In the shoes of…”Tina”. Dear Mum, reflecting on our 20 year journey of living with Korsakoff’s…

This week, 18-24 June, is Carers’ Week and so our “in my shoes” dementia blog  is focusing on carers and people who support carers. Today “Tina” writes a very moving letter to her Mum “Pat” reflecting on their long journey together since Pat was diagnosed with Korsakoff”s. Never heard of Korsakoff’s? – well that is exactly what this blog is aiming to achieve: raising awareness and spreading knowledge by hearing from people with first hand knowledge and experience…

Dear Mum
I’ve been asked to write something about our own 20 odd year journey of living with Korsakoff’s. There is so much I could say that would probably fill a book (you know how I can go on a bit) so I’ll confine myself to just some of the things I remember.  Labels are for jam jars and everyone’s story of living with dementia or a related condition is very different and unique to them.  In telling some of our story I hope that it will help people see beyond medical labels to the real people behind them.

I remember Mother’s Day 1991 like it was yesterday.  This was the day I came to pick you up for the meal we had planned and when I arrived it was clear there was something terribly wrong.

You were dressed very oddly in very mismatching clothes and knee high socks, you had this strange glaze to your eyes and your hair was on end. You were obsessing over a take away pizza menu and I couldn’t make any sense out of what you were saying.   I took you to A&E and they told us to go home and ring your GP.   The GP arrived at around 10pm and concluded you may have a brain tumour and you were admitted to hospital that night.

You spent a week or so in a general ward when nobody told us anything about what was wrong and then you were moved to the psychiatric ward.   It was here that I first heard the word Korsakoff’s which as it turned out was the very high price you had to pay for years of numbing the emotional pain of being in an unhappy marriage with your favourite tipple – Carlsberg Special Brew drunk from tea cups.   The price you paid was the destruction of your brain’s ability to retain any short term memory for longer than a few hours.

Over the years I remember when people first met you, they didn’t realise anything was wrong as in the here and now you were, and still are, as bright as a button. In those pre- internet days, there was very little information around about Korsakoffs Syndrome .  I’ve learned since, there is a lot of misunderstanding about it among social workers and the like who often referred to it as “boozers’ dementia” when it is actually a form of brain damage rather than a degenerative condition. I’ve also since learned that It came about because during the week before Mother’s Day, you had not been drinking as you had not been feeling very well and that for somebody who was physically as well as emotionally addicted to alcohol, this was a very risky situation and the reason why alcohol withdrawal programmes have to be very carefully managed.  Your whole nervous system had gone into complete shock and made you very vulnerable to the onset of the condition we now know as Korsakoff’s.

Back to your time in the psychiatric ward……

My employers of the time were extremely supportive and I was able to visit you 14 opening times a week; I remember it as being a very surreal experience.  You were as high as a kite on withdrawal medication and we spent many hours laughing like drains over daft things in an otherwise silent  room of other women who were very depressed.

Each time I travelled to visit you there, I was hopeful there would be signs that you were recovering and then, around 4 weeks later we were told that the results of your brain scan were that things were irreversible, there was nothing that could be done, and that you would need full time care for the rest of your life.

The laughing stopped when you were discharged…..initially, you went back home to Dad; you were  very distressed and spent much of the time there screaming.  Dad couldn’t cope , and I offered for you to come and live with me and my partner and we found a care home for younger  disabled people where you went to  during the day while I was at work.

I was still in a state of denial, and was convinced you would get better.   I took you on a holiday to Malta in the hope that this would somehow bring about some recovery.   This holiday was in many ways a microcosm of the low and high points of our journey over the coming years.   One of the manifestations of Korsafkoff’s is very extreme mood swings, happy as larry one  minute and thunderous the next.  Your refusal to get on the bus from Silema back to the hotel on the day we were flying home was a particular challenge.  I remember too, a night we went out for a meal….you had lost a lot of weight with stopping drinking and were looking particularly beautiful, and a very handsome man in the restaurant had eyes only for you.  You were unaware of this and I remember what a strange feeling it was that I was in the role of protecting you, that the roles of parent and child had been reversed.   One day we went on a boat trip…a little rowing boat on a fairly choppy sea;  I remember how  blissfully serene and calm you were while I was panicking that the boat would turn over.

