'I had no one to turn to' - Frank's Story
Frank’s Reflections & Story
This is the manuscript for a speech tide member and supporter Frank Arrojo gave at the Alzheimer’s Show in 2017.
“Over the next few minutes I am going to tell you a bit about my story, how I cared for Mum who lived with vascular dementia.
I will be focussing on what I consider are the key points I learnt in managing Mum’s final few months as her dementia progressed – which had a detrimental impact on her quality of life.
But first here is a photo taken in 2003 of Mum and I. What the photo does not tell you is that Mum had already been living well with dementia for several years. Not only that – but she was living with other conditions as well, including renal failure which resulted in a kidney transplant. And so people can and do live well with dementia.
Now I am going to fast-forward a few years to 2006, when the caring role I adopted radically changed – when Mum had a major stroke. Suddenly I went from a position of just helping Mum with the odd task at home and managing her finances, to one of:
being responsible for her personal care,
her rehabilitation, and
the running of the house.
My sole purpose in caring for Mum – which began in my late 20s – was simply to enable both of us to continue to live as independent and fulfilling lives as much as possible. I realised in making this decision that my life – and my aspirations – would radically change over the coming years.
But what i was not prepared for and nor understood was:
• The constant requests to go back home to Spain and see her mum, who had passed away many years earlier;
• Her refusal to take her medication; and
• Worst of all, when she stopped recognising me as her son.
So much so that I “cried out for help” from our GP, and tried to explain to her what was going on. But the GP was simply not interested. I was in shock, because i did not know what to do, and had no one else to turn to.
And now I realise I made one of my biggest mistakes – in not going to back to our GP, because I had lost confidence in her. Because it would be more than 3 long years before Mum was eventually diagnosed with “severe vascular dementia”; just a few months before she passed away. And suddenly I was referred to support available to me, in the form of a local admiral nurse service. I had no idea such support even existed in the first place.
But at the same time you could say i was lucky in a couple of respects:
– because Mum wanted me to help me manage her finances, I already had power of attorney; and
– because of our close relationship i knew some of Mum’s wishes in terms of how she would want to be cared for, which was at home.
However, by the time the diagnosis was made – and we began to receive support – Mum:
• had lost her mental capacity;
• she was double incontinent; and
• she had trouble eating and drinking.
And although this support was late – it was absolutely vital in terms of building my self-confidence in helping better care for her, and in effect better manage Mum’s end of life care.
For example, prior to receiving this support I dreaded Mum being admitted to hospital, because of the previous experiences where staff struggled to care for her. However, the final time Mum was in hospital, was a different experience for both of us. Because of the support I had received I realised I knew Mum better than anyone and so I ensured –proactively – the staff listened to me. And as a result Mum was much better cared for, and her length of stay this final time was much less than on the previous occasions.
By this time I realised the best thing I could do was to enable Mum to:
• Continue to live at home – in her bedroom in accordance with her wishes (which from her behaviour became very apparent); and
• Keep her as happy and comfortable as possible.
And so a few weeks later at home – on her 78th birthday – Mum had a seizure which resulted in her passing away, in her bedroom, the place she wanted to be. This was – for both of us – the most appropriate birthday present, because by this time her quality of life had deteriorated dramatically.
However, when the paramedics came I realised I had made one final mistake. I did not want them to try and resuscitate Mum, and had assumed the power of attorney would be enough. But they had to try, because no advance decision was in place.
And so if you are caring for someone living with dementia this next slide summarises the key points you need to consider, which is based not just on my experiences but also those of other family carers I know from the support groups I run.
• Access the support available – whether it is a dementia advisor, admiral nurse, etc., because I cannot stress enough how valuable this was for me in terms of information, advice, support and planning ahead.
But remember you cannot access this support unless the person you care for has a confirmed diagnosis.
• Make sure you have timely discussions to establish what are the wishes and desires of the person you care for. For example:
oWho do they want to be responsible for managing their affairs (if anyone) – financial and healthwise, which may involve making a lasting power of attorney
o Where do they want to continue to live in later life (in which setting)
o Where do they wish to spend their final days
oWhat are their views in terms of their treatment options for end of life, which may involve making an advance decision or statement.
Remember that issues such as culture, religion, etc. may be a factor here.
And an issue that is not often mentioned:
• Remember to consider your own wishes for your end of life – and plan for the eventuality in case you pass away before the person you care for.
These are not easy issues to deal with, especially at a time when you are under the most intense emotional, mental and physical pressures.
Also, at the same time it is likely that you have already begun to grieve for the loss of the person you care for. And all of this may be compounded by other factors such as relationships with other family members, and contacts with health and social service professionals.
Finally, what I now know is if Mum had received a diagnosis of vascular dementia in the early days then our lives would have been so much better, because:
We would have had time to understand, and better plan and prepare for what may come.