Annette’s personal story in honour of Dementia Awareness Week

Published: 16 May, 2016 | Service: Supportive, Palliative and End of Life care services
Annette’s personal story in honour of Dementia Awareness Week

This week sees the beginning of Dementia Awareness Week and like anything else we don’t take notice of these Awareness weeks until they come into your life.

About Annette

Annette had always been supportive of her siblings, family and friends, along with her husband; they were a strong couple who involved themselves in charity fundraising, local football and were immersed in family life with their children.  Annette provided the discipline for the household and as a couple they created a family with strong values along with the balance of a carefree, fun filled childhood. Annette always welcomed people with a smile, warmth, a sense of fun and genuine friendship.   Annette had a busy, enquiring mind and enjoyed mental challenges i.e. crosswords, Sudoku and quizzes.

Diagnosis

Over a couple of years the family began to have concerns regarding her mood, sometimes she was a little irrational, emotional, paranoid, there were times of forgetfulness, grandchildren were given the wrong Christmas presents.  Once the family had raised their concerns about certain behaviour Annette was displaying, the Doctor carried out a short memory test and arranged for at CT scan.  Annette and her family were told at a clinic appointment that Annette had Alzheimer’s. They were stunned as they felt their world had changed and they would start tiptoeing through the days, which would now to be filled with increased paranoia; in Annette’s eyes, everyone would think she was mad, her emotional outbursts, her frustration, loneliness and obsession with money and finance increased, so reassurance became second nature to them.

Upon diagnosis the family were given leaflets, contact numbers, names of professionals and information that was meant to help in this new world which at that time was chaotic.  So much information but so little time to read and understand it!

Finance, Will and Lasting Power of Attorney

As the illness has progressed, Annette knew that she wanted to make a Will and was aware she may need to make a Lasting Power of Attorney, which she understood and wanted in place.  However, it took a great number of months for, the family, to agree the best way.  A couple of the siblings wanted to do it without professional support and the others wanted it doing professionally.  The rationale for professional support being that the document had to be correct, as it may not come into play for a few years, depending on loss of capacity and as the only certainty was that Annette was going to decline; paperwork can’t be changed after the event.  The decision to use the chosen Solicitor was made on the basis that his office looked like a house, it was a small practice, unintimidating and the first time Annette met him she liked him.  Firstly, he accessed her capacity to make her Will and then at a future meeting created Lasting Power of Attorney.  Although Annette spoke about having things sorted at that time, she has not mentioned it since.  Peace of mind all round.

One of her first struggles was to sort her money and understand where it comes from, so the solution was that the family arranged for her income to be paid directly into her bank account with Direct Debits paying the outgoings. Once a week Annette would be taken to the cash machine to withdraw money for her purse with the view, that if she loses money or her purse it would be a limited loss and allow her to retain her independence.

Losing her hobbies and skills

Annette had always been a busy person – enjoying crosswords, Sudoku, jigsaws, visiting friends, playing music and was an avid book reader.  Since diagnosis – about 4 years Annette has lost the ability to do crosswords, understand Sudoku or how a puzzle fits together.  She gets lost in an area she has lived for over 40 years so she doesn’t visit friends, some come to her instead and on her own admittance there is no point in reading because she can’t remember what she has read, so reads the page over and over again.  The family believed that photographs would be good to sit, reminisce and chat about and most of the time they have been, stimulating conversation about events, holidays, and family times.  However, the family think more carefully as they now filter and remove photographs with Annette’s family and friends who have died, as it just causes too much upset.  More recently Annette has begun to lose the ability to write a message on birthday and christmas cards, sign them and place in an envelope, as the whole task caused her so much anxiety.  It is becoming clearer that when Annette is enjoying company and is included in conversations, some words seem to disappear and her vocabulary has become smaller.

Losing her independence

When the diagnosis first came the family implemented the use of a diary which would be populated with daily tasks to help Annette and she would respond and write in the diary, so it was very much a 2 way support system.  However, that only lasted a couple of years, as the diary had to be removed after about 18 months when the family recognised that she was not looking at it any more let alone reading it; the family introduced a whiteboard which is now updated weekly.    

Sadly from the day Annette was diagnosed she has not driven her car, therefore, she has lost her full independence that allowed her to visit her family, brothers, friends, go shopping, doctors, dentist or ‘just nipping out’.  This in turn has made her lose more confidence as she has become more dependent on her family.  

With the lack of confidence and increased paranoia, which seems to come with this disease, Annette stopped going to the shop, as she felt people were watching her, she would get lost going to the hairdressers – somewhere she had been using for 20 years, she started to miss GP appointments as she had lost the concept of date and time – despite the family prompting or telephoning her a few minutes before she was due to leave.

When the clocks changed in March 2015, it was very evident that Annette’s emotions were heightened.  She would be in tears by 4pm.  The family quickly realised this was, possibly due to the extra daylight hours and the extra energy it took for her to function in a ‘normal’ manner throughout the day, so when late afternoon arrived she was tired out but the sun was still high in the sky and shining bright, so she thought it was lunchtime and by 8pm she was completely exhausted.  In October 2015 when the clocks moved back, the family would call her as they left work and Annette  would be in tears, as no-one was home and it was dark, she was frightened and she thought it was the middle of the night, she believed that one of her family had been in a car accident – every night!    More recently the family noticed that Annette was no longer washing her hair, as she had lost the concept of what to do for this task and during the last 6 months she has lost the ability / concept of changing her bedding, this had always been a weekly task for her. 

Emotions

Annette’s default is to cry, sometimes there is no apparent reason and sometimes it is just that she is tired.  She talks about her mum, dad and sisters, where she grew up and how she misses the home she grew up in and her brothers.  Her brothers are the closest to her in age so she gets upset that they haven’t come home from work or she hasn’t got their tea ready. Since the clocks have changed Annette has experienced more confusion, as the beautiful bright spring days mean she is awake from much earlier in the day and longer into the night – despite blackout blinds being fitted.  She still gets frustrated with her illness as she understands her behaviour is ‘not normal’, at times, so asks to go to the Doctors for tablets to help her and begs her family not to put her in a care home, all of which require reassurance and patience.

Joy of Today

Annette still lives alone in her own home, supported by her family and her wonderful carers, who have become her friends.  They visit 4 times a day, encourage her to make her breakfast, dinner and tea.  Annette is encouraged to have a bath, do the washing and other small tasks although she always remembers to do the ironing and hoovering.  She can’t really deal with the noise of being in large groups, as she can’t keep up with conversations, so she sits quietly listening to others.  When Annette is around people and in small groups she feels secure.  The old Annette is evident, laughing, enjoying the company, chatting; she shows empathy when someone talks of distress in their life and loves making sure everyone else is happy.  Annette has become a Great Grandma to 4 babies in the last couple of years, she gets confused who they all are but give her a baby and she loves it, she has the time to play, go through nursery rhymes and verses, offers sound advice to the new mums and smiles the whole time, is this down to not feeling judged or being greeted by smiles and enjoying that very comfortable feeling of love?

Find out more about Dementia

Would you like to become a Dementia Friend and understand how to recognise how someone may need help in your local shop or what it is like for someone living with Dementia? 

Website Links

Become a Dementia Friend - https://www.dementiafriends.org.uk/

Dementia Awareness Week - https://www.alzheimers.org.uk/remembertheperson

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Written by: Tracey Parkinson

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