• HOME
    • Looking after yourself
    • Dealing with feelings
    • Dealing with stress
    • Families
    • Sharing experiences: blogs
    • How to use social media (Twitter and Facebook)
    • Visiting a relative in a care home
    • Apps for you
    • Working and caring
    • Employment: how can my employer support me?
    • Capturing good times
    • Connecting with someone who has dementia
    • Will I get dementia too?
    • Coping with loss
    • When caring ends
  • INFO
    • Glossary
    • Finding support and information (1)
    • Finding support and information (2)
    • International
    • People living with dementia
    • Please tell others about this site
    • Definition and types of dementia
    • Delirium
    • Local Authorities, social care and social workers
    • Finding the right care
    • Finance
    • Who regulates care?
    • Funding Care
    • Legal information
  • CARE/1
    • Carers' Assessment
    • After diagnosis (1)
    • After diagnosis (2)
    • Planning for emergencies
    • What is Dementia?
    • Sharing information with others
    • Dignity in dementia
    • Distance caring
    • Employing your own social care staff
    • Practical Tips - page one
    • Practical Tips - page two
    • Person centred dementia care
    • Tips for male carers looking after female relatives
  • CARE/2
    • Incontinence
    • Personal care
    • Personal Hygiene
    • Personal grooming
    • Dressing
    • Moving people safely
    • Safety
    • Driving
    • Falls prevention
    • Mobility
    • Equipment
    • Eating and drinking
  • CARE/3
    • Communication
    • Moving Mum
    • Designing the environment
    • Changes in behaviour (1)
    • Technology
    • Finding the right technology
    • Changes in behaviour (2)
    • Depression
    • Frustration and Anger
    • Bereavement
    • Living with dementia
    • Later stages of dementia
    • End of life care
  • CARE/4
    • Activities
    • Activities - at home
    • Getting together with friends and family
    • Books about dementia
    • The arts and dementia
    • Gifts for people with dementia
    • Going on holiday
    • Events
    • Days Out
    • Playlists
    • Music, art and reminiscence therapies
    • Engaging the senses
  • HEALTH
    • The role of the doctor and dementia assessment
    • Doctors, consultations and how to manage
    • The roles of other medical practitioners
    • Occupational Therapists
    • Physiotherapists
    • Going into hospital
    • Visiting the dentist
    • Dental health
    • Medication
    • Health and Clinical Commissioning Groups (CCGs)
  • CARERS
    • Couples: Edith and Dennis
    • Couples: Amelia and Pearl
    • Pamela
    • Families and dementia
    • Families and dementia (2)
    • Mothers and daughters
    • Mothers and sons
    • Sisters
    • The Accidental carer
    • A day in the life of a carer
    • Maggie
    • Matty
    • Peter, Dot and Mary
    • Sarah
  • CARERS/2
    • No bad hair days please!
    • Difficult times
    • Penny
    • Alison
    • Genista
    • Lisa
    • Emily
    • Angie
    • Anna
  • PEOPLE
    • Sue
    • Jenny
    • Marie
    • Andrew
    • Alan
DEMENTIA CHALLENGERS
​Emily is one of my followers on twitter, we've been talking to each other for a couple of years and she helped me deal with many of the situations I encountered when caring for mum. She cares for both her parents - her dad has dementia and her mum is visually impaired and has mental health issues.  This is her story.

​I suppose I'm fairly young to be caring for my parents; at the carers' centre the average age of the people who meet up is about 50 plus and I'm in my late 30s.  I left home in my teens and went to university in Bath, followed by a job in London working in public relations.  I'm an only child and it was difficult to leave especially because it meant dad was doing all the care for mum (at that time her mental health issues had stabilised) which was mostly around driving, shopping and taking her out and about.  Mum was fairly independent and could make her way around the local area.  I regularly went home and always spent a couple of weeks in the summer and the Christmas break with my parents and family. They were good times!

