How to Live With Dementia: A Practical Guide from a Caregive and Daughter

By Lindsey Rowe

From my own experiences of looking after my dear Mum 'Andy' who had Parkinsons and Lewy Body disease, including Alzheimers as her condition deteriorated, this ebook is written to help others who are looking after a loved one with dementia caused by any of these diseases. This book is full of practical tips and strategies I used to keep mum comfortable and content in order to enable her to have the maximum quality of life. Many of my techniques, will I hope, help you as a carer to cope better, make a significant difference, and in doing so, make life easier and happier for all concerned in difficult times.

• Language: English
• Publisher: Lindsey Rowe
• Release date: Mar 17, 2014
• ISBN: 9781310084317

Book preview

Introduction – Why I’m Writing this eBook

N.B: 90% of this eBook was written between August and November 2012, before Andy’s health sadly took its final turn for the worse. As Chapter 16 details, Mum’s last few months were fraught with vast swings in her condition. Much of this time was spent in hospital, but following the fitting of a PEG feeding tube (percutaneous endoscopic gastrosomy) she was able to at least spend some time at home, her childhood home where she was born, lived, and ultimately died in the early hours of the 13th December 2012.

Lindsey A. Rowe, 04-01-13

Written in the South West of England in 2012/13, this eBook is dedicated to my wonderful 86 year-old Mum Andy who has never in her entire life ever let me down. She’s both my Mum and my best friend and she’s always done everything possible to make my life happy, fulfilling and secure. I will always be grateful to this wonderful lady who has been such a positive role model in my life - someone who I admire greatly and love unreservedly. You can meet my Mum on video here, on YouTube or Vimeo. (Vimeo password is Andy2012)

Sadly for Andy in 2001, after working hard to the age of retirement, she started to show the signs of Parkinson’s Disease and to this present time, October 2012, this has progressed to the point where she is unable to do anything for herself and is totally dependent on others for her care.

Lewy Body Disease also presented itself along with a series of TIA’s – Transient Eschemic Attacks (mini strokes) a few years ago to further complicate Andy’s condition, which, she has never complained about.

I’m writing this eBook to help other people like myself who are looking after a loved one with similar conditions. This book is full of the strategies and practical tips that I use to keep Mum comfortable and content in order to enable her to have the maximum quality of life.

Many of my techniques will, I hope, enable you as the carer to cope better and in doing so, make life easier in difficult times whilst delivering what is required by those you hold dear.

You need not feel an overwhelming sense of hopelessness because you really can cope with the right guidance and help. It’s just a case of knowing how to access it, both in this book in general but also from the agencies and charities that exist. I will devote a chapter of this eBook on just that – how to go about finding the right help and support (Chapter 15).

I could not write any sort of introduction to an eBook such as this without a heartfelt thank you to my partner Hugh. His unwavering and utterly selfless support is what has really made it possible to keep Mum at home, and I cannot thank him enough - I genuinely could not continue to look after Mum as I do alongside running the family without his loyalty and kindness.

My most grateful thanks also go to a dear family friend, a University scholar, 18 year old Alex Everett for his massive input into this eBook which, at times, has been a daunting prospect. His ability to edit so concisely whilst undertaking A Levels and Higher Education studies of his own just goes to prove what a bright and motivated young man he is. His enduring patience and support has kept me on track when at times, I’ve wavered.

Not only should my tips and strategies help to make a positive difference, but my intention in writing this eBook is that you will have the tools and the skill-set to really provide for the person you hold dear, and I wish you the very best of luck in that respect.

Lindsey A. Rowe, 11-10-12

Chapter 2 - Coping With Parkinson’s, Alzheimer’s and Lewy Body Diseases

Andy at the canal banks - one of her favourite places which helped alleviate the torment from her conditions (as with the following pictures)

My dear Mum first started showing the symptoms of Parkinson’s Disease in 2001. I was led to understand it’s the nervous system not doing its job properly caused by a chemical imbalance in the brain - a shortage of the chemical ‘dopamine’.

Until that point, Mum had lived a very full and active life. She never stopped from the moment she woke to the moment she fell asleep. She’d worked incredibly hard right up to the age of 76. She ran the family business for my ailing grandparents, while she cared for them and brought up my brother and me. She was unstoppable, motivated, selfless and always positive - no matter what.

At a time when she should have been enjoying some quality time to do some of the things she’d missed out on, she started to show early symptoms of Parkinson’s that included tremors, slowness of movement and rigidity. I remember very clearly Mum’s GP telling me that she was showing signs of depression and at first, I just didn’t believe him even though I know it’s a symptom of Parkinson’s. How could someone so positive like my mum ever have depression? She’d never had anything like that in her life. I thought he’d been mistaken in suggesting her rigid facial expression was caused by the Parkinson’s and depression - to be honest, I hoped he was mistaken. Nevertheless, as her condition progressed, I had to accept that he could well be right.

As time went by, the symptoms grew worse. Parkinson’s is a degenerative disease with no known cure and she was finding it increasingly difficult to perform everyday tasks as her mobility was badly affected - it was degenerating! I’d have to prompt her, repeating clear instructions over and over again to put one foot in front of the other just to walk. Doorways were a problem and she’d freeze and be unable to move at all. A shuffle was usually all she could manage.

Mum was having memory problems and signs of dementia were become more apparent. She was experiencing an inability to maintain her balance and she started having frequent falls. Although very sleepy by day - the sleepiness would impede her daily functions and quality of life - Mum was finding it hard to sleep at night and in desperation, I had to ask her doctor for medication. Her nights were disrupted which meant that ours were too. Mum was in and out of bed throughout the night - it was exhausting for us all. To make matters worse, Mum complained of restless legs and this also made restful sleep impossible.

Hallucinations were frequent and Mum had almost daily sightings of her long-dead pets around her bed. I rather took comfort in the knowledge that she would be happy to see them. They had been such a large part of her life and in her hallucinations, they seemed to be moving and I took that to mean they were alive in her