Dementia is not simply a loss of memory. It is something much deeper and more significant. It involves the gradual, or sometimes rapid, loss of memories, faces, names and moments. It changes the way we communicate. It means no longer being able to share with your parent all those moments you once experienced together. It is an illness that affects every member of the family.
In my own life, dementia knocked on my family’s door twice. First, my father became ill, and then my mother. I cared for my parents for approximately nine years. Although each journey had similarities, there were also differences, challenges and losses, particularly emotional ones.
What made me ask “Why?”, feel angry and cry, beyond the illness itself, was the loss of communication after a certain point. It was incredibly difficult to look at my parents, whom I loved and still love so deeply, and be unable to exchange even a few words with them.
Finding New Ways to Communicate With My Parents
However, I came to understand that communication can happen in other ways too, through eye contact, a gentle touch or simply saying, “I love you.”
When my mother also developed Parkinson’s disease and later dementia, I found myself facing the same difficult reality all over again. Essentially, I had no time to grieve for my father before my mother became ill. Although she did not have the same health problems as my father, such as diabetes and near end-stage kidney failure, her Parkinson’s disease meant that I had to be constantly careful to prevent her from falling.
The Importance of Having Someone by My Side
There was something different about this second journey. After my father’s funeral, I met my husband, and my life changed. He became my support and helped me face this difficult period. During my father’s illness, I had gone through that journey alongside my mother. With my own mother’s illness, I now had my husband beside me.
Through this experience, I truly understood something my parents had always told me: how important it is to have someone by your side, so that you are not alone. When my mother became ill, shortly before I met my husband, I was living alone, and that period was frightening. I do not know what things would have been like if I had met my husband while I was caring for my father. Back then, we were constantly going in and out of hospitals, whereas that was not the case with my mother.
Having my husband beside me when my mother passed away was incredibly important. I honestly do not know how I would have coped afterwards without him. His presence and support meant so much to me.
A Wedding Day I Will Never Forget
The most moving memory I hold on to is my wedding day. It was the only and last time my mother understood who I was and what was happening around her. She was incredibly emotional. After that, her body gradually began to give way, and one year later she passed away. The day of my wedding anniversary was also the day of my mother’s 40-day memorial service.
Through this experience, I understood how important support is for family caregivers. They need support not only from doctors but also from other professionals, so that they do not feel alone. I would like every society to understand the full impact of dementia, because behind every person living with dementia there is a son, a daughter, a spouse or someone else who is trying to adapt to a reality they do not know how to navigate, and who needs someone to talk to and help them.
If I could offer one message to caregivers, it would be this: keep talking to your loved one, even if they do not understand what you are saying. Because one thing I hold close to my heart is that love never forgets.
About the Author
Tina is a family caregiver who spent approximately nine years caring for both of her parents through their experiences with dementia. Through her personal story, she hopes to raise awareness of the emotional challenges families face and the importance of love, communication and support throughout the caregiving journey.
Further Reading and Support
Caring for parents with dementia can bring many emotional and practical challenges, particularly as communication becomes more difficult. For families looking for additional guidance and support, the following resources may be helpful:
- ReaDementia: Our guide to dementia and communication offers practical suggestions for maintaining meaningful connections with loved ones.
- Alzheimer’s Association: Their guide to communication and Alzheimer’s provides helpful strategies for communicating throughout the different stages of dementia.
Editor’s note: This is a personal account of dementia caregiving, shared with Tina’s permission. It reflects her own experiences and perspectives. Every family’s journey with dementia is different.