Things continued as they were for a while when we returned home with no signs of improvement and your mood swings gradually taking their toll on my own ability to cope.

Things came to a head the day we went to visit one of your friends.   I was already emotionally drained and ill equipped to cope with your storming off at one point and it taking several hours to cajole you back to the car.  I drove you to the care home in tears for this now to be your permanent home.

From then on, you came to stay with us every other weekend and over the years I started accepting that your condition would not improve and we focused on making the here and now as good and happy for you as they could be.  I have a photo of you on a swing in the park; I don’t think I’ve ever seen you look so happy and carefree.

In the interests of you having as much independence as possible, we took risks. The area we lived in was close to the town centre and was in the same square quarter mile or so where you had lived all your life, and each weekend you spent with us, you went into town on your own on the Saturday with money to spend to do what you wanted.  If there was one thing you loved, it was that immediate moment of buying something. We ended up with around 30 pairs of slippers; you also liked buying a lot of salami and I remember one of your more bizarre purchases was a bag of raw pickling onions when I had never known you to pickle an onion in your life.  Because this area was so lodged in your long term memory, as was the house were we lived, I knew you would be safe and that you would always come home.

We also worked with the care home to maximise your independence.   One of the other things I learned about Korsakoff’s was that people who have it like to keep very busy and we persuaded the home to let you help out in the kitchen.  I think you probably worked harder there than most of the staff, though you enjoyed it, particularly being treated as one of the team by the other kitchen staff who very much enjoyed your wicked sense of humour in their banter and who would often buy you treats.  We also persuaded the home that your mood swings might improve if you were able to visit the local shops on your own and you became the official shopper for the other people in the home who were unable to get out.

I remember the time we visited my friend Sarah down South, you had been there several times over the years and we felt confident enough for you to go to the local shop.  When after, 15 minutes you hadn’t returned and we couldn’t find you driving around the estate, panic set in and we contacted the police.  You eventually turned up on the door step totally untroubled and bright as a button….while you had taken a wrong turning, you remembered Sarah’s house number was No. 8 and you had simply knocked on all the No. 8’s until you found your way back…

I remember the morning of my brother’s wedding, we both had a make over  at the hairdresser’s and I cried at how so very beautiful you looked… even agreed to wear your false teeth that day….I was so very proud of you, particularly with how you coped with the curiosity of many people you  had not seen for several years

Some years later things took a turn for the worse with your physical health and you now live with using a wheelchair as well as with Korsakoff’s.   At the time, your mood swings worsened and depression set in which to me was a perfectly normal reaction for anybody losing their mobility, though the care staff and also the CPN called to assess seemed to be of the view that it was part and parcel of the Korsakoff’s.

So many other things I remember mum.  Though most of all I remember how so very very brave you have been through all of this and how you have kept your sanity, and for much of the time your humour, in circumstances that most people walking in your shoes, including myself, could not.

I remember these things for you, as I know you cannot. That you cannot remember doesn’t make them any less valid or real as you were fully there, as you continue to be, in the present moment for all of them.

I read a few years ago that there is a 2 year window of opportunity for meaningful rehabilitation for people diagnosed with Korsakoff’s whereby very specialist and intensive support can enable people to move on from residential care to more independent living.  This opportunity was never open to you.  I guess the reasons for that include general ignorance about the condition, and also funding pathways and who carries the can for funding this intensive support (I’ve seen Korsakoff’s referred to as “nobody’s baby” in this regard.)    I hope that by now, things have changed for the better for people, who like you, have to live with this cruel condition.

About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives.
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3 Responses to In the shoes of…”Tina”. Dear Mum, reflecting on our 20 year journey of living with Korsakoff’s…

  1. Pingback: Round up of “In my shoes” – Dementia Awareness, Week 5: Carers’ Week special | Whose Shoes?

  2. Guy Mathiot says:

    Thanks for that. My sis has this problem. Desperatelly looking for people and places that can help a 46 woman get help to learn how to “live the best life she can”.


  3. Pingback: 1300 carers come together… because people care | Whose Shoes?

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