Dementia is a progressive condition and as an individual’s cognition declines and their independence reduces, it is often the carer who must provide added support to enable the person with dementia to live well at home. However, as caring responsibilities increase over time, carers can experience increased anxiety and stress.
Post-diagnostic support for carers is incredibly important and a vital component to a good care plan, as carers need their own support in order to enable them to continue in their caring capacity. An essential component in this is providing clear information on dementia, including: how the condition progresses, what to expect, communication skills and how to deal with behaviours as they change.
In the following blog, Shamayne Leelawati shares how her journey of caring for her father changed significantly after COVID-19 and during that time, what she came to understand about post-diagnostic care and support for people living with dementia.
When dad was first diagnosed with dementia in 2011, little changed in our daily lives. He could still do a lot on his own including exercising and taking his medications on time. Doctors suggested we look at old photo albums and get him to socialise more.
As his needs increased over the years, I incorporated more things into his daily care requirements, but not without a lot of struggle – I couldn’t get the support I needed and had to manage with a lot of trial and error.
I got married in 2013 and moved to the Middle East to live with my husband. However, six months later, I had to give up full-time employment. It had become clear that I needed to travel back more often than I had originally expected, in order to look after my father.
As such, I began to freelance as an editor and project manager, so that I would be able to work remotely while I was back home caring for dad. Often, these trips back would mostly involve having to train a new caregiver and be present for important doctor appointments which I would schedule in advance.
I made it work despite the challenges but COVID-19 brought an entirely new meaning to the word ‘challenge’.
Post-diagnostic care after COVID-19
The full impact of what it took to care for him didn’t come into effect until COVID-19 struck. By this stage, keeping dad in optimal health was a full-time job, accomplished with the support of a string of hired help. But having to do it alone during a global pandemic, while also giving up my life as I knew it, sent me on a different life trajectory.
There was still so little I knew about the effects of dementia despite having cared for him in different capacities for over a decade.
My real struggle during the lockdown only exemplified when dad’s needs shot up almost overnight. With no social activities to keep him occupied and a disruption to his routine, not to mention my deteriorating mental health, I was at wit’s end trying to give him the best and to stay afloat in a topsy-turvy world.
The first issue I needed to address was finding physical activities which we could do at home since he could not attend Tai Chi classes or go for his regular walks every evening. So, I started to turn to YouTube for help, where I learned techniques and a series of different exercises that I could use with him daily.
There was also the social isolation. He could no longer attend church services or meetings. I had to step in and come up with a different care plan to keep him engaged. This included playing board and card games with him, and singing and dance sessions. Although what he really needed was to talk to people. Frankly, I was too tired and resentful to have any conversation worthy of his well-being.
The job of cooking, cleaning and caring for both my parents during this time amplified when dad’s symptoms worsened with night-time ‘accidents’ and getting dressed for ‘work’ at 3am. This meant that I now had to stay awake during the nights to ensure that he was safe. This round-the-clock work was too much to bear, and there was no one I could call on for help and no chance whatsoever for a break.
One particular night, a friend had to break curfew rules when I needed help to lift dad from the bathroom floor. That was when I started sleeping on the floor in dad’s room as it was time for 24-hour care.
Changing the post-diagnostic support landscape
I refused to believe that I was the only daughter in this world who was experiencing this emotional, physical and mental turmoil, so I set out to learn and decided to share my story.
I first started by becoming a certified Love To Move (a series of cognitive-enhancement activities designed by the British Gymnastics Foundation.) deliverer. I stumbled upon this on YouTube and because I saw the positive effects on dad, I decided to get certified in the hopes of perhaps supporting other families one day. I also decided to take up a series of several short courses on dementia for my own learning and understanding.
On dad’s 85th birthday in April 2021, I did our first post on Instagram and Facebook. I started sharing about our journey and created a website offering my services as a Love To Move deliverer and a mental fitness coach. My social media sharing caught the interest of the local media, and in September 2021, our story was featured in the national English daily, and this was followed by national radio and TV interviews, among other things.
When strangers started approaching me, I knew that I was not alone, and that there are many like me looking for support or even just to connect.
I eventually decided to become a certified Dementia Care Specialist to support other families more credibly as I was constantly approached for advice and suggestions.
There is a lot of work yet to be done, and there is so much more that I hope to achieve, but I’m taking it one baby step at a time.