​Lee asked me when I first noticed that something wasn't quite right with dad but it was really difficult to put my finger on it.  It was only when I looked back I realised things had slowly deteriorated and I hadn't really paid attention to some of the things mum was telling me because she was also going through a difficult time and I just thought she was misinterpreting things or making them sound worse than they actually were because of her own health issues.  Things came to a head one day when I was at work and realised I had missed a call from dad.  I could hardly understand his voicemail, he sounded upset and tearful.  When I rang back, a neighbour answered the phone and told me mum and dad "had been involved in another road accident" - I hadn't been aware there had been a previous incident.  Fortunately they were both ok but mum was very angry and I could hear some shouting in the background.  I went home as soon as I could. It turned out that dad was finding it difficult to drive; he'd got lost a couple of times, got stuck in a car park and had a couple of minor accidents.  The neighbour told me she'd started taking mum shopping because it was obvious dad was having problems and shouldn't be driving.  After a very difficult conversation with dad I said I'd sort out the insurance and it was at this point things became more serious as I discovered dad wasn't insured - he had cancelled the policy but hadn't started a new one.  This wasn't typical behaviour but it did give me the motivation to get to the bottom of the issue and I accompanied mum and dad to a consultation with their gp.  After putting dad through lots of tests, memory clinic visits and such we learned dad has Alzheimer's.  He is 20 years older than mum, but still, neither of them ever expected he would get this because he's always been so active, eaten well and kept his mind busy.​
Picture
I organised a little support and the neighbours kept an eye on things and I  went  back to work.  It was ok for a couple of years and I slowly began to introduce more support and equipment as time went on.  Luckily the local council were supportive and helped me find telecare to support mum and also dad.  There were buzzers that sounded if dad went outside, and smoke, gas and flood detectors to alert mum to any issues.  It became obvious after that - around 5 years after dad's diagnosis - that he was deteriorating, and so was mum.  I made the difficult decision to give up work and go back home to look after them both.  I really didn't want to do this, but realistically there was no choice and now 3 years later I'm glad I did it.

​We all found it difficult at first and I had several wobbles when I unwittingly did or said something that upset either mum or dad or sometimes both of them.  I have had to 'learn on the job' and quickly realised this would be a continual process because no two days are the same.  Dad is unable to go out on his own and needs prompting to take his medication, to eat, to bathe and to dress.  I dread the day he can't cope with going to the toilet by himself because I don't know how I'd cope with that.  I have to be the buffer between him and mum at times because she can be very impatient and he can get very upset.  She has also been experiencing periods of deep depression and then I've had to call on the social worker for help because it's completely overwhelming for me.

​Each day is different and to be honest it's pretty hard going and relentless most of the time.  We do still have some laughs thankfully, like when I made a cake at Christmas and dropped it onto the kitchen floor and made everyone giggle. Mum and I enjoy classical music and I love playing the piano for her and it seems to calm dad down a little too and he gets quite enthralled at times. Once a month I go to a carers' centre for a bit of 'me time' and a neighbour sits with my parents. I really find it useful to talk to other carers.  Apart from that, I am caring for most of the day and evening although luckily both my parents go to bed early and I can relax and catch up with friends on the phone or on social media.  I also use a carers' forum which has been very supportive.

 It's not easy to take both mum and dad out unless I have some help.  Fortunately some of dad's old pals from work are still about and they take him down to the allotment now and then, or to a brass band concert in the town and that means I can have an afternoon out with mum and pay her some attention.

​I really don't know how long we'll be able to go on like this for.  All my friends are in relationships and having babies. I find it impossible to go out much, let alone to meet someone special and if I did I'd have to make them understand that for now mum and dad have to come first.  It was a difficult choice to make but I don't regret it. I've learned to take each day as it comes and to find something positive to reflect on. I'm closer now to both mum and dad than I ever was before, and I'm much less selfish, so I feel I've developed emotionally over the past years of caring for them both. I never thought I'd end up caring for both my parents - like lots of my friends, we avoid thinking this might happen one day. ​It could happen to any one of us though, at any time.


​​

Copyright © Dementia Challengers 2018
✕