When my nan was first diagnosed with dementia there was no such thing as a home care package as we know today, so support came mainly from my immediate family. We created our own dementia care plan, where we had to learn about caring for dementia patients at home through our own experiences. Like most people, I turned to my friends for support and although they had none of my experiences with dementia, they were all happy to listen to me, and this gave me great comfort.
I remember back when I was in high school, we learnt about the five stages of grief; denial, anger, bargaining, depression, and acceptance. Our assignment was to write and illustrate a children’s book that outlined the five stages of grief, to prepare a child (ourselves) for death. It wasn’t until later in life that I really understood that grief can strike you in a number of different forms and did not just relate to death.
I have previously posted my story of dementia from nan’s early diagnosis to its cruel advancement. I honestly believe that throughout my journey with dementia I have experienced all five stages of grief, and although my nan is still with us, I have had to grieve the relationship we once had. Looking back now on my nan’s diagnosis of dementia I see how important it was to let myself feel every emotion that came with every stage of grief. As it was only when I reached acceptance that I could truly make room for a new relationship with my nan and learn to build a new normal, that allowed for us both to feel happiness and joy.
My mother has (and continues to) do an amazing job in caring for my nan. Part of our dementia care plan is that my mum always makes sure that nan has the very best of care in all forms of her wellbeing, whether that is medical or allied health services, hygiene and nutrition or just general happiness. Nan has been living with my family and I for many years and she has advanced in her dementia very quickly. Although things are not, and will never be the same as they once were, I was and am happy with my relationship and home life with my nan. I had grieved my old life with nan and accepted my new one, and I thought that would be the end of my grief.
A few years ago, one of my friend’s grandparents was diagnosed with dementia. Naturally, I felt devastated for my friend, and as I had lived this reality, I knew just how hard this road would be. My friend’s family thought it would be best for their loved one to enter a nursing home upon the diagnosis of dementia. I know firsthand how hard it is to look after a loved one with dementia, it is no small undertaking, and it is not for everyone (for a number of different reasons.) I had made no judgements on this decision as it is personal and not for anyone else to decide. I thought we would be able to support each other, but instead, my friend decided to direct the grief and guilt that should have been directed at dementia itself, at me. My friend tried to make me feel guilty for the fact that my family and I took care of my nan at home, trying to convince me that we could not provide the same level of care as a nursing home.
I understand that these words were said out of grief and personal guilt, but they were cruel. Practically as I was dealing with my nan not always knowing who I was while living in my family home, always saying things like “when’s that girl going to leave”. Receiving such deflected negativity from my friend pushed me back into my own grief. I was angry, it was bad enough dealing with the realities of dementia, without also dealing with such ignorance and the guilt of others. I know that nan has always received the best of care in every aspect of life. There are days when my nan is really with us, she knows who we are and she thanks us for looking after her and says how lucky she is to be with her loved ones. My nan’s words will always outshine the ignorance and grief thrown my way (whether it be my own or some else). My nans underlying loving nature is stronger than her dementia and it will always lead me back to acceptance.
We are lucky now that there are home care packages with a thorough dementia care plan and people dedicated to in-home aged care. Through home care packages there is now the help and support for us and our loved ones. Home care packages allow us to keep our loved ones at home for as long as possible through in-home care services. Finding the right age care package with an appropriate dementia care plan was a matter of finding an age care provider that demonstrated a true understanding of my nan’s and family’s needs.
With dementia there is always a new challenge, I still rely on the support of my family and friends, but now have the backing of an age care provider dedicated to helping my family with my nan’s health and care. This gives me the confidence and freedom to learn when to block out the white noise, and enjoy my time with my nan.