For two years my family and friends had been asking me to write an account of the journey I made with Joan through Alzheimer’s disease. It wasn’t until Chris Pomfrett, a neurophysiologist, and I discussed the end product that he persuaded me to write the story and he would intersperse the probable neurological reasons for the symptoms. Given my natural logic in discovering ordinary solutions to cope with the extraordinary challenges of the illness we would then have a small book of use to families and carers and to healthcare professionals given the scientific inserts. A nurse or GP will see a patient for a few minutes in the surgery but to get a holistic view of the patient’s life could make a tremendous difference.
The development of Alzheimer’s disease is a slow, insidious process and the early symptoms go unnoticed or are excused by family and friends. My wife, Joan, was no exception and it wasn’t until she had a series of falls followed by visits to A&E that she was referred to the Falls Clinic. After a scan they noticed irregularities in her brain and transferred her to the Memory Clinic where she was diagnosed with Alzheimer’s disease with Parkinsonian symptoms. By that time the disease was established in her brain and it was too late for medication. To come to terms with the realisation that we had many years of slow disintegration of mind and body was extremely traumatic. However, I decided I would nurse her at home until her death, which occurred ten years later.
At the start of the journey you will have a lifestyle that is normal, but problems will arise and normal will change.
An engineer’s view
As the disease progressed everyday activities became increasingly difficult: dressing and undressing, moving from room to room, bathing or getting into the car. I am an ex-design and trouble-shooting engineer and as such, needed maths, science, patience and logic to be able to do my job. In caring for Joan I needed that patience and logic to work out alternative methods of completing day-to-day tasks.
Before starting any task I would go through it step by step in my mind’s eye taking into consideration Joan’s abilities and disabilities. If the normal method wouldn’t work then I would have to devise a Plan B. I realised that to embark on Plan A without knowing the outcome would result in disaster. For example, moving from room to room became impossible because her damaged brain could not process the different colours and textures beyond the threshold and she would become frightened and refuse to go through. The alternative was to sit her in a wheelchair, place her hands in her lap, keep eye contact, talk to her and propel her through backwards. Once in the new area that then became the norm but she would be unable to return to the previous room without the use of the wheelchair.
Advice to fellow travellers
The most useful advice I could give would be that at the start of the journey you will have a lifestyle that is normal. Problems will arise and normal will change, it will become more difficult but one adapts until the new situation becomes normal and so it goes on forever changing and evolving as the disease spreads through the brain. Normal continues to get harder and will escalate to a new level but in every case one adapts again and again as normal becomes more and more difficult. By the time you reach the end of the journey and look back you will be amazed how far you have come, how much you have learned and how much you have achieved. Also, remember that you are not alone; there are many thousands of fellow travellers.
No one should have to make the journey through Alzheimer’s disease, not as a patient nor as a carer, yet there are 820,000 people nationally diagnosed with some form of dementia who are doing just that. Since my wife’s death I have worked to raise awareness of this disease and to raise funds for Alzheimer’s Research UK. To that end Chris and I paid for the publication and printing of the book so that when a copy is bought that money also goes to Alzheimer’s Research UK as a second donation.
Alzheimer’s: An Engineer’s View, published by Stellar Books.
The e-book is now available at £1.53 or $2.99.
Hard copy priced at £7.50 and can be ordered online at http://amzn.to/1mv8r2k.