After her Mum, Dorothy, was diagnosed with Vascular dementia, Carol Waddington found that there was very little support available to help her. She found herself in what felt like constant battles to ensure her mum received the level of care that she wanted for her. Carol has written a poem 'My Mother's Voice' about the experience. This is their story.
'My Mum's name was Dorothy and she was known by everyone as Dot. After marrying my Dad in 1956 they moved to our family home in 1962 where she lived for the next 50 years. My Dad passed away suddenly in 1987 and so mum had lived alone since then. I am the youngest of three daughters but both of my sisters live abroad and so mum and I travelled her dementia journey together, just the two of us.
I first noticed a difference in mum's memory at least a year before she was diagnosed. It was little things at first, she had started asking me to go to the shops for her which was unusual as my mum always enjoyed walking down to her local shops, it was a social thing for her, she would stop and chat to neighbours. It was only when I took her to a garden centre and she bought some plants that I saw that she was confused over what notes and coins to use to pay the cashier with, she really couldn't fathom it out and it alerted me that something wasn't quite right.
Over the course of that year mum's memory deteriorated further, she couldn't remember how to turn on her central heating, she lost some of her perspective, for instance my daughter had given birth to a baby boy and naturally my mum wanted to hold him but we noticed that she didn't hold him as you would expect someone to hold a newborn, her hold was loose and we almost felt as though she may drop him, she didn't seem to have awareness and it was worrying to me.
I contacted my mum's GP and accompanied her to an appointment with her and after discussion she referred her to the memory clinic at our local hospital for assessment, upon which Vascular Dementia was diagnosed.
After leaving the hospital we were not contacted again. There was no follow up with either the hospital, GP or any help offered from any organisations. We had the diagnosis and that was that, we just had to wait to see how things would progress and respond by feeling our way around for advice or support which at that time was scarce and resulted mostly in locking the stable door after the horse had bolted.
My mum never knew that she had dementia. Her older sister had been diagnosed with it and had spent 18 years in a care home. My mum was absolutely terrified of ever getting it and so when she was diagnosed I made the decision not to tell her. She had suffered a stroke a few years earlier and so we referred to her memory loss as a result of that, she would tap her forehead and say 'I can't remember things because of that stupid stroke in my head.' When, in later years, we had meetings with adult services and carers I would inconspicuously pass them a note asking them not to mention the word dementia.
Over the next 5 or so years I managed to keep mum in her own home by trial and error. Sticking labels everywhere, in the kitchen labelling each cupboard and drawer, typed out instructions sellotaped next to the front door telling her to lock it, next to the central heating on how to turn on/off, the remote control - everything had a label on it.
My mum was not a wanderer but she would leave her home with a purpose to go to the shops or somewhere but forget halfway there where she was going and on most occasions, luckily, would be seen standing in the street or sometimes in the middle of the road looking scared and bewildered by her neighbours or friend who would return her home or ring me.
We muddled on for a while longer but she had begun losing weight as she wasn't eating regularly and after taking her to see her GP she was admitted to hospital for a month and upon discharge she had a care plan in place for carers to visit three times a day for 15 minutes a visit. I was so pleased as I believed this would keep her in her own home which is something she had always made me promise and would give me peace of mind but in reality it was all a bit of a nightmare.
My mum's health mentally and physically deteriorated and after a crisis meeting she was put in respite in a care home. It was such a difficult and emotional time.
My mum lived in the care home for the following four years. In general it was lovely, very modern and the staff were friendly but there was not much attention to detail. My mum's fingernails were always filthy and it was a constant source of frustration for me. My mum had always kept her nails pristine and I felt it was disrespectful to leave her with long dirty nails. I constantly asked them to clean her nails and after meetings I had it written into her care plan but it never happened, we had to do it ourselves during visits.
As her dementia progressed she did not understand how to use cutlery. She would be seated at a dining table and her food placed in front of her but she did not understand that it was her dinner, that she should eat it and use a knife and fork. Sometimes she would pick up the food with her hands but more often than not her dinner would be cleared away untouched. After assessment adult services adjusted her care plan to include one to one feeding but it was very hit and miss as if they were short staffed they could not spare a member of staff to sit with my mum for the whole lunchtime period and I know without doubt that my mum very often went hungry.
In June 2016 my mum was transferred to a nursing home and spent her last four months confined to bed unable to walk, with dysphagia weighing approximately 5 stones and on palliative care, she passed away on October 30th, I was by her side.'
