managed to set her microwave oven alight!
With thanks to Amanda Kerr for photo on Unsplash

Persuading Mother to Move In

My family helped finance an extension to my double-storey house so that our mother would have her own space, without the difficulty of steep stairs.

“The Georgiana Suite”, teasingly named after my mother, consists of a bedroom with en-suite bathroom and an open-plan lounge which leads to an outside patio.

Needless to say, it proved impossible to persuade mom to move in with me.  She was independent, successful and proud.  Living with her children (or in a retirement home for that matter) was not part of this dynamic 80-plus-year-old’s long-term strategy.  Always in control, the last thing she’d envisaged was that she might become dependent on others.   Any discussions along these lines had always ended in denial.

It was only when she suffered a fall and fractured her arm that my sister and I were able to persuade her to move in ‘until she’d recuperated’.  It gradually became easier to convince her to stay.  I coaxed her by highlighting how much less lonely this new arrangement was for both her and I.

Two months later, with her approval, most of her stylish bedroom, lounge and study furniture was moved from her apartment into my house. She was delighted to be surrounded by her own belongings.

It felt like home.

Have you encountered similar resistance from a loved one?  Please let me know.  From their perspective, it must be so hard to give up a lifetime of independence.

Life with Mom:  Early to Mid Dementia

Many voiced their concern that I was brave to undertake caring for my mother.  But my sister’s and my sense of relief was immeasurable.   We no longer had to worry about:

  • Where she was
  • What had happened to her
  • Whether she’d eaten
  • Whether she’d taken her medication
  • Who was taking advantage of her

In fact, Mom was far less difficult to live with than I’d anticipated.  Less critical, less sharp.  Kinder, gentler.  Sweeter.  Slower.

With thanks to Ksenia Makagonova from Unsplash

A Love for Literature and Films

Mom spent most of her time in my house either re-reading books (in the Greek original or translated into Greek) or re-watching DVDs.  It was sad to realise I could no longer take her to the movies:  her comprehension of the spoken English word was deteriorating; a film had to have sub-titles.  It became harder and harder to introduce a new story-line to her:  she could only follow a story she knew.

At different stages she has compulsively watched and re-watched all TV or film versions of Jane Austen’s books, all movies with Colin Firth (her favourite actor!) from Bridget Jones’ Diary to The King’s Speech, all productions of the Bronte novels.  In the past year her taste has become lighter, with endless repeated viewings of “Notting Hill”, “Pretty Woman”, “Dirty Dancing” and “Mamma Mia!” (a contender for her all-time best).

These films have put me at ease, unlike Emily Bronte’s “Wuthering Heights”.  Both the TV series and the novel held a dark, unfathomable fascination for Mom.  I was depressed myself during the period that she was obsessing with the TV version, and my heart would plummet further every time I heard the score playing.

The delightfully corny “Les gendarmes”, starring Louis de Funès, is a set of 6 French comedies produced in the 1960’s.  My mother had acquired the DVDs via a promotion held by the Greek newspaper, “I Kathimerini”.  This collection is perhaps my personal best – just because I love to hear my mother laugh!

Very rarely would she remember how she came to possess a certain book.  D.H. Lawrence’s “Lady Chatterley’s Lover” was one such novel.  During the apartheid years, the draconian Publications Control Board judged this book as undesirable and banned it.  Every time Mom read it, she would relate how worried she had been about smuggling it through Customs at Jan Smuts Airport on arrival from Greece.

Mostly, however, she would pounce with excitement on a book she’d owned for 30 years or more as if it were a major archaeological discovery that she’d unearthed from within her collection.

I remember when she was reading and re-reading “Désirée” by Annemarie Selinko (1951), a novel based on the true story of Désirée Clary who was briefly engaged to marry Napoleon Bonaparte and who eventually became Queen of Sweden and Norway.  Each time Mom read this book, it was ‘like the very first time.’  My apologies if I sound as if I’m channelling Madonna, but it freaked me out a little when she started telling me with a girlish giggle that Napoleon was “her very first love”!!!  Was she about to forget my father?!!!  It became more stressful when she anxiously asked me to urgently switch on the television news, to ascertain how the war with Russia was progressing.

I felt far more comfortable when she would repeatedly rave about Orhan Pamuk’s autobiographical novel “Istanbul: Memories and the City”, winner of The Nobel Prize in Literature in 2006, or E.H. Gombrich’s “A Little History of the World”.  She always remembered she’d given my brother-in-law a copy of the latter (in English).  Sadly, she has not looked at these for a while now.

Are there passions or hobbies that your loved one still enjoys?  It doesn’t matter how imperfectly they do so.  All that counts is that they are still finding pleasure in something.

With thanks to Felix Russell-Saw for photo on Unsplash

Dementia and Caregiving

To my mind, it’s just not possible to look after a dementia patient alone.  Luckily, mother and I are blessed with the kindest housekeeper/caregiver, Talent, who works 5 days a week for us.  As time has progressed, she’s done less housekeeping, more caregiving.  But I don’t mind if my house is characterised by dust and mess.  I simply would not cope without Talent, who has a big heart and loves my Mom.

Typical of dementia patients, Mom’s command of the English language has declined and she has reverted more and more to speaking her Greek mother tongue almost exclusively.  Talent has patiently learnt to decipher her needs.  A common refrain is “που είναι η Nτίνα;”(pou eínai i Dina = where is Dina?)  Usually I am “in the κουζίνα”(kouzína = kitchen.) Mom’s repetition ensures Talent knows μαλλιά (malliá = hair), τσατσάρα (tsatsára = hair comb), κρεβάτι (kreváti = bed), τσάι (tsái = tea), and much more.

I take my hat off to you if you are caring for your loved one on your own, if you don’t have a choice and are managing to come out alive!

Severe Dementia Decline

For the vast majority of the time that Mom has lived with me, I’ve been so Very, Very, Very Thankful that Mom’s logic has survived.  Yes, she may have driven me bonkers asking the same question a million times.  Yes, I may have had to supply simplified explanations to her.  But in the main, her interpretation of events has been perfectly rational and logical.

Until 3 months ago, that is.

The trigger was my trip overseas.   One of my loved ones was critically ill.  I had to go, for my own sanity.

My mother did not see me for 3 whole weeks.  I was her Trusted One.  The only one who could protect her from the darkness of her dementia. The only one who could reassure her when she was afraid.  And I failed her.  Her Trusted One abandoned her.

I arrived back to find Talent, our housekeeper / caregiver, in a state.  While I had been in the air flying back to South Africa, my mother had walked out of the house!  Into the street!  At 3.00am!  She had never done this before!  Ever!

Talent heard my mother open the front door.  When she didn’t hear my mother’s footsteps return to her bedroom, she went looking for her.  She ran around the garden before realising that the remote-controlled driveway gate was wide open.  At the same time, two incredible CAP (Community Active Protection) Security personnel, who were patrolling the neighbourhood, happened to see my mother not far from the house.

Mom was terrified!  None of these compassionate people, including a neighbour and a friend of mine who Talent called, could persuade her to go back indoors.  It took a call to my brother-in-law, on another continent, to convince her to do so:  He told her to go back inside.  He had been delayed.  She should have a cup of tea and wait for him.

This was just the beginning of my mother’s descent into a horrendously frightening other world.  No-one can prepare you for this journey.  Mom is no longer the person she was before I left.  I am no longer the Trusted One.