Support our Admiral Nurse Campaign - Winnie tells her story
PUBLISHED: 15:30 04 September 2017 | UPDATED: 09:05 07 September 2017
Honiton carer Winnie Cameron’s life changed when her husband was diagnosed with dementia. This is the first of a two-part account penned by her...
I have been surrounded by dementia for most of my life.
My maternal grandmother died when I was 12 years old, having spent six years in an institution for demented patients.
I never knew she had dementia - just that she was ‘not all there’ as they used to tell me, and immobile from a huge stroke.
We visited every week and it made a huge impact on me to see here like that.
The second person I came across with dementia was my late husband’s cousin.
She lived in the Cotswolds so we only visited three times a year.
We knew she had memory problems which was called ‘impaired memory’, but not that there were lots of other things she could no longer do.
She desperately wanted to have her ashes taken to Scotland and be placed with her two sisters, but had only my husband to do this for her.
We promised to take her there to arrange it all and booked a holiday there for a week.
What we did not realise, despite having been warned by her carers, was that she would change her mind several times about this holiday because it was out of her comfort zone and she could not cope with it.
We never went and lost all three deposits on the holiday.
A cousin by marriage of my late husband followed with Parkinson’s dementia, which was quite terrible with his hallucinations and very strange behaviour that no-one could understand.
He spent the end of life at The Bungalow in Honiton and received wonderful care by the very professional staff.
Had we known then what I know now about dementia, I could have been of so much more supportive to his wife and family, who were all seriously struggling during this period.
In 2003 my late husband had his first stroke and it was a huge shock to us all.
He had retired at the very end of 1999 and was about to enjoy his retirement. It left him with vascular dementia but no-one explained to me at the time that this was or would be the result.
His vocabulary completely changed - he would often answer the opposite to what he had wanted to say, but thought in his mind that he had used the right word.
It is called word association when they pick a word from the same family of words like ‘yes’ and ‘no’ instead of the correct word.
This of course caused endless amount of frustration on both side and quite a few confrontations.
I never realised for a long time why this was happening so got really annoyed with him at times.
My husband made a reasonably good recovery physically, but continuously worried about having another stroke.
A scan was promised by the doctor but after having waited for six months or more, we questioned the wait - only to be told the procedure was no longer done on the NHS.
We went private the next week and were reassured there was no more furring of his arteries than expected at his age.
My husband’s condition eventually improved enough for him to drive again, but he never mastered going shopping without coming home totally confused and very anxious.
If the shop changed something around on the shelves, he would come home without anything at all. Changes were a complete no no, as routine was everything to him.
If I left a list of jobs, he would start the first one on the list, get exhausted by this task, and drop off until I returned from work -. much to my frustration and annoyance with little understanding of his situation.
In 2006, my husband had a huge stroke which left him completely paralysed on his left-hand side, with severe brain damage and fighting for his life for months.
You can imagine how I felt when the consultant asked me if I wanted to save my husband if possible and what he might have wanted.
Needless to say, we had never had that conversation, but should have done
I did know, however, that when my dear late son Steven was on life support nine year earlier, he begged the doctor to save him regardless of how it would leave him, and promised to care for him for the rest of his life. This knowledge was enough for me.
I knew I had to do the same for my husband.
He spent three months in the Royal Devon and Exeter Hospital stroke unit followed by three months at the now closed Stroke Unit in Budleigh Salterton.
The OT department there were incredible and did everything possible to get my husband standing (weight bearing) perhaps even walking but to no avail.
They all insisted he had to go in to a care home and said I would never be able to care for his needs at home.
I challenged them to the end and in August 2007 I brought my husband back home.
For us, it would be a very different life...